As we've mentioned previously on our blog, the five-month mark is significant in Emmett's treatment plan. Most children who have fared well were disease free at five months. Though we've felt that Emmett has responded to treatment and has generally done well up to this point, we're starting to get nervous as we approach this big milestone. Many ATRT kids receive a full resection prior to beginning chemotherapy and radiation. Emmett didn't get a full resection, however, as only a 50% debulking was possible on the nerves in his brachial plexus. Have the chemotherapy and radiation worked their magic on the remaining tumor? We hope and pray that they have, but we won't know for sure for two months...and with each passing day we get more and more anxious.
One thing we've felt impressed to do lately is to pursue alternative therapies that will complement and increase the effectiveness of chemotherapy and radiation. Several of the ATRT families we're in touch with feel strongly that
alternative therapies were the key in helping their children survive. Emmett needs every KICK and BOOST he can get!!! There are so many alternative/complementary therapies available that researching and deciding what we believe in and will subscribe to is daunting...and our time is limited. So we thought we'd enlist of help of our blog audience to help us learn about and identify alternative treatments we should consider. As long as therapies have no potential negative side effects, we're willing to consider almost anything. We'd rather administer 10 alternative therapies even if only one has any positive effect than to do nothing and have Emmett miss out on the benefit of one therapy that might increase his chance of survival.
Micah setup a website last year that he hasn't used so we turned it into a discussion forum for Emmett's cancer treatments. The address is
www.rootcellarresource.com. Please feel free to register on the forum and contribute to the research and discussion. There may readers of our blog who've had suggestions or therapies they've wanted to share but haven't for fear of overstepping their bounds. This forum is the place to share your thoughts and comments without reservation. You don't need to be an expert-any comments or experiences would be appreciated. Even if you haven't had a personal experience with other therapies, but know someone that has, we'd love to hear about it.
As an FYI, the main therapy we've pursued so far has been diet. We have a juicer and have done a fair bit of juicing of foods that are thought to increase the body's ability to fight cancer. But there's much more we need to learn about dietary recommendations and other alternative therapies to consider.
If you have problems joining the forum please comment below or email Micah . And thanks for your help!
5 comments:
I was trying to register, and put this blog name as the answer to the confirmation question. It says that is an incorrect answer. Is there a different website?
worked for me
I really don't know a lot about this in terms of Emmett's specific type of cancer, but I did read up quite a bit a few years ago on diet in general and how it affects predisposition for cancer later in life. The book that I found most helpful and informative was The China Study (which many other dietary books cite as their main source, like Fuhrman's Disease-Proof Your Child). The main jist of the China Study findings is to cut out animal protein; he talks about how this can turn around various types of cancers, diabetes, other degenerative diseases, etc. What I liked about this book was that it was a much more scientific approach with the research to back it up included, rather than just claiming that "studies show."
I haven't had any blood work done so I don't know how my numbers now compare to a few years ago, but I have seen a real difference in how well my body stands up to competitive distance running (plus I no longer have migraines). Not that it compares in any way to what Emmett is going through, but I have seen a definite increase in my health.
I don't know much about alternative therapies, but I DO know that our Oncologists at Primary Children's wanted to know if we were doing anything alternative because "sometimes" they can interfere with the chemos. I'm sure you've okayed what you're doing with Emmett's Oncologists, but thought I'd put that word out there.
We have had 2 friends who have sought alternative therapies, one was a baby and the other is a father. I think treating kids with alternative therapy is completely different than treating adults, another thought to think about. If you want to discuss with my friend who is BIG time into alternative therapies and rooting out all things chemical I can direct you to them. They have gone as far as making their own soap, shampoo, etc. and they don't use plastic! They live in Washington DC, but used to live in Utah where their 6 month old baby had AML like Erin. They ended up NOT doing the alternative therapies they researched, but I think that was due to the cost and lots of thought and prayers. They did however NOT do a bone marrow transplant like was recommended by their Oncologist, they took a lot of their infants treatments into their own hands and he has remained in remission for about a year now.
It is interesting when infants get cancer, especially in this friends' case, because this family was VERY careful BEFORE their son was diagnosed. They were a family that believed in all things natural. No medications during pregnancy, didn't eat fast food, ate lots of fruits & veggies, didn't use harsh chemicals, only breastfed, etc. It was sort of a testament to me that our own way of living didn't cause Erin's cancer. Cancer just happens and it wasn't something we did in our home that caused it.
I'm glad you're looking at all options for Emmett. I pray that the next 2 months will go quickly and easily.
I was able to get along. Have you been able to start any of these things or are you still researching? I guess you said you did the juicing. Good luck with the radiation the next couple of days.
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