Neuroblastoma is a solid tumor cancer of the sympathetic nervous system. It is the most common form of cancer in infants with over twice the incidence rate of leukemia. The average age at diagnosis is two years old. In 70% of these cases, the children are already at Stage IV high risk with a metastasis throughout the body.
The survival rate is about 30%.
Christopher Gibney was misdiagnosed 13 times by primary pediatricians, urgent care and emergency room physicians between October 7th, 2005 and January 8th, 2007.
Christopher was finally diagnosed with stage IV neuroblastoma on January 14th, 2007 at Kaiser/Sunset Los Angeles Medical Center. Christopher completed one cycle of chemotherapy at Kaiser/Sunset and then four more cycles at Kaiser/Zion San Diego Medical Center over the next four months. In May, stem cells were collected from Christopher at City of Hope in Duarte, California for a later, possible stem cell rescue after high dose chemotherapy or MIBG Radiation Therapy.
On June 6th, his primary, thoracic tumor was removed at Kaiser/Sunset and found to have matured to a ganglia neuroma (benign) form. There was No Evidence of (active) Disease (NED) and he went into a consolidation program of Cis Retinoic Acid (high-dose vitamin A) during July.
On August 21st, CT Scan found a relapse tumor in Christopher’s left temporal lobe which was removed the next day. We began a new treatment protocol based on 8H9 antibody research at Memorial Sloan-Ketterling in New York. Christopher underwent seventeen days of Radiation Therapy in October at Kaiser Radiation Oncology in Los Angeles.
In November, MIBG nuclear medicine scan and bone marrow samples
indicated a further relapse and progression of the neuroblastoma. We traveled to the University of California, San Francisco to prepare for MIBG Radiation Therapy which would be accessible in February, 2008. Prior Radiation Therapy in Los Angeles required a three month recuperation period for Christopher. We returned to Kaiser/Zion for additional chemotherapy with hope, still, for a remission and cure. On December 13th, CT Scan confirmed that further treatment would be futile. On December 14th, our Little Rainbow Dragon walked out of Kaiser/Zion and we went home to San Clemente for Hospice Care.
Christopher passed away peacefully, at home, in our arms on December 19th, 2007 at 4:45 A.M.
During 2008, we released Parent’s Medical Report on Neuroblastoma which advocates for the mass screening of neuroblastoma in the United States via VMA HVA urine catecholamine test which can indicate the presence of neuroblastoma. The feedback we received cited studies that indicated that earlier diagnosis through mass screening did not affect the mortality rates in subject populations. This points to a predicament in integrating anecdotal evidence from individual cases with evidence based studies in implementing tactical treatment protocols, educating primary pediatrician’s and strengthening our public awareness of neuroblastoma and screening capabilities.
The controversy regarding raising the age from 40 to 50 for mammogram screenings for breast cancer is a similar predicament. Raising the recommended age for mammograms may result in death for some women who might otherwise have survived had they accessed a screening earlier. Indeed, we still believe that if Christopher had accessed a neuroblastoma screening (VMA HVA or otherwise) on October 7th, 2005 his younger age would have put him in a group with a higher survival rate and he may have survived.
We have had our daughter, Bridget, undergo a VMA HVA urine catecholamine test as well as other oncology evaluations.
During 2009, we became the first Kaiser Permanente patients through Children’s Hospital of Philadelphia to access DNA analyses related to neuroblastoma predisposition. Fortunately, we discovered that we do not have the suspected familial variations in the ALK and PHOX2B genes. Rather it is thought that Christopher had sporadic neuroblastoma although this test is not 100% conclusive. We accomplished this by having stem cells that were harvested from Christopher for a stem cell rescue shipped from City of Hope to Children’s Hospital of Philadelphia to the research labs of Dr. John Maris et al. Most primary pediatricians are unaware of these tests and it is not currently part of any statewide or national testing protocol. We recommend these tests to any family who feels they may be vulnerable to neuroblastoma. We also recommend that parents store the cord blood at birth. We store Bridget’s cord blood with Cord Blood Registry (www.cordblood.com)
In July of 2009, we traveled to the Children’s Neuroblastoma Conference for Caregivers and Families in Chicago (www.nbhope.org). We met with other angel parents to share our grief as well as the knowledge of our experience with the families who continue their battle against this devastating disease. We attended presentations by the National Cancer Institute and have also arranged for long term storage of Christopher’s DNA at Texas Tech University Cancer Center research laboratories in order to access future testing that has yet to be developed.
