His strength is contagious and from Alex’s mother Kristen, we were able to learn his story.
Alex was born with a tumor on his back, which turned out to be rhabdomyosarcoma. Two things I didn’t know- I didn’t know babies could be born with cancer and I had never heard of rhabdo.
He had his first biopsy when he was 3 days old and started chemo when he was 1 month old. We did 44 weeks of chemo at the oncology office at Levine’s. During that time, in addition to the multiple overnight stays, Alex also had to have multiple blood transfusions. At the end of his 44 weeks, Alex had surgery to remove the tumor, which resulted in the removal of parts of 5 of his ribs.
Unfortunately, the surgery was not able to remove all of the cancerous cells, so Alex had an additional 6 weeks of proton therapy at the University of Florida facility in Jacksonville, FL. At the conclusion of that treatment, Alex was officially cancer-free. He is about to turn 8 and is officially a survivor.
His journey with Levine’s wasn’t over though. At 1 year old, Alex was also diagnosed with Neurofibromatosis, which is a genetic disorder that frequently causes scoliosis. In Alex’s case, his scoliosis is severe, exacerbated by the fact that he is missing part of his ribs from the removal of his tumor. Alex had a VEPTR rod put into his back when he was 4, which has to be surgically lengthened at Levine’s every six months.