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William was an incredibly funny, exuberant, smart, kind, loving and, of course, handsome 7-year-old boy. He loved all super heroes, especially Batman. He also enjoyed Star Wars. He was an avid Lego master builder, which translated over to Lego versions of Batman and Star Wars and he would play Xbox versions of those games. William was the youngest of three and that seemed to push him to keep up with his older brother and sister. He was happiest when his family was together. He loved to learn, read books and had a real aptitude for math. He spoke of becoming a paleontologist.
He was an incredibly sweet and generous boy who really loved his life. But cancer and the treatment robbed him of all of it.
At the end of kindergarten in June 2015, he had what seemed to be a lingering stomach virus. He had been to the doctor and the school nurse and everyone seemed to think that's what he had. But right before a family road trip to Washington, D.C. William threw up again. The entire trip from New York to D.C., he vomited every time they stopped. By the time they got to the hotel, he was very ill. They left the next morning and drove to the hospital in New York. They thought he was just dehydrated, but his pulse was very low. After fluids, tests that were inconclusive and the vomiting stopped, they went home. The next day it started again. He went back to the ER. He was admitted after many tests. The last test was an MRI, which showed a mass in the posterior fossa. That night he was taken by ambulance to Cohen Children's Medical Center. The next morning, he had a six-hour surgery. The wonderful neurosurgeon was able to remove the entire tumor and William suffered very little side effects from this brain surgery. He had medulloblastoma, subgroup 4 standard risk.
William had surgery, radiation and chemotherapy from July 8, 2015 to May 2016. As summer progressed, William became more and more ill. Two months later, he had his three-month MRI where it was discovered that he had relapsed. But it was 100 times worse. The tumor in the posterior fossa had metastasized. They started chemo two days later, where he almost died from pressure on his brain. He had emergency shunt surgery. He had to recover from that and chemo at the same time. Then he had an Ommaya Reservoir put in. After a few months of chemo, both systemically (five rounds) and through the Ommaya Reservoir for bridging therapy (chemo every week) he got to minimal disease.
At the end of November, he got a fever and pneumonia and spent almost three weeks in hospital. He got to be home for just a week and two days but then he had to go back to have high dose chemo with stem cell rescue. Of course, this happened at Christmas. But doctors assured his parents they could work out a visit with the kids. This was going to be his Christmas gift: remission. Instead, something went terribly wrong. In the end, his body could not process the chemo and after suffering terribly for three weeks, he died from complications.
William’s family was hoping for remission or very minimal disease so they could then go to Memorial Sloan Kettering for a trial. They were hoping for a cure for relapsed medulloblastoma. Now, they hope that they can help other children not suffer his fate. They hope to honor William and his courageous battle by helping to raise awareness and money. That’s what Alex's Lemonade Stand Foundation means to them. William’s mother, Margaret says, “It may be too late for my son, but I know that the research being funded through ALSF will get us to a cure.”
William was the bravest most determined person his mother has ever known – at only 7! While cancer and treatments strip certain things away, he would rise above his illness and not let it defeat him. But the relapse and the subsequent treatments were harder on him. Still, William would have none of it, as soon as he could he wanted to play, dance, learn and love as he always had. He was always looking out for his siblings and friends he had made at the hospital. This 7-year-old taught his parents so much. He taught them about courage, determination and what it really means to love. He fought harder and longer than many adults could have.
Margaret wants others, who may have recently received a cancer diagnosis, to know 1) Live every moment the best way you can. Don't wait. There are no guarantees on this journey. 2) Learn everything you can about your options for treatment. There are new treatments being developed and hopefully you can lessen the amount of poison your child will be subjected to.
“Just put one foot in front of the other.” - William
Information provided by Margaret Schultz, William’s mother
Updated March 2017
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