Our Fight, Our Cause, Our Mission!
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.
The count down until the tournament, scheduled for October 20-23,2015 at The Rink Irvine Inline has begun. We cannot wait to drop the first puck for our 10th annual event. The planning is in full swing and we’d like you to be involved. We hope that you will join us as the “Fight For The Kids” continues. You can read all about the tournament at www.givebloodplayhockey.org and LIKE us on Facebook. Do you want to make a donation, be a sponsor, give blood, or be a volunteer? Please email us at firstname.lastname@example.org.
*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%.
Give Blood Play Hockey Tournament founder Mary Quayle and founding board member Julie Ruff were recent recipients of a coveted CHOC Children’s Charley Award as the Give Blood Play Hockey tournament was recognized as the CHOC Circle of Friends’ 2013 Volunteer Organization of the Year.
The Give Blood Play Hockey tournament was nominated for and won one of the seven awards presented at the mid-April gala, which was held at the Ritz-Carlton in Dana Point.
The Charley Award is named in honor of Charley Hester, a dedicated philanthropist who served on various boards of directors at CHOC from 1976-94.
“In February, the new wing of the hospital was dedicated and opened its doors to the first patients on the oncology floor,” Quayle said. “It was beyond our wildest dreams to see our hard work come to fruition.”