Marlakins

Marla's adventure from Aplastic Anemia and beyond

167 Comments

1. patti said,

   January 2, 2007 at 11:00 pm

   Welcome to 2007! Wanted to update on what’s going on with mom.

   After some reading on the MDS forum last week about some folks seeing their white and red cell counts drop as a result of the Exjade I went back into mom’s notebook and discovered that hers, in fact, have also dropped since she started taking the Exjade for iron chelation. Prior to Exjade mom’s total white cell count was pretty steady at 1600. ANC’s at 600. After Exjade her white cell count went to 1000 and ANC’s to 300. That’s with two shots of Neupogen a week. This is of great concern as mom needs her white cells to fight any possible infection that might come along.

   The pickle this puts us in is that the iron overload (mom’s ferritin was around 3300 at last check) is already damaging mom’s liver and kidneys. But she needs her white cells. After talking this through with Marla mom and I have decided that the next best course is to do the desferal via her picc line two or three times a week. I did not think mom would agree to this but in talking to her she was all for it because she understands the need for those white cells! The difficulty may come in convincing her doctor, which we will attempt to do next Tuesday. I am heartily praying God’s grace will cause her to allow us to do this. They are not fond of desferal since Exjade came out and I’m going to be hard pressed to prove to her that it’s causing mom’s counts to drop too low. Mom thinks her increase in transfusion rate from 3 weeks to 2 weeks is also Exjade caused. It’s possible. Folks on the MDS forum are seeing both lines drop. So I will update on this issue next week after we see the doctor. In the meantime, mom has dropped back the Exjade to 250mg. a day from 500mg. And to think they wanted her to take 1250mg a day!!! Eeeks.

   Mom saw Dr.Kou this morning and we explained the chelation issue to him again. Apparently mom hasn’t been doing the mung beans daily and Dr.Kou asked her to please do that. He said it will help protect her liver and kidneys from the iron overload as well as help out a little with the chelation. He didn’t do much moxa today and we were a little disappointed with that. He did some, just not his usual.

   Mom got another round of platelets from one of our direct donors. She did great with them! I cannot thank Raja enough for putting his time and energy out for her. Last time she got four or five hives from them. This time we infused them over 1 1/2hrs instead of an hour and she didn’t get a single hive. We also have cut back her pre-meds to 500mg tylenol with the 25mg of IV benadryl and she no longer is getting knocked out. Apparently the drug interaction of the tylenol at 650mg and the benadryl were what was knocking her flat. We always thought it was the benadryl alone.

   The only other oddity to today was mom’s blood pressure was excessively high. Couldn’t really find a reason. It was high like it is when she needs blood but since she got blood last week we didn’t know what to think. We’ll just watch it. Usually when she’s this high it means she’s holding fluid but her ankles aren’t swollen and her stomach isn’t hurting from fluid overload so who knows? We’ll just watch and wait.

   So after that it was only 1:00pm!!! What would we do with ourselves? We did what any self respecting MIL and DIL would do when they have time together to do whatever they wanted – we went to lunch together for the first time in eons!! Then we went shopping. : ) She felt so good today and I could tell she’d do well. It’s been so long since mom and I spent any time doing anything fun. It’s always doctors. On the days I’m home, I need to be home so I don’t go anywhere with her anymore. We had such an enjoyable time today. I spent some of my Christmas money from her (which she enjoyed watching immensly!) and we went shopping for a new piece of furniture for her, and a video tower and a new glider rocker for me. No success in the latter category but we vowed to keep looking. We didn’t get home until 5:00 but the afternoon was so much fun together and we both said how fast the time went. It’s rare that we get any time left over on a Tuesday but we’d both love to do this again. Especially the furniture thing! I gotta get me a new rocker. Momma’s rocker is way worn out and daddy has it held together screws and such. I’m weird though. I’ll shop for exactly what I want and then aim for as dirt cheap as I can get for what I want. But in this case – dirt cheap is still going to eat up the rest of my Christmas money. : ) Mom was a little generous this year.

   This day, started my 2007 off rather nicely. : ) I’m so thankful for the time mom and I had today to just enjoy one another again. Ron was so overwhelmed at home but just told us to go and enjoy. He was very sweet. : )

   And the funny for the day (he didn’t think it was so funny at the time). On Tuesdays the only way Ron gets a shower is to have Marie “watch” the kids until he can jump in and out of the shower. He called to tell me he was getting in and wouldn’t be availabe for a short time. He was suds upped and a scrubbing when he heard horrid banging that wouldn’t stop. He flew out of the shower and came down stairs hollering just sure that the kids were tearing the house apart! As they sat their quietly playing he was freaking out at the noise and they calmly told him, “the roofers are putting shingles on the roof daddy.” Ummmm. They weren’t supposed to deliver the materials until tomorrow (I specifically told them NOT Tuesdays). Ron is just positive (and so am I for that matter) that they will be putting this roof on on a Tuesday. NOT what he wants or needs. But he is just bracing for it. He finally did get to finish his shower after all that. : ) But for a change it wasn’t the kids tearing the house apart. : ) Pray for some dry weather next week. The materials are here but we can’t rip off and shingle until we’ve got two dry days in a row. We’ve got a big roof and they need that much time.

   Have a good eveing folks. Until next time……

   patti

2. Andrea said,

   January 3, 2007 at 12:23 pm

   What a wonderful, uplifting post, Patti! So glad you and your mil got to have some Fun for a change! And thank God for forums, eh?–so we can do a little research on our own on behalf of our loved ones, and ease their suffering. It was the AA forum that gave me the information that supported Rob in declining transfusions unless he was under 10K. The benefits of this–he has been tx-free for 5 months, and he went to Dominican Republic!! I’m filing that Exjade info away in the back of my brain should it ever become relevant.

   Love the shower story. When the kids were young, I hopped out a few times, sudsy and dressed in a towel, to investigate. Feeling rather silly.

   Rob is back at work. Since he feels that overwork majorly contributed to his illness, he is determined to keep it down to 4 hours/day. I asked him how he did yesterday, and he said “About 6.” It’s going to be a challenge for him. But when I left for work at 8:45, he wasn’t even dressed yet, so that’s a good sign.

   May you find the ideal rocker!

   Andrea

3. patti said,

   January 3, 2007 at 8:16 pm

   Andrea,

   It’s nice to have good news once in awhile, huh? What a blessing that Rob is doing so well!! I agree with the stress thing and illness. You can really help keep your pulse on his stress. Sometimes our husbands lose sight of just how stressed they are until we tell them, ask them, or encourage them to stop and ask themselves if they’re overdoing it.

   And yep, I’ll celebrate when I’m happily rocking in my new chair for family devotions. : )

   Patti

4. Administrator said,

   January 4, 2007 at 9:45 am

   Hi Ladies! Yes, it is nice to hear good news! And just to think that not long ago your MIL could barely walk around and had to sit and rest for a long time while out. Such fantastic news to hear that she was able to shop with you from 1-5! Four hours!

   I second Andrea, good luck finding that perfect rocking chair! A good chair is a blessing! There’s nothing like being comfortable!

   Funny about the shower. I think we’ve all run out unexpectedly at one time or another, ha! Burrrrr.

   I agree with Patti, Andrea. Rob needs you to help him “not” overdo it! I know it’s extremely important for guys to stay busy, so definitely not suggesting you put him out of commission, but just to make sure he rests and has enough down time to compensate for all his up time. These guys are lucky to have such caring, loving wives! Hehehe.

   Okay! Have a wonderful day!

   Marla

5. Andrea said,

   January 7, 2007 at 3:31 pm

   Hi ladies–I seem to remember a discussion of cortisol levels and adrenal stress on Chronicles of Steele?–I just browsed through to see if I could find it but no luck.

   Reason I’m asking is, my lovely friend at church (under the care of a naturopath for complications of Lyme disease) discovered that her cortisol levels are way way out of whack. Seemed to remember you-all knew some things about this phenomenon that could help her.

   Andrea

6. patti said,

   January 7, 2007 at 11:06 pm

   Andrea,

   Oh yes! Much discussion on adrenals. Is your friend’s cortisol too high or too low? Too high (I mean really high) could indicate cushings disease. Too low could be Addisons. Or in my case, really close to Addisons but my glands haven’t shut down yet (Thank God!).

   Can you find out what her levels are? Too high or too low? The treatments for each are different. Mine is always too low so I use a bovine adrenal cortisol supplement. It’s basically just cortisol but it also nourishes the adrenal glands. DGL licorice is good for adrenals if they aren’t too shot. It doesn’t work for me anymore. DGL licorice has to be taken one week on, one week off, etc. etc. NO NO NO caffeine of any sort. It kills the adrenals. Following a diabetic diet like the one from Dr. Richard Bernstein really helps the adrenals also. And, of course, avoiding stress and getting lots of rest. I know people say those things flippantly sometimes but I know for me it’s really true. I crash when my body undergoes any amount of stress or I don’t get enough sleep (which is almost always). We notice when we are on long motorhome trips (3 weeks or longer) that my body does a tremendous amount of healing because I’m just resting most of the time. It really does help.

   That’s the only advice I can give you until I know if she’s hgih or low. Let me know and I’ll throw the rest in.

   patti

7. Administrator said,

   January 8, 2007 at 7:47 pm

   Hi Andrea: Yes, a whacked out cortisol level can cause much grief! But as Patti mentioned, how you approach it would depend upon which way your cortisol is going–too high, or too low. On the opposite spectrum of Patti’s cortisol problem (hers is too low), there is a book called The Cortisol Connection by Shawn M. Talbott, which deals with cortisol too high. I wouldn’t say it’s the best book, but it does give some insight on the problems of too high cortisol. Apparently, too much cortisol production can be linked to stress. During times of stress, the body naturally puts out steriods to deal with the added energy needed. Problem comes when you’re constantly stressed and the body is constantly pouring out all these hormones. Can cause lots of damage since the body isn’t supposed to be pouring out excessive amounts, but only for a short time during emergencies, etc. As you know, if she choses to go natural or alternative, doing a combination of things will be necessary to get it back on track. If it’s too high, then diet adjustments should help as well as stress-relieving techniques, etc.

   This brings to mind some of the stuff I’ve been learning about herbal medicine. One thing is that for “chronic” conditions, a combination of herbs is likely necessary, whereas an acute condition can sometimes get along with single herbs or single treatments. The idea behind that is once a person has a chronic condition (i.e. the problem has been going on for a long time already), then likely several parts of the body are now affected, thus needing various herbs to target the different things. During acute conditions, it may be possible that a single herb or simple treatment can work because the problem hasn’t gotten too deep yet, nor affected other parts yet. I thought that was interesting, and helps to explain the different herb combinations.

   Okay, let us know how she’s coming along. That’s so nice of you to do some research for her!

   Take care!

   Marla

8. Andrea said,

   January 9, 2007 at 12:33 pm

   THanks ladies, I knew I could count on you! Her cortisol is too high. She has had a lot of stress with her mom’s death and her father’s ill health.

   She’s very open to alternatives and in fact is using a naturopath after a zillion allopathic tests came back negative.

   I think what I’ll do is print out your replies and give them to her in church Sunday . . . would either of you mind if I gave her your emails as well? She is a sweet person, a real trooper–despite her health issues, she has functioned as the volunteer director of children’s music for almost 2 years now, and hardly missed a day– and would never ever want to take advantage of anyone. But she is very eager to get better, as you can well imagine.

   Thanks again! Andrea

9. patti said,

   January 9, 2007 at 11:28 pm

   Andrea,

   Feel free to give her my email address. Wondering if it would be better to have her post on the blog only because then she can get the benefit of discussion going back and forth from multiple folks instead of just one or two separate from each other. That two (or three) heads are better then one thing.

   I agree with Marla and Shawn Talbot’s book. It’s not great, but it’s a start. If she wants it I’d even send it to her because it’s not likely I will use it again.

   If it’s stress that is causing her cortisol to be too high then I think diet and herbals will go a long way towards bringing it more to normal. I guess the question becomes is how high is it and did she have any 24hr urine cortisol tests done? The 24hr would indicate if she’s dealing with cushings vs. stress induced high cortisol. To bad she and I couldn’t trade cortisol! : )

   I also went naturapathic after every test the doctor did said I was normal and I knew I wasn’t. Of course, the naturapaths saliva tests showed much different results! “Normal” doesn’t usually mean feeling like garbage 24/7.

   Hope we can be a help and a blessing to her.

   patti

10. patti said,

    January 10, 2007 at 3:59 am

    Can’t sleep again so may as well update from yesterday. Mom had three really pretty good weeks recently but she definately was not doing well today. She was so tired the whole day. She literally slept all the way home tonight and she never does that! She had that horrible smell today so I’m sure that’s why she wasn’t feeling so well.

    We ran the Exjade concerns by Dr. Reuter and she helped lay out a game plan for us. Particularly if we ended up having trouble with Bonnie agreeing to making changes to desferal via PICC if needed.

    Bonnie actually had no issue with everything we told her about the Exjade. Mom backed off to 250mg a week ago and her ANC’s were up a little today. She also doesn’t need an RBC transfusion until next week. She’s been running two weeks since starting the Exjade. Bonnie looked at mom’s ANC count from when she was on nothing for iron chelation. She was running 600 ANC’s. On 125mg of Exjade she dropped to 500 ANC’s, at 250mg she dropped to 400 ANC’s and at 500mg she dropped to 300 ANC’s. As we talked about the fact that the pharma company hadn’t studied this drug on anyone over 65 she also said they probably did not study it any large amount of people with blood disorders. This drug was mainly tested for thalissemia (however you write that) patients and those with sickle cell anemia. Her feeling was that anyone with a blood disorder that the Exjade was probably damaging their already fragile red and white cells. So she was really easy to convince that we needed to make a change! Mom’s last ferritin check showed that at 250mg of Exjade her iron level dropped 349pts. The current plan is to go two more weeks on 250mg, retest her ferritin level and see if mom’s ANC’s come back to 400 or 500. If they do, we can live with that. It’s still low, but not as bad as 300 ANC’s. If she doesn’t come back we will switch to desferal via her picc line three times a week. Bonnie didn’t even have heart ache over mom not doing it daily. They did another metabolic panel today because mom’s kidneys appear to be getting worse. Oy, and mom has been playing around with her supplements again! She uses a cornsilk and dandelion tincture to slough off the extra fluid that her kidneys can’t get rid of. She uses it just once daily and it works really really well and she doesn’t need lasix when she’s taking it. She decided a few weeks ago that because her ankles were no longer swollen that she didn’t need the tinctures anymore! And today, she had huge ankles! Trying to explain to her that she wasn’t swelling because she was taking the tinctures and not that that meant she could stop was a whole other story. All of the swelling caused some serious petichaie on her legs even though her platelets were at 6000. Mom almost never gets petichaie so I knew something was up. It took awhile for us to figure out what she’d done.

    Platelet transfusion went off with no troubles and no hives. Always a good thing. One thing we notice is that if infuse the platelets over 1 1/2hrs instead of an hour that she tends not to react to them. It’s worth taking the time to do it right when that is the outcome.

    Ya know, when mom was doing so well the past few weeks, I did much better in general. Especially sleeping at night. I am generally a “glass half full” sort of person. I can always see the bright side. But I found myself this past few weeks wondering when the next shoe was going to fall. I really hated that feeling because it’s abnormal for me. I have a hard time being around “glass half empty” people and here I was feeling like I was just biding my time until something else happened. But in my gut, I know that God gave me and mom this good few weeks because we needed them. I needed to remember my relationship with mom prior to when it was all doctors, etc. And we got a little bit of that back this past few weeks. I know that was God’s mercy for both of us. I am frustrated with all of the emotions that come along with her being sick. My brain doesn’t deal well with it.

    Okay, I’m going to try and go back to bed. Reuter is working up a botanical sleep thing for me so hopefully I’ll have it soon! Me thinks I will need it!

    Until next time,

    patti

11. Andrea said,

    January 14, 2007 at 11:24 am

    Hi ladies–Well i wonder if you could keep praying for Lynn. She had another severe heart episode last week. (Heart racing, shakes. It has a name but I can’t remember it.) Her ND took her off all drugs and she’s going to a cardiologist again Wednesday. She is a brave trooper, but talking to her on the phone today I can tell she’s tired and scared.

    I gave her ya’ll’s blog info but I thik she’s too overwhelmed right now. So prayer is our best option.

    thanks, andrea

12. Administrator said,

    January 16, 2007 at 1:00 pm

    Hi Andrea:

    Yes, she will be in prayers. Thanks for letting us know! Sorry to hear about her heart problems (tachycardia is fast heartbeat, but maybe she is diagnosed with something else?). Let us know how she comes along after getting off all her meds. There are quite a bit of things that can cause irregular heartbeats from foods like excitotoxins, mineral imbalances like magnesium, calcium, potassium, etc. I’ve had a heart murmur for a long time and used to get weird sensations in the chest and head. When I got AA, my heart murmur got worse, and I was diagnosed with mitral valve proplapse. Interestingly, after changing my diet completely, I don’t notice anything out of the ordinary anymore. I rarely ever get those “weird” feelings anymore. I think even my blood pressure has been much improved because I don’t get that light-headedness like I used to when getting up from a crouching position. I used to be hypoglycemic and get really shakey when I got hungry. No more, tho. For me, changing my diet has really helped quite a bit of health issues.

    Okay, please let her know that we’re praying for her and that she gets the strength to find and do what she needs to to get better.

    Hugs!

    Marla

13. patti said,

    January 16, 2007 at 11:51 pm

    Andrea,

    Yes, I’ll be praying. One thing I thought of today as I was praying for her is about her ND. Is her ND a family practice ND or one who specializes in diseases like cancer, etc.? I have found from our experience with mom that a lot of ND’s do family practice and deal mainly with general family health but when it comes to anything serious they are really lacking. At least that’s how the first ND we took mom to was. She might need to make sure she’s seeing an ND that’s a cancer specialist or something even though she doesn’t have cancer. I’m finding that mom’s ND is much more aggressive in researching and finding answers then the first guy we took her to. In general she seems more knowledgable when it comes to what disease might be present. Just a thought.

    It really is no fun to feel like garbage. I feel for her. You mentioned awhile ago this started with lyme disease??? Or is that just what they thought it was to start with and now they don’t think that anymore?

    Well, you can at least let her know there are two more people praying for her.

    patti

14. patti said,

    January 17, 2007 at 12:15 am

    Another tuesday –

    This AM started off with a bang. We woke up to 4 inches of snow and frozen roads. Lovely. We drove 30mph the whole way but we made it to mom’s infusion appt. She got platelets and two units of RBC’s today. She did fine with them and everything went pretty smoothly.

    We were pretty nervous watching the news as they “storm coveraged” all stinking day! I wasn’t sure we were going to make it home. Thought we might end up spending the night at my folks house. But alas, 4:00pm came and we finally got to leave. By that point there was no one on the road because it was so icey no one was stupid enough to be on the road! Egads. Actually, the freeway wasn’t too bad. The bridge was awful but the actual highway wasn’t too terrible. The stretch from the freeway to home was dicey. Same thing as the morning. 30mph all the way home. Actually, Scappoose was the worst! They didn’t shovel, gravel, sand, nothing! Not even the main road through town. You’d think we lived in hickville! It’s a small town, but gee whiz! Actually, the snow is beautiful and my kids are having a blast. They are building an igloo and snow fort on our deck. The ground is so frozen this snow is going to be here for awhile, I think. They say it’s supposed to warm up tomorrow but it’s going to take a few days for this to go away. Mom white knuckled it all the way there and back today. She makes me nervous sometimes!! And my Peanut (#3) doesn’t like cold weather! Isn’t that funny? Last week she wouldn’t go anywhere near outside with the snow. Ron said she did go out today but only for a very short time and she was ready to come back in . I laughed and told mom that Peanut gets that from the Steele side! Mom HATES the cold.

    We lowered mom’s Exjade based on the information we got last week about white cells. We’ll see on tuesday if she’s back to at least 400 ANC’s. If she is we will probably stay on the Exjade at the lower dose. I can already see the iron back in her skin again. It really shows up quickly in her eyes. Her skin looks kind of bronze. Remember the old tanning creams in the 80’s that you could put on your skin? They usually looked orange instead of tan. That’s how her skin looks around her eyes. It was still there on 500mg of the Exjade but not as bad. Nonetheless, we’ll make a decision regarding desferal or Exjade next Tuesday based on her counts.

    Things seem rather quiet and stable right now. Man is that nice!! I notice as mom gets closer to needing red cells that that smell gets worse and horribly difficult to be around. I assume it’s her body trying to eliminate the dead cells from the previous tranfusion? But as soon as she gets new reds, the smell goes away almost instantly. Same thing happens with the platelets weekly (about the day before she needs them) but it’s not near as bad. I guess because she’s getting such a small bag compared to the blood. Anyways, I’m slowly starting to get used to it. I guess that’s it for mom news. She didn’t see Dr.Kou this week because we had to schedule a tx today. She’ll see him next tuesday.

    They started putting our new roof on yesterday. Surprise. We have half a shingled roof and snow covering the whole thing now. Good grief! We purposely waited until we were supposed to have 5 dry days and we got a surprise snow storm. Murphy’s law? God’s sense of humor? Personally, I think it’s God’s sense of humor. We aren’t supposed to be in control are we? Oh well. They’ll probably be back on Thursday to finish the job. Hopefully the roof snow will be gone by then. On the bright side – there’s this huge dumspter in our driveway that they threw the old roof into and it’s not even half full. We paid for it so we’re gonna take advantage of it! I’ve got 3 dead computer monitors. Two dead computer boxes, 3 dead tricycles/bicycles, and the list goes on and on. And it’s all going in there tomorrow! I think it will add about 4 ft of living space to my family room to have these darn monitors out of here! So – there’s a silver lining…. always.

    It’s late so off I go. Oh! One quick note. Dr.Reuter gave me some botanical “knock out” drops. They are california poppy, passiflora, and hops. Umm. ‘Bout 20 minutes after taking those I am literally knocked out! Oh, it’s bliss. And it’s not Ambien!! If people only knew and understood what they are putting into their bodies with the drugs…..

    Between the diet changes, natural hormones, cod liver oil and herbals we have managed to level my hormones, get me sleeping and drop my cholesterol more then 100 points. Yep, give me nutrition anyday. God gave us food for a reason. I am so thankful I have learned all of this over the past couple of years. If I’d only known sooner……….

    until next time..

    patti

15. Jennifer said,

    January 17, 2007 at 8:22 am

    Heh, did I mention that the snow is our fault? We’ve been praying for a snow day. We get 2 out this one.

    Glad you made it home safely. Maybe your mother-in-law needs knock out drops for the trips home.

16. Andrea said,

    January 17, 2007 at 5:57 pm

    Thanks ladies. I think you are probably right about Lynn’s ND, Patti. I think he’s in over his head. I think Lynn knows this, but it’s gonna take a while for her to accept it.

    One thing that impressed me, Patti, is when you said that 3 weeks rest in your motorhome really helped you. Because Lynn is a very very hard worker, and I suspect she really needs to rest more. So one thing I did is, I called her and said, what if I take over Sunday School music? And to my delight, she said, That would be wonderful. I think she really feels so strongly about the kids having a good Christian education, which means good music, and my schedule used to make it impossible for me to do it–but that’s changed. So at least that’s one time she can REST.

    I dropped off a bulb about to bloom, a picture of Jesus that has helped a number of people in hard times, and “Becoming Whole” by Meg Wolf–Meg is a local woman who, at about Lynn’s age (37), and after 12 years of struggling with health issues, turned herself around with diet, massage, meditation, acupuncture, cranio-sacral therapy, and massage. The practitioners she mentions are all in this area–and just looking at her picture on the cover gives hope. I’m thinking that Meg’s book might get Lynn thinking about food–something I don’t think her ND mentioned to her, but is so very powerful.

    Well, thanks, thanks for your prayers, our pastor started a church prayer chain for her as well, I trust that all things will work for good. . . . .off to bed! Andrea

17. patti said,

    January 17, 2007 at 11:12 pm

    Andrea,

    If Lynn ever feels the freedom to stop by here I’d be really interested in what kind of symptoms she’s experiencing. Just wondering if our two heads of experience with adrenal issues can give some insight to what might be going on with her and give her some guided direction. I know you said she’s overwhelmed. I totally understand that. I was after 4yrs of trying to figure out what was wrong with me too.

    It sounds like you’ve given her some good info to chew on! Especially the book. Sometimes a nudge in the right direction will cause us to move forward with a needed change.

    Will continue to pray.

    patti

18. Andrea said,

    January 19, 2007 at 3:54 pm

    Thanks Patti. I’ll pass it on. Appreciate your prayers so much,

    Andrea

19. patti said,

    January 24, 2007 at 11:24 pm

    I am going to do my very best not to make this a book tonight. I am up to my gills in business shipping tonight. Which isn’t a bad thing, just makes for a late night if I don’t get moving. But I wanted to get this posted because I need folks praying.

    Mom’s ANC count on Tuesday was zero. As the doctor put it, not enough for the machine to register anything which means less then 100 ANC’s. Which is not enough to fight off any infection. The burning question is, is this caused by the Exjade or have the neupogen shots she’s been taking for 2 1/2yrs stopped working? After consulting with Dr.Marla (thanks, Marla) we have stopped the Exjade. Mom will take two neupogen shots this week. Monday they will draw a CBC when she gets typed and crossed for a tuesday transfusion. Tuesday we will have the results. IF she has ANC’s then we know the Exajde was damaging any white cells she had or was suppressing bone marrow production or something. She will stay off of the Exjade and immediately begin desferal via her picc line as soon as she gets enough ANC’s to do that. IF she has no ANC’s we will immediately stop all neupogen shots. Because neupogen is a growth factor, if it’s not producing white cells it will only be growing leukemic cells (cloning what’s already in her marrow) and we don’t want that either. So, at this point, we are praying that the neupogen shots are still working and this change is drug related.

    Now I’ll throw in my pessimism. I know, Marla, you said it’s not insurmountable if she has no white cells, BUT her marrow has not produced white cells on it’s own for almost 3yrs. She has always required the neupogen to kick her marrow into doing that. If the shots have stopped working I do not see how she’s going to all of a sudden start producing white cells on her own again after all this time. Whatever Kou is doing is still focused on her reds. Although he has herbs in her tea for whites and platelets, they just aren’t concentrated for that because he knew he needed to get her off of RBC transfusions first. So if these shots have in fact stopped working then I think we are at dead zero point. No amount of antibiotics will cure an infection if she has no white cells. I’m TRYING not to be pessimistic but it’s hard right now! This was very discouraging for us to see. She’s really been fairly stable these past few weeks or more. When mom saw those counts she actually cried. It is the first time I have EVER seen tears in the doctors office. I didn’t even say anything. I just showed her the counts. But she knew that was not good. At least for that moment.

    So I did what any self respecting woman would do to help another self respecting woman that just got hit with bad news. We went shopping! Mom loves to window shop even though she doesn’t have the energy to anymore. So we went to Bed, Bath and Beyond and stood in just two aisles. Ron and I have finally sworn off non-stick pans completely so I needed to buy new pots and pans. Mom so enjoyed helping me pick them out. I got such a GREAT deal. You won’t believe this! I got a $200 set of of pots and pans for $140!! How cool is that? I still have one more pan I need to replace but just that one pan was $180! Good grief. I decided that one non-stick pan will have to wait for replacement! Anyway, I think mom was more excited about the deal I got then about the actual pans. I used my first one tonight and was very pleased. My only reservation about leaving my trusty non-stick is making eggs. But we’ll survive that. Coconut oil, maybe???? I thought since we didn’t really walk much but just stood there she’d be okay. But she ended up sleeping the entire day. She even slept all the way home. She’s only done that one other time before so I know she was exhausted. When I asked her if the benadryl knocked her out this time she actually said, “no, I’m just tired.” I think she’s been sleeping like this lots lately.

    So after all that, we saw Kou and got her platlets. Both went well. While we were waiting for Kou she looked at me and in the most giddy way said, “I helped you buy pots and pans.” All I could figure is she just enjoyed doing that with me. Maybe because it’s just nice to do something other then see a doctor. But I was glad to see her smile after such a rough morning.

    Ron and I both felt that until we knew mom had some white cells that she should not expose herself unnecessarily to the public. So until we have blood test results tuesday we asked her to not go to the store, church, out to lunch with David on Friday (they have a standing Friday date), etc. She wasn’t thrilled but understood. I went to the store for her tonight. As we were talking when I returned to her house I told her I was sorry for raining on her parade today and I know how much she hates being limited. I was surprised by her response, but thankful. She very thoughtfully said she’s just thankful for the time God has given her and if this is how it is right now, then so be it. She wasn’t sad, angry, discouraged. Just, resolved. A long way from where she was a year ago.

    I have to tell you God has continued to prepare our family for things to come. Our new roof went on – but Luke is allergic to it. It took us days to figure out what was wrong with him but we finally did. We had to eliminate a few possibilities first. As of today he is now only getting hives when he goes into his room or his sister’s room. So he went all day without them until bedtime tonight when he went in there. But up until today he was covered head to toe (on his head and privates as well!) in hives. We just feel like it will be easier to let this house go when we need to. With his latest allergy I’ve also had to wipe down his walls with bleach water, clean, etc. So we’re doing that now with each room a little at a time. With the roof came a huge dumpster as I mentioned before. We did a ton of really necessary cleaning out. Especially in order for us to move. So in essence, getting the house ready to sale for when the time comes. All things I couldn’t do quickly simply from an energy standpoint so being spread out over a few weeks.

    We just see God preparing the way – for whenever that time is. That we do not know. That’s it for mom stuff. I am so anxious for this next CBC because it will tell us so much.

    Marla, Andrea – thought I would throw out some adrenal stuff here. I’ve been taking Isocort adrenal glandular for quite some time to try and increase my cortisol levels. It works very well but I have to take it. If I don’t , I’m crashed right back to where I was a year ago. On Tuesday, I forgot to take it all day. I got my AM dose but forgot lunch and dinner. I was so flat out from 4:00 until 8:30 that Ron couldn’t get me off the couch. Everytime I tried to sit up, I couldn’t. Around 8:00ish my adrenals are kicking out the amount of cortisol I need for that time of night and I wake up again but it takes time to recover from that crash. I am hoping that this kind of a crash was simply from the stress of the day and missing the cortisol doses. Today, I made sure to dose correctly and I was fine all day. I napped but only because I stayed up late last night working after I came to around at 8:30.

    So, Andrea, that’s how strange adrenal/cortisol issues are. Too high or too low, it really wreaks havic with the body. I pray that Lynn finds relief soon. For her and her family – because it does affect your family when your flat out and can’t function.

    I think that’s it folks. I still ended up wriing a book. I gotta get to my shipping.

    Adios.

    patti

20. patti said,

    January 25, 2007 at 10:01 am

    I forgot something that made me think of Marla’s post on jujubees! Dr.Kou had mom double up on her jujubee eating. He now has her boiling 3 jujubees a day in 8oz. of water and then drinking the tea and eating the jujubees. It’s the first time he’s had her cook them which I thought was funny since Marla’s recent posting stated just that.

    patti

21. Andrea said,

    January 26, 2007 at 1:20 pm

    Patti, As rough as your week had been, I had to smile at the way you coped. “When the going gets tough, the tough go shopping.” What a loving thing to do, and it obviously meant so much to you mil, that it would pop into her head as it did. And it sounds like God is preparing your mil in some way too, that she is calmer and readier to accept whatever is thrown at her next.

    As to allergies–have you tried an air purifier? Good ones are available for less than $200. We had tenants who were really troubled by, they thought, mold from the basement. They wanted to use bleach but we knew that was only a temporary solution, so we bought them an air purifer, and their problems cleared right up!

    As to Lynn–she’s definitely got multiple issues, and one is that she’s been trying to chug along normally when she should really be Resting with a capital R. But our church has Gone Into Action–I’ve taken over children’s music (and don’t I wish I could invite you-all to our March 11 musical, “Moses and the Freedom Fanatics”)–she’s getting hot delivered dinners 3x/week, I’m going to help teach her kids, a church dad is going to pick up her kids for Sunday school every week (her husband works most Sundays), and basically we’ve got a conspiracy going to keep her from being as nice and hardworking and devoted as she naturally is!

    This will I hope give her the space to read some books and figure out what the hey is going on.

    Your concern means so so much. I will keep you posted. I will pray also for you and your family Patti.

    must go, Andrea

22. patti said,

    January 26, 2007 at 2:21 pm

    Thanks, Andrea. Wow! It sounds like you guys have a great church family! What a terrific blessing.

    We have had a small hepa filter purifier in Luke’s room for a long time because he is allergic to mold and we have aluminum windows which are just a haven for mold. With this new round of hives being so bad we bought a new filter that is meant for a room double his size figuring that the better the air is cleaned the better it is for him. It wasn’t bad in price and it uses good hepa filters. We definately noticed a difference in his room after we ran it on high for 24hrs. There is no smell in there from the roof that we can tell but apparently his body notices the formaldehyde in the shingles. Weird isn’t it?

    What really strikes me is that we need to get a handle on his immune system being so reactive. I’m hoping giving him the black elderberry syrup daily for six months or so will help that. Other then that, I’m not sure what else I can do. I did find a homeopathic allergy remedy that I can give him once a week instead of giving him claritin daily during his worst times. I’m so glad for that! I hated giving him the claritin daily but his allergies would get so bad I’d have to. This homeopathic stuff works great! If anyone is interested it’s called allergiplex. by UNDA. They’re an outfit out of Belgium.

    God is so faithful. As I was cleaning blinds today (what a yucky job!) I was reminding myself of all the events the Lord has coordinated this past few years and how each one has been perfectly timed. So much so we could have never planned it on our own. And even in the times ahead, God will still be faithful.

    Gotta jet!

    patti

23. Andrea said,

    January 29, 2007 at 2:10 pm

    Yes, we do have a truly remarkable church family. And yes indeed, God is faithful. Thanks for the tip on Allergiplex. gotta go, Andrea

24. patti said,

    January 31, 2007 at 12:10 am

    WE HAVE NEUTROPHILS! I thought mom was going to faint when I told her and I’m so grateful I did not have to tell her otherwise today. We have at least proven that the Exjade did in fact stop the neupogen from working. I don’t know if it chelated the neupogen out of her body or somehow interacted with it but whatever it was, it dumped mom’s white cells. She will stay off of the Exjade for good and she is considering this week wheather she will use desferal via her picc line. One thing that may end up being an issue is she would do the desferal three times a week. That would require someone to hook her up in the morning (she’s already decided she’d rather do it during the day if it’s a fanny pack type thing) and remove and flush her at night when she’s done. I can’t do this 3 times a week, twice a day and still go out on Tuesdays. So we told her she would likely have to have a home health nurse do it for her. She is deciding if she’s willing to do that. If she is not, then she will not do any chelating and just let the iron overload get worse. We see the doctor on Tuesday and will cover all of this then.

    Mom got Ron’s platelets today and she did fine with them, as usual. They were a lower count then others he’s given and we are lucky they even let him donate. His platelet count was below the 150K threshold and they didn’t test him until he was already hooked up. They went ahead and let him donate anyway but told him they would double check next time and not allow an amount lower then the required 150k. This also meant that the quantity of platelets they gave mom was less. It seems the boys are having a harder time recovering in the 3-4 weeks between donations for some reason. We are in the process of seeking another couple of donors since one of ours will be leaving for the mission field this Thursday (both a boo hoo and a blessing). It will also give the boy’s bodies more time to recoup. Mom’s platelets were 10K prior to transfusing but she had mouth sores this time which is really unusual. When she had her own platelets and they were at 8k she still wouldn’t get mouth sores. So I’m not sure if this is platelet quality (because they weren’t her own), or what.

    I talked to mom about her memory today and what is happening with it and Ron talked to her about charities preying on her. It seems both went okay so we are glad.

    In my inability to sleep last night I was able to come up with a plausable situation for when we need mom to have full time care in her home. We talked about it tonight and Ron thought it just might work. We won’t do any asking at this point but at least we have one possibility which is more then we had yesterday when we talked about it.

    I’m tired so I’m going to cut this short. I think I covered the important stuff.

    till next week,

    patti

25. Administrator said,

    January 31, 2007 at 12:29 am

    Woo hoo! That’s wonderful news, Patti! What was her neutrophil percentage? Such a relief!

    Now, about Ron’s platelets. . . when was the previous time that he donated platelets? Did they say how much below 150K? Ordinarily platelets crank out very fast. I was told that technically platelet donors could donate every 72 hours. That’s how fast the body makes them back up. (Not so with red cells, and donors are only allowed to donate reds every 2 months). Even though platelets replenish within 72 hours, they “prefer” that a donor wait 2 weeks between donations for the purpose of letting their veins heal and not get scarred. However, that’s a separate issue than platelet production. What quickly crossed my mind is the new roof you have off gasing. Luke seems to be reacting to it, and I wonder if Ron is also? After all, his mother does have a blood condition, so he should be careful in case he has a propensity for blood issues, too. Not to scare you, but just wanted to mention it. You might want to keep an eye on his platelet levels and maybe find out exactly what they used on your roof so that you can get an idea if there’s anything that might affect blood counts. Some labs consider 140K to be within the normal range, so it would be good to know whereabouts Ron registered.

    Okay! Great news for your MIL! Let her know that we’re so very happy for her! And you guys, too!

    Andrea, that musical sounds like it’s gonna be nice! Wish we could come! You gonna record some of it? Heheheh.

    Marla

26. Birgitta Alexius said,

    January 31, 2007 at 8:07 am

    Hi Patti,
    We all hope your brave mother will continue to fight her disease. You know that there are at least 3 new drugs for thrombocytopenia in pipelines. The first one on the market will be AMG 531 from Amgen. In their latest report they write that they will probably be able to file for approval of AMG 531 for ITP both to FDA and European Medicines Agency during 2007. All 3 drugs are tested in clinical trials for other types of thrombocytopenia.

    Here is a “shortcut” from the report:
    Jan. 25, 2007
    Amgen’s Fourth Quarter 2006 report
    Fourth Quarter Product and Pipeline Highlights

    AMG 531: Both Phase 3 studies of AMG 531 in immune thrombocytopenic purpura (ITP) have been completed. In the first of these studies, patients with ITP despite prior splenectomy were randomized to receive either placebo or AMG 531 over a 6 month period. Review of the data from this study revealed a very favorable efficacy and safety profile, with all endpoints successfully met. The Company expects to review data from a second Phase 3 study in pre-splenectomy ITP patients during the first quarter of 2007. Pending positive results from this study, the Company announced that they expect to file for approval of AMG 531 in the ITP indication in both the U.S. and Europe in 2007.

    Here is the adress to the site:
    http://www.amgen.com/media/media_pr_detail.jsp year=2007&releaseID=954402
    Kind regards
    Birgitta

27. Andrea said,

    January 31, 2007 at 1:09 pm

    Yay neutrophils!! Wow that’s great news! Andrea

28. Administrator said,

    February 1, 2007 at 2:06 pm

    Thanks, Birgitta, for sharing that information. I tried the link, but it said the article was not available at this time. So, I did a small search for platelet boosting drugs and found this link to AMG 531 http://www.news-medical.net/?id=20983 Apparently, there was another drug called PEG-MGDF which stimulated platelet production, but the body’s natural thrombopoietin reacted to the drug. In response to that, this is what the article states:

    “The company, under the guidance of the study’s senior author, Dr. Janet Nichol, eventually developed AMG 531 — a novel protein with no structural similarity to human thrombopoietin. This dissimilarity and other features mean AMG 531 is largely ignored by the immune system.”

    Interesting, but I’m the very cautious type and would prefer to wait to see what side effects are cropping up first before stepping to the plate.

    I also found that GlaxoSmithKline has a platelet boosting drug in the works, too, called Promacta (eltrombopag). Here’s a link for a little more information on that drug.  http://www.hivdent.org/drugs1/drugGNDL1206.htm
    Take care,

    Marla

29. patti said,

    February 1, 2007 at 11:35 pm

    Marla,

    Wanted to answer some of your questions. Mom’s neut. % was either 34 or 37. Can’t remember exactly. Her leukocytes are 57%. She has zero basophils and enosophils (sp???). Can’t remember the rest. I think everything else is pretty much zero.

    They did not tell Ron what his count was. Only that it was below 150K. I know platlets are supposed to regenerate fast but we were wondering if doing it every 3 weeks is just putting too much pressure on the body to kick ‘em out fast enough. But what you said about the roof makes more sense. I talked to him about it and it made sense to him also. The main chemical in roofing/building material manufacturing is formaldehyde. So it’s not that they used a specific thing on our roof but that the materials are covered in the stuff during manufacture. It makes so much more sense now. The problem is, what do we do???? Luke is still having trouble off and on with hives when he tries to be in his room for sleeping (10hrs straight) vs. just a few hours here and there. We still have him sleeping in our room for now and the filter going full blast in his room. This is the first time in my life that I have ever thought it would be worth getting a “green” roof! And I can almost bet you if we ever have to roof a house again we will pay dearly to have a roof that is more “environmentally” safe. Not because we’re greenies, but because the chemicals are so harsh and bad for the body!

    Have to write more later.

    patti

30. Birgitta Alexius said,

    February 2, 2007 at 5:57 am

    Hi Marla,
    I reported about the new drugs for thrombocytopenia because they give hope to many patients and the most developed drug – AMG 531 – will perhaps be available during the last half of 2007.

    Here is a link to an explanation about the drugs and then I have tried to translate the important part to English for a supportgroup for ITP patients:

    http://professional.cancerconsultants.com/conference_ash_2006.aspx?id=38854

    THROMBOPOIETIN
    Cloned almost simultaneously by several research groups in 1994, human thrombopoietin is composed of 353 amino acids. Thrombopoietin is a potent megakaryocyte colony-stimulating factor, and along with other cytokines increases the size and number of megakaryocytes. Megakaryocytes are the largest cells seen in bone marrow aspiarates and produce platelets by cytoplasmic fragmentation.

    When administered to humans and other primates, thrombopoietin increases the number of marrow megakaryocytes and circulating platelets up to 10-fold. A truncated form of thrombopoietin called megakaryocyte-growth-and-developmental-factor (MGDF) coupled to polyethylene glycol (PEG)has also been administered to a variety of thrombocytopenic patients.

    Both recombinant thrombopoietin and polyethylene glycol – megakaryocyte-growth-and-developmental-factor clearly shortened the period required for platelet counts to return to normal following systemic chemotherapy. Although initial reports implied that recombinant thrombopoietin had minor toxicity, one subject given this drug developed non-neutralizing antibodies. In addition, several patients receiving polyethylene glycol – megakaryocyte-growth-and-developmental-factor developed neutralizing antibodies against their endogenous thrombopoietin resulting in profound and persistent thrombocytopenia. Largely because of this toxicity, both recombinant thrombopoietin and polyethylene glycol – megakaryocyte-growth-and-developmental-factor were withdrawn from clinical trials.

    THROMBOPOIETIN-MIMETICS: THE NEXT GENERATION
    By screening peptide libraries, several groups were able to identify peptides that bind the thrombopoietin receptor with high affinity. Peptides are short molecules formed from the linking, in a defined order, of various α-amino acids. Because they bear no structural resemblance to thrombopoietin, but still bind and activate the thrombopoietin receptor, these compounds are called thrombopoietin mimetics.

    Several peptides have been identified, and they have been further modified to both prolong their half-life in plasma as well as to increase their efficiency in activating the thrombopoietin receptor. The theoretical advantage of these compounds over standard recombinant thrombopoietin is that they bear little structural similarity with native thrombopoietin, and should not trigger auto-immune anti-thrombopoietin antibodies like polyethylene glycol – megakaryocyte-growth-and-developmental-factor. A recombinant protein is a protein produced by an organism after the relevant DNA is inserted into its genome (that is, by a genetically modified organism).

    AMG 531
    AMG 531 is the most developed pharmaceutical in the peptide thrombopoietin mimetic category. It is composed of several copies of the thrombopoietin receptor-binding peptide spliced into a recombinant antibody. AMG 531 COMPETES WITH THROMBOPOIETIN FOR BINDING TO THE THROMBOPOIETIN RECEPTOR, and activates the receptor in an identical fashion to endogenous thrombopoietin. When administered subcutaneously to humans, AMG 531 produces a dose-dependent increase in platelets counts.

    ELTROMBOPAG, AKR-501 AND SB-559448
    A similar approach has been used to identify OTHER SMALL MOLECYLES CAPABLE OF BINDING AND ACTIVATING THE THROMBOPOIETIN RECEPTOR, YET BEAR LITTLE STRUCTUAL SIMILARITY TO TROMBOPOIETIN. Screening small molecule libraries for compounds that have thrombopoietin-like activity identified these so called thrombopoietin nonpeptide mimetics.

    The most developmentally advanced of this category is Eltrombopag. It is an orally available drug that activates the thrombopoietin receptor by binding to the receptor’s transmembrane region. Therefore, unlike AMG 531, Eltrombopag does not compete with endogenous thrombopoietin for binding to the thrombopoietin receptor. Like subcutaneously administered AMG 531, oral Eltrombopag also produces a dose-dependent increase in the platelet count of healthy volunteers.

    Although not as far along in clinical trials, several other oral thrombopoietin nonpeptide mimetics including AKR-501 and SB-559448 are also currently being developed and appear to show good thrombopoietic activity in humans.

    THROMBOPOIETIN-MIMETICS AND ITP
    Since thrombopoietin levels are not extremely elevated in the plasma of patients with ITP, it seemed reasonable to attempt to ramp up platelet production with the administration of exogenous thrombopoietin. In 2002, S. Nomura et al. demonstrated that seven daily doses of polyethylene glycol – megakaryocyte-growth-and-developmental-factor significantly increased the platelet count in two out of four refractory ITP patients. Although this appeared promising, as mentioned previously, polyethylene glycol – megakaryocyte-growth-and-developmental-factor development was halted because of its propensity to induce autoimmune antibodies against endogenous thrombopoietin. Once thrombopoietin-mimetics became available, several groups analyzed whether these compounds would also increase platelet counts in patients with ITP without inducing an immunotoxicity.

    Kind regards
    Birgitta

31. patti said,

    February 2, 2007 at 10:50 am

    Birgitta,

    Thanks for the good info! I wonder how drugs for increasing platelets will do with MDS patients who are short on stem cells. I know my MIL has too few cells in her bone marrow in general so if she were stimulating both whites and platelets would there even be a net increase considering that there are only so many stem cells to divide into whites and platelets? Or, can these drugs actually increase the number of stem cells in the marrow? It doesn’t sound like it. But for those who have ITP or MDS where platelet counts may never come back (unlike chemos where they do eventually come back), it does provide some sense of hope.

    patti

32. Birgitta Alexius said,

    February 2, 2007 at 2:01 pm

    Hi Patti,
    All blood cells originate from stem cells in the bone marrow. In MDS a defect has developed in one of the stem cells. This defect is passed on to all the future generations of cells that develop from the defect stem cell. This defect prevents the defective stem cells from producing mature, functioning blood cells. In some patients the defective stem cells die early or cause healthy stem cells to die early. In other patients defective stem cells may crowd out healthy stem cells so that the marrow is not able to produce enough normal blood cells.

    As far as I understand all MDS patients have well functioning stem cells too. The new drugs for thrombocytopenia bind to the thrombopoietin receptor and activates the receptor in an identical fashion as endogenous thrombopoietin. Thrombopoietin increases the size and number of megakaryocytes and the megakaryocytes produce platelets by fragmentation.

    We have had that type of drugs for red blood cells and white blood cells during many years – the good news are that now we are getting them for platelets too.

    Here is a link to a clinical trial with AMG 531 for MDS patients just to show that the patients with MDS are not forgotten:
    http://www.clinicaltrials.gov/ct/show/NCT00303472

    Kind regards
    Birgitta

33. Administrator said,

    February 3, 2007 at 9:51 pm

    Thanks again, Birgitta, for the information. Very informative! I was wondering if you happen to know what the side effects were for the other platelet boosters such as Eltrombopag? Amgen stated that their AMG 531 was developed to avoid reaction like the one from PEG-MGDF, but it didn’t state what the reaction was and might be nice to know for anyone considering entering a clinical trial for that type of drug. I suppose they reveal those possibilities to prospective participants, but not on their recruitment ads.

    I looked at your link and noticed that AMG 531 was recruiting participants from Jan 2006 to Jan 2007 for Phase II clincal trial. Expected completion would be in March 2007. They expected 55 enrollments. I’m trying to understand how they can take enrollments up to Jan 2007, then complete by March 2007. That’s like 1 or 2 months? I wonder how long these participants are to take AMG 531? How long afterwards they are monitored, and when the results will be released?

    Another thing for anyone considering entering a trial is to understand the different clinical trial phases. Phase I is the trial where the drug will be tested in humans for the first time (usually they are developed and tested on lab animals). An important point to keep in mind is that these people are generally “healthy,” so they will not have the same side effects a sick person may have. Phase I is just to see if it can be tolerated by humans. Phase II is the trial where they first try it out on patients who have diseased conditions. So, phase II will help them to determine dosages and see if sick people can tolerate it. In a Phase III study, an experimental drug is tested in several hundred to several thousand patients with the disease/condition of interest. Phase IV is the trials done after the drug has already been on the market to give more information on the drug on a wider scale of participants. Understanding what stage of development a drug is in should be considered by anyone entering a clinical trial. For more info on clinical trials here’s a link http://www.huntington-study-group.org/WHAT%20IS%20A%20CLINICAL%20TRIAL.html
    Okay, take care!

    Marla

34. Administrator said,

    February 3, 2007 at 11:04 pm

    Hi Patti:

    I guess after what I know now, if I were having a platelet drop right after having my roof installed and my son was breaking out in hives, I’d be sleeping somewhere else like in my RV, ha! until the roof had enough time to outgas most of the fumes. I really like new construction and additions, but I would really not like to go through blood problems again. When I painted the inside of my house, I did it in warmer weather when I could have the windows wide open and a fan constantly blowing. I also used the low VOC paints and went with the lighter colors. The darker the color, the higher the VOC, so I was told. It’s a shame that we have to look out for so many toxins.

    Marla

35. patti said,

    February 4, 2007 at 12:09 am

    I know, Marla. This is really frustrating. Ron also thought Luke’s mattress might be causing problems for some reason (outgas fumes getting into it??) so we removed them today and tried him in his room without them. He still broke out so he’s back on our bedroom floor. But we also thought it might take a few days to air out his room from the mattresses so we’re going to give it a few days without it and see what happens. This is really frustrating. Short of moving out of this house I don’t know what else to do. Maybe it’s not the roof and we’re barking up the wrong tree but we have literally looked at everything. The last thing we considered was the carpets. They were never a problem before the roof, why now? Unless they “soaked” up some of the outgassing also. I think our next step is to clean the carpets and see what happens. But as far as I’m concerned, that just adds more chemicals. At this point we’re praying for wisdom and still looking for answers. I’m giving Luke black elderberry syrup everyday and sometimes 3-4 times a day (every 4hrs). His immune system is shot. Now he has a bad cold – the girls are fine. I think his system is so taxed with the allergies right now that he can’t fight anything “normal” off.

    Mom stuff —

    We had a rough week with mom and fluid. I knew the bags of blood she got were huge for her (320+ cc’s) and I told her she needed to be careful with that much fluid. Sure enough, Wednesday she ran a fever all day, she had heart/lung pain and her blood pressure was way up. I had her take some potassium and magnesium for the heart pain and more cornsilk and dandelion tincture for the fluid. Within an hour she was feeling better. Still don’t know what the fever was from, unless it was from the blood itself.

    Ron’s brother went to donate platelets today and his blood pressure was sky high and they wouldn’t let him donate. All he’d tell us was that the “bottom number was 100.” Which means his systolic pressure was probably near or over 200. Or do I have that backwards? Then his son went to donate in his place and his iron wasn’t high enough so he couldn’t! Ron donated last week but we scheduled him for tomorrow but then our last donor stepped up and said he’d do it since it’s been longer for him. We are down to just two donors. Our church is putting out the call tomorrow and I will be asking the red cross to contact the anonymous donors that worked for mom before to see if any of them would commit. This is getting a little dicey. She may end up back on regular donors if we can’t get our acts together in the next two weeks.

    And yet, I see all of this as just God’s hand in preparing the way. Both Ron and I do. Loud and clear. There will be no surprises here for us.

    Must go. So much to do and much to pray about.

    patti

36. Birgitta Alexius said,

    February 4, 2007 at 4:10 am

    Hi Marla,
    About adverse reactions:
    AMG 531
    Abstract from American Society of Hematology 48th Annual Meeting, December 9-12, 2006.
    This planned interim analysis includes 36 patients (safety subset) whose previous study was a phase 2 trial. Data for patients previously enrolled in a phase 3 trial are still blinded. The 25 women and 11 men have a mean age of 50.13 (SD) years; 30 (83%) have had a splenectomy. Twelve patients entered the study using concurrent corticosteroids, which were tapered when the platelet count was >50×109/L. Adverse event profiles were similar for the intervals of weeks 1-24 vs 25-48 and beyond. The most frequent were headache (incidence of 2.0 per 100 weeks of subject exposure for weeks 1-24 vs 1.7 for weeks 25-48), upper respiratory infection (1.3 vs 0.8), and fatigue (0.9 vs 1.0).

    Four patients had serious treatment-related adverse events: vaginal hemorrhage/anemia (withdrawn from treatment), diffuse reticulin formation in the bone marrow (withdrawn), bone pain (continues on treatment), and transverse sinus thrombosis with papilledema and temporary decrease in visual acuity (64-year-old patient with diabetes mellitus and a platelet count of 293×109/L at the time of the adverse event; this patient continues on treatment).

    No neutralizing antibodies have been detected to date. The efficacy subset consists of 27 patients who completed week 48 or beyond. Both the mean platelet count and the mean dose of AMG 531 have remained stable between weeks 24-48. The mean platelet count was 100×109/L 4.4 (SE) during weeks 1-24 and 131×109/L 5.3 (SE) during weeks 25-48. Eleven patients (41%) have had at least one platelet count >450×109/L, excluding counts associated with ITP rescue medication. Six of 12 patients were able to discontinue concurrent corticosteroids, and 2 had a >25% dose reduction. Individualized weekly doses of AMG 531 provide a therapeutic option for ITP. Most patients have been able to maintain a safe platelet count and to decrease or discontinue concurrent corticosteroid therapy.

    ELTROMBOPAG (PROMACTA)
    The initiation of this trial follows on from promising results seen in earlier trials. In one six week study, at eltrombopag doses of 50mg and 75mg, 70% and 81% of patients respectively achieved the primary clinical endpoint of having a platelet count greater than 50,000/ mL compared to 11% of patients on placebo. In that study 47% and 61% of patients experienced at least one adverse event during treatment with eltrombopag at doses of 50mg and 75mg compared to 59% of patients receiving placebo. The most common adverse event observed during the study was mild to moderate headache, reported in 21% subjects on placebo, 10% on eltrombopag 50mg, and 21% on eltrombopag 75mg. There was no apparent relationship between dose and incidence of adverse events observed in this study.

    http://www.medicalnewstoday.com/medicalnews.php?newsid=58407

    About enrollments up to Jan 2007:
    I don´t know because they don´t inform us about how long this trial will continue but I suppose it will be 6 weeks.

    Kind regards

    Birgitta

37. patti said,

    February 7, 2007 at 1:17 am

    This is going to be a long post – hope your in for the long haul.

    Mom’s appt. with Dr. Karup went well today in terms of communication, etc. I had no idea just how much info the red cross passes on to these guys. She already knew that we had two donors not be able to give on Saturday and that our 3rd donated Sunday. Wow! The nurses at the infusion clinic also knew this info! Obviously, nothing is too private. Dr. Karup talked with us about Danazol. It was a subject I approached with Bonnie a few weeks ago but had since forgotten since all of the Exjade stuff happened. Mom had absolutely no memory of me giving her any information two weeks ago regarding taking Danazol in an attempt to increase her platelets. That is the first time Dr.Karup has seen obvious signs of mom’s mental changes. I’m actually kind of glad she did just so she knew I’m really not going nuts. We briefly discuess the desferal for iron overload but that was it. The doctor does not want to add two drugs at once in case mom reacts to one and we don’t know which one it is. That makes total sense to me. Her take was to let the iron go for 6 weeks if mom wanted to try the Danazol and then we can revisit the desferal. Mom was going to read and think about it. So, Danazol is a steriodal hormone that is used in ITP patients to increase their platelet count. Dr.Karup felt like it was a really long shot for working for mom but also felt that of all the treatments available for MDS this was the only one she felt like presented the least amount of risk to mom and that she would consider trying. She actually came out and said she would never recommend even the “light” chemos for someone like mom because they always dump the counts before raising them and it’s unlikely mom could survive that dump time. She is the first doctor to admit that! The other three pushed us hard to try Vidaza and Dacogen, etc. Well, of course they wouldn’t be good for mom! But those MD’s did not care because they just wanted to try out the latest and greatest drug on mom. She’s not their guinea pig, thank you. Again, I so appreciate Dr.Karup’s honesty.

    Off to Dr.Kou. Not much changed there. More moxa treatments and refill her herbal teas.

    We had some time to waste between appts. so we went to a chair store and tested out about 500 chairs. Okay, maybe about 50. I’ve never seen so many chairs in one place! But they had the rocker I wanted. Hoping to get it soon! Mom enjoyed trying out all the lounge chairs. She was tired so I wanted her to sit lots!

    Platelet transfusion went well. You should have seen that bag! There was 445cc’s in it! Even the nurses were shocked. Ah, Raja is our superman! We are so thankful for him. Transfusion went fine. Later when I called Raja to tell him thanks he told me what happened that we got such a large bag. He said the gal checked him when the bag hit 220cc’s and told him everything looked good and that he could give more if he wanted so he did. He gave double! Too bad they won’t last that long in mom, but they’ll still do her good.

    Okay – the nitty gritty. Mom looked terrible today and had a very unsteady gait. She also smelled awful. And she lies about it! It infuriates me. She was so argumentative today. I couldn’t say anything without her coming back at me. I was good, I kept my mouth shut but wow, it really hurts. I know it’s not personal, I know she’s not running on all eight right now, but it’s still hard. She lambasted me for all the reasons my daughter shouldn’t take violin after 7 years of piano. Huh? Why shouldn’t she? Anyway……

    Mom’s counts weren’t so hot today either. She got two HUGE bags of blood last week (both 340cc’s) that were very fresh (not due to expire until end of Feb.) and she will need a transfusion next week. Not what we were expecting at all. She was lower in platelets as expected with Ron’s donation being less then optimal last week (5000). Her ANC’s were only 200. So this number caused us to go back and reevaluate what her ANC’s have been since before starting the Exjade in August. To us, it doesn’t look like there’s a statistical difference in the numbers which would mean the dump in her white cells was probably not caused by the Exjade. So Marla, this is for your analysis:

    ANC Counts from 8/8/06 to present (Exjade started 8/29)

    8/8 100
    8/17 1600
    8/21 100
    8/29 700
    9/9 4200
    9/19 400
    10/2 1100
    10/10 500
    10/17 500
    11/28 600
    12/5 300
    12/19 600
    12/26 300
    1/9 300
    1/23 0
    1/29 600
    2/6 200

    The highs are at times that the doctor believes the AML was kicking in full force and then she beat it down. So we basically throw those out. So her counts have been trending down anyway and it really looks like it might not have been the Exjade at all. It almost looks likes her counts went up a littel on the Exjade. Thoughts?

    Today her percentages were:

    Neuts: 19.1%
    Lymphs 74.2% (what do these do?)
    Monos 6.7%
    Eosinos 0
    Basos 0

    She always has lots of lymphocytes and almost nothing of everything else.

    So this all begs the question – should we go back on the Exjade for chelation? Her ferritin was 3380 today. Or do the desferal? Or just let it all go in light of how these counts look right now?

    As soon as mom got platelets today she started feeling better and the smell she had went away so it made me wonder if she had started bleeding in her gut a little bit and thus the smell and not feeling well? Don’t know. Probably doesn’t matter. It’s just weird.

    I did talk to one of the nurses at the infustion clinic today. I simply wanted her personal opinion regarding our platelet donors. I know that techincally the body regenerates platelets very quickly, but we are just seeing too many of our donors having a harder time and it really makes me wonder. The nurse told me that just from watching people at the clinic over the years that without a doubt donating more then every 4 weeks (even though they say 2 weeks) makes it too difficult on a person’s body to keep up. Yes, scientifically the platelets are regenerated faster then that, but something about the body just getting tired of it does seem to affect people. That’s my personal opinion. After watching Ron who’s been donating almost every two weeks because of different circumstances, I think his bone marrow just barely gets the new ones out there and we’re taking them again. I do know it takes two weeks to go from stem cell to platelet circulating in the blood. And some of these guys have done it two weeks in a row. So……

    I was able to get two people from our church to join our list. We have six for now but it is likely we will lose Ron’s brother and son. We’ve jogged the rotation so that these guys can all have a three week break and hopefully that will work.

    Okay – I *think* I covered it all regarding mom. Side note regarding Luke’s hives….. it’s not our roof. After two weeks of wrangling and trying to figure this out we got it on Sunday. We took him to church even though he wasn’t feeling any better and as he sat there, he got hives. We were an hour from home so it couldn’t have been our roof. Over lunch Ron reminded me that anytime Luke has something going on in his mouth he gets bad hives. We had both forgotten about that extra tooth in his mouth. First thing Monday morning I took him to the dentist and explained the situation. We have to get it taken out anyway and we were only waiting until he was 9 mainly for maturity reasons. But, in light of trying to figure this out and his history with hives and teeth we decided we need to do it now on the off chance that extra tooth is aggravating something under his palate. We went straight to the surgeon’s office from the dentist. He stuck his finger in Luke’s mouth, pushed around and prodded. Two minutes later Luke pulled his sleeve up, he was covered in hives!! Apparently, this spare tooth is rubbing against the adult tooth that is trying to come in and although it doesn’t hurt him, it’s bugging his body somehow. He did say it hurts when it’s pushed on. So what we think was happening is that he’d brush his teeth in the morning, then run to his room and get dressed. He’d aggravate that tooth by brushing and because the hives didn’t show up for two minutes he was already in his room. Same thing was happening when he’d go to bed at night. So all of the pieces to the puzzle started falling into place. Is that nuts or what?! But he’s been like that since he was a baby. When he was 14 mos. old he got 9 teeth in 3 weeks and that was his first case of really severe hives. Same thing happens when he cuts new teeth, etc. So the good news is, we have found the hive problem. The bad news is, the surgeon can’t take it out until Feb. 23rd! They have to use an anestesiologist (I can’t spell that!) from the hospital because of Luke’s age and he’s not there very often. They did say they would try to get him there sooner but I’m not holding my breath. The surgery iteself is pretty extensive due to the location of this oddball tooth. It’s up in the palate, behind his adult tooth and close to the jaw bone. It will take about 1 1/2hrs they thought for the surgery. The waking up will take longer. Wow, huh? He is scared and I told the doc I would not let them put him to sleep without me being there. He’s such a skittish little guy. I will have to leave for the surgery itself though. I don’t trust anyone with my babies. Guess I’ll have to trust God with him on this one.

    Okay – I think we’re updated. It’s bedtime.

    Until next time,

    patti

38. Administrator said,

    February 7, 2007 at 8:58 pm

    Birgitta:

    Thank you so much for your reply to my questions. I look forward to hearing what the final results will be. When the results are complete, and if you have access to them, I would really appreciate it if you updated for us here. Or provide us with a link.

    Many thanks!

    Marla

39. Administrator said,

    February 7, 2007 at 11:14 pm

    Hi Patti:

    Wow, you weren’t kidding that you’ve got lots going on. I don’t know if I’ll be able to get to it all in this post, but I’m gonna respond to what comes to mind first. I just took a look at your MIL’s ANC record. As you know this is the first time I’m able to see the actual numbers. You stated that your MIL started Exjade on 8-28-06, yet her ANC on 8-8 and 8-21 were 100. That shows that her ANC has dumped in the past “before” she even started on Exjade. So I’m wondering why you thought it was Exjade related? I mean look at 9-9 (4200 ANC) and 10-2 (1100 ANC), and that is while on Exjade. Even if it was her AML acting up, just using her ANC does not confirm it was her AML acting in full-force because a count of her ANC does not tell us if those whites were normal or not. I would expect her “total” WBC to go up and possibly her mid cells, but not necessarily her neuts. Blasts are immature cells and I’m not sure they would be counted as neuts since their size would likely be different. That’s how the machines count the different white cells by their size. I would “not” throw those numbers out on a “hunch.” That’s cherry picking, and not taking the data at face value. I was under the impression from our discussions that there was an definite downward trend since she started Exjade. From the numbers above, your MILs numbers have been all over the place while on Exjade and even severely neutropenic even before Exjade (100 twice before within the same month she began. Were her numbers similar prior? And is that why she even started on Neupogen?) Has she been taking Neupogen at the same dosage throughout 8-8-06 to 1-23-07? Any other changes in meds or foods or habits or herbs, etc? Basically, your MIL was at 100 ANC in the beginning of August 2006, she is now at 200 ANC Jan 2007. She bounced around in between. 200 is higher than 100. I don’t see a steady downward trend. The one zero reading could have been an error, and her ANC could have been around 100 at the time. I’ve had a couple strange readings in the past that did not fit with what I was trending. There is room for machine error since they do need to calibrate them regularly and if the tech didn’t clean it properly just before taking your sample, results can be skewed. Bottom line is, from first blush, I don’t see a definite downward trend, and you may be right that it has nothing to do with Exjade.

    As far as what lymphocytes do, they’re quite complicated. There are T-lymphocytes and B-lymphocytes which commonly fight viruses (neuts tend to fight mostly bacteria). The lymphocytes also produce other subsets of white cells called interleukins and interferons and other types of immune cells like the CDs. There’s a whole range of those and the lymphs produce those or trigger the production of those depending upon the internal environment. Those cells aren’t even counted on a regular CBC. So you can see that we have lots of immune fighting cells aside from what you see on a standard CBC. I know we had a brief discussion about whether or not your MIL should take antibiotic if she were to develop an infection if her neuts were zero. I was registered at zero at one point during an infection, yet I had a fever. Apparently, fevers are induced by a certain subset of lymphocytes called interleukins. IIRC, it’s interleukin III. I believe they are aware of about 11 or 13 different types of interleukins. There are also cytokines and other white cells that are not technically lymphocytes or neuts like natural killer cells and a few others. The monocytes are yet another type of immune cell. The immune system is very complicated, and just the neut numbers doesn’t tell us all. However, if a person were missing all their lymphocytes, then they would be in pretty dire straits.

    I hope you found Luke’s problem and that taking care of that tooth gives him relief. Let us know how that goes. It would really be great if that solves it all!

    As far as platelet donors, none of the 6 donors I had had problems. And I didn’t get them all at once, so some of them did donate very frequently in the beginning. When I found that one friend whose platelets worked for me, he was the only one donating for several weeks. Then I found another person, who worked. Due to some logistics, the 3rd donor I got had to donate quite often as well, yet had no problems with platelet recovery. Actually, none of my regular platelet donors got turned away except one did “once” because she had high blood pressure that day. And I was transfusion dependent on platelets for 17 months taking them once a week. I did have one person whose platelets actually worked well for me, but he couldn’t donate regularly because he registered at low platelets a couple times and he was a hard stick. They just told him not to bother anymore cause they were not going to take him. He was not included as one of my 6 regular donors. Regarding his low platelets, he’s a marathon runner. And they told him that it is common for long distance runners to have low platelets and reds. All that pounding on their feet for long distance running hemolysis blood and it’s common for them to have fragmented cells. Same with serious hand drummers from pounding their hands on the drums for hours. So I don’t know what’s happening to your platelet donors. Although with your BIL, it’s his blood pressure, not his platelet level that is rendering him unable to donate. It would be interesting to know other other people’s experience, but from my regular 6, they did not have problems. One of my donors was a regular donor before I ever got sick, and I found out that the blood bank loved him cause he double bagged every time. I didn’t know that until they were telling me that they split bags for babies cause they use only half. So his really went a long way. And one of the gals also had been a regular donor for a couple years prior when her neighbor needed cells. Even after he died, she continued to donate and has become a regular donor since. How many times has Ron donated platelets now? I see how hard it is to get regular donors. Not only do you need someone who is willing, but someone who can do it. I never realized how many people are on meds and have other health problems that aren’t even qualified to donate until we started letting people know I needed blood. I have since learned that I really lucked out. It’s a really scary feeling when you get these cells and you don’t get a boost. I had plenty of those “blanks.”

    I’m glad that you found the rocking chair you wanted! How nice! So what’s it look like? My rocking chair could use some cushion, heheh.

    Okay, I think that’s about it for now. Thanks for all the update and definitely let us know how Luke’s coming along! Will keep him in our prayers that his hives will stay away! Curious about the mouth connection and hives? How does that work? What in the palate or mouth causes hives? The body is really amazing, huh?

    Marla

40. Administrator said,

    February 8, 2007 at 12:03 am

    Patti:

    Was just doing a quick search on what the differentials might look like for someone with AML and here’s the first thing I came across for AML:

    White cell differential count (compare these to normal values)
    blast cells 95%
    neutrophils 1 %
    lymphocytes 4%

    https://courses.stu.qmul.ac.uk/SMD/kb/cardioresp/blood/blood3.htm

    This is an example of what I mean that the neuts wouldn’t necessarily go up if your MILs AML was kicking up. As you see in the above example, the neuts are at 1%. Blasts tend to be a different size from neuts and would be counted as blasts cells or if the machine wasn’t as sensitive, then would be counted as “mid” cells which clump up the rarer cells and immature cells. If your MIL had 4200 ANC, those aren’t blasts, but neuts, as far as I understand.

    Take care!

    Marla

41. patti said,

    February 8, 2007 at 8:32 pm

    Just testing….. I posted a long message this afternoon and still can’t see it. Can anyone else????

    patti

42. Birgitta Alexius said,

    February 9, 2007 at 10:45 am

    To Patti,
    No, your pc must have swallowed it!
    Kind regards
    Birgitta

43. patti said,

    February 9, 2007 at 11:18 am

    Arrrgggghhhhhhhhhhhh! Marla, I had a ton of info on that post. I can’t repost it right now. I’ll do it later. I don’t understand why my machine does this!!

    patti

44. patti said,

    February 9, 2007 at 1:32 pm

    Okay – I’m going to start this over again. I hope I can remember everything I wrote.

    So I am learning one very important lesson here, ALWAYS look at the numbers over a long period of time. It’s so easy for us to look at the week to week numbers because that’s quick and easy. When mom’s ANC’s came back low this week she and I put her ANC numbers together from August until now and could see that there wasn’t much change. That is how we decided that it probably wasn’t the Exjade that caused the lower ANC’s. Wait until you see these numbers……. these are ANC numbers from Jan. 1 until the Aug. date above.

    1/24 400
    2/17 1100
    2/21 400
    3/2 1500
    3/7 800
    3/15 3600
    3/21 600
    4/4 400
    4/13 1300
    5/4 4300
    5/30 900
    6/27 400
    7/18 500
    somwhere between 8/1 and 8/4 her picc line was put in.

    If you look at these numbers with the ones in my previous post it gives a full year’s view. While her ANC’s were all over the place the first half of the year, they were generally higher. The dump took place when she got her picc line! That was also when she became platelet tranfusion dependent. So while we felt like she didn’t have much choice for getting the picc because of her veins, it obviously caused some stress and damage to her body. The Exjade isn’t totally off the hook though. I also compared her dosage of Exjade with corresponding ANC counts. On 250mg her ANC’s were 500-600. On 500mg the ANC’s were 200-300. They went back and forth because she was literally going back on forth on Exjade doseages almost on a weekly basis for over a month or so. So while there were some mild changes to her ANC’s while on the Exjade, the bulk of the damage appears to have been done by the installation of her picc line.

    Also, the two high counts in the last half of the year (4200 and1100) I was able to pin down to neupogen shots. On the week she had 4200 she had seven neupogen shots in a row. This was done because they were prepping her body for a central line to go into her chest (which was never done). The 1100 she had had 3 neupogen shots in a row. She had these extras because she had started getting sick or something and they decided that was the best course of action for preventing it from becoming something major. So both of those counts I can “account” for with shots.

    So the bottom line is, should we go back on the Exjade knowing what we know now? Or quite frankly, is it even worth worrying about? My thought is, it’s not worth worrying about right now.

    Percentages – these were her percentages on 2/6/07

    ANC’s 19.1%
    Lymps 74.2%
    Monos 6.7%
    Eosinos 0%
    Basos 0%

    From your explanation of lymphocytes, Marla, is it possible that the reason she’s done so well with not getting infection isn’t so much because of her ANC’s but because of her lymphs being so high? You said ANC’s fight bacterial infections – but if you think about what comes down the pike most often it’s viruses. Colds, flus, etc. Mom has done very well staying healthy that way.

    I understand what you’re are saying about AML counts. So her blast count at diagnosis was >30% (did I type that right? – should be greater than 30%). That was almost 3yrs ago. The last 2 docs have said she has AML and the “expected” her blast counts were well into the 60-70% range. But really, without a biopsy, there is no way of knowing that, right? She did have blasts circulating in her blood at one point but it was a small amount. It did correspond to one of those times when her total white cell count jumped many thousands in one week (back in ‘06 sometime). That’s been the only time they’ve seen blasts in her peripheral blood.

    This has all been incredibly educating. You are right, the numbers do not tell it all! And more importantly, we need (we must!) look at them over a year at least to see any amount of a trend. She is trending downward, but again, I now believe it was the picc placement that precipitated that.

    As for platelet donors – I talked to the head of aphresis at the Red Cross this week and she said that absolutely it becomes a problem when folks are donating every few weeks. She said she donated for a year when her FIL had cancer and she finally had to quit. She said she was only donating every 6 weeks but it got very hard after awhile to have a high enough count to donate. She also said that donating platelets is very hard on the body and with these guys going every other week sometimes it is even worse. So while I understand that it only takes two weeks to go from stem cell in the marrow to platelet circulating the blood stream, there is more at play then just that. One thing that has been very noticeable with our donors is that the ones in their 20’s have no trouble at all. Those in their late 40’s have more difficulty ramping back up. So there may be something to say about those extra 20 years of bad eating habits! Were most of your donors in their 20’s? Right now, Ron is the only one that seems to be struggling to regain from the actual donating. If both David’s have trouble again we will pull them from our list. We’ve added two folks from our church so we’ll see how they work out.

    Question about one of our donors – it’s our young guy in his 20’s. Last time when they reached 220cc’s (their stopping point) the nurse told him everything looked good and he could donate more if he wanted. So he said okay. They collected 420cc’s and then added 25cc’s of anticoagulant. So mom got all of those platelets. But since they all die off at the same rate basically, is it a bad idea to have him do that? I got to thinking about it later and wondered if it wasn’t really buying us anything because mom still won’t be able to go beyond Tuesday will she? Or will she? I don’t fully understand that.

    I think that it’s on mom stuff **************

    As for the rocking chair I found – it’s soooo nice! Spendy. $500 on sale (the markup on furniture is huge). It has very thick cushions. We measured 5 inches thick on the seat cushion and 4″ on the back cushion. It has thick, strong rungs between the arm rests and the seat which is very important for back stability. That was my husband’s request. My current chair doesn’t have the extra rungs and he says it weakens the chair over the long term. The ottoman also has a 5″ thick cushion. Not quite as wide as my current ottoman but very sufficient. The chair is wide like my current one so would be comfortable with me and one kid on my lap (a must!) They had a dark blue, dark green, dark tan, and maroon. The blue, green or tan would match my living room well. My current one is green but I’ll probably get blue because that’s the color I buy for everything. I’m tempted to get the dark tan for stain purposes but these are stain guarded and also after 15yrs my current chair has no stains so I don’t really think that would be a huge issue. They had these exact colors in a little bit different chair but for $50 less so mom and I decided we’d see what $50 buys. Guess what? It’s buys a lot!!! Those chairs were smaller in width and not near as comfortable. I was very surprised because usually that small amount wouldn’t matter much. It did here! I am so so glad I didn’t buy a chair off the web like I was about to. Furniture stores will order them for you but they don’t stock them for you to sit in and try out. I just “happened” to see this ad for a chair store and decided to check it out. I’m so glad I did. So, I think that’s what we’re going to go with. Looking forward to it.

    Hives can either be caused by an allergy or stress. In Luke’s case they are always caused by some stress in his mouth. Started when he was a baby. It’s just that this fake tooth is out of sight so it was totally out of our mind when all this hive stuff started. And really, who would think that would cause hives this bad?! The false tooth is somehow putting pressure on his two adult front teeth. It’s preventing one of the adult ones from fully coming down. It doesn’t hurt him if he’s just sitting there but when the surgeon pushed on it, it hurt. I guess his body just feels that stress and gives him hives. So weird. But at least we figured it out. It seems like little things aggravate it right now. He had the stomach flu night before last. After he was done throwing up for a few hours I gave him some saltines to see how he could handle them and it gave him hives. The sharp edges apparently annoyed his palate. So I’m trying to keep him on a diet of mostly soft foods that won’t irritate it so he won’t get hives. Last night he got them bad enough I had to treat them. We’ve been trying to just use the aloe vera gel unless they get to a certain point where they’re all over his body and the itching is uncontrollable. I did call the surgeon’s office and ask if they’d talk to the drug guy. They were still waiting to hear if he could come sooner then the 23rd. I’m really not holding my breath. But praying anyway they’ll come through early for us.

    Okay – I think I got it all back here now. I’ll cut and paste this time!!

    Patti

45. Administrator said,

    February 13, 2007 at 11:14 am

    Hi Patti:

    Been a bit behind with my emails and blog. . . I was just going through my stuff and found your first post in the middle of all the spam that got caught in my filter. I checked “not spam” for your message, but I’m afraid to do much more to it cuz I don’t want to inadvertantly mark all the other spam as “not spam.” That’s all I need is a bunch of prescription med adverts and gay porn, Ha! Supposedly my program deletes all those marked as spam after 15 days in cue, so I’m hoping that it doesn’t wipe your post out. OR if you want, I can copy and paste it on here. Or is it just duplicate? I haven’t read it yet, but just saw it and wanted to let you know that you didn’t do anything wrong, nor did I block you purposefully! Ha! Okay, I’m off to get caught up a bit. Let me know what you want me to do with that original post. In the meantime, I’ll read it.

    Marla

46. patti said,

    February 13, 2007 at 8:02 pm

    Marla,

    Ah! So you’re spam filter is the culprit for my lost post??? : ) Don’t worry about posting it here because my second post says just about everything the first one does. So, how come my second post hit okay but not my first? Am I selectively spammed out depending on which phase of the moon we’re in? : ) I’m kidding!

    I’ll have to post about mom’s visit today later. Too tired…..

    patti

47. patti said,

    February 13, 2007 at 10:47 pm

    Ha! Marla, my last post is stuck in your spam filter again. I think your spam filter just doesn’t like me!

    Quick update on mom. She had platelets from a new donor today. She had a mild hive reaction and I asked the nurse to see if they’d resolve before giving anymore benadryl (she was going to give it right away). We waited 15 minutes and they resolved. Two huge pints of blood today. I warned mom to be very careful because of the fluid overload. These were as large as she got last time and she had a hard time for days afterwards. She’s going to take extra cornsilk and dandelion tinctures tonight and tomorrow night (she normally only takes them once a day) and hopefully that will head off any heart/lung issues. We are unsure about this platelet donor at this point. The mild hive reaction is not a concern but he was a low donor. They even tagged the platelets as low. We’re going to see if mom has any bleeding issues by the time she goes next Tuesday and then decide if we should have him donate again or not. We’re thinking to have him try one more time because it’s soooooo hard to find donors. I will also be contacting the red cross about the few good anonymous donors that worked for mom previously. Was going to do that last week – sick kids. ugh. That was pretty much our day. Mom needed her picc dressing changed and with me having been sick up till last night I didn’t want to get near her picc so we asked the nurse to do it. He moaned and groaned because we have gauze under the tagaderm and it’s so hard to get off. Waaaaa. He didn’t want to put the gauze back on but mom told him he had to so her stitches wouldn’t poke her. He slapped two open gauzes on her arm and put the lumen almost on the side of her arm so she wouldn’t be able to sleep on it! I was so mad. I had another nurse give me some face masks and when we got home I had to tear the whole thing off and start over. grrrrr. The other nurses are really good about dressing it the way that works for her, but this guy was so lazy. It made me mad. Marie had to go to Dave’s today because we couldn’t have her in this house full of sickness. Grace is still recovering from the flu and I have one more kid that hasn’t had it yet (and hopefully won’t get it!). I haven’t really had a chance to check with Marie but it seems like all went okay. I’m glad because she really doesn’t have much of a relationship with them so it could have been very awkward. To Marie, they’re just other people, not really family.

    I guess that’s it. We have not made a decision on danazol yet. Still waiting for your take on that Marla. It’s such a slight chance it will work (almost zero for mom) and the risks are that it could lower her whites and reds. So at this point I’m thinking the risk outweights the benefits. Your take???

    Oh, before I forget. Mom’s last transfusion only lasted two weeks (she could have transfused at the one week mark actually) so it will be interesting to see how long this one lasts. Both bags of blood had way out expiration dates and they were large (307mL’s). We see Dr. Karup on Tuesday.

    Okay – to end with a little kid humor. Two weeks ago mom came over here to have her dressing changed because it had gotten wet or something in the middle of the week. I made my kids stay out of the kitchen because I didn’t want little germie faces watching/breathing on us. At one point my son was getting ready to come in the kitchen and I told him to stay out. He looked at my daughter behind him and said, “Don’t go in there, mommy’s performing surgery on grandma!” It was sooooo cute. I told mom about it today and we had a good laugh.

    Until next time……..

    patti

48. Administrator said,

    February 15, 2007 at 11:32 am

    Hi Patti:

    From what I understand, Danazol is a male hormone (steroid). It has been used for some female problems. One thing discovered from using it with females is that the patients had an increase in reds and platelets. I don’t think they really know the full action of Danazol on the blood and why it has shown to raise some people’s blood levels. It was not originally prescribed for that purpose, just that the side effect was stumbled upon, is what my doctor told me. I do know of a couple people who have seen their hgb rise with it, but those two are AAers, not MDSers. So as far as your MIL trying it, well, I suppose you’d have to think of any side effects that she might object to. Since it is a male hormone, it does have the tendency to make you grow more hair (like facial hair), deepening of the voice, and other male qualities. . . Personally, I would care about that, but she may not. Not so much because of vanity, but because I would prefer not to mess with my hormones. But at the rate of her transfusions, she may want to give it a shot. One factor that was different in my case was that by the time Danocrine/Danazol was suggested to me, there was a incident that swayed me from it (personal, and I’ll write to you privately about it), plus my I had some regular donors in place and the transfusion routine was starting to become easier. Has she been on any steriods like Pred before? If so, how did she do on it? What does Dr. Karup and Dr. Kou think about it?

    Regarding getting “extra” platelets, I found it useless and actually more of a problem because my body just wouldn’t hold on to more that one week’s worth of transfused platelets, no matter how many extras I got. I did get a chance to experiment with it and the only difference I noticed was that I broke out in hives with a donor that I never used to break out in hives with. He is one of them who would always double bag, and this one time they didn’t split his bag and just gave me the whole thing. Result? I broke out in hives, my CBC was at 110K instead of the usual 70-80K, but it didn’t matter because when the week was out, I was right back at my usual 2K. For me there was nothing gained but hives. Plus, someone else lost out on a perfectly good bag of platelets. Interestingly, when I went back to the usual half bag, I didn’t break out in hives. So I do think the more that is infused, the more risk of reaction. Only take what’s sufficient. Ha, that kinda reminds me of the Isrealites in the wilderness collecting the manna each day. They were instructed to only take enough for that day, and not to store them up. Those that did found that the extra they collected was spoiled and were worm/bug infested the next day. Not sure if that is relevant here, just that the I was just reminded of the story.

    Regarding the ages of my donors, I had one who was in his early 20s and one who was in her late 20s. The others were about my age or a tad older. I was diagnosed when I was 34 and transfused until I was 36. It’s interesting how we get conflicting information on so many things. I do know that at the blood bank they have a wall with names on it of their “star” donors. They list how many pints, quarts and even gallons of how much each one has donated. In the older days, phlebotomy was considered therapeutic. Helped clean the blood by getting rid of “old” blood and allowing the body to make new fresh blood. The blood bank has even told my donors that it’s especially helpful for guys to phlebotomize because sometimes their iron levels get too high. Girls have monthly periods so they lose blood regularly, but guys don’t. So for guys, phlebotomy is supposed to be a good thing. . . Anyway, I’m sure there’s another take on it, but that would be for another time.

    As far as your donor’s platelets dying at the same rate, I don’t think they are all the same age. That is, you probably get a mixture of older and fresher platelets that his body has been producing. But as I mentioned above, my body did not react well to getting extra platelets. Then again, I tend to be very, very sensitive to platelet transfusions, breaking out in hives with practically every “random” donor.

    Glad you found your rocking chair! And hope that you’re all recovered from the flu. The weather has been quite warm here in Los Angeles, and no flu in sight so far. . . Hope it stays that way.

    Regarding your son and stress, I wonder if he would benefit from eating more adrenal friendly foods? Only because the adrenals are very involved with one’s ability to handle stress. If he could handle stress better, maybe he wouldn’t react with the hives?

    Okay, better run for now. If I missed anything, I’ll try to continue later. Oh, yeah, the white blood thing for your MIL. . . It’s not so much that you MIL has lots of lymphs, but that she has adequate amounts of it. Remember, if her total WBC is low, then even at 90% lymphs, the absolute number is still going to be low. So, she technically doesn’t have “high” lymphs, but less of the other whites which make her lymph percentage look high. Basically, she has adequate levels of lymphs. Gee, and I didn’t even mention immunoglobulins. If those are good, then that’s even more protection for her. And that is why I think when my neuts were very low, the main issues I was having was with cuts or any sores. Those could easily get infected and cause lots of grief.

    Okay, did I say I was going? Ha! This time I am. Toodles for now! And again, thanks for all the updates!

    Marla

49. Administrator said,

    February 15, 2007 at 11:50 am

    You know there is one thing I just remembered. After recovering from AA, I had iron overload for which I undertook phlebotomy as my therapy to reduce iron. I removed 500mL each month for 2 years. Towards the end, I even picked up the rate to once every two weeks. Normally, red blood donors are allowed to donate red blood every 2 months, so essentially, I was doing double time for 2 years. Fortunately, I was able to maintain my hgb during that time without trouble.

    Just a thought,

    Marla

50. Andrea said,

    February 19, 2007 at 8:39 am

    Hi Patti, Just wanted to say hello, and thanks for the cute story about your son!

    Hang in there, Andrea

51. patti said,

    February 20, 2007 at 10:30 pm

    This will be a fairly quick update as I’m exhausted. Mom’s appt. with Dr. Karup went well. She’s really developed more of a relationship with mom and spends a ton of time talking to her (an hour!). Outcome of appt. with Karup is mom is stopping the neupogen shots for two weeks. We’ll check next CBC for white cells. She had so few today they had to be hand counted. I never did get the count because she said it takes awhile. Dr.Karup reviewed mom’s counts since last August and agreed that the neupogen probably hasn’t worked for 6 months or more. Since she’s so low this week I told her she really can’t go any further down – the only way to go is up! Nonetheless, I think the days of neupogen are over.

    No go on the danazol. Just seems to big a risk for the smallest minute chance that it might work. Karup also wants to forego any treatment for the iron overload until mom’s liver numbers are worse. They are elevated (normal is 35 and she’s at 58) but not bad enough to get excited about when we have other fish to fry.

    Mom was actually HONEST today with the doctors for the first time! She told both Dr. Karup and Dr. Reuter that she’s tired most of the time. She sleeps a lot during the day. She doesn’t feel like eating much these days. That’s the most honest she’s ever been!

    She is tired. We actually had a short day today. We were home by 3:30! Mom slept from 1:30 until 2:45 and then again from 3:30 when we got home until 4:30. And she was still tired and was going straight to bed when I took her home at 5:00. Amazing. Marie was furious when we walked in the door and mom told her she needed to go lay down. I mean she was mad! I told her we had a long day and mom just needed to rest but it didn’t matter – it never does.

    The platelets mom got today were so good! Some of you have heard this story but I’ll relay it for those who haven’t. It only proves to me just how much God has his hand on this situation. We have had two very bad weeks with illness and donor unavailability. We had two donors unable to give over the weekend and we were out. We had no more because my husband had the flu. There are five anonymous donors that worked for mom when she first started getting platelets last summer. We asked the Red Cross to pull them and contact them to see if they’d be willing to give. Well, one of those donors just “happened” to be a nurse at the Aphresis clinic of the Red Cross. She’s been pulling platelets from our donors for months so she knew who all of them were. That day when she got off of work she donated directly for mom. We will never know which nurse it is, but how likely is that to happen????? And mom does soooooooo well with this person’s platelets! No fevers, no hives, just a good match. I just couldn’t help but seeing that God had his hand right on this situation. We are trying a new donor this week and hopefully Ron and his nephew will be well enough to try again next week. Ron was low last time so we’re hoping he’s better now. I’m sure being sick hasn’t helped his body any.

    Appt. with Dr.Reuter went well also. Basically talked about diet, appetite, etc. Mom informed Dr. Reuter (don’t know why not Karup) that she had broken out in yeast on her arm. She dealt with it with the nystatin which has always worked. BUT – she used the nystatin on her dry legs also because she said she couldn’t remember what it was for and thought it might help her dry legs! I’ve had her using Eucerin for quite a long time for the dryness and it has worked fine. I mean she just completely lost what the nystatin was for! But because it worked for the patch on her arm she thought she may as well use it on her dry legs. Oy. That’s scary. She’s got a lot of drugs in the house! I have them all labeled and everything but it’s getting a little to scary now.

    My only concern tonight is the fact that she got yeast on her arm again. She had it all over her body when she was diagnosed and with being so neutropenic there is some concern this is rearing it’s ugly head again. Yeast is a difficult thing to kick in an MDS patient. It also appears she may have some in her throat. She literally cannot eat if she doesn’t drink something to help her swallow. It’s like her throat is clogged???

    That’s it for today. I’m skipping all of the peripheral stuff that happened this past two weeks because it caused me a great amount of anger. Suffice it to say, mom will have heat again tomorrow and will no longer be freezing. Due to her own stubbornness.

    As a side note —– please pray for my son Luke this Friday morning the 23rd. He will be having pretty yucky oral surgery to remove a tooth that is in his palate and pressing on his sinuses. He’s had a nonstop cold for 4 weeks because of this and it’s also the reason for his hives. The recovery is supposed to be extremely painful for 2 weeks and I am praying it’s not so! He’s such a little guy to go through this. I wish we could wait, but it’s obvious God had other plans so off we will go to do it. Thanks,

    Until next time,

    patti

52. Andrea said,

    February 21, 2007 at 8:07 pm

    Hey Patti–Quickly wanted to tell you about a treatment–Threelac–for yeast that people rave about. Might be worth looking into. I’m thinking of getting it for my mom’s yeast, which is quiescent but flares up if she eats ANY sugar at all.

    I’ll certainly pray for Luke. Reading “the 23rd” reminded me of something I promised my daughter I’d do for her on that day–so I’ll pray for Luke while I’m doing it (taking her car to the shop).

    Hang in there, Andrea

53. Administrator said,

    February 21, 2007 at 11:35 pm

    Hola, I’m pushing my computer time again, so will make this short. Basically wanted to comment that I will be praying for Luke on the 23rd, also! Will post a little on some of the things I’ve been experiencing recently regarding sugar and low carbing stuff for yeast overgrowth.

    Take care!

    Marla

54. patti said,

    February 27, 2007 at 11:48 pm

    This is going to hopefully be short as I’m so tired tonight. Here’s the bottom line:

    Had to run a stat CBC on mom today because she was feeling like garbage. She had been having bloody noses for the past four days and some pretty hefty gum bleeding. Not normal for her since she had gotten a platelets from a good donor just three days prior. Counts showed she needed blood this week instead of next as it should have been based on her counts last week. Her total white cell count was down to 500 from 900 last week. Her ANC’s were zero. Platelets 5000. Not sure what is going on but it can’t be good. She did have a slight fever before we started platelets today but it went away when she took the tylenol with her pre-meds. Didn’t come back as far as I know. Tomorrow she’ll get blood and we’ll go from there. She went from 900 to 500 in one week and it’s her first week without neupogen. Do we assume it was working since she dropped so low this week? Coincidence? However, with or without the shots, her ANC’s are still zero. So what gives? This is all I can write for right now. It’s late and I still have tons to do before I can go to bed as I need to prepare the day for Ron and the kids. I hadn’t planned for this to happen so it caught me a little off guard with my scheduling.

    Thank you for praying for Luke. He’s doing very well. Unfortunately, this has not yet resolved his hives as we expected it would. It has totally cleared up his sinuses. Ron is not ready to jump into anymore checking on the hives because Luke is still healing and he does have a loose tooth and he just lost one last night so there’s really too much going on in his mouth to pass judgement at this moment. Also, when those adult teeth come in he’ll have problems so it may all still be his mouth.

    Gotta go. More later.

    patti

55. patti said,

    February 28, 2007 at 8:24 pm

    Today, I turned 37. I’m just getting way too close to 40! My hub took the kids to the store so I could have some peace and quiet for a bit to unwind from a rather hectic few days. What a man! And the quiet is so
    nice.

    I thought I’d elaborate a little on the latest with mom. Backing up to yesterday – Mom saw Dr.Kou in the morning. He added turtle shell to her herb formula. It’s supposed to help increase white cells counts. He also gave her some bitter herbs made into a tea that he had her swish and swallow. He told her to do that throughout all of yesterday with the cup he gave her. Just a little at a time. Mom said bitter doesn’t describe this tea! But she’s so disciplined and so willing she said if it will help her she’ll do it without complaining. I can say with all honesty, I could not be as disciplined as she is. It’s just not in my make up. Paul in the epistles calls it temperance. I could use even a little bit of her temperance!

    After Kou mom got platelets from a new donor. She did very well with them! She had one teenie hive which is normal for her from a new donor. She instantly felt better after getting the platelets so we are presuming she must have been leaking blood in her gut or something and the platelets clotted it off. It was like a night and day difference. She’s had no bleeding today. No difficulties getting blood today. I’m wondering if they increased the size of donations they are taking now because she used to get bags that were 245cc’s as the norm and these past few transfusions they’ve all been 300 cc’s to 325 cc’s. That’s a lot of blood for her body to handle. She ends up having to take a lot of dandelion and cornsilk for several days until her body assimilates it. So for now, she’s feeling better again. Still not much energy, but she looks better. Not so grey. She told me she’s been looking very grey lately. And she has. But who walks around telling someone that? My mom always told me that grey look was heart weakness but I don’t really know for sure.

    Someone posted a very interesting article on the MDS Forum yesterday that I want to share here because it’s so pertinent to someone choosing to do drugs or not in their treatment of any kind of cancer. This is long but I do not have the link for it so please bear with me.

    From the New York Times:

    Studies Show Anemia Drugs May Harm Cancer Patients

    By ANDREW POLLACK
    Published: February 27, 2007

    “New studies are raising questions about whether drugs that have been used by millions of cancer patients might actually be harming them.

    The drugs, sold by Amgen, Roche and Johnson & Johnson, are used to treat anemia caused by chemotherapy and meant to reduce the need for blood transfusions and give patients more energy. But the new results suggest that the drugs may make the cancer itself worse.

    In the studies, the drugs have generally been used in ways not approved on the labels. And the companies say that, when used according to instructions, the drugs have a long history of safety.

    In a statement yesterday, Amgen said it strongly believed its drugs were “safe and effective medicines when used in approved populations consistent with label dosing recommendations.”

    Nevertheless, some cancer specialists and securities analysts say the new information may make doctors more cautious in using the drugs, which have combined sales for the three companies exceeding $11 billion and have been heavily promoted through efforts that include television commercials.

    “These are drugs that were presumed to be entirely safe, given for supportive care and to improve quality of life,” not to actually treat cancer, said Dr. Eric Winer, director of breast oncology center at the Dana-Farber Cancer Institute in Boston. “So any concern that they could shorten someone’s life are taken quite seriously.”

    The Food and Drug Administration is planning to convene an advisory committee meeting to review the products, Dr. Richard Pazdur, the agency’s director for cancer drugs, said in an e-mail message last week alerting cancer doctors to the new findings.

    All the drugs are versions of erythropoietin, or Epo, a substance made by the human kidney that increases levels of hemoglobin, the oxygen-carrying component of red blood cells.

    Amgen makes Aranesp, with sales of $4.1 billion last year, as well as Epogen, which had sales of $2.5 billion, although Epogen is supposed to be used only to treat anemia in kidney dialysis patients.

    Under license from Amgen, Johnson & Johnson sells Procrit in the United States and Eprex abroad, with combined sales last year of $3.2 billion.

    Roche’s drugs NeoRecormon and Epogin, now sold only outside the United States, had sales last year of $1.8 billion. But Roche is hoping to enter the American market with a new drug called Cera.

    Amgen has the most to lose from any setback because it relies more heavily on the Epo drugs, which account for nearly half its revenue. Amgen’s stock touched above $75 briefly in late January, before word of the negative studies began emerging. The shares closed yesterday at $66.20, down 3 cents.

    The new doubts about cancer safety add to those raised recently regarding the drugs’ other major use — to treat anemia caused by kidney disease. A study published in The New England Journal of Medicine in November found that patients treated aggressively with Procrit had a higher risk of heart problems or death than those treated less aggressively.

    The run of bad news for cancer treatment started in late January when Amgen announced that in one of its clinical trials, patients getting Aranesp were more likely to die than those getting placebo. The trial was testing the drug in patients whose anemia was caused by the cancer itself, not by chemotherapy.

    On Feb. 16, the Cancer Letter, an influential Washington newsletter, reported that a Danish study in patients with head and neck cancer had been stopped early because the cancer seemed to recur more in patients being treated with Aranesp.

    Last week, The Journal of Clinical Oncology published a paper online describing a small Canadian trial in lung cancer patients that had been stopped early because those getting Eprex were dying sooner.

    And on Friday, Roche said it was suspending patient enrollment in a lung cancer trial comparing its Cera against Amgen’s Aranesp because of apparently greater than expected number of deaths in at least some of the arms of the trial.

    It is not known why the drugs cause problems, if they do. It is known that raising hemoglobin levels too high increases the risk of blood clots. And most of these new trials did aim to increase hemoglobin above the levels recommended in the drugs’ labels, though that was not the case with Amgen’s own trial.

    But there is some evidence that clots were not the problem in these trials. Rather, some experts say, Epo may spur tumor growth. Some studies suggest that certain tumor cells, such as those in head and neck cancer, have proteins on their surface that bind to Epo. When that happens it sets off a cascade of reactions spurring growth.

    “I think there’s enough biologic plausibility to the argument that they can serve as a growth factor for the cancer cell,” said Dr. Jennifer R. Grandis, a professor at the University of Pittsburgh who has done studies of the matter. She said the head and neck cancer practice at her institution does not routinely use Epo and that she would not want it herself.

    But Dr. David P. Steensma at the Mayo Clinic, who has reviewed studies of Epo safety, said the existence of Epo receptors on tumors had not been proved because the studies have been flawed. He said that there have been previous studies of the drugs that suggested they actually had a positive effect on survival.

    A combined analysis of 57 trials concluded the impact of the drugs on survival was uncertain.

    Dr. Steensma said he was still comfortable using the drugs to correct severe anemia, but added, “I think we need to be real careful about going beyond that.”

    Concerns about the safety of the drugs for cancer were first raised in 2003 by two studies that showed patients getting Epo had worse outcomes. But some experts said those studies were flawed and not convincing.”
    ****************************

    It’s extremely important, I think, to understand that MDS and leukemia fall into this range of cancers that cause anemia. For mom, this means that the 9 months she was on procrit and aranesp was probably detrimental to her overall health. Neither drug worked for her and we took her off of it based on this very thinking – that if it wasn’t helping, it was growing SOMETHING. While mom’s NP agreed with us, her doctor at the time did not. What’s interesting and makes me wonder is mom quickly went from having transfusions every 12 weeks when she was diagnosed to being dependent about 3-4 weeks during the 9 months she was on those drugs. To her, she could never understand why. She kept telling me it shouldn’t be time for another transfusion because the previous one was 5 or 6 or 7, etc. weeks earlier. Based on this article, both the procrit and aranesp would have contributed to the rapid growth of her bone marrow malfunction. While we’ll never really know, it is interesting. And maybe it would have not changed where we’re at now, but I can’t help but think it would have. At least pushed things out further.

    Which brings me to my parting thought. The only “medical” drugs we’ve taken for mom’s disease itself are procrit/aranesp and the neupogen. One is for red cells growth, one for white cell growth. Would we do these things again? I think I can clearly answer “no” to that question. I do not think that she would have suffered any infections had we not taken the shots and just left well enough alone. She would have been low in whites, to be sure, but not any lower then she is now and certainly not much lower then she was prior to her picc. Even if she had 1200 white cells two years ago w/o the shots, it still would be more then she has now. And, there is the possibility that without them her disease would have progressed at a slower rate.

    And so when struggling with the dilemma do we do anything medical or go all natural I would have to say I lean further toward forgoing anything medical. Including their shots. We always felt like these were pretty “okay” as long as we could see they were helping. But down the road, you learn things like this and you realize you would have been better off leaving well enough alone. We’re not “regretting” the decisions we made because we used the knowledge we had at the time, but we would do it differently if we could. So for me, it’s instructive for my future and the future health of my famly but it really won’t do mom any good right now.

    Just wanted to share that with folks because mom’s therapy has basically been a “complimentary approach.” While mostly natural, she has used medical drugs to try and accomplish some things. It wasn’t worth it. I pray others can learn from our mistakes.

    God bless, signing off for now,

    patti

56. Andrea said,

    March 1, 2007 at 7:15 am

    Hey Patti–I love Wednesdays, I always know there will be a juicy post from you, Tuesdays being you “mom” day.!

    I’ve been following the discussion about Procrit with interest. It was never suggested by our doctor, and I’m glad. Who knows where Rob would be now if he had taken it?

    I’m going through the same kind of discussion now with my 24yo daughter. She is struggling with anxiety and depression, and also with–Do I trust my Mom and my self and God, or do I trust the world? The world is telling her that’s it is irresponsible NOT to take anti-depressants (and pad the pockets of the drug companies). I say–meditation, prayer, exercise, yoga, patience, church. She has a grown daughter’s natural skepticism of anything her mother says, especially when it SO contradicts what the world screams at her every day. On the other hand, she took antidepressants for a few months in college They made her sleepy, unable to write clearly and get up on time, but no happier. So she dropped them. And her father, who defied his doctors and is now rosy-cheeked, going dogsledding, climbing up on roofs with contractors, is a good testimony to following your heart, your gut, and your God.

    So, I’m praying, and I’d love your prayers for her (Laura is her name) as well.

    Speaking of praying, Lynn is better!! She has had NO heart issues now for a month!! She is resting more–I’ve taken over on Sunday School music–and eating carefully–she asked me to bring her some organic dried apricots. She’s still not her old self, but SO much better, and I’m SO grateful. My thanks for all your prayers.

    Speaking of Sunday School, the kids are doing “Moses and the Freedom Fanatics” on March 11! Should be a hoot!

    Joy and peace and health, Andrea

    PS–Happy Birthday Patti!! 37 is nothing, a baby! The fun is just beginning!

57. Administrator said,

    March 1, 2007 at 4:49 pm

    Hi Patti:

    Thanks for the update and the article on EPO. One of the gals on the AA Central Forum posted it there, too. Very interesting article and makes sense, too. There are very, very few drugs which have no side effects. Actually, I can’t think of one that doesn’t.

    So, with your MIL’s current condition, have you all decided whether she’s gonna go back on the neupogin or not? Or the Exjade?

    Regarding poor little Luke. . . I was wondering if stress is what is related to his hives, perhaps he could use some things that help the adrenals. I know I’m always harping on the adrenals, but the adrenals are very involved with stress in the body, and when there is a lot of stress, the body uses up more vitamins and minerals like vit C and zinc. Also good fats are necessary. Meats are necessary, too, since cholesterol is the precursor to all the steriod hormones put out by the adrenals. The more stress, the more vits and minerals you use, and likely the more you need to replace. Does he get lots of sweets? As you know from Wilson’s book, it’s important to cut down on the sweets when trying to fortify the adrenals. So, basically, I was thinking if it was stress-related, I might explore building the adrenals. Another thing that came to mind is his liver. The liver process excess hormones, and if it’s bogged down, then it may not be able to clear excess hormone. I have read in some cases where histamines can make a person itchy, although it doesn’t always come with hives. Aside from breaking out in hives from transfusions or drugs, I have reacted from some foods. Once years ago, I broke out in a full body hive attack in the middle of the night after eating a can of mussels. I suspected it came from that can. At the time I was in high school, so wasn’t that much into health yet, but do remember suspecting the can of mussels. Another time I started developing hives more regularly was more recently after my AA diagnosis. I was drinking lemon water every day. After about 2 years of doing that, I started to break out in hives. I found out it was the lemon because I started to notice it was shortly after I drank my lemon water, and what really made it obvious is when I ate some ceviche that I had marinated in lemon the night before. So I stopped eating lemons for a while. I took a long break, like about a year, then tried it again. I was good for a month, then the hives came back. So, off the lemons again. Since then I do have lemons ocassionally, but not every day like before, and I do fine. So why the long story? Ha! Basically, I think it could be food related, too.

    As far as turning 37. . . I have to agree with Andrea. I’m 42, and a couple years ago, my sister spilled the beans to some guy that I was 40. . . He looked at me and said, “I’m 45, and let me tell you, I’ve JUST started living.” And you know what? Two years later, I agree! Okay, so I have started to see some wrinkles and white hairs. . . but I feel good.

    Hope you had a nice birthday yesterday! Did you know that Jen’s daugther, Anna’s, birthday is the same day as yours? My youngest son’s birthday is today. . . a whooping ((((13)))). No more babies in this house, sigh. . .

    Toodles for now!

    Marla

58. Marla said,

    March 1, 2007 at 6:43 pm

    Well, I just finished typing a long post for Andrea, but it looks like it’s my turn for my posts to get eaten by the computer, ha! It just said that a certain program is “missing” and I can’t get to my blog from my computer. I’m typing this one on Brian’s computer. . . And I don’t have time to re-type what I had just lost, so will try it again, tomorrow.

    Anyway, I just wanted to add this to also see if it at least works on other computers.

    Laters!

    Marla

59. patti said,

    March 1, 2007 at 10:15 pm

    Marla,

    That must be the same error I got a few hours ago. But now I can get on here again. There must have been a server issue. But now it’s too late for me to type what I was going to so I’ll have to wait until tomorrow night.

    Night.

    patti

60. Lori said,

    March 2, 2007 at 5:38 pm

    Hi All,

    I am a friend of Patti’s and we should pray for her and Helen and the family. Patti and family were at my house on their way to a “day out” this afternoon when they got a phone call from her BIL that Helen had a 102 fever. This was AFTER taking xtra tylenol. They rushed out and home and last I heard were taking Helen to the doctor or hospital (not sure which). I know that things have seemed as if it was winding up – but only God knows. Pray for peace and God’s perfect will in all this. Thanx!

61. Administrator said,

    March 2, 2007 at 6:31 pm

    Thank you very much, Lori, for the update. You bet they will all be in my prayers! Will wait anxiously for any further updates.

    All the best!

    Marla

62. Administrator said,

    March 2, 2007 at 6:51 pm

    Hi Andrea:

    Here’s my attempt at typing the info that I tried to relay to you yesterday. It’ll probably be shorter, tho.

    First things, first. . . so glad to hear that Lynn is doing better! Let her know that we’re so happy that things have turned around for her. It’s wonderful that you’ve taken on some of her responsibilities to help her out! The upcoming musical sounds like it’ll be fun.

    Regarding your daughter and depression, I’ve come across quite a bit of literature linking depression to various imbalances in either minerals, vitamins, amino acids, etc. As an example, there is a book called, “The Omega-3 Connection,” by Andrew L. Stoll. He believes that low levels of omega-3 can cause depression amongst other things. Then there’s Carl Pfeiffer, M.D. who treated patients for various mental illnesses by a combination of supplements one very prominent one being B6. He was one of the founders of orthomolecular psychiatry and also the author of Mental Illness and Nutrition. Anyway, B6 seemed to be very important to being able to recall dreams, which he felt was linked to some cases of mental illnesses (that is, the inability to dream and recall them. His many interviews with schizophrenic patients showed that they were unable to recall dreams). Then there’s also another book by Julia Ross called The Mood Cure. She originally started off dealing with recovered alcoholics, but found that they all seemed to have an addiction to sugar (and likely a big factor to their being alcoholic since alcohol is a big massive sugar rush). She later found that they needed certain amino acids to reduce this craving. It not only helped their alcohol addiction, but also they lost weight, AND had better moods. Then there’s Kurt Vonnegut’s son, Mark Vonnegut. Do you remember him? Mark was diagnosed with schizophrenia, and he later used orthomolecular megavitamin therapy to treat his schizophrenia. I recall one of the things he did was use mega doses of vit C. According to what I read, it was successful for him. Anyway, what I’m trying to get at is that depression can be caused by lots of things, and dietary changes have shown to be of much help. Maybe if you could get you daughter to read some of this, then she can see that there are others who have been able to control and/or reverse their depression naturally. And boy, oh boy, is there a dark side to anti-depressants! The side effects to those are pretty freaky.

    Okay, I think that’s the jist of what I wrote yesterday, although I feel it’s much shorter! Ha! If I remember anything else, I’ll hop back on here and post it.

    Have a wonderful weekend!

    Toodles for now!

    Marla

63. Lori said,

    March 3, 2007 at 9:59 am

    An update on Helen – she and Patti spent the night last night at the hospital. Helen’s fever will NOT come down but she does not appear to have an infection. Patti called is a neutropenic? fever. Her platelets from Tuesday were gone so they gave her more last night (Friday). That is two weeks in a row that the platelets have only lasted three days. They will probably send her home and she will go back on Tuesday like normal for platelets and check up.
    Here are the prayer requests at this point:
    decisions need to be made regarding 24 hour care;
    a decision must be made regarding platelets – do they go to twice a week (if even possible) or let nature take its course?
    I think that about covers it – they DO appreciate prayer.

64. patti said,

    March 3, 2007 at 3:48 pm

    Hi Ladies,

    As Lori has taken my kids so I can rest I’m only going to make this short and I’ll write more later. Mom is now at home with 24hr care coming from my husband, myself and his brother and maybe his wife. After a unit of platelets last night mom only registered 43K this morning. She “should” have been at 80K. That would be normal for her after a unit of platelets. She is hemolyzing them or something but they are not staying right now. Her mouth bleeding is excessive by the second day after having gotten platelets. Her red cells are dropping quickly. I’m assuming because without the platelets she’s dribbling blood internally somewhere or everywhere. They do have her on a strong antibiotic (levequin) in the hopes of catching if she’s getting an infection. My personal feeling is there is no infection (as is the doctors) and the AB’s are more preventive at this moment. We are unable to get her fever below 99.9. We are only giving her tylenol if she actually starts shaking and getting the chills (which usually hits around 100.5 or 101). Basically just to keep her comfortable. If the fever isn’t going to come down anyway I see no reason to dump her full of liver damaging tylenol. Mom did not want to come home to hospice. Our current plan of action is to just get through till Tuesday and re-evaluate the situation from there. My husband’s personal feeling is that she won’t make it through the weekend. She has taken a huge downturn this past five days and each downturn seems worse then the one before and faster then the one before. And honestly, we’re praying for the Lord to just take her home. Right now we’re running on 24hr care shifts (she’s unable to walk steadily, dress, etc) and we do not know how long we can hold out doing that.

    That’s it for now. I will try to share more details at a later time. But for now, if Lori reads this I’m in trouble for not going straight to bed! :

65. Andrea said,

    March 4, 2007 at 12:34 pm

    Patti thanks so much for keeping us posted. Your whole family will be in my prayers. God will take her home at exactly the right time, and in exactly the right way. Blessings, Andrea

66. Andrea said,

    March 4, 2007 at 12:44 pm

    Marla, Thanks for info on depression! Most of it was new to me, but interestingly, Laura had run across the Omega-3 idea. She bought some and was thrilled when it actually worked! She really notices that she wakes up less depressed in the morning when she takes it.

    Exercise really works for her too. But what we’ve been talking about is, that her program of Omegas and running is not enough yet. She called me this morning–she’s decided to add 2x/week swimming to her routine, a great idea IMO. I will forward your informaiton about amino acids and vitamins–since the omega-3s really helped, she won’t be skeptical about that. I’m pushing her for family therapy–we were involved with a homeschooling group in her adolescence that turned out to be a cult, and she bore the brunt of that trauma, being 12 at the time we were kicked out, and best friends with the cult leader’s daughter! And we know this great counselor–I wouldn’t take her to just anyone.

    I agree with you about the antidepressants being mostly bad news. I think she will too, once she does a little reading. I am pushing her to really make a conscious decision about this, instead of feeling guilty that she’s not doing what she’s “supposed” to do (ie take drugs).

    Thanks for all your well-informed help, Marla, bye for now, Andrea

67. patti said,

    March 4, 2007 at 1:28 pm

    Andrea,

    I’ve been wanting to post for days about the depression stuff – but you know……

    Try to encourage your daughter to take 5-HTP. Once a day. It needs to be a good quality brand. Also, make sure her omega-3’s are liquid. They are much more dense and give more bang for the buck. Either Carlson’s Norwegian Cod Liver Oil (we use lemon) or Nordic Naturals Cod Liver Oil are her best bets. One tbls a day is sufficient and she’ll notice a big difference. She would have to take 15 pills to equal 1 tbls of liquid. So see if she’d be willing to switch. CLO is considered a “super food” for many reasons. It will heal just about anything that ails a person. Remember granny days when they gave their kids CLO daily? There was wisdom in that! And it tastes much better today.

    I’ve struggled with depression most of my life and have done the whole gamut of treatments. By far, natural works best and long term. Diet is a huge portion of depression.

    Gotta go. I’ll write more later. Thanks for the prayers.

    patti

68. patti said,

    March 5, 2007 at 10:25 am

    As of last night mom was back on her feet and had not had a fever all day. Marla, as you said in our phone chat, it’s likely she did have an infection and that the antibiotics finally did their job. We went ahead and let her stay by herself last night. She was up walking steadily (albeit it slowly) but was functioning fairly well. David said she had slept all day. She was already having nose bleeding on day 2 after platelets Friday night. That’s the 4th time she’s only been able to go for a couple of days. Tuesday we will see what happens. I’m willing to contend that it’s possible she’s just not been compatible with our last 3 donors but if she does five out of five only going 3 days then my gut says she is refractory. I think she’s refractory right now, but I also understand the donor compatability issue so I’m willing to give on that for a few more platelet transfusions. As my sister put so well, we dodged a bullet this time.

    Mom is currently going to increase her neupogen shots to 3x’s a week after having stopped them for just over a week. At this point if there’s a chance they’ll help it’s worth whatever other risk there is in taking them. She’ll continue on the antibiotic until we see Bonnie on Tuesday and see what she wants us to do.

    Ron and I talked last night and laid out a few things. We are willing to support mom’s desire for continued platelets transfusions but only if she moves in with us. We cannot continue to support two households even being two blocks away. Mom is shot on the days she gets transfusions and the day after because she’s so tired from being out. So that would mean four days a week she’d need some sort of assistance. On top of that, her need for red blood cells is increasing as she bleeds out faster and is losing some red cells with the platelet count. So on some weeks she’d be down 5 out of 7 days. So it’s not realistic for us to care for her away from our home. She will flip her lid and feel like we’ve backed her into a corner but we also have a family to take care of. My kids are a wreck from me being gone so much last week.

    This situation is extremely dynamic and seems to change hourly so I’m not counting on any of this staying the same tomorrow. I’ll update after her appt. tomorrow.

    patti

69. Andrea said,

    March 5, 2007 at 11:16 am

    Hi Patti–THANK YOU so so much for the nutritional advice. I am having dinner with Laura Thursday. I think she’ll be pretty excited. Also I ordered The Mood Cure for her which sounds great. I am very very hopeful. I think she really needs the nutritional approach in addition to all her mom’s well-meant spiritual/physical advice.

    As to your being straight with your mil, that is so so so important. I spent so many years thinking that a good Christian (woman) didn’t speak up! It doesn’t work! Your mil might flip, but if you stay kind but firm, it will be much much much better for her, for everyone, than if your kids are a wreck.

    Interestingly, Laura also flipped when I really confronted her about dealing with her depression last week. But I knew she wasn’t being nearly proactive enough about it, I could tell she was being brave and soldiering on, but it was eating away at her health, and I couldn’t let that happen. So, she flipped, but I stayed calm, and she called back later to thank me . . . so being strong does work, it’s just a little scary. At least for me.

    Stay in touch,

    Andrea

70. Andrea said,

    March 5, 2007 at 11:19 am

    Oh, one thing–what’s 5-HTP?? Recommendations on brand?? A.

71. patti said,

    March 5, 2007 at 11:37 pm

    There are so many things I want to comment on that you ladies have written but I just can’t right now. I’m going to tap into a few things and then update on what’s going on here.

    Andrea, 5-HTP is 5 hydroxytryptophan. It increases the body’s production of serotonin. It should not be taken with anti-depressants. I know you said she’s not on an ADP right now but if she ever does take one this is not something to take with it. I have found this supplement extremely helpful. Best taken at night. It works almost exactly like an SSRI drug does (paxil, prozac, etc). I think that between the CLO and 5-HTP those are the two best things I can think of. Besides any necessary diet changes she would need to make. No sugar, white flour, etc. etc.

    Praying she’s able to get relief! And thanks for the update on Lynn. God is faithful.

    patti

72. patti said,

    March 6, 2007 at 12:13 am

    A – I forgot about brand – Priority One is good (but spendy) and maybe Pure might carry it. That would be cheaper. Otherwise, get what she can afford. Anything is better then nothing. The Priority One is $52 a bottle.

    Okay – mom updates.

    One thing I’m discovering right now is that the only constant is that everything is changing constantly. When Ron checked on mom this morning he said she sounded horrible (I didn’t know that before I posted earlier). We agreed that at 3:00pm I would go over and check on her. She was still in her pj’s and had slept on the couch all day. Marie was making her dinner (warming in the micro) and mom was just barely standing. I sat on the couch with her and discovered that she’d been running a fever all day. Here we go again……. It was up and down between 101.5 and 99.9 all day. The hospital had called to check on her and she said she was doing fine. Excuse me??? Apparently she called the doctor’s office (or they called her, she can’t remember) and told them she was running a fever. The decision was made to switch tomorrow’s appt. from Bonnie to the Dr.Karup. There’s just too much going on for Bonnie to feel comfortable treating mom right now. She was having slight bleeding from the nose when she blew her nose and her gums were only bleeding when she brushed (this is an improvement if you can believe that!). But it’s obvious still that the platelets aren’t holding. I asked her how she expects that she’s going to be able to walk around and do what needs to be done for 7hrs tomorrow? Obviously she won’t be walking the whole time but the point is she can barely go from the bed to the couch. I told her I would bring the wheelchair and she was just as glad to hear it. I also told her I did not know if Dr.Karup would agree to give her a prescription for 3 neupogen shots a week, nor did I know if Dr.Karup would agree to any more platelet transfusions. I need her to understand that it just doesn’t make sense anymore. She can’t even care for Marie per se. She’s so worried about leaving her and yet Marie is more distraught watching her mom fall apart before her eyes. Marie has pretty much been feeding herself with leftovers and doing her own breakfasts, etc. Mom isn’t eating much at all. She lost 3 pounds last week. She’s slim to begin with so that doesn’t help.

    Late this afternoon Dr.Karup called me and we had a long conversation (at least 45 minutes). Here’s her bottom line: mom’s disease has progressed to the point that she is no longer making platelets, she’s no longer making red or white cells. She said any perceived white cells coming from the neupogen shots are dysplastic and non-functioning. She said if they were functioning that having 400neuts would be enough to help fight off any fevers (that’s about the “average” mom has had since last August anyway). She said she’s going to be very straight with mom and give her the biology of how all this is happening. She said she’s going to lay out her recommendations to mom. She’s not going to give her “options.” #1. She recommends mom go home on hospice. #2. If she wants to try and continue treatment she will need full time nursing care in a nursing home. Dr. Karup repeatedly said to me that there is no way 3 or 4 of us are going to be able to keep up with the required infusions of platelets, blood and antibiotics to keep her body functioning. And she will not write the orders to continue those things without mom being under full time nursing care. She said it’s not reasonable or practical. All I could tell her is to be prepared for mom to be extremely angry because I think mom is going to let loose. Either that, or she’s just going to break down right there. I do not know if I can be in the room for this conversation to take place. I have cared for mom for 2 1/2yrs with everything I’ve had in me. I fear her anger turning on me since I’m the one who is now taking her to the doctors and “making” her hear this (she would have had doctor’s appts. anyway). But she’s not rational and really not making sound decisions so I don’t expect her to be able to control her anger towards me either. I do not know if I can live with her dying angry with me. I am crying sitting here thinking about the thought. So, God, I pray, please make it so mom makes this decision with some sort of clarity. It’s tearing Marie apart to watch mom decline day by day. Not that stopping treatment won’t still tear her apart, but at least it won’t prolong it. Perhaps just mom being out tomorrow for so many hours and seeing what it will be like if she tries to do this twice a week will make her see. I do not know.

    I am so sad tonight. And I will admit to sitting here bawling my eyes out. Letting her go is one fo the hardest things I’ve had to do in life. And I’ve been through some crappy stuff. And yet I know what lies in glory for her – I just wish she could see it for herself right now. I just think she’s blinded by Marie standing in front of her. Ron and I have started discussing funeral plans and are trying to prepare our home. My children are struggling so much. They see us running around, they hear so many phone calls, they ask so many questions. And we are honest. Death is not to fear for us. But it’s hard for them. They haven’t had a chance to see grandma since she started going down so fast. We are going to try and get them there Wednesday for a few minutes.

    Ron is spending the night tonight with mom. She was furious. I asked her how she could expect us to do anything less? She told me she cannot shower. She will sponge bath. She could not even do that tonight. When Ron got there at 6:30 she was in bed for the night already. Having not eaten dinner nor taken her antiobiotic. Her fever still running. When I said all that about Ron she told me she had a right to be comfortable too. Well, yeah, but at some point you gotta see you can’t be alone. Nor can Marie! Ron said Marie was an absolute mess when he got there. You see, today is the first day Marie has literally had to take care of herself ALL day. AND, she was taking care of mom. Mom could do nothing. Ron again talked to Marie tonight and told her that mom probably only has a couple of days left to live. It didn’t go very well.

    So as things change hourly, it becomes more difficult. I lost my dad when I was 11 – it was not this difficult. We lost Ron’s dad to Alzheimers in 2003 – it was not this difficult. Watching her suffer, watching her fight, watching her not be able to think straight – this is difficult. I cannot describe the ache in my heart tonight. I have fought off crying so much. I just haven’t been able to – and now, I cannot stop.

    until another day……..

73. Andrea said,

    March 6, 2007 at 5:18 pm

    Wow, Patti, what a trial, what a lonesome valley you have to walk. Your mil reminds me of my fil, who just wouldn’t give in to anything, including to his aging and declining health (he scared us to death with his driving towards the end). It was just so so hard because he wouldn’t accept reality, he wouldn’t let go. And he, too, was so so angry with Rob, as though it was Rob’s fault that it was time for him to go home. He was a committed Christian but yet he couldn’t seem to find peace in that. He was angry almost to the end–but not to the very end. At the very end, he softened. But that anger coming from someone you have cared for–that is very very hard, it was very hard for Rob.

    I will keep praying for you. Crying is God’s way of cleaning us out. My love to your family and especially to Marie.

    Andrea

74. Andrea said,

    March 6, 2007 at 5:19 pm

    Whoops, forgot to thank you for the information! And for the prayers. I’m psyched. I’ve really been praying a lot about Laura’s situation and really feel a lot of guidance and help trickling down now . . . A.

75. patti said,

    March 8, 2007 at 5:38 am

    What does one do when you can’t sleep? I guess you update the blog you’ve been avoiding for a couple of days…..

    My last post was so emotional and Tuesday was so emotionally draining I couldn’t bring myself to write anything. I’m so totally exhausted from lack of sleep. I should be using my knock out drops, but oh, they taste so awful! I think tonight I’m just going to have to suck it up and put ‘em down.

    Tuesday’s appt. with Dr.Karup actually went well for all practical purposes. She spent an hour talking to mom, explaining what is happening with her cell lines, why it’s happening, etc. I learned a few things I hadn’t known before. She did say that any fevers mom has will kill off some of her platelets and that will make her tx’s not last as long. Too much info to write it all out but it was good. She was very straight forward with mom and told her she needed to decide when she’s had enough. Is it when she has to get platelets twice a week? Daily? At what point will she be done? She also told mom that she wanted the family to meet with hospice this week even if mom isn’t ready to go that route. Mom’s concern with hospice is that they will just come into her home unwanted. She’s been told numerous times this is not how it is but I think with her mental state it’s hard for her to understand it all. So we will meet with hospice just so she can meet the nurses and we can all talk. Mom scheduled a platelet transfusion for next Tuesday (assuming this last bag lasts that long) but said she is not sure she will actually have it. She is sooooo tired. She rarely gets out of bed. She’s severly dehydrated from not being able to drink or eat much. We keep pushing the fluids on her as best we can.

    Her platelet transfusion did not go so well. About 50 cc’s into the bag she had a severe reaction. This was a new donor and it just wasn’t a good match. We ended up tossing the bag out and waiting a couple of hours to see if the reaction would go away. Once it did, she used random platelets on an extremely slow drip. She still reacted but much much less and not until the end of the bag. I say “we tossed it out,” but actually, the doctor had the bag sent for testing because she was curious what antibodies or cells mom was reacting to. Not sure if we’ll ever get the results of that test. But it would be interesting.

    We finally got home at 6:00 which was much later then we expected since it was “supposed” to be a short day. I am so thankful for some friends who have been providing meals this week. With things changing daily with mom, someone having to be there off and on throughout the day, etc. it’s been so helpful not to have to try and figure out what to make the family. Not to mention that grocery shopping thing that needs to be done. Someone else is going to get my groceries for me this weekend which will help a lot (we live a ways from the store I get lots of my stuff from). We’ve also been feeding mom and Marie dinners so this has helped out with that also. You cannot imagine the relief on mom’s face when I took dinner last night. I guess Marie can only live so long on cold cereal and milk. We told mom we will continue to do dinner for her daily. Just her face told me of the relief. She actually had a good day yesterday! She was still exhausted but she didn’t have any fevers, she ate all of her dinner which is the first good meal I’ve seen her eat in a week. It seems like right now every other day is a good day/bad day thing. David has been spending the night with her when needed which has really freed Ron and I up to be at home with the kids and him being able to work. We have a huge order on our plates right now that is due in two weeks and he’s not getting very much work time. We’re trying to get it done before mom goes on hospice because that we will need to be with her 24/7 again during that time.

    Guess that’s it. I left a lot of details out, just because I’d really like to get some sleep and because I’m not real keen on dealing with the emotional stuff at this moment. I did cry most of the way through her appt. with Dr.Karup. I couldn’t help it. Oh, one more thing. She did ask my opinion at one point about what doc was saying and I told her that Marie watching her going down so fast is almost more devestating then losing her because now Marie feels responsible to somehow take care of mom (which she can’t do). Mom had not considered that and was definately changed by that thought. She also asked me to cancel her Tuesday appt. with Dr.Kou. She said at this point she didn’t feel like it was worth going when she was so tired and so close to the end anyway.

    Tuesday night all three kids (Ron, Dave and Marie) were at mom’s at the same time (Ron and Dave were changing guard) and they ended up spending two hours with mom. Mom told them everything the doc said and covered all the hospice stuff also and she did so with Marie in the room (which she should have). One thing the doc kept telling her is she has got to prepare Marie for what is coming. Ron told me later he was so glad they all had that time. It doesn’t happen often (there’s usually all of us together) and he knows they will all really remember it. Mom had slept so much all day (in the car, getting platelets, etc) that she was able to stay awake for that time pretty good.

    Ron and I really feel like the Lord has orchestrated things exactly as He wants them right now. Through our tears (and there have been many) we see His hand in each step and decision we are making.

    My goal for this week is to get our house ready for Marie. This means packing up everything in my family room and moving our office into the family room to free up the bedroom for Marie.

    Off for now. Sorry it took me so long to update. I just couldn’t bring myself to come back here for a few days. I’ll update after we meet with hospice.

    Patti

76. Andrea said,

    March 8, 2007 at 6:09 am

    Thank you for the update, Patti. My heart is with you. Andrea

77. Jennifer said,

    March 8, 2007 at 8:33 am

    I hope you took your drops last night, Patti. If you don’t use them they can’t help you. You are going to need all the strength that sleep can give you for the next few weeks.

78. Birgitta Alexius said,

    March 8, 2007 at 12:31 pm

    Patti,
    My thoughts and prayers are with You and your family!
    Varm regards
    Birgitta

79. Administrator said,

    March 9, 2007 at 10:46 am

    Hello Patti:

    Times like these make it difficult for me to respond, but know that you and your family are in my prayers. As a patient, I have lots of feelings and memories that re-surface. But from discussing these things with Brian, I see that things can be very different from the perspective of the caregiver from that of the patient. As you know, Brian, my husband, took care of both his ailing grandmother and me when I got diagnosed with AA. She stayed in the front room of our house, while I was quarantined in the back room due to low white counts. She was almost 90 years old and unable to do anything for herself. I must say that Brian has taught me a lot by his actions, which has also humbled me quite a few times. I didn’t know where he got his strength to care for both of us and our three boys. But since he’s been there, I felt that Brian had better insight into your situation more than I. The one thing he did say that touched me and means a lot to me is that, “So long as there is life, you still have a chance to show that person the love of God.” As the Bible states in Matthew 25, “40″The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’ So even small simple things are important like giving a glass of water, making dinner for another. The passage in Matthew shows the practical things that God values–i.e. caring for the sick and hungry. I know your situation is very hard and can be both emotionally and physically draining. But know that none of your efforts go unnoticed by God. Along with the sadness of your situation, there is also blessing–a chance for you to not only comfort your MIL and sister-in-law, but also give to God. And also as Matthew 25:31-46 shows us where God separates his people like a shepard separates the sheep from the goats. I found it to be a very insightful passage and recommend re-visiting it since I’m sure you’ve read that passage. There is a purpose for every situation, although at times it feels extremely hard to endure. When you share how you MIL is going downhill, I look at my parents and know that they around the same age as your MIL, also both with failing health. I don’t ever want to see my parents suffering, either, and just the thought chokes me up. Just as you wonder what to do for your MIL, I wonder what am I supposed to do for my parents when the time comes? Is there anything I can do? But Matthew 25: 31-46 gives me a clearer picture of what I must do when the time comes. Just as you are doing for your MIL and sister-in-law, I will need to be there for my parents and care for them. I pray that I have the strength for that, just as I pray for you and your family to have the strength for your MIL now.

    Take care and know that you are in my prayers during this very difficult time. There is so much value in caring for your family as you do.

    Marla

80. patti said,

    March 9, 2007 at 10:53 pm

    Marla, I know/knew that responding to this past weeks events would be difficult for you. I’m touched that you did respond. I don’t think too often about how God sees me in all this, I just feel like it’s the right thing to do. I think if anything, I’ve thought God must think I’m a whiner!

    It seems like everyday is something new and I think I’m learning to just live day to day and forget what is coming next week. Mom has actually had several good days in a row. Good being relative, of course. She’s had no fevers, she has been getting dressed. That’s good compared to where she’s been this past few weeks. She still is unable to cook or clean or drive (she better not be!) but she’s up. The platelets she got on Tuesday seems to be holding quite well which has caused me to go back and re-evaluate what has happened over the past 3 weeks with platelet tranfusions. Here’s what I’ve concluded: The bag she got from the Red Cross nurse lasted 3 days. I believe she was just no longer compatible with this person. The next bag she got from a new donor to us but she was having non-stop high fevers. This bag only lasted 3 days but I believe it’s because the fevers were killing off the platelets (as her doctor described it). The bag she got Friday night at the hospital lasted 5 days instead of 7 but that’s still an improvement and she was still having fevers for several days following her hospital stay. This bag from Tuesday she seems to be doing fine with. So, I’m tentatively thinking she is not refractory but that her body killed off a lot of the platelets due to the fevers. So that being the case…….I think that just having whatever infection she had is what has caused this rapid decline in her ability to take care of everyday life. Not so much that she’s becoming refractory.

    We meet with hospice on Monday. Mom was scared to death that Dave and his wife would push her to make a decision about hospice on the spot. I told her we would eliminate that issue by telling them that the doctor didn’t want any decisions made until after her next CBC and seeing how long this bag of platelets lasted. She was so relieved (and so was I really). I saw how pushy Dave was when dad died. He all but forced mom to buy a burial plot for herself. It’s not that it’s not a good thing to think about but she clearly did not want to do it at that time. She also did not want Cathleen present during the family meeting but how can I be there and she not be? Ummm, that ain’t gonna fly. Anyways, we will meet with hospice but no decisions will be made at that time. We’ll see what tuesdays CBC looks like and how she holds these platelets. She is scheduled for another round of platelets because the doctor wanted to give time for decisions to be made without doing anything hastily. I know both mom and I almost feel like we’re meeting with hospice prematurely now. But truthfully, her feeling “well” simply means she can stand up. Because that’s about all she really can do. She can shuffle slowly to the bathroom, etc, but that’s it. Maybe I’m deluding myself. And, Dr.Karup told both of us she is going to have some good days (when she can actually get out of bed) and some not so good days. So, I guess that’s where we’re at today. I’m still taking meals over there everyday and we check on her twice a day right now. But at least if someone needs to spend the night Dave has been filling that need for us. It’s been great for his blood pressure! We keep telling mom to let him spend the night as often as he wants – even if she doesn’t feel like she needs it! That seems like such a small thing but it frees Ron and I up so much.

    Today I was able to get all of my sewing stuff packed up in the family room. Man I have a lot of fabric! I had bought fabric to make the girls and I matching Easter dresses the summer that mom got sick. It’s still here, unsewn. I have to say I’m a little sad to see this stuff in boxes because I know it will be at least another year before I can start sewing again. I finally concluded I’m going to have to buy my little guys pj’s instead of sewing them right now. It’s one of my favorite things to do for the kids. And they love it so much when they wake up to something new hanging on their dresser handles! Oh well. Tomorrow I will start in the office packing up my sewing machine, etc. At that point I will have done as much as can be done at this time.

    Guess that’s it. God is still faithful, still on the throne, teaching me to swallow my pride (man is this hard!), and allowing us what feels like a much needed reprieve from the full time caregiving for the moment.

    Until next time……

81. patti said,

    March 13, 2007 at 9:55 pm

    My favorite saying these days is “the only constant is that things are constantly changing.” And this week is no different!

    Mom has rebounded amazingly from the past two weeks of fevers, infection, ups and downs. Today her red cells are holding for another week (not bad considering she was bleeding so much right after getting them two weeks ago). Her platelets were at 4K – normal for a bag lasting 7 days. Her whites were yucky – but that’s nothing new. 800 WBC’s with zero neuts. The only whites she had were lymphocytes. She has been on Levaquin since she left the hospital. Today was her last dose. Unfortunately, we started seeing her temperature rising yesterday. Because her white cells are so low, and the doctor doesn’t think she can keep the fevers away, she put mom on Bactrum DS (double strength) three times a week prophylactically. This just seems prudent at this point. To me, every time she has a major fever episode is like another chunk out of her system that she’ll have a hard time recovering from. Other then the antibiotics she’s not taking any other precautions against infection. We can tell by looking at her that she is getting stronger with each passing day. Marie said she’s not sleeping much anymore. Just her normal daily nap now (albeit 3hrs). But she was sleeping nearly all the time for a few weeks. Today she told me she feels like she can cook again. So, all good signs that her body is doing better.

    Our meeting with hospice went well – although felt funny considering she was doing so much better. But we have the information now and that made the doctor happy. At this point, with transfusions back to just weekly and her feeling so much better the doctor said we would hold off hospice until when/if the platelet transfusions start coming twice a week.

    Keeping up with the directed donor platelets and our donors has gotten a little difficult. I have a friend that is helping me by standing in the gap and helping with scheduling availability for donors. This is such a help! Mom actually got random platelets today because our donor on saturday had a vein blow and they wouldn’t let him donate with the other arm. Ron was supposed to donate Sunday morning and ended up starting to get a cold. They won’t let anyone donate if they even have a sniffle. We just ran these platelets very slow (230 cc’s over 2 hrs) and mom did fine. As long as we take our time with some of these it seems to help keep reactions down.

    Mom is scheduled for blood and platelets next Tuesday so it’ll be a long day. She had me schedule an appt. again with Dr.Kou for Monday after her type and cross. I could tell in Dr.Kou’s voice he was so happy to hear she was doing better. He really loves working with her. Since blood diseases are his specialty, he misses working with them. Mom is one of his few blood disease patients.

    I think that’s it for this week. What an amazing change, huh? It feels like we’re kind of back to where we were several months ago. Just week to week transfusions. Mom’s challenge will be keeping infection at bay. Both bacterial and viral. We’ll do our best.

    Marla, so much of what you have said about mom’s condition this past few weeks has been right on the money. You know so much about how all this stuff works! I know that is born out of heartache and experience with your AA. Your sharing that wisdom with others is a real blessing. You’re doing a good job allowing God to use you in folks lives. Keep it up.

    Until next time….

    p.s. you ladies gotta check out t-tapp. http://www.t-tapp.com/faq/what-is-ttapp.asp I’ve been doing it for a week and wow! I’ve already lost almost two whole sizes! I LOVE this approach to exercise. Chou.

    patti

82. Administrator said,

    March 14, 2007 at 8:30 am

    Wow, Patti, nice update, but what a roller coaster, eh? Will continue to keep you all in my prayers.

    “TWO sizes” in a week?! Dang, girl! Have you been doing it 24/7? Ha ha! Thanks for sharing the site. I checked it out, but looks like you have to purchase the secret. And not cheap, either! Oye! But that’s fantastic progress. Keep us posted on it. Very interesting!

    Andrea, how’s it going with your daughter? I hope she’s experiencing more improvements. Let her know she is in our prayers, too!

    Laters, ladies!

    Marla

83. patti said,

    March 14, 2007 at 12:29 pm

    Hey Marla,

    Oh, roller coaster doesn’t even begin to describe it! At least a roller coaster is exciting in a fun way! Thanks for praying. Still need it. It just seems like things change hourly/daily. Today mom isn’t feeling so hot. She’s putting it down to being out yesterday and getting platelets. But her temp is rising again today so it could be that too.

    I know, two sizes sounds nuts doesn’t it? But I’m serious. I can put on dresses and shirts I haven’t been able to wear in years. And I’m not doing it 24/7! I do the 15 minutes a night – 6 days a week. That’s it. Her approach is so unique. You can actually do a “try before you buy” by downloading some stuff from her site. I have a friend that did this. She’s going to try it for two weeks and see what happens. I only spent $40. I bought the cheapy package and I can tell it will be a long time before I’ll need the next workouts so I’m not too concerned about it. I’m just aiming to get back to where I was before my first pregnancy. I’ll keep you posted on my progress.

    Okay – I gotta be off. Had to go to help mom this morning so I’m a little behind. Take care.

    patti

84. Andrea said,

    March 14, 2007 at 12:55 pm

    Patti–I, too, am impressed. Two sizes!! I lost two sizes when Rob got AA! NOT a recommended way to do it. As to exercise, I’m a walk-the-dogs-and-yoga addict. I’m no beanpole, but they’ve kept me from getting too pudgy, and they make me feel good too, plus I have to walk the dogs anyway! But carry on, Patti, and do let us know when you get to your goal!

    Laura is doing better already. Just having some help putting together a program I think is giving her some hope. I’m meeting with her tomorrow to give her The Mood Cure, The Antidepressant Fact Book by Peter Breggin (very anti-drug), and a more pro-drug book, so she can read both sides and make an educated choice. I am positive she’ll choose no-drugs, but I want her to be stronger about that choice. When she gets down, she blames herself for not taking anti-depressants like “they” say she should.

    I thank you ladies for your prayers and I know they have helped, too. She still needs ‘em. She’s going to start a swimming program this weekend since exercise really helps and she loves to swim, and I’m working with her on some other stuff as well. Pray for me, too!!

    Gotta go teach!!! Andrea

85. patti said,

    March 14, 2007 at 9:48 pm

    ooooh. Thought I would clarify the t-tapp stuff. Was just sharing it because I am so excited about it’s affects. Also wanted to say that clothing sizes lost is NOT the same as actual pounds. I’ve actually only lost about 6 pounds but have lost tons of inches. Lots on my waist and hips (where it counts for me!). She really stresses muscle density which burns more fat and cinches up the body. Anyways, just wanted to clarify that. I’m aiming more for size then a weight number. Someone on a forum I’m on described t-tapp as yoga or pilates on steroids. Since I’ve done neither of these, I can’t compare them personally. Anyways……

    Andrea, I’m glad Laura is willing to look at all of the info. It’s important she knows why the drugs aren’t good otherwise her decision will be difficult to stick with. Please keep us posted.

    Patti

86. Andrea said,

    March 15, 2007 at 5:15 pm

    Just had a wonderful dinner with Laura. She was VERY excited about The Mood Cure. She really doesn’t want to “do” drugs, just is really convinced there is a biological basis fof her mood difficulties since the Omega-3s did help. I just browsed through the book, but am convinced it’s REALLY going to help alot. I thank you both SO much.

    Yoga and Pilate on steroids!!! Wow! I’ve never done Pilates, cuz it already looked pretty steroid-y and this is even more intense than that! I agree, it’s about inches, not pounds–all that weight loss I experienced when Rob was sick wasn’t really healthy, but the muscle I’ve gained from doing yoga IS. Well, glad you’ve found your exercise mode.

    And what does t-tapp stand for? I found myself picturing tap shoes!

    Andrea

87. Jennifer said,

    March 15, 2007 at 5:21 pm

    I’m the friend Patti mentioned who is giving the try before you buy t-tapp a shot. She told me to post here for you all. I started the awesome legs workout on Tuesday and I’m doing it 2x a day because 5 minutes just doesn’t seem like a lot to me. I measured before I started, and then I measured this morning. There is a 1/2 inch difference on both legs. I told Patti that if I get to 1″, I’m buying the program.

    t-tapp stands for her name–Teresa Tapp.

88. Administrator said,

    March 16, 2007 at 2:09 pm

    Okay, ladies, you’ve convinced me to try it! Ha! Especially when you mention you lost 1/2″ on your legs, Jennifer? I just checked out the free leg exercises, and they look simple enough. If it works for me, that’ll be a miracle. And if I lose 1″, then I won’t need to buy the program, ha ha ha! That’s about what I’d like to lose. I’m not heavy to start with, but me legs have always been just a tad bigger than I would like no matter how much weight I lose (Now, if only I could move that 1″ up to me boobs where there’s a famine, ha!) Brian says I don’t have big legs, but they look a tad big to me. I think it’s more noticable because I’m short with short legs. . . Both my sisters have nice thin legs, but mine have always been, er, “shapely.” LOL Don’t know what gives with that, maybe genetics. I didn’t see a program for getting rid of “spare tires. . .” That one would be tempting to get, ha ha! One trick is disciple. . . I’m very bad at “exercise.” Even 5 minutes, sigh. Shame on me. I don’t mind walking, tho, for even longer stretches of time. But, I’m not one of those people who enjoys exercise, ha! With other things I’m decent, but exercise is not my forte! I feel like I have to be going somewhere.

    Andrea, I’m so glad that you and Laura are encouraged by the nutritional adjustments. I sure hope that The Mood Cure will have the answers that will give Laura that extra umph to get her completely back on the saddle. If not, the good thing is that there seems to be so many different “natural” approaches, and I find that encouraging. If one thing fails, go to the next. But I feel confident that there is a natural way to overcome depression.

    You know, I still have that Pills, Potions, and Posions book. I think it has a section on depression and how drugs work on it. If I can get to it, I may post something on the blog with info from it. Also wanted to add that my sister and BIL are both still doing the yoga regularly and love it. From looking at them, I think that yoga is beneficial to posture. There’s something about the posture with people who do yoga–it’s like they have ease with carrying themselves. I’m guessing it has something to do with training oneself to use proper posture and holding the shoulders and arms in the right positions? None of that slouching or arms curling in towards the chest thing.

    Okay! I hope you all have a wonderful weekend!

    Marla

89. Administrator said,

    March 16, 2007 at 2:34 pm

    Okay, I see I missed it. . . there is something on the T-Tapp site for the “spare tire”! Apparently, I haven’t been pulling the weeds enough, ha ha! This is very nice stuff, ladies. Thanks again for sharing it. Maybe there is something to combat what I “thought” was the old age special.

    Marla

90. Andrea said,

    March 16, 2007 at 4:40 pm

    The stuff on antidepressants from the Pills etc book might be a good followup to the books and info I gave Laura. (I printed out the Wikipedia article on antidepressants and also some of the reporting on the litigation surrounding these drugs.) Just to keep her pointed in the right direction.

    I agree with you about yoga. It’s certainly has improved my posture. It also makes you very aware of your body and how you’re breathing, sitting and standing. Here’s another thing–I hate “exercise” too, but I have grown to love yoga, I mean it’s like I’m addicted to it. It just makes you feel so so good. If the big pharmas could bottle that feeling and sell it, they’d make a bundle.

    Thanks again, Andrea

91. patti said,

    March 16, 2007 at 10:22 pm

    Hey there,

    Marla, I want to know how you like/do with the t-tapp! I’m telling you, I’m amazed at what it’s done for me. One thing I’m noticing is my bladder is a little more squemish since starting it but I think it’s because the first stretching thing she does is supposed to really open up the lymphatic system and get it moving. I think that doing that is moving toxins around my body and into my liver/kidneys that weren’t being filtered before so I’m feeling some irritation that way. But I’m viewing that as a good thing! I want to get the toxicity out. I also find myself constantly repeating, “shoulders back, tuck butt!” Good grief! But my posture has improved so much in a week it’s amazing.

    Yeah, Jennifer, how many days had you done t-tapp when you lost the half inch? Like 4??? I think when I get where I want to be I’m going to send you a before and after picture, Marla, and have you post it here for me. I don’t know to do that. Just for fun.

    Okay – more serious moment. I have a question about anti-virals. Mom is currently on bactrum double strength three times a week to try and prevent infection. It’s working, barely. On off days her temp is still rising a little above normal so I do think if she went off of it we would be back where we were a few weeks ago with the whole hospital thingy. But I’m wondering also about viral infections. Would aclyovar (sp??) be in order here? I’m wondering if it’s something I should talk to the doctor about or if we want to avoid the drugs as much as possible. Your thoughts?

    I also still owe you a post on the organic foods thing. Someday I’ll get to it. I have to so much pick and choose what to look at these days. I shouldn’t read something or respond to it unless I can follow it through. Anyways, some day I’ll get to it – hopefully before it falls to the back of the list.

    Okay – it’s t-tappin’ time. Then off to bed. Oh, I sleep so good afterwards!

    Patti

92. Jennifer said,

    March 17, 2007 at 8:31 am

    Okay, today is day 5 for t-tapp and here is what I’m noticing: I am not slouching as much (what an odd side effect to this!); I am closer to an inch today; my target skirt actually zipped comfortably this morning; my favorite skirt was waaaay too loose to wear yesterday (it just looked silly); and I’m thinking it’s time to add the hoe-downs in to the routine.

    So, if I actually am starting to feel better, maybe this IS good for the adrenals? How about the thyroid? I’m due for bloodwork soon so I guess we’ll see.

93. patti said,

    March 19, 2007 at 11:29 pm

    This will be a very quick update as I’m exhausted beyond belief and have another long day tomorrow. Friday night mom popped up with an infection in a root canal that’s been a problem for a long time. If anyone remembers me posting way way back in the beginning (’06 maybe), mom and I have always believed that her disease was the result of this root canal. Weston-Price has a good book called The Root Canal Cover-Up. Highly recommend it. You’ll never look at getting a root canal the same again. But I digress… She called me Sunday AM running a high fever again. She is now on Bactrum DS three times a week and Levaquin daily. It’s been 48hrs since starting the Levaquin and she’s still running fevers. We cannot stop them. Today I had a serious discussion with her about just letting the infections go. We are being chased by a bullet and before long it will catch us. She somehow thinks this is for Marie. But as I told her, this is only tearing Marie apart. She is not equipped to take care of mom. After I talked to her, Ron also talked to her. And by the time David got there tonight her fever was on the rise again. It is our opinion and desire that she no longer do anything but be kept comfortable. We have expressed that to her repeatedly and I think, tonight, Ron got through to her. At least it appeared so to him. She’s extremely weak and right back to where she was two weeks ago. David is with her tonight and I will be with her tomorrow. She is scheduled to get blood tomorrow but we’ll see if she can even walk. If she can’t, we will do nothing more and call hospice. I think, I believe, I hope, she is finally there. She is having a terrible time letting go of Marie and just does not trust us to take care of her. But Marie knows better and told Ron that today. She knows she will be taken care of, and quite well.

    I simply ask that you pray that the Lord would take her quickly, that we could all (including her) get relief from this constant struggle and that the next few days will go okay.

    Night for now.

    patti

94. patti said,

    March 20, 2007 at 6:50 am

    Did that sound calloused? (sp?). I did not mean it to be. I’m so so tired right now. I was up for two days taking care of mom. I hope that didn’t all sound bad……..she’s just so uncomfortable….

    patti

95. patti said,

    March 20, 2007 at 10:15 pm

    The roller coaster….. at the fair, they are fun. In life, they are not. Mom did get blood today and did okay. She slept all the way there, while she was there and all the way home. Her fever was low grade while we were there but started to spike as we left. She was 101.4 by the time I got her home and in bed. She is up and down constantly and almost never lower then 99. The doctor told her not to let it get any higher before taking tylenol because it will eat up what platelets she has. So she’s been taking tylenol at 99 but it always seems to keep rising. It seems like her body likes to “sit” at 101. 4 most of the time. Last night she was 102.7 all night. With two antibiotics and all this tylenol, nothing seems to be helping. The swelling in her cheek from the tooth infection is going down, but is still slightly there. There is a definate redness to the most swollen part. She says it doesn’t bother her too much. That means she can feel the pain and most of us would be taking pain killers for the pain at this point. I have never met anyone with such a high tolerance for pain. She’s amazing.

    Ron is with her tonight. My night is tomorrow. I took the kids to see her when I took dinner over. It’s the first time she’s seen them in a month. Tonight her pastor called me because he hadn’t been able to get ahold of her for two days (she was with me). When we talked to mom she said she doesn’t want to see him. I was shocked! I figured of all people, she’d want to see her pastor. But she hasn’t wanted to see anyone. There are some young kids she taught piano too that desperately want to see her before it’s too late and she won’t see them. I understand she doesn’t feel good, I just feel bad for them not being able to say their good-byes to her while she’s alive.

    She came through the last infection. While that seems less likley this time, only God knows. At this point my biggest concern is that these fevers are eating platelets and her doctor was very clear that if mom got to needing platelets twice a week she was going to push back and not want mom to do it. Mom has until about tomorrow afternoon to decide what she wants us to do because she’s going to need platelets pretty soon otherwise. Since Ron is with her tonight he told me to keep the hospice number handy because he thinks it’s going to be a long night. He said she’s extremely uncomfortable right now. I honestly don’t know what they can give for an infection to make one more comfortable. It doesn’t seem like any sort of painkiller would work. But I don’t know.

    Ron and I both tried to deal with Marie on a particular issue tonight and she was being a spoiled brat. To say the least. Ron finally got her to do what he wanted (3 hours later) only to discover that mom had told her she didn’t have to. Ron was so angry he said he almost just told mom off and came home. He ended up going in the garage and going through all of dad’s tools. He hasn’t looked at any of dad’s shop stuff since he died so he said he enjoyed going through the stuff. But he was so mad and told me how much harder mom is making this on Ron and I. Really???? He sees now what I’ve been seeing for years. Not that he was clueless, he just didn’t “worry” about it. Now he’s mad because it’s like he wants to instantly train Marie to our way of life and that is not going to happen. Oh well. We’ll deal with this issue in the morning. Because it’s going to keep coming up.

    Really not much else to say. My oldest daughter asked me tonight why she doesn’t feel more emotional after seeing grandma and how sick she is. We had a long talk about the tears she has shed over the past two years because I would be gone so much, we talked about feeling relieved when a stressful situation ends, about sadness that comes and goes. She’s 9 and extremely mature (typical first girl) so she was able to grasp it all. The other day when I was giving her a piano lesson she lost it and was crying about grandma not being able to teach her anymore. It’s a process. For all of us. But the kids were glad to see grandma one more time. To hug and cuddle her like they haven’t been able to in a month. It was nice to watch them…..

    bye until something new pops up…..

96. patti said,

    March 23, 2007 at 6:29 pm

    Really not much new to report. Just thought I’d update real quick. Mom continues to be about the same. Fevers coming and going and never really getting to normal. She continues to be weak and spends all of her time either asleep on the couch or in bed. Right this second, her platelets seem to be holding – which is good considering it’s Friday and we’re heading into the weekend. We see Bonnie on Tuesday and I’m actually looking forward to this visit. We haven’t seen Bonnie in awhile and sometimes a fresh perspective is helpful.

    Mom continues on the Bactrim and Levaquin. I found out that both of those drugs lower white cells and platelets. Not that that matters much in mom’s case since she’s producing neither of them. But I was wondering – what do people do if they need antibiotics and they were in say, in the same spot mom was 6 months ago where she had white cells and a few platelets – but not many. It seems like an awful catch-22 at that point.

    For now, we continue to check on her two or three times a day and spend the night as needed. We can usually tell when it’s not good for her to be alone. Almost always related to how high her fever has been that day. Her fevers defintely fluctuate with the antibiotics. On the days she takes both drugs her fevers seem to stay between 99 and 101. On days she doesn’t (she only takes the bactrim 3x’s a week) her fevers tend to go to 102.5 or higher. So it’s obvious the drugs are trying to fight the infection but just can’t right now. Her tooth is bothering her but is tolerable at the moment.

    There’s some ugly stuff going on with his sister and mom and us relationally that we are going to have to trust God for wisdom on what to do. That’s all I’m going to say about that stuff.

    Okay – guess that’s it for now. Maybe more on Tuesday.

    patti

97. Administrator said,

    March 25, 2007 at 4:24 pm

    Hi Patti:

    Sorry to hear that your MIL is still battling that fever. I know how uncomfortable it can be. That’s good that she can rest. She needs it.

    As far as the antibiotics lowering counts, yes, that’s true of many antibiotics and even some regular prescription drugs. Basically, the first priority is to get the infection under control and endure the lowered counts with increased transfusions if necessary until that infection gets the boot. Then afterwards, work on raising the blood counts again. That’s how I dealt with it when my counts were in the toilet, and I was hospitalized for infection. But afterwards, even when my whites came back, and when I have gotten some infections like UTIs, I just used my onion soup recipe instead of antibiotics. That way it helps me fight the infection without the risk of bone marrow suppression. God is so good. Every good and perfect gift comes from above.

    Your family situation is in my prayers. I can’t imagine it is easy for either you and your family or your SIL. After all, everyone has the way they like things done in their lives. Not always easy to make changes no matter how old or young we are. I pray that your MIL will have peace and comfort until the moment the Lord takes her home.

    Take care,

    Marla

98. patti said,

    March 25, 2007 at 11:52 pm

    Part of life is illness, growing old, and death. Not everyone will get illness, but we will all grow old and we will all die (It is appointed unto men once to die…Heb. 9:27). That being the case, I have decided to continue posting the changes mom goes through as she goes through the dying process. I have come to see that death is truly a process. Although some in life will die unexpectedly quickly, others will die over a period of time. I think it’s important for people to see the process that mom’s MDS has taken in relation to her death. Because it’s a part of our two years to fight this thing.

    It was obvious today that mom took another major change this past 48hrs. While her fevers seem to be “normalizing” around 99 to 100 right now, her energy level is worse, her skin is slightly more yellow and what little walking she can do is very labored. As I prepared dinner for her and Marie tonight she struggled constantly with a cough. She said she’s been coughing for awhile like that (which she has) but it didn’t used to happen very often. Now, it is all the time. Like every minute. At first I thought she might be heading into pneumonia. But the more I think about the cough and how it sounds, the more convinced I am that it is caused by a build up of fungus in her lungs and esophagus. It’s hard to explain the cough. Pneumonia has a more crackly sound to it. Mom’s is dry but clogging sounding. It reminded me of some reading I had done a couple of years ago when she was first diagnosed about how MDS patients tend to be very prone to systemic fungus towards the end of their lives. So – perhaps that’s what’s causing the cough. I know she’s not been taking her probiotic for many days. And with the antibiotics messing with her flora, she’s ripe for a yeast overgrowth right now. It’s my best guess at this point.

    Mom looked so frail today. I asked Ron to go over there a few hours later to look in on her. It was 6:00pm. She was already in bed. He sent Marie away and sat on her bed and talked to her for awhile. He told mom when she was ready for hospice that she should say the word and he would call. Mom said she doesn’t know what to do. She’s very confused right now. She made two requests of Ron regarding Marie’s care and he just told her “fine.” With his fingers crossed…. because seriously, we could not abide by what she was asking. But a wise friend said to me awhile ago, tell a dying woman what she needs to hear. She did ask Ron to promise but somehow he skirted the issue and she was satisfied.

    Ron went to dad’s grave for awhile. He said he needed to “catch dad up on what’s going on with mom.” He laughed then, of course, knowing he wasn’t doing that at all. I think just the finality that he’s about to lose his last parent is difficult for him. My husband has truly carried out the biblical command to “honor thy father and mother.” For all but 7yrs of his adult life he has taken care of his parents and sister. In those 7yrs he moved away from home, got married and moved his parents out west so he could start taking care of them again. I know very few children that would have done what he has. He is truly a man’s man.

    After talking for awhile I had such a nagging feeling in my gut that I asked Ron to spend the night tonight. We decided that until mom goes home to the Lord we will now have someone there every night. It did not seem to her she was going to be able to make her Tuesday doctor’s appt. or go for platelets. She wanted to try, but wasn’t sure she could do it. Ron and I decided that if she does not go on Tuesday we will call hospice right away. At that point someone will be there 24/7. She has started to have some slight bleeding and by not getting platelets she will begin to bleed more and we will need help. Mom told Ron she’s “just tired and wants to go to sleep.” She’s done fighting. She does not have it in her anymore. Ron will talk with her again tomorrow about Tuesday as he does not feel she has the stamina to be out for 7 hours. She can barely make it to the bathroom right now. BUT, if she wants to go, we are willing to try (with a wheelchair). Because we know it will only prove to her that it’s time to just stop and rest. Ron said she looks so worn out tonight. So ready to just go home. But still a little afraid of letting go of Marie. The first thing Marie said when Ron let himself in tonight (they didn’t know he was going to spend the night) is how glad she was that he was there – she would sleep better now.

    And so, this process continues. I will be there tomorrow night and David on Tuesday night. Ron and Dave had a long talk the other day about some of the difficulties with Marie. Everyone (me included) agreed that we would know within the first few weeks if she is going to listen to us and do as we tell her. Even if she’s not listening “perfectly” (what kid does that?) we will still be able to tell if she’s making even a little effort. If she will not, she will go to live with David. His children are older and they are much less likely to be influenced by the kind of behavior she displays. It will also allow for more concentrated training because Cathleen’s youngest kids are teenagers and basically homeschool themselves with just mild direction. So anytime spent training Marie won’t necessarily take away from their schooling like it would take away from my children. This was a difficult thing to come to, but we are thankful to have Dave’s backing as he sees exactly what we do coming down the pike. While both Ron and I have strong feelings about this arrangement, we are not willing to lose our family because of her behavior. Everyone is in agreement here – but it was a very very difficult thing to deal with. And there, is just a little glimpse into our struggle last week.

    Until next time….

    patti

99. Administrator said,

    March 26, 2007 at 10:21 pm

    Hi Patti:

    That’s good news that your MILs fever is normalizing. When was her latest red cell transfusion? In addition to just battling a fever, she may be due for a red cell transfusion and hence the extra fatigue. Fevers can burn up hgb, so in addition to that, she may just be in time for her usual need for reds. She might perk up more if she had some reds. Just a thought. Nothing wrong with going for a transfusion in a wheel chair. I’ve had to do it quite a few times, and I’m about half your MIL’s age.

    Will continue to pray for the family struggles. James 1:27 states that, “Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world.” You’ve been blessed to be able to care for your MIL who is a widow (and I imagine this is one of her times of affliction), and when your MIL passes away, you will also have the opportunity to care for a fatherless/orphan–Marie, even though she’s physically an adult, she’s still mentally a child. Difficult situations come before us for reasons. It’s usually not so easy to deal with (I know I don’t look forward to them at all!), and I know it’s already been a struggle for all of you. But sometimes they are blessings, but at the time we don’t know it. Romans 8:28, “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.” For those who love God, there is good in everything. Marie sounds like a difficult person to deal with. But even so, I hope Marie can live in harmony with you and your children. If not, then I pray that she can live in harmony with Dave’s family. After your MIL is gone, Marie may be the one hurting the most for a while (even if she does misbehave). You have Ron and your children, and Dave has his wife and children. Marie doesn’t have that kind of family unit. And even if Marie were mentally her age, I’m guessing that aside from God, her greatest love is for her mother. Your MILs passing will be a great loss to Marie.

    Take care,

    Marla

100. Andrea said,

     March 27, 2007 at 2:59 pm

     Hi Patti- I want to thank you so much for recording in such honest detail your struggles with your mil’s last days and the effect it is having on you and your whole family. Like you said, we all have to go through it. Hearing about Ron’s struggles even helps me, in retrospect, understand what it was like for Rob when he lost both his parents in fall of ‘04. It’s just such a precious, wonderful thing for you to do.

     I will confess that I have been forgetting to pray for your family because I’ve been having too much fun in Portland Oregon–yes, close to you! –with my son and daughter in law. And guess what–Rob got an appointment with Dr. Kou! He happened to have an unexpected opening so Rob took it. Dr. K. did a detoxing acupuncture treatment that Rob said felt very powerful, and prescribed detoxing herbs. Quite a different approach from his Chinese practitioners back East, who are into strengthening.

     But I will remember to pray again for all of you. You are being so brave and faithful, it inspires me. We return to Maine tomorrow. Best, Andrea

101. patti said,

     March 29, 2007 at 5:35 am

     Andrea! You mean to tell me you came all the way out here and I didn’t even get to meet you???? How way cool that Rob got to see Dr.Kou! I love Dr.Kou. He is such a nice man. And he knows his stuff. He hasn’t seen mom in quite some time as she’s not had the energy to go out much.

     I’m going to make this rather quick as it’s 5:00am and I’m supposed to be in bed asleep. Something that alluded me last night. At this point, I really do sleep better on mom’s couch because I know I’m right there to help her if she needs it. Although David is with her he hasn’t taken care of her much. I know what every hiccup, burp, cough and stagger means I need to do to help her. No one else really does. So I worry. I’m not doing very well at “being careful for nothing.”

     Mom’s fevers are burning through the blood and platelets. Her last blood transfusion only lasted a week. Her HGB was 6.6 going into today’s tx and her platelets were only 46K. Sounds good huh? She got platelets yesterday. Her normal after platelets is about 70 to 80K. She had a bad reaction after we got home yesterday and talking to Marla via phone confirmed that her body basically was “rejecting” the platelets she’d gotten. They just weren’t a good match for her. She got blood today. Normally this low she’d get 3 pints but she only got 2. By my calculations she’s probably going to need platelets again by Sunday, if they last that long. By the end of today she had fluid in her left lung and the nurse said she was sounding like she was getting pneumonia. Her right lung was clear. But I could tell her cough had changed. It was all of a sudden more of a wet cough. The diflucan did help the fungus in her esophagus and she had some good relief for about 24hrs. Now she’s coughing non-stop from the fluid in her lungs. She actually had almost a whole day with normal temps and by the time we got home at 7:00 she was back to 101.7. I told David he was to call me if she hit 103 overnight and I didn’t hear from him so I take that as good news.

     After transfusing yesterday mom wanted to eat dinner with us. She told me it might be the last time she gets to enjoy the kids and she really wanted to. So, despite running a fever and shaking like crazy she sat at the table with us. David was also here. So mom had all three kids and my three kids and me and you could just see her taking it all in. When David was leaving to take her home she was hugging my kids and she could not let go. She told Luke, “you’re my boy Luke you know? ” Luke, “yeah grandma, I’m your boy Luke. I love you.” She just couldn’t let go of the kids. I started crying and had to leave the room. I’m crying again…geez.

     I was home last night for the first time in two days. I’ve been home only to shower and leave again. It was so nice to cuddle with my kids and put them to bed. Especially the Peanut. She is the youngest and my being gone is very hard on her. When I left this morning she was just bawling. I felt so bad. Don’t ever let anyone convince you that kids don’t need a mom AND a dad.

     We are continuing to have some issues with Marie and today both boys had to sit down with her and have a “chat.” It seems Marie is just a little smarter then everyone gives her credit for. I can’t say anymore then that.

     Marla, you are right. This loss will be harder on Marie then any of us.

     For now, mom will not be left alone at night or morning with Marie anymore. That decision was made to be in the best interest of mom.

     The other thing I found out today (by default of being at mom’s in the AM) is that mom hasn’t been making her morning concoction correctly ever since she started seeing Dr.Reuter! So all this time that she so desperately needed to be doing this one health regimen she has been shortcutting badly. I don’t know if it was not understanding Dr.Reuter’s instructions in the very beginning or if she was shortcutting because she doesn’t like to spend money. But either way, we certainly lost some ground here that no one knew about. Cannot go back and undo it, but it’s a lesson learned on my part not to take for granted that folks understand what they’re being told – show them!

     I’m off for now.

     patti

102. Andrea said,

     March 29, 2007 at 7:18 am

     Patti- Yeah, I thought of that too, not meeting Patti is ridiculous ( I thought), but we only had a week with “the kids”, and when they were at work or school we oldtimers really needed the “down time.” since their pace is faster than ours. Rob did pretty well not overdoing it, but he still does get tired pretty easily. So I decided just to enjoy knowing we were nearby. It did occur to me–what if I run into them at Dr. K’s? How cool would that be? I am sure I would recognize you if I ran into you!

     I really really know what you mean by recognizing what your mil needs by every cough and stagger. Only LONG and close acquaintance with someone gives you that kind of sensitivity. Moms have it too for their kids. I can immediately tell from the tone of voice of my kids where they are emotionally and what they need.

     As to Marie being smarter than people think–I’ve had that experience, too, with my sister-in-law, also about 6 mentally. Sometimes I think she plays dumb because people expect it of her. Then she’ll come out with these things that show she actually knew what was happening all along! It sounds like it would be better for Marie to be with you than David, even though of course you don’t want it to adversely affect your kids, so I hope she will respond to your clear expectations. I found I was reluctant to be clear with Daisy (my sil), but then I just got “careful for nothing” (for a change–I have trouble with this one too), and just spoke out (mostly about going to church regularly–if she doesn’t go, my brother won’t go), and lo and behold, she started showing up!

     And the meds, too, I can relate to. I read somewhere that people have to hear things 11 times before they “get it”, and I have found that to be true. And that’s high-functioning, healthy people. Sick people have an even harder time.

     With my mom right here in the building, I can check up on her frequently. I’ve become something of a sugar Nazi, because frequently she buys stuff with sugar in it, and it always makes her break out. So I search her cupboards and confiscate the contraband. But she doesn’t mind. She likes being taken care of.

     Rob loved Dr. Kou and thought he really knew blood disorders well and zeroed right in on Rob’s needs–further detox. We’re going to detox this house too–but that’s another story, for later.

     You guys are doing fabulous out there. I feel proud to know you.

     Andrea (in Maine now)

103. patti said,

     March 29, 2007 at 9:27 pm

     Well, I’m sad I didn’t get to meet you but glad you had a good trip and that it was fruitful with Dr.Kou. I think it helps a lot that Dr.Kou’s specialty in China was blood diseases. He was so incredibly excited to be able to treat mom because he doesn’t see a lot of blood diseases here since he’s not in a hospital setting. In China, they do both regular medicine and TCM in the hospital at the same time. Folks get the benefit of medical care and natural stuff at the same time. Which I think is a good combo if one can walk the line carefully with both. We are carefull with the Chinese Medicine because it does have lots of spiritual stuff. We are very choosey about what we’ll allow and so far that has worked for us.

     Mom had an uneventful day today. She had a high fever this morning but it went away pretty quick and she was low again all day until this evening when she spiked again. It’s pretty normal for a temp to be higher at night. Nonetheless, she really can’t afford to lose any platelets or red cells. She looked exhausted though. Mom’s cough is definately getting worse. It’s much more congested sounding.

     Marie did listen to Ron today about something we’ve been really struggling with her on so that is a good sign!! At least encouraging to us anyway.

     We enjoyed our day together as a family so so so much today. We enjoyed the sun outside ALL day today. We don’t get enough sun here to take it for granted. It’s supposed to rain for the next few days again. But summer is coming.

     Oh, detoxing. Andrea, we recently did an overhaul of chemical detoxing in our home. We are attempting to remove any chemical forms of cleaners, shampoos, deoderants, ets. So maybe some of this will help you.

     We started using Biokleen liquid dish soap, baking soda and vinegar for shampoo and conditioner, natural long lasting deoderants, natural hand soaps, etc. My first goal was to change anything that directly would go through the skin. So shampoo, soaps, etc. When I started I felt like at least with laundry detergent I always do two rinses so hopefully I was eliminating as much as possible with that but I may start looking into laundry detergents now. Right now I use a baking soda base anyway so that helps. You should see how much baking soda I buy in this house! I go through a 4 lb box just as a shampoo for us three girls once every month. They must wonder what I do with all that soda when I buy it at the store!

     Okay – I need to get caught up on a lot of work I’ve missed. But I’m thankful for a quiet day at home, even with working hard in the yard, but being with my kids and hubby. Tomorrow starts mine and Ron’s shifts again for the next few days so it’ll be busy again for a few days.

     Until next time….

     patti

104. patti said,

     March 30, 2007 at 9:31 am

     9:25AM 3/30/07

     This is a very fast update. Mom fell last night at 3:00AM when she tried to get up to go to the bathroom. She’s badly bruised (of course) and can hardly walk. Her left lung is continuing to get worse and she’s taking cough syrup just to try and avoid coughing so much. When she coughs it causes her nose to bleed also.

     Thankfully, Dave was at her home last night and got to her quickly. I got home at 6:00 this morning. The boys just called and said to call hospice. So I have. We will meet with them hopefully in a few hours and make arrangements for the nurse to at least look her over and make sure there isn’t something we need to take care of right this second. She will evaluate where mom’s lungs are at. Beyond that, it is a watch and wait. We know mom is very low in platelets and this fall probably sucked up a few more thousand. She was running 101.9 when I got to her at 3:00am. So that’s not helping any with keeping blood in her system.

     There isn’t much else to say. We’ve gotten babysitting for the day and I’m on my way over there right now to be with the boys.

     Patti

105. Andrea said,

     March 30, 2007 at 11:33 am

     Thanks for the update, Patti. My heart is with you.

     And for the advice on detoxing. So far we’ve gone to vinegar and water for glass and bathroom cleaner (it works every bit as well!), we use Dr. Bronner’s for bath soap and Rob bought a chlorine-removing shower head and tub ball. We use a Dr. B’s soap too, called Sal Suds, for dishes and floors etc, but they have unfortunately discontinued it so we’ll have to find another.

     Can you tell me what Biokleen is? I use Jason brand deodorant or baking soda. And buy Nature’s Gate shampoo. Opinions?

     We are, one by one, taking up our synthetic carpets and installing wood floors. We had a bamboo floor put down in our bedroom while we were in Oregon. We also keep lots of plants around. We love them, but they also are good detoxers.

     Laura, BTW, is very impressed by that “mood Cure” book, and is applying its principles, so far to good effect.

     Sheesh, I can’t believe I’m chatting about shampoo while you are helping your mil in her passing. Hope you don’t mind.

     Take care, Andrea

106. Andrea said,

     March 30, 2007 at 7:12 pm

     Hi Patti–Thinking of you today . . . glad you’ve got hospice support and so glad Marie seems to be coming around . . . Marla, THANK YOU for The Mood Cure book idea–talked to Laura again tonight, she’s getting really great results. And as is so often the case, success encourages her to tackle some other aspects of her emotional state–it’s like getting the little boost you need, it has given her a lot of hope, more on detoxing etc. later, Andrea

107. patti said,

     March 30, 2007 at 11:48 pm

     11:25PM 3/30/07

     It took some doing but we finally met with hospice this afternoon. Mom was so exhausted from all of last night that she slept the whole time. Although Dave was there with me I signed all of the papers and made all of the arrangements. Largely because I knew mom’s medical history better then anyone else. Man, what a stinking lot of government paperwork! Whoever thought government doing healthcare was a good idea was nuts! It literally took us two hours just to do the paperwork.

     We finally woke mom and the nurse looked her over. Nothing appears to be broken but she is bruised pretty bad in a couple of spots. Her muscles are very sore and her neck is stiff. The second day is worse so I expect tomorrow won’t be so hot. She was not able to sit up for the nurse so she really couldn’t get a good listen to mom’s lungs. No matter.

     We decided to take mom off of all antibiotics in the hopes that the pneumonia would take over and prevent her from having to experience bleeding to death. Unfortunately, I was correct with my original assessment that the nose bleeds were being caused by low platelets (no one would believe me). By this afternoon the mouth sores had started. With the size they are she is probably at 10K platelets. She got a full unit on Tuesday so obviously between the fevers and the fall and the bad reaction to them, she’s lost a lot. At this point it does not appear that we will be able to prevent her from bleeding out. In preparation for that the nurse had me run out and buy some red towels to help clean her up. She said it’s less shocking if you can’t actually see all the blood filling up spots on a red towel. She also thought for Marie not to see this would be important. We purchased a few other supplies we knew we would need once mom is totally unable to get up. A hospital bed will be delivered tomorrow and set up in the living room where she can be close to the piano and someone can sleep next to her on the couch. It also gives Marie the opportunity to sleep close to her if she wants. The hospice nurse honestly felt mom would not make it through the weekend. Although she’s scheduled to return on Monday or Tuesday she didn’t think that would happen. But God knows.

     Mom is amazing though. She took that fall but got back in bed and was totally lucid. She was up all morning. I think the shock of the fall, hospice decision, etc. just made her very anxious. When the guys asked her what she wanted for lunch she thought about it for awhile and decided she wanted a hawaiian pizza. Ya know what? She wanted hawaiian, she got hawaiian. She actually ate a whole piece which is more then she’s eaten at any meal in many weeks! But everyone enjoyed watching her indulge.

     She laid down for a nap and that was pretty much it for the day. Life went on around her. Not even all of our talking woke her. Tonight she was sitting up, her eyes were open but she was unable to communicate. What an amazing change in one day. I am almost shocked at how fast she is changing. But with the bleeding I imagine she will be unresponsive pretty quickly.

     The boys decided on 24hr shifts. Ron is there until tomorrow night. Dave will take the next night and I will take Sunday night and on until she passes. I have prayed so much that God would let me be with her when she dies and I will do whatever I have to to be there. A couple of her old piano students whom she loved are going to come and play for her for awhile. When dad was dying mom used to play the piano for hours for him and he was so soothed by it. There is no reason to think it wouldn’t be the same for mom. I am thankful to have the bed in the living room and that is one of the main reasons.

     I am torn between numb and extreme sadness right now. But I am also filled with God’s peace that His timing is right and good.

     I can confidently say that for both mom and myself at this moment, “it is well with my soul.” If you’re not familiar with this song, it is an old hymn. “When Satan should buffet, when trials should come, let this blessed assurance control. Christ has regarded my helpless estate. It is well, it is well, with my soul.”

     I pray mom’s transition into the arms of her saviour will be swift and her healing in heaven, so blissful.

     Patti

108. Jennifer said,

     March 31, 2007 at 9:47 am

     I, too, hope for a quiet transition for her, Patti. I wish your family peace during the next couple weeks.

109. Andrea said,

     March 31, 2007 at 11:01 am

     Hm, I posted a comment but it didn’t appear. Maybe this one will. THinking of you, Andrea

110. patti said,

     March 31, 2007 at 12:04 pm

     Marla,

     I can’t see any posts. Is my last one stuck in your spam filter?

     patti

111. patti said,

     March 31, 2007 at 11:12 pm

     11:00PM 3/31/07

     We had a good day with mom today. She’s fairly lucid although extremely sore from her fall. Ron moved her through the house in a wheelchair today and doing so enabled her to have more energy for other things. Like sitting. It took so much energy for her to walk that just going 10ft would wear her out enough she’d need to sleep for 3hrs. So she really had a better day today in some ways.

     She has two HUGE mouth sores. Each one the size of a quarter or larger. She’s very uncomfortable with them. We got her some “magic mouthwash” to help with them. It is a blend of benadryl, cherry maalox, and lidocaine. She can swish it and then spit it out. It will coat her mouth, hopefully giving her some measure of comfort for a few hours. I also picked up the morphine and xanax. Ron’s first question was, “how much do I take?” Even in the midst of sorrow this family has a sense of humor. It really does help sometimes to be that way.

     With the mouth sores this size her platelets are around 2000. Other then the blood blisters (that’s what the mouth sores are) her gums aren’t bleeding much yet (which is really nice). It’s not real comfortable when that happens.

     We got the hospital bed set up in a perfect spot for her (she even picked the spot) and she spent some time sitting up in it reading for a short while. She did want to sleep in her bed tonight which is fine with us. This hospital bed is for when she can no longer get up and we need to be able to have a person on either side of her to move her.

     From how she was this evening and with where her platelets are the boys and I figure by tomorrow night she won’t be conscience anymore. She was good today but slept a lot more today then even yesterday. But it was nice that when she was up, she was doing okay (other than that sore body thing).

     Although Ron had the last 24hr shift, I was there 3 times today. So, I’m thinking I’m never really off duty at this point. Ron handed off to Dave and Cathleen (that was a surprise!) tonight around 8:30 after covering the meds, etc. I’m praying she doesn’t have a stroke because of the bleeding but my sister told me to expect it when her platelets hit 1000. Since she’s speaking from the experience of losing her 11yr old with the same disease, I think she’s a pretty reliable source of info. Although, as even she says, ya never know. We’re all different. But we did tell Dave the possibility existed just so he wouldn’t be blind sided.

     That’s it for now. Although we’re sad, we all seem to be hanging in there. Right now my son is having the absolute hardest time. Today he just bawled because he was so worried about grandma. So, he and I had a good cry together. Although mom is off of the antibiotics her fever is actually holding pretty well at 99. Luke has been saying for weeks that he’s been praying for grandma’s fever to “go down 100%.” He always asks about it. When daddy told him she didn’t have a fever except for early early this morning he piped up and said, “that’s because I’ve been praying and God is answering.” When the bible says we are to have the faith of a child, I see and understand why now. My two oldest have more faith then I do by a long shot. And I’ve been saved for 17yrs. Tomorrow we are taking the kids over to see grandma while she’s still awake enough to enjoy them and they can talk to her. Especially Luke right now.

     That’s it for tonight. I’ll be on duty from tomorrow night until Monday night. But really, probably until she passes. I will not be able to post probably until Tuesday.

     Until next time….

     patti

112. Administrator said,

     April 1, 2007 at 12:00 am

     Hi Patti:

     I love that bit about what Luke said. That is so adorable. I agree 100% about us needing to have the faith of a child. I continue to pray for you all.

     Andrea:

     That is so good to hear about Laura! Thanks for letting me know, and I sure hope this is the answer for her! Welcome back from your trip. When you get a moment tell us more about it! You can share pics, too, if you want, heheh.

     Take care!

     Marla

113. Andrea said,

     April 1, 2007 at 5:19 pm

     Hi, Well, my other posts did finally come through. Go figure.

     Patti, it is good to keep in touch. It sounds like your mil will have a peaceful and supported transition–an answer to prayers. I love the story about Luke. Children do have this natural faith and are our teachers. We are so blessed to have a pastor in our church who understands that and she has the children minister to us almost every Sunday. Today they passed out the palms as we sang the first hymn, and during the so-called “Children’s Sermon”–so-called because we adults love them–the children turned toward the congregation and led us in a refrain of “Hosanna–Hooray!” while waving our palms. Who could resist their sweet, smiling faces? Anyway, thank God for children.

     I’ll work on the pics. It’s hard for me because computer technology comes slow for those of us who are a certain age. But I’d love you to see pictures of my wonderful son and daughter-in-law, their new dog Milo, my son’s garden (which is part of how he’s going to make it through med school), the beautiful, touching Vietnam memorial in Portland OR and even the zoo!

     But, enough for now, Rob wants the computer, Andrea

114. Jim said,

     April 2, 2007 at 2:57 pm

     Patti,
     I feel bad abot not being more in touch with you as your mother-in-law is doing worse. I knew about this site but had not check here in a very long time. Just the occassional reading at the MDS forum and a few private messages did not get me to realize how bad her condition is. Nor all of the thngs that you are going thru. I am so sorry that I have not been supportive when I could have been. I do regularly pray for you, your family and especially for your MIL. God will give you all peace and comfort.

     btw, food grade bicarbinate of soda can be purchased and most feed stores for much less than at the grocery store. I buy 50# bags from Concentrates on SE 8th in Portland for under $10. It beats buying little boxes.

115. Lori said,

     April 2, 2007 at 6:42 pm

     Hi Marla,

     I have been doing a lot of reading on your site and also on Aplasticcentral.com. I found them both when looking for alternative treatments for AA. I was diagnosed at 15 (I’m 34 now) and was in remission until December of 2005. The usual drugs worked for me the first time but have failed this time. I tried an ATG and that seemed to work to a point but my counts went back down. ANC – .4 Hemoglobin – gets down to below 6 and they transfuse me. My platelets hover around 16,000 latley so at least I haven’t been getting those every week. I’m still on cyclosporine and the specialist that I just saw recommends more prednisone and procrit. I’m so fed up with the drugs and all the side affects that I would like to try the holistic approach. I have been thinking about this for a long time and haven’t come to a decision yet. I am also refusing to get a BMT as of now.I know I am not as bad off as some but I’m used to being very active and it’s hard for me to give up the things I love to do. I would really love to talk to you or email back and forth with you. Do you know any others that have tried the natural approaches for AA and had good luck with it? Of course the Medical doctors say that it’s a huge mistake to try this. I admire your courage and determination to get healthy and stay healthy. Thank you so much for sharing your story and allowing others to share theirs.

     Lori

116. Administrator said,

     April 2, 2007 at 11:00 pm

     Hello Lori:

     Nice to meet you, but sorry to hear that you have relapsed.

     In answer to your question, there are some others who have tried natural approaches to treat their blood disorders, however, each one of us have used various means, and I honestly don’t think any one of us have used the exact same thing. At the moment, the only person I can think of who regained his counts naturally (aside from me) *WITHOUT first taking ATG or BMT* was Roger Fortin. He was my first inspiration that it could be done. Unfortunately, he passed away about two years ago of a heart condition. His wife assured me that it was not related to his AA, and that his blood counts were still normal up until he passed. The problem is is *almost* everyone else I’ve been in contact with has taken some form of immunosuppression before going natural, so it is not clear exactly what is the factor/s that brought them to remission. I do know of one person trying alternative and has not taken immunosuppression as of yet, however, he is still transfusion dependent on reds. Again, I don’t think he’s doing exactly what I did either since he has his own naturopath as well as his own hematologist. But he does seem to be making progress because he appears to be making enough platelets now to forgo plt transfusions. Although he’s still getting reds. I am in touch with another lady who is recently starting to seriously look into altering her diet and lifestyle, but she is just barely beginning and has just recently received a red cell transfusion. She feels that her condition may have existed for quite some time before. Her plts and whites are not bad tho and seems to have made some improvement. I know another gal who just started this Feb with a Chinese herbalist to compliment her regular hematologist, but again she is also very newly diagnosed and starting out. I’m also in contact with another gal who has pretty much run the gamut of immunosuppression, except BMT, without success, and who is now very interested in alternative.

     Basically, it’s not easy finding anyone who is willing to go completely natural, and then when you do find someone who seems to be, I can almost guarantee that they have their own regime that they are following. No two seem to be alike. Which is absolutely fine, but just pointing it out because it makes it difficult to pinpoint exactly what works and what doesn’t. There are so many factors to consider that you really need to have a lot of patience, persistence, and self-observation. I am in no way advocating that there is only one way to deal with AA, so I try to keep my eye out on anyone who is doing some natural alternative treatment.

     Having said all that, there are some who have taken the ATG/ALG first then started on some form of alternative treatment. If you have been following along at the AACentral site, then you may have noticed Tayna (supplements and nutrition); Andrea’s husband, Rob (acupuncture, qigong, and modified macro diet); Marlene’s husband, John (supplements and I think using some weston price guidelines); and Peter Lim’s son, Stan (Chinese herbs from Get Well International and shark liver oil). As far as I know they have all taken some form of immunosuppression *first*, but have supplemented their treatment with some alternative approaches. Daniel Strasberg’s son, Gabriel (homeopathics and modified macro diet), also used alternative after his ATG treatment, but he does not appear to be checking in on the AACentral site. Although I do know that he continues to do well because we do still keep in touch via private email. I only mention the above names because they have already posted on public forums documenting their experiences.

     There may be a couple other MDSers on the MDS forum doing natural things but have not as of yet taken treatment. I can think of two–Chuck and some guy from San Diego. I would have to go back to that forum to look up his name, but these two guys have MDS, not AA. Maybe there are others there, but I do not know of them.

     I will send you my email address privately, and if you want to continue corresponding, we can do it privately if you like. I’m curious to know what treatment you had for your AA when you were 15 years old? How serious what your AA? Were you transfusion dependent on both reds and plts? And if so, how long were you transfusion dependent? And did your counts return to normal levels all those years you were in remission? Were you completely off of all meds during remission?

     Thanks, Lori. I look forward to hearing from you. All the best!

     Marla

117. patti said,

     April 3, 2007 at 3:20 pm

     4/3/07 3:00PM

     Very quick, short update. I have to start this update with a major praise. On Friday of last week mom had two huge mouth sores in her mouth. One on each side near the wisdom tooth spot. Both were larger then a quarter. We have been praying that the Lord will spare mom from having to bleed to death and that she could go some other way that would be more comfortable. Last night I asked mom if I could look in her mouth because I was trying to get a feel for where her platelets might be. There was only one “problem” I could see – both of mom’s blood blisters were gone. Totally, completely gone! I can tell you there was some serious praising of the Lord going on in that home at that moment. Either God gave mom 30K platelets (about how much it would take to heal those huge sores) or she’s got only a few platelets and the Lord is just stopping the bleeding. Either way, it is truly God that stopped this. As a family, we are thankful that it appears mom will not go via bleeding to death. I guess there’s always tomorrow, but I’m preferring to walk in faith right now.

     There really isn’t much to update. Mom is out most of the time now. When she does wake we take her to the bathroom (this is a serious, major two person chore) and try to get her to eat something. She did good yesterday! She ate a ton, walk with double assistance to the bathroom instead of using a wheelchair, etc. Today, she’s out. Totally. Three of us giving her a bath didn’t stir her.

     Dave and I are finding ourselves getting about 4 hrs of sleep a night on average. She is having some difficulty breathing which requires moving her, trying drugs, etc. to help clear her airway. I hate to say it, but for this purpose, lorazapam is working well in opening up her airways. She refuses to take the morphine for all of the pain from her fall. While giving her a bath today we really got to see the damage from that fall. It’s bad. Really bad. I don’t think I’ve ever seen so many horrendously large bruises in my life. She has a nasty hematoma under the skin with one of her bruises. She’d been complaining of her shoulder hurting but she wouldn’t let anyone look under her shirt (modesty) to see what was going on. Well, today we discovered she has a lovely bed sore about the size of 3 quarters put together. It isn’t open yet but it looks painful. The nurse dressed it and we’ll try to keep her off that shoulder. Unfortunately, it’s also right in the middle of one of her major bruises from her fall. So she’s got a double whammy. Mom refuses the morphine for her pain because she feels like she’ll lose control. She just cannot give up control. So for now, we’re making due with extra strength tylenol until it won’t work anymore. She is unable to communicate although she knows each of the kids. It’s the only thing she can say – people’s names. It seems like with each 24hr period we see another major downslide. That’s really about it in terms of mom stuff.

     My family is just stretched beyond belief. Ron has had the kids for the last four days. I’ve been coming home for a few hours during the day to see everyone while Cathleen is visiting Dave and mom at her house. When Cathleen leaves I go back. My kids are a mess. Having trouble sleeping without momma home to say goodnight. Ron is bleary eyed from full time childcare (I’m sorry – God just did not make men to multi-task!). I’m having trouble staying awake at the keyboard at this moment. On Sunday Cathleen’s church play thingy should be done and she will take over so I can come home. It will be the sweetest homecoming ever. Believe me. Until then, we continue to stick it through and mom is better off for us having cared for her. At least she’s slowly losing her modesty which is helpful in caring for her. I know that sounds weird.

     I must go now. I’m going to try and catch a few precious minutes of sleep while my kids are down for naps. There isn’t enough sleep to go around right now.

     Until next time,

     patti

118. Andrea said,

     April 3, 2007 at 6:36 pm

     Patti–I love hearing about miracles, and your mom’s disappearing sored appears to be one. Hang in there, thinking about you, Andrea

119. Jennifer said,

     April 6, 2007 at 10:14 am

     Hey all, Patti wanted me to give a quick update. Ron is bringing the kids over today so that they can get some much needed stuff done. The care of his mom is still 24/7 and requires 2 people to move her. She is on constant morphine now.

     She will give a better update when she can.

120. Jennifer said,

     April 6, 2007 at 11:45 am

     Let me clarify a bit. As of yesterday, Helen was receiving morphine every 3 hours. She isn’t on a drip or anything, so not really constant. Sorry about that.

121. Administrator said,

     April 6, 2007 at 1:04 pm

     Thank you for the update, Jennifer. Please let them know that we are still out here praying for them all.

     Marla

122. patti said,

     April 8, 2007 at 12:29 pm

     This will without a doubt be the fastest update you’ve ever gotten from me. Dave tapped into some poor guy’s unprotected wi-fi signal.

     Mom continues going down waiting for her body to give out. She was able to say yesterday that she is ready to go home. She said it twice. Those are about the most coherent words she’s spoken in days. Unless we move her in which case she hollars in pain because of her fall. She’s badly bruised from it.

     I have much to tell but right now need to keep this quick. It is Easter today and we have all prayed that God would take mom today as what better day to get a new body then on the day we celebrate Christ’s resurrection? Although, we don’t feel much like it’s Easter since we can’t really go out. Dr.Kou met me at his office this morning to give me some stuff for mom’s pain (topically) and for mouth bleeding. I’ll have to explain how that started later. But he was so kind to do that. I have given mom the powder on her gums and they seem to have stopped bleeding. There are some things medicine just cannot do that herbals can.

     Please continue to pray for strength for all of us as we run on about 4hrs of sleep a night. Ron has had the kids for 9 days and is exhausted to say the least. Oh, we’re all exhausted right now. I hate to admit it but I’ve been living on diet coke this week. Me bad. I know.

     Thank you for all the praying you’ve done so far. Mom is doing as well as can expected.

     patti

123. Andrea said,

     April 8, 2007 at 5:12 pm

     Hi Patti–Thank you for your post. You are very brave. I thought of you this morning, between all the rejoicing and happiness and music of Easter, thought of you not able to go to church, bravely enduring your own darkness as Jesus endured his.

     But darkness and suffering as we know are not the Last Word.

     Peace and comfort be with you. As to the diet Coke–sometimes you gotta do what you gotta do to get through what you gotta get through.

     Andrea

124. Administrator said,

     April 8, 2007 at 8:46 pm

     Sorry to hear of you MILs pain, Patti. That was so nice of you to arrange something with Dr. Kou to help her out with that. Dr. Kou sounds like a good man.

     Like Andrea, I have thought of and prayed for you all today on this Resurrection Sunday. We went to a gathering where two of my old regular plt donors were there (they’re brothers). One of them was sharing his experience with sky diving and showed us some footage of his jump. One thing he said was that they do tandem jumps where you’re attached to a guide, and solo jumps, which is done just by yourself. Their oldest tandem jumper was 101 years old, and their oldest solo jumper was 98 years old, ack! As thrilled as I was to hear about that (I love to hear about active elderly people, especially centenarians), I was saddened to think about how weak your MIL is right now (not to mention how frail my father has become). How I wished we could all be so strong and active. But Resurrection Day is a good reminder that these frail, corruptible bodies we have will soon be incorruptible, and we will all be together again in due time.

     Will continue to pray for you all and your MIL. Hang in there.

     Marla

125. patti said,

     April 8, 2007 at 10:51 pm

     Hey guys,

     I am free tonight! Well, sort of. Cathleen is done with her Easter play thingy so is starting to pony up and share the load. She’s staying with Dave tonight and into tomorrow. I’ll go over around dinnertime tomorrow and stay till Tuesday morning. I *think* from there we’ll continue to go back and forth. I am having a VERY difficult time orienting myself to home right now. Partly because I am missing taking care of mom’s every need and partly out of exhaustion. I imagine it’s going to take some time to re-adjust after it’s all over.

     So much I want to share – not sure I can get it all in. Yesterday a CNA came and gave mom a bath. Since I feel clumsy and mom is in so much pain I was happy to have her do this. She convinced me that she could brush mom’s teeth with an electric tooth brush without causing a lot of bleeding. Okay – rule #1 – NEVER listen to the CNA. She did brush mom’s teeth and mom LOVED it. She opened her mouth and loved having it cleaned. I wish we could get mom to open like that to drink some water! And, there was no bleeding. At first. About an hour later mom starting flooding out her mouth. We were having to suction her every 15 minutes or so! And, of course, she bled all night long with no platelets to stop it. I was so angry at myself for listening to that gal. And mom was suffering as a result. That’s why I finally called Dr.Kou. Because he had given mom an herbal powder to use to stop bleeding before and she had used it all up. In China during times of war, if soldiers are wounded on the battlefield and they need to stop bleeding they put this powder on the wound and it instantly stops the bleeding. As I mentioned above, Dr.Kou was gracious enough to go into the office and get some for me. He also whipped up an herbal formula that he wanted us to give her in the place of water. You mix it with water so she would still be getting the water drops but the herbs will help curb the internal bleeding that is taking place. It won’t stop it, but he said it would slow it down so it wouldn’t be so painful. He also gave me a tincture to rub into her skin topically that will soak through the skin and help with the pain she’s experiencing. So far, we’ve used the powder in her mouth and it stopped the bleeding instantly. I knew it would. It has always worked before. Dave hadn’t mixed the herbs with the water when I came home and I doubt he will. At this point, if we get 2 little drops of water from an eye dropper into her an hour we are doing good. She doesn’t swallow well so it’s hard to give it to her. But I will try tomorrow when I am there. We have had to up both her morphine and Ativan to .50mls. As she’s bleeding more internally it’s definately causing her some more pain. We were avoiding increasing the Ativan because she has been trying to say something all day but could not get it out and we didn’t want to dope her up and make it harder for her. She said my name today for the first time. I mean, clearly. She wanted something but I couldn’t tell what. I felt so bad. I tried to see if she could squeeze my finger or something as I asked 20 twenty questions but she couldn’t even squeeze my finger. She was so frustrated after a day of not being able to talk that she was visibly upset. We decided that her being that upset was probably not a good idea and went ahead and increased the Ativan just a little bit so she would calm down some. One of our biggest concerns is that in her agitation she’ll”discover” the catheter. Hmmm. Maybe I didn’t tell you guys about that. When we could no longer get her to the bathroom or bedside camode we put a diaper on her. But even in her state of being totally out of it she would not use the diaper. She wanted to go to the bathroom. But we could no longer do it. Even with Dave being as strong as he is. The two boys both helped her the day before and it was all they could do to help her so we decided that was enough or someone (either her falling or us) was going to get hurt. I put a diaper on her and just kept telling her she could go on the “pad” under her but for 15hrs she refused. She was in so much pain we finally had the nurse cath her. She had held over 1000 cc’s for that 15hrs. I do NOT know how she did that. Neither did the nurse! But the Ativan is to help keep her unaware enough that she won’t pull the catheter. She doesn’t seem bothered by it at all. The most disturbing thing to me is seeing all the blood in it. But at least she’s comfortable. Okay – back to the story.

     Turning her every two hours is as painful for us as it is for her because we feel like such ogres. We go so slow but she’s just so sore from that fall and I think going right into bed after it didn’t help because it just made her stiff. She did pretty well with us moving her until two days ago. Something shifted at that point. My little sister came today and looked her over. She said the increased pain is likely from dead blood cells (all lines) clumping in her joints and muscles. She was basing that on her experience with her daughter and with the major change mom took a couple days ago with the pain. The toxins in mom’s body have started coming out her skin so there’s like this thin film that we keep having to wipe off. She is half yellow now and half grey. I’m assuming that taking Ativan and morphine aren’t helping her liver any. But what does one do? Let her be in pain? My sister said based on how mom looked color wise, urine flow, etc. she thought mom had 3-5 days left. That would be in line with what the nurse told us on Friday. It’s hard to believe, but that seems to be the consistent thought. Dr.Karup told me it would take 15-30 days for her body to shut down so another 5 days would put us at day 14. And so far, throughout this illness, my sister has been right so I trust her judgement and am just planning accordingly. So there’s how mom’s doing at this point.

     Now I want to share some things I learned over the course of this awfulness. First, nothing anyone could have ever told me would have prepared me for the difficulty of this past 9 days. Seeing the deterioration, etc. before my eyes is very difficult.

     Second, did you all know that the Hutch in Seattle has a natural treatment regimen for cancer patients if they want it? Neither did I. We had considered going to the Hutch but figured they’d only offer us drugs so we didn’t do it. Mom’s CNA was 62. She’s had cancer three times. The first two times the Hutch used natural medicine (because that’s all she’d agree to) and cured her both times. The 3rd time she got ovarian cancer. She did 4 short rounds of chemo just to knock the cancer but it didn’t kill it. From there she went back to the natural stuff and has been cancer free for several years now. She said they send her blood work to a chinese medicine guy in San Francisco who then puts together formulas for her to take. Can someone tell me why they don’t advertise this stuff!!!!??? How many patients would like to avail themselves of this??? I’m sure we would have – although I like who we’ve got now. It’s just the point that I’ve never heard this before. So, anyway, this lady was a real encouragement. And it does make me realize that if we’d had more time with mom and could have kept her cell lines on a tighter leash that the natural could have worked long term. Unfortunately, time was not our friend in this case. But I think of the lesser forms of MDS (the RA’s, RCMD’s etc) that could be healed naturally.

     Marie had a very good first week with me. She listened and didn’t argue. The honeymoon is over. She is really trying me right now but I know she’s testing the waters. Fortunately, Dave really backs me and she has no where to run. But all in all, I’d say she’s doing pretty darn well under the circumstances. Although she’s been moody and not wanted to listen this past 24hrs, she’s still doing what I tell her. Albeit, grudgingly. Dave sat down and had a chat with her and gave her the business and she was better again. I know part of the reason the Lord hasn’t taken mom is He’s allowing Marie and I to establish a relationship of sorts before being thrust into a family setting with all of its noise, rules, etc. And that’s okay. God’s timing is perfect. I have come to see that more and more this week.

     I’m sure I’m missing something but for now my brain in on overload. My body is protesting. I’ve had to increase my own pain meds for my bladder as the stress as kicked it into high gear. I need to double up my efforts and be better about taking care of myself right now. I had a hamburger bun tonight and anything white is a killer to my bladder. Bad, me. Again. On the plus side, I’ve lost another 3 pounds even though I haven’t been able to t-tapp.

     Andrea, I want to comment on the health/toxicity stuff but I’ll save it for the Anything goes board after this is all over.

     Marla, praying your folks are okay right now. Take care.

     Okay – signing off. Not planning on updating until Tuesday maybe after being there tomorrow. Thank you for the continued prayers.

     Patti

126. Andrea said,

     April 9, 2007 at 10:06 am

     Hi, Patti, I, too, am looking forward to a long chat about toxicity-removal. When you are done with this trial. Thank you again for sharing so honestly. It will help immensely when it’s my turn.

     Andrea

127. patti said,

     April 9, 2007 at 11:44 am

     Mom went home to the Lord today at 7:45AM. I was not by her side when she went into glory. On the one hand I am devestated as I had asked God to let me be there and on the other hand, I told God that if she should pass without me I would take it as from Him that that’s how he wanted it. And so that’s how I take it. But it still makes me sad. Instead, my lazy butt was at home in bed when David called this morning. I am a little angry that he did not call me at 4:00am this morning when he said he noticed her breathing had gotten very shallow as I had specifically asked to be called. But that was 9 days ago and a lot of time has passed and it would be easy to forget. How can I blame him? I can’t. Someone mentioned to me that maybe mom was waiting for me to leave. Maybe. Last night I told her I was coming home to get some rest. Maybe she felt the freedom to go with me not there.

     Marie is flipping out and I am unable to deal with her right now so I have told Ron he’s going to have to work with her. I am not feeling very compassionate towards her not having mom at her birthday the end of this month. Who cares? See? So I’ve just kept my mouth shut and let Ron and David work with her. That is best for this first few days.

     Mom’s funeral will be sometime between Thursday and Saturday. There are a number of unsaved folks that will be there so would ask that you pray for their salvation. Particularly Raja and Skip as we’ve been witnessing to them for years. Mom had a special place in her heart for the Indian people so it would be so awesome if Raja got saved as a result of her funeral.

     I am tired. I’m signing off for several days unless I just need to vent. Then I’ll come back for a bit.

     More later,

     patti

128. patti said,

     April 9, 2007 at 9:36 pm

     Mom’s funeral will be Saturday morning at 10:00AM. Although it’s suppose to rain that day we decided that making it as easy as possible for a few of her doctors/nurses to attend if they want is the best way to go. If we can get the gospel to a few more people mom would be pleased. We will gather at our home after the graveside services for a time of food and fellowship. There is so much to do and so many details I feel as if my head is spinning. Ron and I have a a lot of work to do tonight as we try and get Marie’s room ready. Tomorrow the guys will move her furniture in here.

     I am doing okay. Better some times then others. Mostly just very sad that I was not holding mom’s hand when she died. But I promised God I would take this as from him, and I do. But it doesn’t make the sadness at not being there any easier.

     Off for the night.

     patti

129. Andrea said,

     April 10, 2007 at 6:07 am

     Patti, God bless you. What courage. I will pray for Raja and Skip, and also for you, brave woman. Accepting the bitterness in the cup God gives us along with the sweet is so difficult, even jesus had a hard time with it–we should be gentle with ourselves when we, too, find it hard.

     And I will pray for Marie. God tells us to express our sorrow, and when she is done expressing it, she will see, in her own way, that God has not deserted her, but provided so abundantly for her in her marvelous caretakers, you and Ron.

     The message of Easter is that great and beautiful things are done by God for us after much suffering. It is that we need not fear death, or loss. Beautiful thngs await you and your family, I am sure, after this darkness.

     May your mil’s soul rejoice in its new-found home, so much more brilliant and perfect than the one she left,

     Andrea

130. Administrator said,

     April 10, 2007 at 6:16 pm

     Dear Patti: I feel at a loss for words. Please accept my condolences to you and your family. Even though I’ve never met your MIL, knowing some of the details of her struggle made her life a part of mine even if it was just a tiny fragment of what her presence was to you. Thank you for sharing your experiences with us. I’m still sitting here a bit numb with your recent postings, but I know that there is good in everything to those who love God. I will continue to pray for you and you family.

     Hugs,

     Marla

131. patti said,

     April 11, 2007 at 10:57 pm

     Thank you, ladies. I appreciate your kindness and prayers so much! Thought I’d just jot down a few thoughts/happenings.

     We got Marie moved into our home yesterday. What a ton of work! Even with all of the packing I had already done. Today it seems like we’ve gotten the family room/office back together again. It’s tight, but will suffice till we can move.

     Marie is settling in very well. She’s been busy for the most part throughout they day. I have her help me with something around the house and then tell her she can go play if she wants or help me some more. Sometimes she chose to do more, others she wanted to play. I told my oldest girl that it’s a good day when what mom wants her to do is go play with Aunt Marie for her “job” instead of cleaning! She’s loving this!

     When Marie disobeys we just have to keep on top of her. She blantantly disobeyed me twice today and not only did I get on her, but Ron did also. So we’ll see how she obeys on that subject tomorrow. But mostly, she’s doing pretty good. She says she doesn’t want anything of mom’s because she doesn’t want to be reminded. We talked to her about that but decided we would take a large box and put some of mom’s stuff that she might want in the future in it and just tuck it away. She doesn’t understand that a year from now this won’t be so painful and she might want some of those things. But we’re happy to just save stuff for her and not let her know until the time comes when she wants it.

     We have started the probate process. What a pain in the rear! Our lawyer is saying 6-8 months to close things out. It just seems nutty. We went 20K into debt taking care of mom this past two years and were hoping to get that monkey off our backs soon. Guess we’ll have to wait awhile longer. Mom would have flipped if she knew we did that. But not taking care of her was not an option for us.

     I’m doing okay. Still sad I wasn’t with her, but dealing with it. I had to go to her house today to get some of Marie’s things and I am shocked at how I felt walking through that door. I haven’t cried much because I feel so numb. But seeing that empty hospital bed did me in. It just felt so weird. I’m sure that will pass with time but it’s still so fresh.

     Guess that’s it for now. I need to get working on what I’m going to say at her funeral but I keep putting it off. I guess I better not do that much longer, huh?

     Hope you ladies are well.

     patti

132. Administrator said,

     April 14, 2007 at 5:57 pm

     Hi Patti:

     Just wanted to let you know that I’ve been thinking of you all today, and hope the funeral went well. When you feel up to it, maybe you can fill us in on the blanks that you hinted at that you didn’t have time to get into. Although now I know you have a different kind of busy!

     Okay, I hope you and Marie are getting more settled in with each other. That is so nice that you’re able to take her in.

     Take care!

     Marla

133. Jennifer said,

     April 14, 2007 at 6:52 pm

     I’m not Patti. I hope she’s gotten some sleep today. The funeral was very nicely done and actually pretty well attended. The little chapel was full. There were about 20 cars in the procession to cemetery. Patti’s little speech was very sweet and the Gospel was presented.

     Of course, Patti will have more perspective.

134. Administrator said,

     April 17, 2007 at 5:37 pm

     Thanks once again, Jennifer, for updating for Patti. That’s nice that you were able to attend the funeral, and it does sound like there was a good turnout. Would be nice to know what Patti’s speech was. But I’m sure she’s got her hands full right now. Spring is definitely in the air here, and the fresh feeling of newness is everywhere. Here’s to healing hurts and sorrows and a new beginning for the Steeles.

     Marla

135. patti said,

     April 17, 2007 at 8:45 pm

     Oh, Marla. I have so much to say. But I’m so exhausted. Everytime I sit down at the computer to try and do an entry here I just can’t. Right now, replaying things is just taking more energy then I have. But I want to tell you all everything! So, for this week, let me sleep some more and finish getting the estate stuff started and I will try and come back to write about the funeral, Marie (oh my!), and how God has sustained. In the meantime, prayers for the situation with Marie would be appreciated. I am finally sleeping really well for the first time in two years (no supplement help needed) and Ron said he can tell my body is trying to make up for lost sleep!

     God bless you guys for being such good friends!

     patti

136. Andrea said,

     April 18, 2007 at 3:53 pm

     So good to hear from you Patti. Just thinking about you sleeping alot makes me very very happy.

     Will pray for you and Marie. Andrea

137. patti said,

     April 21, 2007 at 9:08 pm

     I’m not even sure where I should start this posting so I guess I’ll start with the day before mom’s funeral. Marie decided she wanted her way that day about something at mom’s house and when we told her “no” because we didn’t have enough space. So she let loose. This was the first of several episodes. This was not a display of grief as you will note by her response to us when we told her she would have to wait. She was screaming, yelling, slamming things around the house, etc. My kids were crying as they had never seen behavior like this before. As we dealt with her she told us she would continue to behave that way until she got what she wanted. Unfortunately for her, we’re too smart and she’s too dumb to know she shouldn’t have said that because all she did was prove to us that she was throwing a fit not out of grief but out of selfishness. When we got her home I sat her on the couch with my three kids and told her she’d sit there until she apologized to my children and us for what she had just put us all through. She sat there for 3 hours. And I won’t even go into details about what she did during those three hours. But one thing that particularly annoyed me was Luke was sitting on the living room floor and she lifted her skirt up to the top of her legs so her underwear were in plain view. Keep in mind she’s a grown women physically. I dealt with that for a ½ hour before she finally just tucked her skirt between her legs and over her knees so nothing was showing. But that’s the kind of garbage she was doing. After three hours of her sitting there (no one else was there by this point) making a total butt out of herself Ron finally called David and told him to come and get her because we weren’t going to keep her in our home with that kind of behavior. For six hours my children watched this kind of belligerence which was beyond imagination. Dave drove over from Banks (about 45 minutes one way) and worked with her also. She spent the night with his family. That night as Ron , Dave and I stood outside our house talking we were all so angry at what mom had left us to deal with. Here is was, the night before her funeral where we were supposed to talk about how much we loved her and we were too angry to even think about it.

     At mom’s funeral Marie wouldn’t even speak to us. At 3:00AM the night before I got up and edited what I was going to say. I eliminated anything that had to directly do with my relationship with mom and kept it just to the people we wanted to thank for the different things they had done for our family. I couldn’t look up as I spoke because I was having a hard enough time keeping it together. Not to mention being shy in front of people. The chapel was very full and as I looked out in the beginning of my words I realized that nearly everyone there that day were mine and Ron’s friends. Dave had 2 or 3 people there for him. At that moment I realized just how blessed we were. Those people came to be there with us and for us. It was amazing. When I finished talking we sang “All the Way My Savior Leads Me” which is the song God gave me when mom was diagnosed. I sang that song every time I got ready to go out with mom or when things got very stressful. We also sang Holy, Holy, Holy and we closed with It Is Well with My Soul. Oh, the singing was so wonderful! It sounded like we were in a church full of people! It was amazing. Being in the front row and hearing people behind us it was just booming and you could hear the joy in people’s voices. The pastor from our church preached a salvation message that was very good and we were pleased with it. Our biggest concern going into the funeral was that the gospel would be preached. Which is why we chose our pastor because we knew it would be. Mom’s pastor didn’t come to the funeral – I’m sure a little bent out of shape. We did this at dad’s funeral too. Mom did not want her pastor doing the funeral. He’s in his 80’s and should have retired years ago. David did a VERY short eulogy of mom which was interesting to say the least. He too was struggling with what to say after our anger the night before. He relayed two very charismatic moments from mom’s life that personally felt like he was putting a needle in my eye. But looking back, I wonder if he did that because he couldn’t say anything else nice at that moment? We were all so burned. Nonetheless, he must have felt bad about it knowing how Ron and I feel about the whole charismatic movement because afterwards he started to apologize to Ron. I think my husband’s response could not have been more appropriate and it really made me change my heart. He told Dave, “there is no apology necessary, that is who mom was. Like it or not.” And I found that the folks whom we talked to about this were just as understanding.

     We did have an open casket. We had gone to see mom the day before. I was concerned they would be unable to “fix” her eyes and I was correct. They were unable to cover the damage done from the low platelets so her eyes were caked in makeup and you could tell. But what were they going to do? Mom’s platelets were so low that whenever she had her head one way or the other the blood would pool in the skin and bruise that eye. Then we’d turn her and it would happen to the other eye. There wasn’t anything we could do about it. So she had two pretty good black eyes when it was all done. Anyway, mom’s picc was gone. I don’t know why I was so relieved to see that thing gone. I just was. It just represented something to me. No more transfusions? No more sickness? I don’t know. It just meant something to me.

     The cemetery committal was very nice and short. God gave us sun!! It was a tad windy, but not too bad. We were so thankful for a full day of sun. It was far more then what we expected. I don’t know why, we had prayed for that.

     After the cemetery we had a gathering at our home which went very well. Just about everyone from the funeral came over. We had food trays catered which worked out really well. A couple of ladies from our church ran it beautifully. It was perfect. Had good fellowship and just relaxed. One of the ladies bought me a 2 liter of diet coke and literally kept running over and refilling it. J She told me that her mission was to keep my glass full of diet coke. Just for that day. I’m done now. I can tell the NutraSweet has done some damage. So, the funeral and everything went really very well and I was so pleased – for mom. Not that she could tell, but just because. I felt like we honored her every way that we could.

     After everyone left our house Dave’s family (kids and all) and Ron and I sat Marie down in the living room and Dave told her she had something to say to us for her behavior the night before. Well, that just started another 6hr standoff. Because you see, as Marie says, she “never does anything wrong and has never had to apologize.” Those are her exact words. If someone thinks she is too retarded to know what she’s doing they are sorely mistaken! She knows exactly what she’s doing! She informed us again that she would behave that way until she got what she wanted from the day before when we were at mom’s house. I won’t go into all that transpired during that 6 hours but I’ll tell you Ron gave up at the 1.5hr mark. The rest of us held out and in the end she had lost a whole lot of her favorite stuffed animals and finally her TV. And that was the ticket! When Dave and Cathleen left that night we had all but forgotten it was mom’s funeral that day. We were so worn out dealing with all this garbage. And sad that the day we laid mom down was so marred by Marie’s behavior. One thing we all learned is that Marie does a lot better when you treat her like a 5yr old – not an adult as mom always said she should be treated.

     And then the Son came. Marie is not saved, but the Holy Spirit is working. Two or three days later (time escapes me) Marie told both Ron and I she was sorry. It about killed her. And it was quiet. But we all heard it. Since she apologized to Ron first, she told me at the dinner table. One by one (totally unrehearsed by us) each of the kids told her they forgave her and loved her, as did Ron and I. I believe that is the first time in her life she has ever apologized for anything. And you could tell it made her feel good. But it took a couple of days of God working for her to do it. So I believe, that while we were all at our wits end and literally starting to consider putting her in a home that we actually made significant progress and broke down some serious barriers. Her behavior this week has been very good and we are very sure to let her know at the end of each day how much we appreciate it. We also cover the events of that day that couldn’t have happened if she’d had poor behavior so she understands what she would have lost. Yesterday, we took them bowling. We let her know how fun that was and that we couldn’t have done it if she’d behaved poorly. Although, what she doesn’t know is we would have dumped her at David’s because we won’t punish our kids for her behavior. So while undoing 49 years of selfish, childishness is difficult, I think that she is learning fast that she is not going to get her way like she used to with mom. We also have a better understanding of how hard the past ten years must have been for mom with her. It took Ron and David physically restraining her at one point to get her to quit slamming things around and throwing things. Mom could have not done that if she’d pitched this kind of fit, so I think mom just let her have her way so she wouldn’t have to deal with it. So much is coming into perspective now. So on the one hand, we’re all a little angry with what we got left with. On the other hand, we feel pity for what it must have been like for mom to be sick and go through this with her. But for now, I think we all have A LOT more hope for Marie’s future in our family.

     The biggest problem I see on the horizon is Ron needs to be able to hold firm longer. But he’s tired of this and will give in at times. He lived through 30yrs of it. David didn’t. Which brings me to another healing. There was always a lot of anger (on both of our parts) that Ron and I bore this load of caring for mom and dad for so many years. And Ron since he was 17 (that’s when his dad first got lymphoma). When David went away to college he never came home again. Literally. Mom had given Ron her side of the story but we now heard David’s. He used to argue so badly with mom about the monster she was creating with Marie that we were going to have to deal with someday and it wasn’t fair to Marie or us. Well, one fight too many and he was done. He left and never returned. Mom pushed him out as much as he wanted out. So when the truth comes out, you have a much better understanding of why things were the way they were and the anger is gone. If Ron could have, he would have done the same thing. So, it’s interesting the things that come out after someone dies. Ron always told me that when people die all kinds of family dirt tends to come out. He was right! Mostly now though, we just have a better understanding of the situation that took place. I don’t know. It just helps somehow.

     Dave did one other thing that dropped both mine and Ron’s jaws. 23yrs ago David was dirt poor and out of money. He was feeling dejected and crying when Ron called him one night just to say hey and find out how life was. At the time, he was a starving teacher. David shared what was going on and Ron was on the road for the 8hr drive to Erie to help him. That day Ron handed David $5000 cash to help him out. No questions asked. Done in love. Well, the other day David found out that we went $20K in debt taking care of mom. David had never considered the $300+ we were spending in fuel a month. The $150 doctor appts. that mom couldn’t pay for because she forgot her checkbook (they didn’t take Discover). If she paid us back from memory that was fine. But often she forgot and we didn’t bother asking her. We just figured one day it would all straighten out. And we knew the debt was short term. There was just so much we paid for that he never knew about until some conversation he had with Ron. He took Ron outside mom’s house and said this: “23yrs ago you came to me in love and blessed me. Today, I want to return the favor for what you did for mom.” Ron always thought David never remembered that day. It just goes to show, you reap what you sow. Sometimes, not for many many years later. We were floored…. and blessed.

     There are a bajillion things I could say but I think that’s enough. It gives the bigger picture of life right now. We’re cleaning things out and that brings it’s own humor, memories and frustrations. Like the 500 bread bags we found that mom was saving for some use we’re sure. The 6lbs of brown sugar and 25lbs of white sugar she bouth that were on sale, but she never ate that stuff. Canned food stuffed in every available drawer, cupboard, etc. Goodness! The only heartache I’ve had so far going through this stuff is that today Cathleen took it upon herself to go into mom’s house and take everything out of the kitchen she wanted for her girls and herself. Never mind that we were supposed to do this on Monday together so that no one got shafted by not getting what they wanted. Never mind that Ron and I own that whole house and all of it’s contents. It is our house now. There were a few things I wanted for sentimental reasons. I know she’s thinking, “they have plenty of money, they can go buy it.” But I wanted mom’s whatever……. She had no relationship with mom. She hated mom. I loved her with all my heart. So, we’ll see what happens. I have decided that come Monday I will tell her not to bother coming over that it seems like she pretty much took whatever she wanted anyway. I think that will get my point across that she had no business being there without me saying anything directly about how hurt I was that she did this.

     And so we move on. We are praying and looking at where God wants us to move to. We’ve decided to fast and pray for a few days looking for God’s direction. Right now things are aiming towards Wyoming but nothing is set in stone and we just want God’s blessing on wherever we go. Otherwise, why go? We are looking at building a “green” house. Not because we’re environmentalist whackos, but because we want a healthy home for our family with few chemicals to affect Luke’s health or anyone else’s for that matter. But that’s another posting!

     I will close this now. My health has taken a major dump since about the first of March. I met with Dr.Reuter for 1.5hrs yesterday. I’ll move everything else on that to “Anything Goes.” Marla, if I post there, will it move that category to the top of your list so folks know someone has posted?

     Thank you , ladies. Especially you, Marla, for giving me this space to chronicle mom’s walk with this disease. And really, my walk. It was cathartic for me to be able to write (can you tell I was a journal writer as a kid?) and so helpful to be able to ask questions. It also helped many friends be able to keep up to date on mom and know how to pray. I look forward to seeing mom again some day. Even so, come Lord Jesus…………..

     Patti

138. Administrator said,

     April 22, 2007 at 1:22 pm

     Wow, Patti, thanks for the update, and lots to address, huh? Your recent post sure gives us a little better picture of the trouble Marie can cause, especially the skirt thing with your son! Cripes, I would be pissed for sure. But I won’t go there at this time, ha! I’m sure I could comment on a lot of what you wrote including the part about how things come out after a person passes away. Even though I didn’t pass away, just the knowledge that I could brought things out in my family, ha! But it was good, as you also experienced. There is healing in the truth at times. As the Bible says, “concealed love is worse than open rebuke.” I think that one really glared us in the face.

     Before we close on this section, when you have time, I thought it might be nice if you could outline what your MIL tried and what seemed to work, etc. I mean “specifics” on which products she took, how many times a day, milligrams even, if that’s possible. That way it would be more helpful to anyone searching that comes across this section. I realize that may be a tall order and hard to document now in retrospect, but the more information, the more helpful for anybody searching for answers.

     Regarding continuing with discussions on your health, and anyone else who wants to join, I’ll try to figure out how to do that like this section. I’m thinking it could be in both sections of “Anything Goes,” and “Alternative Health Treatments, etc.” I’m not sure how to get it up to the top, but I do know that once you post, it should be up on the top of the “comments” listed on the right of the blog. The problem is I know that not all browsers display it the same way, and some MACs have the section all the way at the bottom of the page which is not always self-evident unless the person scrolls to the very, very bottom of the page. Basically one ends up having to hunt around. . . Maybe we can start the thread if you email me your first post, and I’ll set it up like this one? We can touch basis on that one.

     Okay, better get my butt moving before I neglect things that need to be done!

     Take care!

     Marla

139. patti said,

     April 22, 2007 at 4:43 pm

     Marla,

     I think I can do that pretty easily. I have her notebook so it’s just a matter of going through it and putting things in some semblance of order. It’s a good idea. So much is scattered through these postings it would be hard to get a clear picture of what her daily regimine was like. I’ll post it by the end of the week.

     Also, I’ve been contemplating a blog spot for health but I like yours so much! Is it hard to get one started? Or would you prefer I just stay around here? I don’t really have the time to set something up but I also feel like I’m taking your space! At least now it will be more real discussion then journaling. Know what I mean? What do you think? Is it worth my trying out a blog spot or should I keep hogging your space?

     Patti

140. Andrea said,

     April 22, 2007 at 5:54 pm

     Hi Patti–Thanks for sharing your story. You really walked a difficult walk with Marie, it sounds just horrendous, but what a benefit to her that you are so strong. I couldn’t have done it.

     Speaking only for myself, I love having access to both your and Marla’s brains on one blog!

     When Rob was so so sick and feared for his life, it also brought out some previously covered-up family stuff. Good and not so good. Mostly good.

     Will look forward to that long detoxing discussion, Patti, hang in there, Andrea

141. Administrator said,

     April 22, 2007 at 6:55 pm

     Thanks, Patti and Andrea, I really have appreciated and enjoyed your participation on the blog. I don’t mind at all if you continue to post here. Sometimes I feel bad when I just can’t get to the blog and respond in a timely fashion, otherwise I don’t mind at all sharing space. I find it nice that we are all Christians interested in health issues, but yet we each have our own thing that we’ve learned, so we can each contribute different, yet complimentary things in one place. And even though I haven’t received a ton of “comments,” I do know that we are getting visitors because I just checked the status report which I added on in Sept 2006, and as of today we’ve had 14,618 hits. Not huge, but hey, this is my first blog-a-do, and it isn’t that specific as I just blog about anything that I feel like. Don’t ask me where they’re all coming from since I don’t think my stats program is that detailed (and I don’t really understand all the stuff to read it, ha ha). For all I know the site is just being crawled by some bot, or accidental hits, ha ha! At any rate, I do know we’re getting some hits from live people since sometimes I get people who have sent me private email and told me they’ve been checking on my blog.

     If you decide you want to start your own blog, I don’t think it’s hard, although, I admit, my husband set this one up for me! So I don’t really know how to get it started from scratch. It’s actually the 2nd blog on his account. Goatrevolution.com belongs to Brian, and mine is “blog 2.” He just started my oldest son, Andrew’s as “blog 3.” So, I honestly haven’t started my own blog, and have only played around with this one to try to figure out how to work it. Little by little I’m finding stuff, heheh. I’ve asked Brian how much space I have, and he just says, “Don’t worry about it, just keep blogging as much as you like.” Ha! We’ll see how long it goes. . .

     I look forward to whatever notes you can share with us, Patti, regarding your MIL’s treatment. I guess I’ll keep a copy on this portion and perhaps another one under the Beginnings of Steele’s Chronicles to keep it in an easier spot to find.

     I’ll continue praying for you so that you can keep up with Marie, oye. I can imagine dealing with someone who is retarded is difficult enough, but dealing with a brat, would definitely try my nerves! Especially if they were to purposely try to damage the morality of my children, grrrr. I pray that type of behavior was just a fluke and will not resurface again! Course, I’m already old and polluted, ha!, and if she did that to me, I’d probably just laugh. . . I know you can’t shield the kids from the world forever, but it’s just that you want to make sure the little ones grow up right first, sigh. None of that crap in front of the little ones!

     Take care,

     Marla

142. patti said,

     April 29, 2007 at 11:28 pm

     Well, Marla, my list still isn’t done. Truthfully, we’ve been buried in cleaning out mom’s house. We’re trying to get it ready for selling. We are not obligated to stay in this state while we settle probate so we’re trying to move stuff forward in the hopes of being moved by the end of the summer.

     I did pull out her supplement stuff yesterday while I was there so I’m getting closer.

     Marie has settled down tremendously. She has the occassional “I don’t want to” attitude but since she lost so badly those first two days she has not challenged us again. She’s a quick learner. Good thing because she was getting reaady to get shipped off to David’s if that had happened again. Now, she’s pretty much a joy added to our home. Mom never let her do anything. I guess she was afraid if Marie failed that she’d feel bad and mom always had this thing about Marie not feeling bad. Well, here, she’s learning to cook (which she loves!), she unloads the dishwasher (she’s loving having a dishwasher!), helps pick up, and her most favorite thing to do is work with Ron in the shop! She feels like she has a purpose in life. And don’t we all do better when we feel like we have purpose? I think in the long run, she’s going to do just fine.

     It was a hard week for all of us as we cleaned out mom’s house. But even then, Marie behaved very well. And that was no small thing for her. Watching everything she grew up with get tossed out or packed or whatever. Kids don’t like change and she’s no different in that regard. So some of the stuff we found is hilarious. Mom had OTC’s from 1963, she had darvecet from 1978 (we figure that must be from one of the boy’s wisdom teeth being pulled). She had 5 brand new bottles of nyquil (she never took the stuff but it was on sale). You know those little plastic cups that come with liquid medicine? She had over 50 of those. Oh yeah, and I won’t have to buy toothbrushes for about 5yrs. I think she had about 30 brand new ones. Must have been on sale. A lot! Remember the old plastic butter tubs? She literally had several hundred of those. Not just the ones she used in her house, but she had an entire box of them in the garage also. And on and on. Just really funny stuff. Needless to say, we got a dumpster this week. It’s 16ft. long and is almost full! Well, we’ve thrown in a few things also, but still, it’s mostly hers!

     So, that’s what we’ve been up to. Tomorrow is Marie’s 49th birthday. We are taking her to the fun center for lunch and bowling. She put in her order for a birthday dinner and cake. We aren’t usually big on birthdays around here, but being so close to mom dying and her being like a 5yr old, we’re doing it all this year. She’s just like a little kid tonight. Can’t hardly wait until tomorrow. Very funny.

     Alright, I gotta jet. It’s been such a long week at mom’s working that I got behind on laundry, etc.

     Oh, I’m starting to catch back up with my health too, so that’s a good thing!

     Hope everyone is well,

     patti

143. Administrator said,

     April 30, 2007 at 8:53 am

     Oh my gosh, Patti! That sounds so much like Brian’s grandmother! As you know, she ended up living with us for about 2 years before she passed away. But before that, we had to empty her “storage rentals.” No house to sell, but yep, she had stuff in storage that she “paid” to store. Most of it was junk. Brian knew that she had mostly junk in there because she would have him come over at times to help her sort things out and move things around. When she came to live with us, we couldn’t see paying her storage bills for what Brian knew was pretty much worthless stuff. Since she wasn’t gone yet, we moved all those boxes into our garage, and backyard, oye! Brian tried to get rid of stuff that was clearly junk first, but then we had to go through boxes here. She had stuff like you said. . . “butter tubs!” And LOTS of them! Boxes of old Reader’s Digest issues. She had so much stuff, that Brian thinks that lots of that stuff probably wasn’t even hers! He thinks that when someone she knew passed on, she would take some things and store it. The reason why he thought that was because among some of her stuff were old “health related” books, and she was not into health stuff at all. Completely out character for her, but she was a collector. She was the type that lived on microwave mashed potatoes, Etanman’s (can’t even remember how to spell that!) pastries, and coke. Her health was terrible, and from the time I first met her (she must have been in her 70s or so) before Brian and I even got married, she had health problems and could barely walk. I’m amazed she was almost 90 when she passed. Unfortunately, a lot of her later years was endured in poor health. But talk about pack rat. I’m not sure what it is, but Brian and I thought it had something to do with those people who have gone through the depression–everything is valuable to them, I think. Anyway, what you’ve described sounds so familiar. But at the time it was really strange to me because my parents aren’t like that. They don’t store lots of junk. As a matter of fact, I don’t think I know anyone else that’s much like that either until your MIL! Ha ha!

     I’m glad to hear that things are working out for you and Marie! That certainly put a smile on my face,

     Don’t worry about not having time to do your MILs list, yet. I figured you’d have a lot to do, and there is no rush, anyway. Do what you have to do and get to it whenever you can. I really appreciate it.

     Okay! Hope you all had fun for Marie’s birthday! We don’t do really big things for birthdays around here either, but little things are nice, too!

     Take care,

     Marla

144. patti said,

     May 1, 2007 at 12:00 am

     Marla,

     It is definately a depression era thing. Mom always told me I have no idea what it is like to do without so I could never understand. And she’s right. Even growing up without a lot of money, we always had food and clothing. I never knew how poor my parents were. My kids are the same way. They have no idea what our financial state is (well, maybe their too young to). They just figure, presto! The cash comes from mom and dad’s pocket! Our dumpster is supposed to go bye-bye tomorrow (unless I can get it extended) so we were trying to finish the garage tonight. Mom had 3 huge boxes of old flannel clothing that she cut into rags. They never got used. Just stored. But she couldn’t part with them because she might need them some day. It is just such a depression era thing that it partly makes me sad for what that time must have been like, grateful for how good we have it now, and wishful that I would be more mindful of how much we spend these days. So, just a bunch of mixed emotions. But it’s still fun to go through. Sometimes we laugh, sometimes we cry, but we are enjoying going through the stuff.

     Get back with you all later.

     patti

145. patti said,

     May 9, 2007 at 10:42 pm

     This will end up being a fairly lengthy post. I am going to try and put the nutritional/supplemental routine that mom was on into print here. I am only going to use the most recent routine she had because things really changed from the beginning when we were flying by the seat of our pants to the end when we had the guidance and help of both Drs. Reuter and Kou. I will separate her routine into food and supplement categories. And I will probably have to use some commentary to explain a little bit.

     Foods mom ate nearly daily specifically to treat her disease:

     To cleanse the liver:
     1 organic beet
     1 organic cucumber
     1 organic lemon

     juiced through her champion juicer. Added 1 tlbs olive oil. Drank one time daily.

     1/2c. organic yogurt daily
     1 tbls of flax seed mixed with her yogurt daily
     1/2 c. mung beans daily for iron chelation
     2 cups of Dr.Kou’s chinse herbal tea formula daily

     For platelets:
     juicing 1 whole pineapple. Eating 1 tbls of black sesame seeds ground up.

     Eggs, meat, cheese daily for protein to prevent muscle wasting.

     Supplements:

     1 scoop of Beyond Whey added to her daily yogurt (prevents muscle wasting)

     HMF or Flora Source probiotic daily (1/2 tsp. of HMF/ 5 caps of flora source)

     Unda Numbers 2, 37 and 710. These were bone marrow and liver cleansing homeopathics. 10 drops each twice daily. One of these is called Medullosseinum Plex (bone marrow).

     2 capsules of Natures Sunshine Super K daily (help bleeding/clotting). These are 9mg caps – not the 1 mg you get in the store

     1 capsule Natures Sunshine kidney activator daily (to clear out fluid – her kidneys weren’t functioning fully and if she didn’t take this fluid would build up around her heart and lungs and cause pain). This is a combo of uva ursi, juniper berries, parsley, dandelion root, and chamomile. 830mgs.

     1 capsule/3x’s daily of Natures Sunshine Super Algae – this is a combo of Klamath blue green algae, chlorella and spirulina. 1600mgs. It was used to keep mom’s bowels moving as this was an issue for her.

     1 capsule calcium/magnesium 400mg mag/800mg calcium
     1 tbls Cod Liver Oil daily
     1 tsp Natures Sunshine chlorophyll mixed with 8oz hot water (this is yummy). chorophyll is an excellent blood builder.

     1 capsule Milk Thistle 2x’s a day 250mg caps. This was for liver cleansing.

     1 cap. Eco Marine Shark Liver Oil – 3 x’s a day 500mg.

     1 cap. bromelain 2x’s a day – 500mg.
     1 cap Bee pollen – 400mg
     1 cap. Natures Sunshine Liv-J. – liver cleanser 872mg.
     1 cap. Natures Sunshine heavy metal detox – 446mg.

     Mom was taking a lot of stuff not sanctioned by Dr.Reuter or Kou. She just felt like she “had” to if there was any chance it would work. Particularly the liver cleansing stuff because she was taking neupogen shots twice a week and was concerned about the drug processing through her liver. When her platelets hit 8000 Dr.Kou asked her to not take any capsules anymore out of concern they would cause bleeding in either her esophagus or stomach. From that point on she emptied all of her capsules into either her morning yogurt or if they were evening capsules, into a very small amount (like a tablespoon) of applesauce. Just enough to get it all down. She was extremely regimented up until she went into the hospital on March 2nd. After that, she gave up just about everything but the yogurt and probiotics in the morning (and she wasn’t taking the 1/2 c that Reuter told her to but that’s what she was supposed to be doing). She drank Dr.Kou’s teas when she could get the energy to make one up. She lived 38 days from the time of her first infection and 9 days from the day she fell.

     If we could do one thing over again I would rather she juiced more and did less supplements. But she had a mind set about supplements that was hard to change. Knowing what I know now, after a few years of study, talking, research, I think juicing would have been far more valuable. But maybe it wouldn’t have bought her anymore time either. Only God knows. Anytime someone told her about a supplement they read would help something pertaining to her MDS she would try it. Even if only for one bottle. But I think this was detrimental. However, she would not be swayed otherwise.

     I think that’s it. Hopefully I haven’t missed anything important. If I have, I’ll add to this later.

     Patti

146. Administrator said,

     May 10, 2007 at 7:17 am

     Thanks, Patti! I’ll copy and paste your latest post to the Beginning’s of Steele’s Chronicles so that a quick copy can be viewed there.

     So just to clarify, all the supples and liver cleanses were in addition to Dr. Kou’s acupuncture, right? About how often did she get her acupuncture and approx when did she start on that? About when or what year was your MIL diagnosed? I’m trying to get a picture of how long this all took–i.e. how long you were flying by the seat of your pants, to approx how long she was doing the above supps, to how long she did acupuncture, etc. Sorry for all the questions, but I’m thinking that when a person sees this stuff, knowing how long she did them might help them decide which ones they want to try. Like if I saw she did X pills for 6 months, but didn’t see effects, then I might forego that one. Or if I saw she did Y pills for only 1 week, then perhaps she didn’t give it much time, so might try that one. See what I mean? Anything you can offer would be great. The above list is already much more revealing than what I knew from when you and I met and started sharing stuff on blood disorders. I do realise that if she was taking so many things, it would be hard to know exactly how long she tried anything, ha! But whatever you can remember to share.

     Many thanks!

     Marla

147. Andrea said,

     May 10, 2007 at 5:55 pm

     I thank you too, Patti. I know that scientifically speaking, anecdotal information is not proof, but my theory is that if you absorb a lot of anecdotes it helps your intuitive sense of what is right work better. This theory is supported I think by the book Blink, which is how people with a lot of experience in some area can make snap judgments, and they can be correct, without knowing why they made them.

     Every anecdote that is shared gives us a little more experience to draw on in helping to protect our health and the health of our loved ones.

     Andrea

148. Andrea said,

     May 11, 2007 at 2:51 pm

     Me again. Either of you well-informed ladies have any opinions of shark liver oil ? Rob is researching this, and interested. I noticed on Bruce’s blog that he feels better since starting it, though no blood count info yet. Curious if you have any opinions.

     Andrea

149. patti said,

     May 11, 2007 at 4:43 pm

     Mom took shark liver oil for a long time. I think for blood disorders it’s probably a toss up between that and Cod Liver Oil. CLO is actually considered a superfood because it covers so many areas of our health. However, SLO is “supposed” to be good specifically for blood diseases. Mom took both so I think she was hoping either of them would work!

     Our whole family takes CLO everyday. We started Marie and the kids just two weeks ago (Ron and I have taken it for a long time) and we’ve actually seen outward improvement of their health. Specifically, the dark circles under their eyes are much better. My ND says those circles are indicative of food allergies (despite what the MD says) so an improvement would mean their immune systems are stronger.

     Ron’s favorite CLO story is a growth he had on the back of his leg for 20yrs. It started growing bigger so he went to the doc and he said “yep, it could grow into cancer so keep an eye on it.” Ron started CLO and within 3 weeks the growth dried up and fell off. Don’t know what to tell you about that one!

     And for me – I have been having a hard time with eczema on my elbows for quite some time and stress makes it worse. When I got faithful taking 2tbls a day instead of 1 of my CLO the eczema is now gone. Totally. I meant to tell you about this Marla! You must try it.

     I could go on and on about CLO. At this point, I think either is a good choice. Perhaps CLO would be more of an overall body help whereas the SLO would be more blood directed.

     HTH

     Patti

150. Administrator said,

     May 11, 2007 at 10:48 pm

     Hi Andrea:

     My knowledge of shark liver oil is pretty limited. Years ago Peter Lim suggested it to me to help increase platelets. I did look it up a little, and at the time I only found 4 people who used it. Two seemed to get results, and two didn’t. I don’t remember anymore who the two were who didn’t get the results, but the two who did think they got results were Peter’s son, Stan, and Les Bannah. And as I understand it, Peter learned of the shark liver oil from Les. Les wrote a little about it on his stories section on Bruce’s forum. Basically Les got about a 20K increase in plts while on the shark liver oil, and when he discontinued, his plts would go back down. While it’s not a huge boost, it definitely beats transfusions. Peter’s son, on the other hand has normal levels. BUT, it didn’t take long for Stan’s counts to come up after his ATG, and he also took some Chinese herbs from Get Well International. So it’s hard to say exactly how much the shark liver oil played into it. But I’m sure you’ve read Peter’s posts on the shark liver oil, and he sounds convinced that it was due to the shark liver oil.

     When Peter introduced the shark liver oil to me, I was at the stage in my diet when I had tossed all supplements and powders out. I was strictly on foods, so I wanted to find out what the active ingredient was in shark liver oil. IIRC, when I researched it, alkygylycerol was the supposed active ingredient, so I looked for other natural sources of it. Breast milk was one, and I think calf liver. So I went for the calf liver, and never tried the shark liver oil. Another factor to my decision was that I was already transfusion independent, although still low, but I figured if Les was only getting a 20K boost, and I was no longer transfusion dependent or symptomatic, I didn’t feel compelled to play around with it.

     I just took a peek at Bruce’s blog and saw where he wrote he felt much better on the shark liver oil. That’s great. I hope he sees an increase in his plts as well as his other counts.

     Let us know what Rob decides!

     Hi Patti:

     Yes, I think you’ve already mentioned to me about your CLO experiences as well as Ron’s. That’s fantastic! I did try CLO for a while (the Weston Price Foundation raves about it, so I had to try it), but it did not make any noticeable improvements for me. Maybe my body wasn’t ready for it, and I might try it again soon. As a matter of fact, you may recall that I told you that not only have I tried CLO internally, I even tried the CLO topically on my skin which was affected by eczema. For about a week it seemed fine, but then after about 2 weeks, my skin got very uncomfortable, puffy, and red, and felt like it was sunburned (it looked like it, too). I don’t know why that was. Plus, since I know that CLO is well known for thinning out the blood, and I had low plts, I was not comfortable taking it. So I stopped. However, I have continued to be interested in it and my family took it for a while. I even asked one of the speakers at the Cancer Convention in Sept 2005 what his take was on taking CLO for people with low plts, and he thought it was fine. However, recently, I have had the chance to test it out a bit. My son, Matthew, has been having trouble lately (still with his ankle). We had him take CLO, and he started getting nosebleeds. He has been one to easily get nosebleeds, but he hadn’t had one in a while. This time we have been able to see the relation to his nosebleeds after taking the CLO. We did take him to a Naturopath who did blood work on him as well as a mineral analysis. Matthew’s plts were 330K, but yet his nose would bleed not long after taking the CLO. BUT he would take like two to three tbsps of it in one shot. When he reduced the amount, he stopped the nosebleeds. When I took the CLO, I only took 1 tbsp before breakfast, and I did not notice any problems with bleeding, but then again I did not have much trouble with bleeding even when my plts were below 5K. Some people bleed more easily with higher plts. So I “think” I have my answer. For those who easily bleed and have low plts, I would advice them to take the CLO with caution–i.e. take 1 tsp, and see how they do with it before trying much more. For those who may have low plts, but don’t have trouble bleeding, then my “guess” is that 1 tbsp a day should be fine. CLO is supposed to help the integrity of the blood vessels, so that is a plus for those who bleed easily, but the problem is, it also thins out the blood. So if one has low plt issues, then they should proceed with caution. Always closely monitor yourself when starting on something new.

     BTW, my skin problems have improved a lot! And my sleep habits have also continued to be very good. I’m going through nights without even getting up to use the restroom! It has really improved even though some nights I’ve had to get up because of Matthew. But then when I go back to bed, I go right back to sleep. None of that tossing and turning like I used to do. I’d say it’s been a good 5 months now, so I “think” whatever was wrong with my sleep patterns sure seems to be resolving now. Oh, and another change that’s happened that Brian pointed out to me is that color of my elbows have lightened. Evidently (and I never really paid much attention to is because I don’t look at the backs of my arms, ha), my elbows used to get dry and be a little darker than the rest of my arms. But no more! Something has changed.

     Okay, that’s about it. Just got back from the movies–Spidey 3, heheh. I want to do a little reading and head off to bed. So, toodles for now! Have a nice weekend, ladies!

     Marla

151. patti said,

     May 12, 2007 at 12:39 am

     You have lots of good info on the CLO. I know Ron and I originally both started taking it for blood reasons. Ron’s blood pressure was rising and since high blood pressure ran in his family he wanted to put a halt to it because he didn’t want blood pressure drugs. The thinning of the blood would be what fixed that for him. He went from 140/90 to 110/75 within about a month of taking it. I started taking it for high cholesterol which runs in my family. I know I told you my numbers but for the rest of the world, my cholesterol was almost 300 and went down to 185. My triglycerides were over 200 and went down to 65. I am intrigued that CLO helps so many parts of the body. For sure, our grandmothers knew something that medical science should not have tossed out!

     It’s interesting what happened with your son because it makes me wonder about mom. She was taking both the SLO and CLO even when her platelets were 8K. But if memory serves me correct (and trust me, it could be really faulty right now) she really didn’t start having bleeding problems until the last few months. I mean really bad bleeding problems. She went for a year at 8k platelets with no trouble and I know she was taking the CLO then. But after that picc went in and she became platelet tx dependent, her bleeding became worse/more noticeable. And I know she was still taking it. I think she must have just been one of those people that could tolerate really low platelets and I’m *assuming* the increased bleeding was caused by the trauma to her body of having the picc put in. Could that be so, Marla?

     Andrea, I’ve probably asked this question before but I can’t remember, are all three of Rob’s cell lines affected?

     Marla, very cool about the sleep thing. Hmmm. I’m not sure I’d use CLO topically. I have to give that one some thought. Maybe I’ll try it the next time one of mine has a boo boo just to see what happens. You’ll have to forgive my short memory. I can’t recall what I did yesterday much less conversations I had awhile ago. Sorry. Maybe the CLO will help my memory too. I always worry about that but keep putting it off to the fact that I have sooo much I have to remember right now. Maybe I need some gingko…..

     Okay, ladies, tonight, I finally lost it. I haven’t had any time alone really since mom died and the flood gates really never opened – until tonight. There is so much “noise” in my home because of Marie that I feel like I never have time to hear God’s still, small, quiet voice anymore. David came and took her for 24hrs so we could have a respite because she’s just a monster in our home daily. The spirit that walked out the door with her was amazing. Even my 9yr old noticed it. We all felt this huge weight lift. I don’t know how long I cried and prayed tonight but it was a lonnnnggg time. I told Ron I do not know if I can continue this way for the years it’s going to take to train her. I know he already felt that way. I kept hearing this song in my head. It’s starts out, “I once heard the story of a saintly old mother, who lived out her life here on earth. When she lay on her death bed her friends gathered ’round her and these were the last words she said,”Oh look what I’m trading for a mansion, oh look what I’m leaving behind, oh look who’ll be there to greet me, when I step into sweet paradise. I’m leaving behind all my trouble, I’m leaving behind all my care, I’m trading it all for a mansion, that Jesus has gone to prepare.” There are several verses. I loved singing this song this past two years because it made me so sweetly think of mom. Tonight, it just made me bawl like a stinking baby. What’s with that?

     Okay, I have got to get some sleep. Chat later.

     patti

152. patti said,

     May 12, 2007 at 12:44 am

     One last thought… I’ll try to get to your questions about mom by the end of the week.

     patti

153. Andrea said,

     May 13, 2007 at 7:39 pm

     Thanks, Marla and Patti. . .In answer to your question, Patti, yes, all 3 of Rob’s blood lines are down. His platelets went first–the usual bruising symptom, he was below 10K–but even then he was a bit anemic in the other lines. Then about 2 weeks later, his reds and whites began to drop precipitously.

     He’s 10 months transfusion-free now, and slowly climbing. He’s basically not inclined to do anything different, since he is improving, but wants to have some ideas in storage just in case. I printed out your replies for him.

     You certainly deserve a break from Marie, Patti, after all you’ve been through! It would be a major adjustment anyway, taking on another dependent, even without having cared for your MIL all those months, even without all her issues, never mind your health problems! I hope you can work in regular breaks, wherever Marie ends up.

     Crying is good for the soul.

     Thanks for everything, Andrea

154. patti said,

     May 13, 2007 at 9:36 pm

     Andrea,

     It’s a good thing crying is good for the soul because I’ve done a lot of it this weekend. I have to say, Mother’s Day wasn’t much of a day in my house today. Marie was sick, which was fine by me because I could not face going to church today. I just couldn’t do it. Everyone is off. Okay, all of the adults are off. The kid’s don’t have a clue. Oh to be a child again!

     We are still very much praying about not keeping my SIL. So far we do not have an answer. So, we’ll wait, pray and train…..

     chat later.

     patti

155. Administrator said,

     May 14, 2007 at 1:31 pm

     Hello Patti:

     Sorry to hear that things are still in turmoil there. I wish I had something helpful to offer you, but I really have no idea (just tiny clues) what you’re up against. I can only imagine, and that’s not the same as living it. But you do have me curious as to what kind of “noise” Marie is making there. I will admit that I don’t have much patience for bad “attitude.” Nor do I have “any” experience dealing with mentally retarded people, young or old. I have gotten firsthand glimpse of schizophrenics and bipolar people, and wow, what a task that would be to have to care for them, but I “think” they’re different from retarded people, right?

     Anyway, I hope your family will find some peace soon. What do you mean about praying about “not” keeping her?

     Regarding whether the trauma of the PICC insertion was linked to your MIL’s subsequent bleeding problems, I don’t know. I “think” there was initial trauma from the insertion, but hadn’t that already healed months ago? The site didn’t continue to bleed or anything, did it? More than the trauma, what did bother me was having the silicone line in. Sure it was “convenient” to a certain point, but I remember when they put in my line, I asked them what it was made of. I was told it was silicone, and when I learned that I wasn’t happy. Keep in mind that at that time I was just learning about natural healing stuffs,and one of the biggies was “detox.” I didn’t want anything put in that I would have to detox out because I felt it was stalling my progress. And I figured with time, the silicone would start to degrade, and since it’s right in my arm, it would degrade right in there. When my PICC was removed, it looked somewhat “limper” than when it first went in. That to me shows that some of that silicone line was probably slowly decomposing (if you will) inside me and letting tiny bits of plastic/rubber free into my system. (Just my layman’s suspicion). I don’t see that as a good thing, and as a matter of fact my left arm has gone through some problems (mostly lots of skin irritation and a little pain in the area where it had originally got infected) long after that line was removed. It has only more recently in the last year really cleared up a lot. Was that due to the PICC? I don’t know for sure, but I have suspected it. So my feelings about central lines are that it’s a very personal decision whether to have one or not. I was lucky to have good veins that held up for a year and a half of transfusions, and then for 2 more years of phlebotomies. It was convenient when at the hospital, but I hated it at home. And of course it also depends upon your treatment of choice because is you’re going to get chemos, then a central line is recommended because those chemos are harsh and can easily ruin your veins. In that case, the PICC is a vein saver (although when my PICC got out, the vein in which it was threaded through was completely clotted off from my elbow to my armpit even tho I didn’t use any chemos). Then there’s the infection risk, too. Another chance to take. So it really depends on the patient, what he/she wants, what they “can” have, and what treatments they are going for.

     Anyway, hope things start looking up for you guys. I think it will because God is faithful.

     Hang in there,

     Marla

156. Andrea said,

     May 14, 2007 at 5:30 pm

     Hi Patti–Crying is good for the soul, I believe, and I believe it is also a detoxer, emotionally and chemically, and I think it also clears the soul for that still small voice that will tell you what you are called to do about Marie.

     God is faithful. We have to be patient–the answer always comes. I hate being patient, but it does work.

     I read an article once, about a childless couple who decided to adopt a bunch of handicapped and AIDS babies nobody else wanted. They were so cute, so devoted to their little brood–I think they had 4 or 5. One of them said something I loved–he said, “I’ve learned that God never sends you anything you can’t handle. I’ve also learned that He really pushes the envelope.”

     Prayers and love with you, Andrea

157. Administrator said,

     May 14, 2007 at 6:22 pm

     Oh! Thanks for that, Andrea. You reminded me of a special couple we met years ago who did a similar thing! Since the waiting list for a caucasian baby was so long, they were only able to get a handicapped baby quickly. And when they found out about that, then they accepted. They got him through foster care first, and grew so attached to him that they adopted him as soon as they were able. So, their first adopted baby was born of a crack mom, and he was a crack addict from birth. They said it was horrible at first. The baby screamed continually and uncontrollably. They also had him on some support machines for something, but I can’t remember what, but they did say he had so many health issues because he was born so prematurely and drug addicted. By the time I saw the kid he was “tiny,” but no longer screaming. . . I remembered how awed I was at their story, and truthfully, at the time I didn’t know how they did it. I really do think some people have the gift for that. They are really incredible people. Brian has told me that when our boys grow up, he wants to adopt, ack! He really loves kids! But I don’t know cause if I have my own grand kids, then I’m gonna busy! Ha! Just kidding! Ha! Only time will tell, maybe my boys won’t have any kids. . .

     Anyway, Patti, this is a very good reason for you to take good care of your health, so that you can be strong enough to deal with what gets thrown your way! Course, I know that we can’t do it all, but having bodily strength helps both the body and the mind.

     Hang in there!

     Marla

158. Andrea said,

     May 15, 2007 at 6:38 pm

     Patti–I was just hanging out on the MDS forum and ran across a very alarming exchange involving you and some others. . .I was really really shocked, Patti, at the way you were attacked. It’s appalling. It reminds me of chickens ganging up on one chicken, and getting frenzied about it once they smell blood.

     You have a lot to offer, Patti, but I hope you’ll stay away from people who treat you like that.

     Andrea

159. Administrator said,

     May 16, 2007 at 11:21 am

     Oh my! I just finished visiting the MDS forum. . . cripes. Sorry that you had to deal with that, Patti. The last time I posted there was last November 2006 during a similar “heated” discussion. I had to stop posting before I ended up writing/saying something that I would regret! So since I just read the “recent” “bull fight,” it prompted me to go back to November when I resolved to refrain from the MDS forum. Interestingly, now that I’ve had much time to “calm” myself, I do see that it’s really only a handful of people who are “difficult” or “antagonistic” to alternative ideas. There are a good bunch of people there who understand that you’re only trying to help and share your perspective as a “layperson.” I admit that last November I was so annoyed with what transpired that I didn’t even look back and missed some posts that came after my last post. “Today” I found there were actually a couple posts directed to me that were nice in that they were understanding and “reasonable” to me, and I’m sorry that I did not notice. In a funny way, even though I read those posts, gee, 6 months later? ha! It actually does make me feel better about the MDS forum again. I’m glad that they left it there so that I was able to go back and read it. Apparently there were some posts that were deleted, tho. Missed those, ha ha.

     As to those handful of “combatative” people, I guess they think they are also helping in their own way. Course it’s not necessary to drag in dirt as was done with you, but it just seems to me that those people are just very touchy and “easily” offended, so they lash back. I have tried to be very careful with the way I’ve worded things, making it clear that I’m a fellow patient, etc. specifically for any touchy people (and because I don’t want to mislead people), yet, they still poked fun and made unkind comments. I specifically remember that when I tried to share the “onion soup” recipe there and a couple other places when suggesting that they check out some books from the library regarding a discussion which came up on some of Kevin Trudeau’s suggestions. When you look back, it’s basically the same people. . . But back in November, as I mentioned, I was so annoyed that I did not want to put anymore energy into that forum. Trying to format your thoughts and words into a post takes time and effort. We have lives, family, other things to do than to spend time typing to folks who only spite you for it. The bible tells us in Proverbs 9:8-10, “Reprove not a scorner, lest he hate thee: rebuke a wise man, and he will love thee. Give instruction to a wise man, and he will be yet wiser: teach a just man, and he will increase in learning. The fear of the Lord is the beginning of wisdom: and the knowledge of the holy is understanding.” Certainly, I don’t profess to know all the answers! Nor was I trying to “reprove” anyone, but, “information” is what I thought we were exchanging there, and my husband told me to only spend time on those who want it, not to those who don’t want it. So it was with that spirit that prompted me to stop participating on the MDS forum.

     BTW, just for future use, the machine that was used to calculate my CBCs had the “mid” cells range. The MIDS “do” include blasts. The differentials listed for the whites were Lymphs, MIDs, and Grans. The MID cells lumped together all the other cells that “weren’t” lymphs and grans. The way it is worded on the CBC print out is that the “MIDS may include less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts, and other precursor white cells.”  So “if” there are any blasts that can be picked up from the peripheral blood, then it does get counted, but lumped together with the other whites.  So if the MIDs are unusually high, then they would have to go back and look manually to see exactly why the MIDs are elevated–i.e are they basos, eosins, blasts, monocytes, etc.  But technically, blasts are included with the MIDs and if the MIDs are low, then likely the blasts are also low.
     Take care, Patti, and hope you find peace in your home.

     Hugs,

     Marla

160. patti said,

     May 16, 2007 at 10:46 pm

     Oy, lots to catch up on. I’ll go in reverse order for now. Yep, Marla, I got it again. Only this time it wasn’t over anything natural. Someone wanted to know why they weren’t seeing blasts on their CBC and a number of people (myself included) told them that was probably more common then those that did see them, but mainly it appeared to be doctor preference. That was the gist of it without writing out specific words. From there someone just took off and wanted to know how I knew that. Well, good grief. Like seeing 4 different hematologists, having a doctor in the family verify that for me when mom was first dx, etc. etc. wasn’t good enough? And what about the other folks who also said they didn’t show on their CBC’s? Like I was the only one saying that? Out of a handful of folks, only two had their blast count show up on their CBC reports. I’d say we clearly were in the majority with this one. But alas, some folks just like to fight. I’ve had my fill though. I really “needed” that board when mom was sick. I kept learning new stuff and who knew if the next new drug to come out would work for her? So I stayed. Now? Who needs it? I’ve got too much going on in life. Especially now. Sounds like your hemo showed your blasts too? It seems this isn’t common from what other folks were seeing on theirs. It really just depends on the doc, I think. And the whole point of the post was to put the gals mind at ease that just because her doctor doesn’t show them doesn’t mean he’s a bad doctor. But good grief, is it worth starting WWIII over? I have a lot of really ugly things I want to say to one gal in particular but the verse, “answer not a fool according to his folly lest thou become like unto him” keeps crossing my mind. So for now, I’m holding my tongue and not posting there anymore.

     As for the “noise” Marie makes. When she’s in one of her temper moods she slams around the house, screams at me and Ron and throws things. Pretty, isn’t it? Just what we want our kids to see. This has been a calmer week. Thank God. Again, we’re making headway, it’s just slow and feels like we’re drudging through the mud on the way there. We are still considering she may need to reside with Ron’s brother in the long run. But that will be a decision that will take some time to make and will depend largely on how she continues to respond to us. She seems to respond better to Ron’s brother and since their kids are older they are less likely to have negative consequences of her behavior while she’s being retrained. Right now, I am her anger target. I took care of mom and mom died. As irrational as that sounds, she is like a 5yr old and I can almost understand that. And, I can deal with her anger. I can’t deal with her bad attitude, slamming around, disobeying direct orders, etc. She gets a little autistic at times and that can complicate matters. But other times she shows that behavior to manipulate. Either way, the punishment is still the same because she still has to learn she can’t throw things around and stomp around the house. Our house has never been a screaming, yelling kind of house so having this kind of behavior is not only disruptive but disconcerting as well.

     This week has been better. Although she still refuses to look at me, she is at least listening to me again. And I think she’s starting to see that we really do love her. And, I’m sure we’re not through with her little temper tantrums yet. We’re very careful not to take her to moms because she just freaks out. We are moving all of mom’s bedroom furniture out this weekend so she’ll be spending the weekend with David. He is very good about helping us out that way and understanding that that isn’t a good thing for her to be around. She just cannot handle it emotionally. It seems that anything she used to like to do with mom she refuses to do with me. She always loved going to the store just to get out (otherwise, she only sees the outdoors of our place). She refuses to go with me. Which is her choice, it just limits her outings. Maybe in time that will change. I’ve finally got her taking showers daily, changing her cloths daily (from once a week!), combing her hair, etc. I’ve got her on cod liver oil and am seeing a huge improvement in the circles under her eyes. I put her on alot of probiotic and am starting to see good changes in her psoriasis (sp?). I think that fixing her diet will make her feel better (although she probably doesn’t think she feels bad) which should help her moods. Mom was cheap. She wouldn’t buy organic stuff if the regular was cheaper so I think in someone like Marie that has serious mental impairments and allergies (I believe, I still have to get her tested) that it was costly to her health. I also actually think that it limited how far she was able to grow mentally as well. But that’s just my opinion. I was going through some of mom’s records and found something interesting. Marie was developing normally and at 9 months they started to discover something wasn’t right. Guess what she had at 8 months? Her first vaccination. Hmmmmm. I find that interesting. I think there are multiple factors in her retardation, but I think some of them were controllable (if they’d known). She also had an aunt that was very “simple” so there may be a genetic component as well.

     So for now, I’m at least feeling hopeful again. I think it helps that I got through my weekend of crying and am feeling better also. It just makes the perspective better.

     Andrea, I read something many years ago that said when a woman cries her body actually releases hormones in her tears. I have no idea if that’s true or not, but it kind of makes sense if you think about it. Anyway, don’t know if that’s an old wives tell or not and I can’t remember where I read it. Sooooo…..

     Okay – I’m going to do my best to answer your questions Marla so you can try and put all of mom’s stuff together how you see best to. You asked good questions. I’ll try to answer them as clearly as I can. The whole point of chronicalling this was so others could see what she did.

     Mom was diagnosed on August 13, 2004. At the time she was dx with greater then 30% blasts in her marrow (which today is considered AML) with all three cell lines affected severely. I just looked back and noticed her ANC’s were 200 on that date. Just thought that was interesting in light of all the ANC concerns I had.

     We flew by the seat of our pants with no clear regimen but multitudes of supplements and juicing from that date until Sept. of 2005 when she started seeing Dr.Reuter who is a naturapath that specializes in cancer and also practices chinese medicine. She started mom on the regimen I have listed above. The liver cleansing is in addition to Dr.Kou. It was prescribed by Dr.Reuter. Dr. Reuter did everything she felt like she could but asked if mom would consider seeing Dr.Kou for chinese medicine because she trained under him and considered him to be far superior. Additionally, Dr.Kou was also a hematologist in China. Blood diseases were his specialty there. We had our first appt. with him on 3/23/06. He started acupuncture at that time and added chinese teas to mom’s regimen. These teas changed all the time so there is not one formula I can tell you about really. Dr. Kou periodically did moxa treatments in addition to acupuncture. His acupuncture treatments always focused on the spleen, stomach, and liver. On April 13,2006 he added sea cucumber and a dried fungus to mom’s diet. These are both anti-inflammatory foods. Mom cooked them into a chicken broth based soup. She ate this daily.

     On 7/6/06 he added donkey skin and gelatin to her chinese tea formula as a blood builder.

     On 7/18/06 Dr.Kou gave mom a moxa stick and had her start doing it at home three times a week. Moxa is meant to increase white cells. The instructions for this were specific. Nothing cold could be touched or used for 2hrs after a moxa treatment or the opposite affect of what he wanted would happen – it would actually lower the white cells.

     If you’ve never heard of moxa – well, it’s smells like pot. Mom had a police officer living behind her at the time. She could not stand to do this in the house so she would do it on her patio. It made for some humor at times. Eventually Dr.Kou gave her non-smelly moxa sticks but Dr.Reuter did not like those because she said they use a chemical to prevent the smell and she wasn’t sure that chemical was good for anybody. The moxa would be burned over mom’s skin at the same acupuncture points Dr.Kou was using. The heat was rubbed into the skin.

     Mom’s picc line was placed on 8/4/06 (I think this is correct). If it’s not right on, it’s + or – a few days.

     On 8/8/06 Dr. Kou stopped all acupuncture and started doing more intensive moxa treatments because mom became platlet transfusion dependent after her picc was put in and the extra moxa treatments were meant to help keep her white cells up to prevent infection. At this time he also had mom stop taking all capsules and had her empty everything into applesauce or something else to take her supplements. He was concerned about bleeding in the esophagus and intestinal track from the capsule itself.

     On 8/15/06 Dr.Kou added mung beans and 3 jujubees to mom’s regimen. This was to try and chelate out some of the iron that had stored up in her.

     On 8/29/06 we tested her acid/alkaline state and discovered she was 7.5 which is too alkaline. Dr.Kou added some herbs to her tea to balance that out.

     On 8/29/06 mom started Exjade. Dr.Kou increased her jujubees from 3 to 10 a day. He said jujubees would help both the red and white cells. He added bitter herbs to her formula stating that they would create stronger kidneys which will in turn increase the whites and platelets.

     On 10/10/06 Dr.Reuter had mom stop the following items:

     Super Algae, Vit. K, prunes, onions, salt, oranges, potatos,
     cut back water drinking from 10 glasses to 6-8. She had her increase postassium laden foods. This was done because mom’s kidneys weren’t functioning well (she couldn’t get rid of her swollen ankles) and she felt they were contributing to the problem. Mom started taking dandelion leaf and cornsilk to slough off the fluid from her body. These worked beautifully! She rarely ever had trouble again as long as she took these daily and on transfusion days, twice a day.

     Most of the above are from notes I took in mom’s notebook from different appts., etc. I KNOW that mom did not follow this regimen closely for about the last 4 months or so before she died. It was a lot of work and she was getting tired. And I might be off, maybe she didn’t follow it closely for longer then that. That’s just what I can tell from looking back.

     If I had to pick a few things that I truly believe were the most helpful in the long run I’d say the chinese herbal teas, moxa and the Unda homeopathics would be my picks. I think the foods may have been helpful for overall health, but I really don’t know. I think at some point it becomes very difficult to be making soup everyday and still have to force yourself to eat enough calories to maintain your body weight. At least for mom that was hard. Maybe it was age, maybe it was exhaustion, etc. I do know that at one point she was able to maintain a HGB of 8 even though her HCT would drop below 24. I know that HCT is supposed to be 3x’s the HGB but for a few months she was able to maintain 8 even though she’d hit an HCT of 21 or 22. That was at the 8 month mark of seeing Dr.Kou. He told us originally that he thought it would take him one year to get her to that point.

     Dr.Kou and Dr.Reuter both told us the same thing. Reds are easy to fix, whites a little harder and platelets can take many years beyond that. Although platelets could be brought to the point where there wasn’t a bleeding danger, it would take years before they get to “normal.” For us, it was mom’s whites and platelets both that eventually got her.

     Okay, Marla, I think that’s it. Is it long enough?

     Patti

161. patti said,

     May 16, 2007 at 11:10 pm

     I thought I’d post a separate note on what I’m currently doing with my health regimen in trying to heal my hormones and bladder.

     I mentiond elsewhere that Dr.Reuter had me do a cleanse. I thought I’d share it with you. It’s called Bieler Broth. It’s used during the day in lieu of food and is done for four days. I was unable to go all day without food so I was eating lunch and using the broth the rest of the time. It definately cleanses and it did good things for my bladder!

     I steamed 2 zucchini, 2 celery sticks and a handful of whole beans until very soft. Cooled and then blended in a blender until smooth. I would heat a cup at a time and add some garlic salt or sea salt to it for flavor. Works pretty good.

     With the improvement in my bladder from that cleanse it proved to me that toxicity is definately the issue causing the autoimmune disease. I am back down to one pain pill again (praise God!) and told Reuter I want to be off of them before we move (hopefully end of summer). So we have a clear goal at least. I am also taking Guna homeopathic liver cleansers. Guna liver, guna matrix, and guna lympho. 15 drops twice daily on the last two and 5 pellets twice daily on the guna liver. I’m also taking two chinese tea drinks a day which also greatly help my bladder. I can always tell if I’ve missed them.

     I started body brushing which is bringing about multiple positive changes. It’s meant to help move the lymph glands (which is happening). I can tell that’s working because my sinuses are almost always plugged, but with the body brushing they are draining nicely. It’s also causing me to lose some body hair (this is a good thing!). In my monkey like state, it’s always good to lose some of that. And, it’s tightening my skin! I use a boars bristle brush and brush towards my intestines with everything but my face. My face and neck I actually brush up towards the head.

     The T-Tapp is also doing a great job with my lymphs. I told Reuter about it and she blew the wad on the stuff. $350! After reviewing it all she was thrilled and said this lady is really onto something. She’s doing more research but one of the things Reuter had been studying is the importance of moving the lymph glands in disease. Which sounds basic; but she’s looking at it deeper she said and from different angles of disease. Don’t know what that means, if she tells me, I’ll pass it on. Nonetheless, I’m glad she approves ’cause like it or not, I’m gonna keep t-tapping! I have lost another 1/2 size and it appears most of that has come from my awful baby belly! How cool is that? Today I got a new blouse in the mail and it’s 3 sizes smaller then what I was wearing before I started t-tapp. But, get this, my actual weight has only changed about 6 or 7 pounds. That’s weird but she says on her videos that’s how it is because she’s working solely with deep muscles. When I get to where I want to be I’ll send you pics, Marla. We’re having family pictures taken on Monday and I’m actually kind of anxious to see the difference compared to when we had them done 5yrs ago.

     My hormones and adrenals appear to be doing better also. I don’t know if this is because of less stress or a combo of all the changes above. I’m thinking the t-tapp is helping the adrenals a lot. I used to never be able to exercise without my body crashing because I didn’t have enough cortisol to sustain me. I never feel bad after t-tapp which makes me think it’s good for my adrenals. Not sure though, I’ll just have to keep an eye on it and see. I’ll be retesting my adrenals in June so that should be revealing.

     I am having my two older kids tested for food allergies this Friday. We are almost positive they’re allergic to milk and that it’s a factor in Luke’s hives. I’ll be anxious to see how that plays out. They aren’t thrilled at all with the thought of getting poked. I’m going to go first and get my TSH and lipid panel done again. Oh, we also discovered that I’m not only allergic to dairy, but I’m allergic to whey protein. Dr.Reuter said it is few people that are actually allergic to whey (it’s still dairy) so I join a small crowd. But that also increases the liklihood that my kids are and it’s causing them health problems. My kids are doing well on the CLO and we intend to keep them on it for a long time.

     Andrea, awhile ago you asked about the cleaner that I use called BioKleen. It’s my liquid dishsoap (although they make lots of cleaners). They mainly use grapefruit as their base for cleaners. It cuts grease great and is not harmful to the soil. Which sounds funny, but since our food comes from the soil I figure it’s better to not put junk into it.

     Okay – that’s my latest health regimen. Always changing. But that’s it for this week anyway.

     Patti

162. Andrea said,

     May 17, 2007 at 3:54 am

     Thanks Patti–this is another one that will get printed for Rob.

     Appreciated too Marla your wise words on the MDS forum. There are nice people out there, but they get drowned out by the mean ones! If there were a designated “leader” who could set some guidelines for respect, that forum would be a safer and a better place, and more helpful to people, too. I guess we can just be grateful that, even without a leader, the AA forum is consistently respectful and courteous.

     Adios! Andrea

163. Administrator said,

     May 17, 2007 at 9:31 am

     Wow, Patti. Thanks for all the updates! I’ve copied and pasted your post pertaining to your personal health and that of your family’s and started a new category called Spin Off from Steele’s Chronicles. We can continue discussing our health issues there. That way we can separate it from your MILs information here. If anyone wants to join in on the discussion or just follow along, it can be viewed here.

     See you there!

     Marla

164. Administrator said,

     May 17, 2007 at 10:00 am

     Hi Andrea:

     I agree with you. The AA forum does seem more tolerant, but then again, it only has a fraction of the members as does the MDS forum, and I think most of the AAers tend to be younger, too. You know as you get older, you’ve had more time to develop your own opinions and you have learned to speak your mind! Ha! So being that the MDS forum has a much higher number of members and a much older gang, I’d say the odds of having “disputes” or “differences of opinions” will be greater. That plus some things like “tone” can get lost in typed words, which lends to a higher possibility of misunderstandings.

     Now having said that, there were a couple times on Bruce’s forum (years before you and Rob came along) when there were some “words exchanged.” And even though it was Bruce’s own forum, the comments were directed towards him! (IIRC, it had something to do with his opinion/knowledge that ATG is toxic and can, in the worst case scenario, cause death). And yeah, I admit there was some at me, too, ha! Bruce was kind enough to send me a private email as a comfort of sorts, I think, to say that sorry that those comments were made, but when we put ourselves out there, then we become fair game for “attack.” (My paraphrase from memory of what he wrote to me years ago, but was nice of him. He wrote to me that he was old enough to have developed a thick skin and was concerned that I was okay after those comments. To which I replied something to the effect that I’ve developed somewhat of a thick skin, myself, ha ha!) So the AA forum has not always been a “peaceful” place, and maybe even now you may have noticed a comment or two from Bruce when giving his opinion on “alternative choices” where he has started out by saying, “At the risk of being attacked. . . ” LOLOL And I remember one time he even said something like he felt he was entitled to his opinion since afterall he is the one who pays the “light bill.” Ha ha ha! So true, but even so, he is careful to let people know that he is also a fellow patient. And I have continued to frequent his site because not only is he kind, his is the “only” site I know of who “embraces” alternative approaches to AA and yet also allows those who use conventional treatments to meet and discuss.

     Take care, Andrea!

     Marla

165. carl petersen said,

     February 26, 2011 at 1:17 pm

     I have broken out with petechaie and now have a severe itch. The itch is\
     mostly in the torso area. I think I have been taking in too much protein. Can too much protein cause this condition?

166. patti said,

     February 27, 2011 at 2:30 am

     It’s actually not uncommon for petichaie itself to itch. If it’s not the petichaie itching then I would look at food allergies. Things you’re eating a lot of. Protein itself won’t really cause itching unless you’re allergic to the protein you’re eating. Also, sometimes before petichaie show up (they’re getting ready to pop out) the skin will itch.

     patti

167. Administrator said,

     March 5, 2011 at 5:03 pm

     Hi Carl:

     I don’t remember my petechia ever itching. As a matter of fact, I never felt anything to know there were there (no itch, no fatigue, no pain, nothing). I only knew they were there because I could visually see them.

     As far as too much protein causing your condition, do you mean the petechia or the excessive itching or both? I’m not aware of too much protein causing petechia, but as Patti mentioned, if you have an allergy to meats it could cause the itching. There are lots of proteins–animal and vegetable, so not sure which you took a lot of. I’ve read from Pagano’s book that people with psoriasis tend to react to beef protein, but interestingly, while here in the Philippines I was told that a lot of people here with allergies react to chicken. . . Course many people are allergic to shell fish as well. But really there are a number of things that people can react to such as nightshades, food additives, and even drugs. Have you taken anything else new or exposed to anything else that might have cause your itch?

     Marla

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