Back in 2010 Elijah was diagnosed with high risk stage 4 Neuroblastoma Cancer.
Doctors Gave Elijah 20% chance of surviving. Through Many Prayers and/or fasting, with the highest doses of Chemo therapy for 6 months, 2 weeks of Radiation centralized on his neck, Tumor removal Surgery in his Neck. 2 Bone Marrow of his own marrow inceptions. within 11 months Elijah was claimed Cancer free... We finished protocol which came with antibody therapy. Spent the last year 1/2 being cancer free...
Neuroblastoma has a mutated gene. This Gene Eventually becomes resistant to treatment. so there is a possibility of this gene resisting chemo and radiation etc. so when there are testings, sometimes this gene is in hiding. until it mutates and duplicates itsellf, and pretty quickly and agressively it will spread like wild fire, giving just a few months to be full again... I call this Gene "The Tazmanian Devil gene" (not the tech name for it) ...
Elijah's Mutated Gene Had been hidden and decided to mulitply once again. Because of Elijah being Cancer free for only a short amount of time. the more relapses that happen, the more Neuroblastoma (the gene) becomes resistant. therefore treatment becomes less likely to happen. the Gene becomes immune basically to any treatment it receives.
February 2013 - The doctor (In February of 2013) Found traces of this gene and slight tumors on Elijahs SPINE in the bone marrow of his Spine. They only had seen about 5% of the bone marrow being covered, which was slightly good news, that we are catching this before the Taz Devil spreads it's wild fire throughout his body. Thus Elijah Relapsed into High risk NB stage 4 cancer once again... This time, though, This is different.
they gave us 3 options only!
1. begin a new drug which is on study Not knowing if this drug will even work. Elijah is 1 of 12 Children on this drug under research. He will be taking this Different form of Chemo (low dose) Called Fenretinide UNHEARD OF for 99% of cancer patients. Supposidly this is Brand new cutting edge medication and will Help Elijahs Cancer die down. BUT it is not a for sure thing. This drug can be taken at home.
2. Start over and begin Chemo therapy right away. (which may not help either) because of resistant Mutated genes.
3. (THIS IS NEVER AN OPTION) Let it go, and let him die~! (some parents have chosen this option from what I was told)
As you can guess, this whole thing seems like a lost Cause!! no matter which way we go, there is nothing for sure.
The doctor kept telling me, I even asked the worst case scenerio. and Elijah has moved to a 0% -10% Surviving WITHOUT treatment. With Treatment, maybe 15%...
We Chose Option#1 And After 2 months we saw Elijahs tumors Growing worse. and the Doctors came back to us with a Bad report saying it was only a Matter of time, and they wanted to Plan to do low form of Chemo Until then. When we Chose to Have A Full scan After Hospice Came in, We found the reading of the Scans of NO EVIDENCE OF DISEASE!! WHAT??? By no mistake after looking at the evidence of visible tumor and it being gone, truly happened. So Now Elijah had moved forward into Maintainance therapy called the DMFO Study. Which Lowers a certain enzyme that is known to be at high rates in Neuroblastoma children. This enzyme helps make a tumor grow if there were cancer cells. so using the DMFO while being Cancer free causes this enzyme to regulate normally. As of September 2013 we will have Started DMFO for 2 years.
We had went through 6 cycles (6 months) of the DMFO trial, but Unfortunately The trial Failed once again.
February 2014 - During this time while on the DMFO Elijah relapsed a 2nd time and now we have to do this again! Elijah went through a NANT trial including Bevacicumab, Cyclophosphimide, and another drug. We had done 3 cycles of this trial, and then did scans. Unfortunately another FAILED trial and this did not work either, and Elijah's Tumors/cancer had gotten worse.
Devastated once again. We moved on with the Chemo therapy we had done before. Irenotecan/Temolozolomide, which damages his stomach lining and takes weeks for full recovery. We had Just finished 1 round and 10 days to finally hold foods down.
And are being scanned before we start a therapy called "MIBG THERAPY" only done at UCSF California!