On August 25, 2014, just 5 days before his 14th birthday, our son Riley was diagnosed with a brain tumor. It was soon identified as Stage IV Glioblastoma – an aggressive cancer that is rarely seen in children. Due to the size of the tumor, the doctor gave Riley 3-5 months to live.

In searching for all available treatment options, we found that there was only one course of treatment, and that there had been no research done for many years, due to a lack of funding.

Riley was well known among the nurses for his many “pranks” and love of a good joke.

Side effects of his radiation and chemo treatments slowly robbed Riley of almost all the rest of his sight, and blood clots took care of any remaining strength he had in his left side. The steroids he took as part of his treatment drastically changed his appearance to the point where the mischievous, fun-loving young man was sometimes hard to see, but he retained his sense of humor and refused to give up .

Prior to being diagnosed, Riley was slow to hit his growth spurt, and hated being called short, shorty or runt. His mother came up with her own nickname for him – calling him SPUD (Short Person Under Development). Riley still didn’t like the “short” part of that nickname, so she changed it to “Super Person Under Development.”

Over the last 15 months of Riley’s life, he endured some extremely hard challenges and faced tremendous pressures. As he and his family endured these trials, they all began to see that Riley was not a “Short Person Under Development” or even a “Super Person Under Development.” Instead, he was something much more – something beautiful, formed under extreme pressure for an extended period of time. Riley will always be known by his parents and family as “SPUD,” but that nickname has been updated to "Supremely Precious and Unique Diamond.”

Although Riley’s cancer went into remission, removal of the baseball-sized tumor and subsequent treatments had caused so much trauma to his brain that it just couldn’t keep up. In October 2015, Riley slowly slipped off into a deep slumber, and passed away peacefully on November 18, 2015 – almost 15 months after he was diagnosed.

This beautiful vivacious 5 year old was diagnosed with stage IV high-risk Neuroblastoma in July 2014. Her cancer is extremely rare: 1.4 million adults vs. 13,000 children. Of those ~700 have neuroblastoma, with less than 300 of those being high risk and even fewer having dangerous hypertension issues. Emily had all of the above.

Emily received a laminectomy (removal of small muscular support bones around the spine) and partial resection of the tumor to relieve the pressure on her spinal cord. This eliminated the need for an emergent chemotherapy but the larger mass in her chest was still there and chemo was started as soon as it was safe to do so.

Cancer MoonShot 2020 is a coalition announced in January 2016 in the United States with the goal of finding vaccine-based immunotherapies against cancer. By pooling the resources of multinational pharmaceutical, biotechnology companies, academic centers and community oncologists, it intends to create access to over 60 novel and approved agents under exploration in the war against cancer and is expected to enable rapid testing of novel immunotherapy combination protocols. The initiative is being managed by a consortium of companies called The National Immunotherapy Coalition (NIC). The NIC plans to design, initiate and complete randomized clinical trials in cancer patients with cancer at all stages of disease in up to 20 tumor types in as many as 20,000 patients by the year 2020. The project's stated goal is to aggressively focus on rapidly developing new treatments for the disease. The organization attempts to rethink how cancer is tackled, using the body's own immune system and re-training it to detect and destroy the body's cancer cells.

Find your local State Senator and Representative to tell them to support funding for Pediatric Cancer Research.