Our Fight, Our Cause, Our Mission!
We fight on in the battle against cancer because the war is not yet won.
Casey’s story is one of miracles, survival, faith, modern medicine and simply believing. Adrenal Cortical Carcinoma (ACC) affects only one or two people out of 1.7 million people and it is often difficult to collect enough adrenal tumors to analyze, which is why genomic research at CHOC is essential. With your support we can find new treatments for this devastating and rare form of adrenal cancer. CHOC Children’s Hospital (CHOC) has made a commitment to both basic science and clinical research in an ongoing effort to unravel the complex underpinnings of diseases that affect children. This commitment keeps CHOC at the leading edge of technology, meaning children seen at CHOC benefit from the latest in scientific thinking with access to the most up-to-date treatment options. Research laboratories at CHOC support a variety of basic science, translational, and clinical research studies. We are prepared to fight this disease and will never stop! Please let us tell you why.
On September 22nd 2009, an ultrasound indicated a mass on Casey’s left kidney. By evening Casey was admitted to CHOC’s Children’s Hospital (CHOC) for tests. This was the day that “normal” took on a very different meaning. While he rested in the hospital’s Intensive Care Unit his condition quickly became critical. His only hope of survival (given by his doctors) was to place Casey on an extracorporeal membrane oxygenation machine (ECMO), a heart and lung bypass machine that breathes for the patient. We were told that Casey would not likely survive the procedure. Casey survived!
He also survived the following open heart surgery (while still attached to ECMO) that removed the tumor pieces inside his chest. Only then did the doctors discover the enemy. Adrenal Cortical Carcinoma (ACC),* an extremely rare cancer that has little history of striking children of Casey’s age. CHOC had never before treated anyone with this type of cancer. Casey was given a 10-15% chance of survival. We later learned that no other pediatric cancer patient at CHOC had been removed from the machine and survived; this brought us to our knees. Casey’s case was groundbreaking. He survived! The grapefruit-sized tumor was then removed from Casey’s abdomen. A procedure that doctors warned us again, could be fatal; I simply asked them “have you met my son”? He survived!
During the following months Casey endured physical, respiratory and occupational therapy to help him regain his ability to breathe on his own, swallow, talk and walk. The chemotherapy treatments continued during the ensuing months. His body withered, but his spirits remained strong. All he asked was “will I be able to play hockey again” I replied “Yes honey, just not today”. During this time we met the Quayle family and Julie Ruff who embraced us with open arms. Casey soon became the ambassador and face of Give Blood Play Hockey.
Ultimately chemotherapy was over and Casey got back on the rink. All he asked was to be a normal kid, the kid without cancer. From 2010 to 2012 Casey and his buddies played in this amazing tournament and enjoyed every minute! In fact, Casey walked away with every skills competition prize his first year of participation.
Months became years, years of clinical trials and multiple surgeries. Most of the time Casey felt very good and continued to skate for both roller and ice clubs at The Rinks Irvine Inline and Anaheim Ice as a Jr. Duck. He was voted Asst. Captain by his team and received player of the month in February 2013.
Finally we ran out of options, the cancer was spreading faster than we could find options and ultimately Casey lost his battle on June 24th, 2013 with family and friends at his side.
When we were first introduced to the Translational Genomics Research Institute (TGen) by sixteen-year ACC survivor and TGen Foundation board member, Troy Richards, there were no promising options for treatment – even experimental ones. With help from Mike Bassoff, TGen’s Foundation President, we established a foundation in Casey’s honor and memory that would raise funds for much needed pediatric ACC research and treatment.
Over Casey’s four-year battle, all we could do was try clinical trials at CHOC that were approved for other cancers in the hopes that something would work. The only other option was to surgically remove recurring masses, the majority of which were performed at CHOC. After multiple surgeries the cancer traveled to his spine and lungs, ultimately taking his life. Although it’s too late for Casey, our hopes, dreams and prayers are to find a better and less invasive treatment for this monster of a disease.
ACC affects one-two per million annually, making it difficult to collect enough tumor samples to analyze for prospective therapies. TGen is a world leader in translational genomic and proteomic cancer research – the study of genetic and protein drivers of disease. Without TGen’s specialized team of scientists and clinical partners discovering new treatments through translational science and clinical trials, there would be no hope for kids and adults taken victims like Casey.
The 11th annual Give Blood Play Hockey Inline Hockey Tournament is right around the corner, October 19-22, 2017 at The Rink’s Irvine. Hundreds of supporters will be giving blood and raising money in 2017 for the Translational Genomics Research Institute (TGen) and the CHOC Foundation for Children. You can read all about the tournament at www.givebloodplayhockey.org and LIKE us on Facebook.
*Definition of Adrenal Cortical Carcinoma: A rare cancer that forms in the outer layer of tissue of the adrenal gland (a small organ on top of each kidney that makes steroid hormones, adrenaline, and noradrenalin to control heart rate, blood pressure, and other body functions). Also called Adrenal Cortical Carcinoma a cancer of the adrenal cortex. Adrenal Cortical Carcinoma is a rare tumor, with incidence of 1-2 per million population annually.Adrenal Cortical Carcinoma has a bimodal distribution by age, with cases clustering in children under 6, and in adults 30–40 years old. Adrenocortical carcinoma has often invaded nearby tissues or metastasized to distant organs at the time of diagnosis, and the overall 5-year survival rate is only 20-35%.