Introducing some of our JMML Children...
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Robby was diagnosed with JMML at University Hospital in Cleveland, Ohio. Robby had a cough, diarrhea and a distended stomach for a few months prior to his developing fevers. His pediatrician sent him for blood work and I received the call to go to UH and they have already spoken to the ONCOLOGIST. I was terrified, but I was in disbelief. Robby had been very healthy. I had a normal delivery and had breast fed. WHY IS THIS HAPPENING?
Robby was offered a clinical trial AAML0122. Robby would be able to try a new drug called FTI. Our family accepted this new drug because it would allow Robby to come home rather than starting immediately on chemotherapy. I needed time to research this rare leukemia. I said at this time "I will try anything anyone suggests if it might help". On my way home I happened to go by a store called Alternative Healing. Robby started on a program of herbal medicine and vitamins when he came home. I brought the bottles in to the oncologist, but the doctors didn't know what these herbs were and did not say much about them. The naturalist did not know much about the chemo or the pend
ing bone marrow transplant so I decided to research both spectrums of healing and combine them. I had hoped to find some research about using natural medicine and undergoing a BMT, but I could find very little info. I continued to pray to God for knowledge and Robby would take his FTI and his Paw Paw Cell Reg as well as other things.
Robby had already received a mediport when he was diagnosed and had a spleenectomy in Feb 2004. Robby had radiation for 4 days and received his brother's stem cells on Febrary 17, 2004. I also gave his brother extra vitamins and herbs for a few weeks before the peripheral harvest was done. Originally the transplant was suppose to take place at St. Jude Children Hospital, but Robby's blast cell count went up to 21 after the first round of Ara-C and Flu. Our insurance company allowed us to stay in Cleveland. Robby never completely lost all his hair and he came home on March 16, 2004. He immediately started on physical therapy (water exercises) and his favorite thing to do... FISHING. His NAG tube was removed around Easter and he continued to do well despite his chimerism percentage around 95% to 98%.
Robby started Kindergarten August 25, 2004 . Robby has had problems with his sinuses and lungs, but these side-effects of the treatments are small problems that he deals with. Robby is in first grade this year. He was in a half mile running race on Labor Day 2005. At the start of the race he told his dad that he would see him at the finish line! And he did after running the whole thing!
Nancy, Robby's Mom,