There’s a saying, “The moon moves slowly, but she crosses the sky.” I love that.

Rob often feels impatient with his healing. He’s always been able to turn out a lot of work in a day, it’s been a year, why are his counts not yet normal?

But a year in God’s time is nothing. And Rob is learning patience.

There is so much cause for hope in Samuel’s situation. The fact that you have taken responsibility for his healing is such a big step.

Blessings, Andrea

I finally got posted under the healing and God topic. Sorry it took so long.
I had to study between life’s happenings. But it was worth it. Reminded me of just how much Christ did for me when I was so unworthy of him.

Okay, hope it clarified my thoughts (or it will have confused everyone further!).

Patti

I am learning so much for you all that I don’t even know where to start. Jen, I had a chance to read some of Samuel’s updates and his story. All I can say is, “wow.” You guys have sure been through the fire. But I can see so clearly why you made the decisions that you made and how they were definately in Samuel’s best interest. For all of the trouble we’ve had finding an onc. that would just leave my MIL alone about drugs and chemo, I cannot imagine the difficulty finding a child onc. that would be that accomodating. Does Samuel have an onc. that will listen to you and your husband? I didn’t get to read every update. Just his story and the most recent updates.

What happened to that young man back east who had Hodgkins is exactly what I picture happening to a parent who chooses alternative treatments for their child. I guess my intial thought is that as soon as a diagnosis is made I’d probably try and tell the person who made the diagnosis I wanted to get a second opinion and then not do it but start treating my way. I’m sure they’d catch up with me eventually but to start that’s probably what I’d do. I also know my husband isn’t afraid to move to another state to escape the nazi’s if needed. Sorry if that term offends anyone, but I really do see the invasion in our private lives as that way.

The liver stuff gives me a whole new perspective. Even makes me worry less! That is always a good thing.

Jen, you’re not at 35 yet? I’m 36 and man do I feel different! I had my first baby at 28 and my last at 31 and whoa, what a difference. Maybe because my health isn’t where I’d like it to be, but the energy level thing is huge. The 40 thing is interesting because my naturopath says that definately at 40 all people undergo some sort of change in their bodies. For my sister, she could no longer exercise 6 days a week. She had to go to 3 days a week just to recover. She also gained weight that she’d never had trouble with before. So, there is something to the 40 thing.

Marla, my adrenal issues actually started when I was kid but I didn’t understand and see that until I was an adult. I underwent a tremendous amount of stress during all of my growing up years and when I was in college I would literally sleep 12hrs a day. My sorority sisters could never understand that. Ever tried passing classes on 12hrs of sleep a day? It seemed like through my 20’s I had a handle on the low cortisol because I was exercising like crazy. I did well until I got the pancreatitis when I was pregnant with my last and that was all she wrote. My adrenals died at that point. They had undergone all the stress they could and couldn’t take anymore. Unfortunately, it took us 4 yrs and multiple doctors to finally figure out what was wrong with me. One wanted me to have a pituitary tumor, one wanted to put me on anti-depressants and two knew I had adrenal issues. I’m adrenally insufficient. Almost to the point of Addison’s disease. Which could still happen if I don’t get this fixed naturally. I do take some supplements for the adrenals but right now my main focus is an adrenal glandular called Isocort because they’re really too bad for herbs to work well right now. Between the glandular and some herbs I do feel better but not anywhere near where I should be. And definately, the stress right now is not making my hormones any better. I like how my naturopath put it. She said at this point she feels like she’s just propping me up until this is all over. Kind of like adding water in one side and just trying to keep it all from leaking out the other.

Andrea, I use reading for my relaxing. Lots before bed. I slept last night!!!! All night. Made me wonder if it was cycle hormones creating havic this last week or two. We are in the process of getting me off of bio-identical progesterone and I wonder if that’s some of the issue. Hoping I’ll sleep just as well tonight. If I do, I’m going to assume it was cycle hormones creating the problem. I know my whole hormone system is messed up starting with the pituitary. That’s what my naturopath has been spending her time trying to work on. The whole hormonal system. I do have a partially empty sella but no one seems to think that’s an issue so, go figure.

Well, time to get the kids off to bed. Nice chatting with you ladies.

Patti

Have you pursued any relaxation tapes or methods? Our oncologists’ office offers relaxation tapes during chemo, or to take home.

When the stress got really really bad with Rob last fall, I turned to my trusty yoga book and, lo and behold, there were a series of postures for “stress.” Well i felt like I was going to go crazy so I figured that qualified. I did the postures (in the hospital room) and–wow!–it really really worked.

Here’s another remarkable thing–I know that you, too, listen for the voice of God, for guidance. I had been too wound up to hear it, and then after the postures, I could again. . . that still, small voice.

Another thing that popped into my mind concerning your sleep issues is melatonin. Seems to me that it can re-regulate the biological clock issues like you seem to have.

Well, gotta go!

Andrea

They thought this family was horrible because they did not understand why they would pull her from the oritginal treatment which had a 75% “cure” rate. Instead, they pulled her a few months into it and she relapsed, as would be expected. So relapse treatment is harder than the original protocol and she did that a few moths and stopped. Then she relapsed again and they were forced into a BMT. Basically they treated long enough to get her into a clinical remission and then stopped chemo and went to alt treatments. They bought her a few years this way before the BMT was needed. In the opinion of this group, they could have spared her a BMT and the horrible side effects from that if they had stayed on the original protocol in the first place. They were “bad parents” for not getting her cured right the first time…..at least in the opinion of this group.

HTH.

Yes, the liver is one of the organs that has been clearly observed to regenerate. (Others are skin and bone marrow). For that reason, they are able to have “live” liver donors where they take up to 60% of the donor’s liver, which eventually grows back. They also use cadavers for transplantation. One liver can be cut up to about 8 pieces. Here’s a little excerpt regarding reduced-size liver transplantation:

“Reduced-size liver transplantation puts part of a donor liver into a patient. A liver can actually be divided into eight pieces—each supplied by a different set of blood vessels. In the past, just two of these sections have been enough to save a patient suffering from liver failure, especially if it is a child. It is possible, therefore, to transplant one liver into at least two patients and to transplant part of a liver from a living donor—and for both the donor and recipients to survive. Liver tissue grows to accommodate its job provided that the organ is large enough initially. Patients have survived with only 15–20% of their original liver intact, assuming that that portion was healthy from the beginning.”
http://www.answers.com/topic/liver-transplantation-surgical-term

So, Patti, if you’re reading this, you can see a bit of what we were discussing about liver function. A person can have lots of liver damage, and still not know it “clinically.” I have found it amazing how God has given us so much. For instance, normal hgb for females start at 12, but we can go all the way down to 8, and still function pretty well. That’s 4 whole extra units of blood. Same with white cells, platelets, and really much of our bodies. I really think that many people aren’t as healthy as they “think” they are because we can still function fairly well even though our organs are not at 100%. It’s only when we cross that threshold where the body/organs can’t handle the burden that we start to actually see and feel the clinical results. Other examples are the kidneys. They have live kidney donors because you can give up one full kidney and still be able to function well. I’ve read that a person won’t really have to go the dialysis until they’ve already lost about 90% of their kidney function. The brain is similar. I read from Blaylock that it’s only when you have lost about 80% brain function that you start to “see” clinical symptoms of alzheimers or parkinson’s. Another example is one of my uncles. He had a heart test done (you know the treadmill type and all), then “two” weeks later he had a heart attack for which he underwent bypass surgery. My sister who is an RN said that it makes sense because they can’t always tell there is something wrong until it’s “already happening.” Yikes. And that is why I think we likely have lots of room for improvement.

Regarding the 7 year thing, that is interesting. The question I have though is different cultures assign different ages for level of maturity. For instance in India girls get married at 13-years-old. I think in Canada 14 year olds legally obtain the rights our 18-year-olds get. I think Jewish bar mitzvahs is when a 13-year-old boy comes of age for religious duties. Mexicans have their coming of age for girls at 15 while Americans have the sweet 16 for their girls. Filipinos do it at 18 for their girls. The numbers “seem” to be assigned culturally, and I don’t know how arbitrary that is. Biologically kids go through puberty is a range of ages, some girls starting menstruation at 10 while others don’t start until 16 or so. Then I look at the people in the Bible and see how old they were and what they were doing. . . now THAT has been an interesting topic to explore. Moses’ life seemed to be divided in 3 significant parts by 40 year sections. I’m thinking that the development of a person is greatly influenced by culture and personal environment. The metamorphosis or development of children to adults is an interesting one to explore, and also considering some people seem to age faster than others makes one wonder why that is.

Patti: There was a recent book published on cortisol. Gee, I’m gonna have to dig deep in my memory to remember what it said! Or maybe I can hunt down the name and check out a copy from the library again. Do you think you’re high or low? Those levels “definitely” affect your stress level and tolerance. Glad that you’re on top of it and know you have to work on it. If I can get a hold of that book again, I’ll let you know what his recommendations or for balancing cortisol. (Andrea, cortisol is a hormone that is released by the adrenal glands and can also involve the functioning of the pituitary gland). I’m sure all the stress you’re having with your MIL and family life is putting extra burden on you. I know you have the same adrenal book I have. I’m not sure which herbs you’re taking, but I have tried some from Herb Pharm and Gaia herbs which seemed to do well for me.

Thanks for sharing your thoughts regarding discussions with your husband and illnesses. It is good to know how other people are handling things. That way like-minded people can encourage each other and help share information.

Jen: I kinda lost why those other forum people thought they were terrible parents? What did they do? You said they gave their daughter a BMT. Those people didn’t want her to have one? That’s unusual.

I do think kids have the advantage of healing with time, however, I’m of the persuasion that we should help the healing along rather than just waiting with time. Time is a big factor, but as an example, people who have strokes can recover with physical therapy. It is fairly known that the sooner you start physical therapy after a stroke the greater your chances are of recovering. The longer you wait to do physical therapy after a stroke the more difficult it gets to overcome the damage and paralysis.

Well, I’d better get on with the day! Chat with you ladies later!

Marla

Thanks for the study on the seven year metamorphosis. That was pretty cool and something I never thought about, but makes good sense. That gives me a lot of hope for Samuel’s body to restore itself. Our Onc told me he thought that the one year mark would be the new “baseline.” So it is good to be of the opinion that we are still working toward the baseline. Even at 6 months or so off treatment, Samuel still had “abmormal cells” in his marrow. Thankfully we just decided to stop looking for them after two months in a row of seeing these cells.

Going with the seven year thing, at 28 I think I finally “felt” like an adult who could make my own decisions without advice from family. I wonder what 35 has to offer, not there yet. 42…menopause? Hmm.

Well, anyway, that was a very interesting perspective which I will definitely ponder more.

Patti,

I hope you never have to make a decision about cancer treatment for a child because in the US, you really have two choices, to treat with conventional drugs or to have CPS come and take your child and treat without your consent. I know of one family whose daughter had leukemia, went through a few months of treatment, then they walked away and did alternatives. She relapsed and they did the same thing. She relapsed again and they ended up with a bone marrow transplant. She is doing well, but does have many side effects….so I hope the seven year thing will work in her favor. But I am not sure of how they were able to get away from treatment without CPS geting involved in some way and that part of their journey is not shared on their current blog. A “support”:group for ALL kids I was on had a complete fit about what horrible parents they were to do this to her and that is how I found out about them.

It is possible to get out of conventional treatment and I do doccument every step we have gone through to get out. Not to mention having drugs dropped from protocols or skipping complete months of treatment to save my child from more forrific side effects or death. It is possible to do these things if you get an Onc with some compassion and a brain. I have found this type of Onc few and far between. I cannot tell you how many times we SAVED Samuel’s life by adamantly refusing to treat because we knew we had a problem brewing. Example, Samuel’s hydrocephalus creeped up on us. We knew something was wrong, but did not know what. Our Oncologist at that time was all set to come in and do a spinal tap with chemo and thankfully we stopped them telling them they needed to figure out why he could no longer move or talk. Once the hydrocephalus was diagnosed, that same Onc said he was so glad we were there because had he done it, it would have killed Samuel instantly and we would have never known why. On top of that, he came in and said he noticed that Samuel did not cry like he usually did…..but had we not been there at that very monent, this would have been done and he would be gone. So, even when you are forced into treatment, you have choices, you just need to be proactive and make them because if you just leave your child in their hands, they will do whatever their protocol says regardless of the how the child looks or acts. Bottom line, even if you are forced into treatment, you do have choices if you can find an Onc who will work with you and your choices. It is very difficult, but not impossible.

Best Wishes.
Jen

The interesting thing about the 7-year thing is this–at about 7 kids change from cute little kids to school-age kids, they get a new set of molars, start to read etc.

At about 14, they become teens–a whole new angle on life.

And at 21, we let them drink. Why 21? Is there an intuitive sense that yes, that’s when they’re completely remade, into adults.

I had no idea a liver would regenerate, Marla!! That’s very exciting to me. The body is so much more intelligent and able than I had thought.

Andrea

Patti, that’s really too bad about your sleep problems. As if you don’t have enough to worry about. I wish I knew more about sleep and could be of help. I don’t even know what cortisol is.

I have to agree with you about not using allopathic medicine for chronic diseases. It just doesn’t work very well.

Andrea

Life’s been a little hectic so haven’t been able to write in much. Marla, the cancer gene thing is weird. I guess when Jessica’s mom died they did gene studies on her to see what caused her cancer. Her husband being a doctor and all I guess he was okay with that. All I know is that whatever gene mutation she had, Jess had and at least one of the boys. The other two boys do not know. One killed himself over the whole thing (over his mom and sister and the poss. that he might have the gene) and the other just turned 18 and hasn’t been tested. From my understanding, the gene could cause any kind of cancer. It was an equal opportunity mutation. Have no idea where they found the gene – human genome? I just know that Jess started with adrenal cancer at 4, bone cancer at 6 and leukemia at 9. Each time they would get a cancer in “remission” for about a year and another would pop up somewhere else. After they found out she had the leukemia they fought it for awhile and she went into remission. She relapsed around the end of age 10 and they stopped treating her with platelets etc. when they weren’t lasting but 3 days or so. Also, they were told she wouldn’t live past her teens because the massive growth of puberty would cause cancers to grow all over her body. That was another reason they stopped treatment. They’d just decided she’d had enough.

SDA is Seventh Day Adventist. Sister’s hubby is strict vegetarian, sister is a closet meat eater! Hee, I like that – Standard American Diet! SAD is supposed to be Seasonal Affective Disorder. Okay, hello, I know my body and this is NOT the problem. It’s not even cold and rainy here yet. My cortisol is sooooo messed up that my body thinks day is nighttime and night is daytime. I can fall asleep around 4:00am and I’m up at 8:00am and have been going all day on that for a few weeks. I think today I finally decided that the last time my naturopath made a change to my chinese herbs I started having problems. I know she won’t agree with me so I’m just going to have to fight this out with her. I have tried not taking the herbs and it doesn’t seem to matter re: the sleep so that may only be a portion of the issue. I’m supposed to get another saliva test done and I know that will show my cortisol all over the board. I would give anything for a natural way to increase cortisol. I take an adrenal glandular to help my adrenals which you would think would fix this but my adrenals are so shot they are very close to Addisons Disease. I am that close to shutting down.

Jen, I look forward to reading about your journey with your son and understanding a little more what you’ve been through. After watching my sister, I can’t imagine…….

My husband and I had a long chat about what we’d do if either of us gets a major illness and I think he hands down has said that we will not use traditional medicine. Between what we’ve read here and what we’ve seen with mom, it would almost seer (sp?) our conscience to do any different.

Okay, better get off to bed and try and make up for too many lost hours this past week.

Patti