Noah's battle started yesterday, but the road started taking shape 4 years ago. Noah was only a baby when he scratched his face with his finger nails. He bled everywhere. His entire onesie was coated in blood. I immediately took him to his pediatrician who ran labs and was concerned with leukemia based on what they showed. It took 2 years of testing and retesting to get a diagnosis of beta thalessemia and Von willebrands disease instead of leukemia. After spending time in the alaskan wild far away from doctors and then making a detour to Utah, we ended up in Mississippi. Noah has been seeing a general practitioner at his clinic and after waiting for months, the insurance finally approved for him to have his blood disorder status checked.
We visited Dr. Majumdar with UMMC hospital in May of 2014 who said Noah doesn't have VWD, but the Beta Thalassemia is still present. The diagnosis made me excited as the VWD was keeping him from being able to play sports and I had dreams of my son playing for the Green Bay Packers before he was even born. They tested him for a leukemia then as his labs were unusual and his results came back saying probably and then no and then probably and then no and then no again. The final diagnosis was no leukemia in July. At the time, Dr. Majumdar wouldn't say the big, scary word. He said he doesn't say it unless he is certain that was what was going on.
So yesterday we came back to see Dr. Majumdar. I was worried because instead of us going to his office like last time, he asked us to meet him at the Blair E. Batson Children's Cancer Center. We were taken back to do a blood smear once we arrived and a couple hours later the doctor came in and used the big, scary word he said he doesn't use. Leukemia. I didn't hear much after that. I am sure I slipped into shock. The doctor said there were still many tests to perform for complete diagnosis, but I remembered him saying he never says the word till he knows. He got confirmation from one of his colleagues and they consulted with the head of children's oncology who said Noah needed immediate admission to the oncology floor of the hospital. We have learned some the initial diagnosis. The doctors are still waiting for confirmation labs. Noah's labs never test by the book so it is harder to determine what is really going on.
The doctor's believe Noah has pre B cell acute lymphoblastic leukemia (ALL). More tests are being ran every few hours. Noah is handling them like a champ and is actually getting excited as they are allowing him to draw his own blood now. He thinks that is completely awesome. His hemoglobin tanked last night and is down to 6.2 so they have ordered a type and cross on some blood. He will begin his blood transfusion at about 10am, he is scheduled for a bone marrow biopsy at 11am followed by a spinal tap and probably his first round of chemotherapy. This is not a quick journey. His chemotherapy treatments will last anywhere from 2-3 years with his initial bout here in the hospital lasting up to 29 days.
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