Neuroblastoma is a cancer in which a solid tumor (a lump or mass caused by uncontrolled or abnormal cell growth) is formed by special nerve cells called neuroblasts. Normally, these immature cells grow and mature into functioning nerve cells. But in neuroblastoma, they become cancer cells instead. Children diagnosed with neuroblastoma are usually younger than 5 years old, with the majority of new cases occurring among those younger than 1 year old. About 700 new cases of neuroblastoma are diagnosed each year in the United States.In Alex’s case, he had a large tumor attached to his right adrenal gland. The cancer spread to several spots in bones including in the legs, hips, shoulder, and skull. It also affected nearly 100% of his bone marrow.
His treatment began right away starting with 6 rounds of chemo. In March of 2013, the famed Dr. LaQuaglia from Memorial Sloan Kettering Cancer Center was able to remove his tumor along with 8 cancerous lymph nodes. There were some complications following surgery which required our family to be split up while we needed to spend over a month in New York City. After 2 more rounds of chemo, the next step was a stem cell transplant. Alex received a lethal dose of chemo only to be saved by his own previously harvested stem cells. This part was beyond dangerous. Any minor germ could have killed him. We were very lucky he came out of this with very few unexpected side effects. After his stem cell transplant, he endured 12 rounds of radiation daily. Honestly, this was the easiest part of his whole treatment. Next was antibody therapy. This was a very painful part of treatment that no child should ever have to endure. He had 5 treatments in-patient where he would have to endure very painful infusions every day for 4 days. This was one of the worst parts of treatment. It’s so hard to watch your child suffer and there is nothing you can do but hope that all this suffering is worth it.
Luckily, Alex finished front line treatment in February, 2014. After front line treatment, Alex joined a phase 2 trial called DFMO which will hopefully keep him in “remission”. I put remission in quotation marks because with neuroblastoma it is really impossible to say that they are in remission. We can say NED (no evidence of disease) because the strongest scans that are used to detect neuroblastoma can not find any evidence. But, unfortunately, this is a very tricky disease and it likes to hide in place that scans can not pick up. All we can do is stay hopeful and take one day at a time.
Right now, Alex is doing so great. He is a typical boy who loves cars, Roblox, Lego, army gear, anything military, firefighter, and police. I could not ask for anything more. He is happy and cancer is at least not in the forefront of his mind.
Every child who has been diagnosed with childhood cancer inspires us to Rally On to find better treatments with fewer long-term side effects and, ultimately, cures. Please join us in the fight against childhood cancer by making a donation or setting up your own Rally fundraiser today.