So as always, loads happening at the Miller abode. Tonight Erik was able to talk to our "rock star" example of AT/RT's parents! All I can say is full on RELIEF! It is the patient out of IOWA of all places that had a resection similar to Elan's, did only radiation and then TCM plus herbs and is now 7 years cancer FREE!!!! We found them from a paper written by their doctors back when she was only 17 months out cancer free. She was 7 years old at the time, which is the better age to have AT/RT as over 3 they have 78% chance of survival vs. under 3 of around 10 to 15% (I honestly chalk this totally up to radiation or no radiation). Well 7 years later this 14 year old is 100% cancer free!
So Erik talked with them while I took care of baths - I must say I prayed the entire 45 minutes straight. They didn't even know the doctors had written about them! They even said a few major points were incorrect such as they fed her a high fat diet and the paper said low fat... makes much more sense because all the foods were high fat and I really wondered how they pulled it off as low fat :). They didn't get 100% results from the radiation and were so excited to hear about Elan's response. They said that her vitamins helped her immune system to take care of the residual (left over) tumor - what we hope to have happen with E.
Just beyond thrilling for us to be in contact with a family we have been reading and scouring about. Erik had contacted the doctors last week and we just can't get over the family's willingness to speak and share. She is a nurse and knows exactly what the type of chemo recommended does. Just kind of amazing to hear someone with our ideas had the outcome we so desperately want for Elan - all without the side effects! I just hope we find a more humane and easier way to treat this dreadful cancer!
I promise more next time! just wanted to share xo
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