Wilson Braun was the happiest and seemingly healthiest little boy we had ever seen. One day, around Halloween of 2009, about 3 months before his 2nd birthday, we noticed his appetite fading and his energy level less than what it normally was. A couple of weeks later, we were concerned enough to take him to see his pediatrician on a weekly basis, who just told us he had strep throat or maybe a bad cold. He was sent to the ER for dehydration, but nothing was found. He lost several pounds and his skin started to become paler by the day - it was obvious to us something was seriously wrong, but no medical professionals seemed to think it was a big deal. Finally, his belly hardened and that's when it was discovered he had a tumor in his abdomen larger than a grapefruit, pushing on his stomach, kidneys, lungs, etc. The first few weeks in the PICU at MCV around Christmas 2009 were the scariest - we weren't sure he would make it - his lungs were filled with fluid and he was sedated on a breathing tube for a long time. We found out he had Stage 3 high risk Neuroblastoma with amplified n-myc. After biopsies, bone scans, bone marrow aspirates, CT's, and MIBG scans were done, it was determined he did not have any metasteses, which was a huge relief, but we didn't know what we were really in for with the treatment.
Since then, he has had 6 rounds of high dose chemotherapy, surgery to remove his tumor and left kidney at Memorial Sloan Kettering Cancer Center in Manhattan, 2 stem cell rescues, 12 days of radiation, and he is currently about halfway through with a 6 month clinical trial - ch14.18 antibodies with GM-CSF, IL-2, and 13-cis reinoic acid - this is a preventative treatment to keep him from having a relapse. He has had 4 Hickman lines placed, about to get a PICC line, a G-tube placed around March 2010 (still in use for medicine and nightly feeds), 3 chest tubes, blood borne bacterial infections, e coli, pneumonia, super high blood pressure, super low blood pressure, fevers of 106F+, rigors, and all sorts of other side effects and complications. And yet with all that he keeps on trucking and is a happy little boy when not being poked an prodded by nurses and doctors.
We are fortunate to be able to take advantage of all the advances in medicine/cancer research, partly a result of organizations like St. Baldrick's Foundation. His cancer is now in remission and with new treatments available, it will hopefully stay that way forever. For updates on his condition, please visit www.caringbridge.org/visit/wilson