Bailey is a fiercely strong warrior who, at just five years old, was considered a 4-time survivor of Neuroblastoma. Now, at 25 years old, he is graduating from Colorado State University! His story is nothing short of miraculous! His mom shared his journey with us below:
Tell us about your warrior and their journey
My son, Bailey, was diagnosed at 9 months of age on December 29, 1999, with Stage IV Neuroblastoma, n-myc non-amplied, favorable histology. We were told not to expect him to live through the night because of the extent of his disease and if he somehow survived the night, that he would be paralyzed from the primary tumor compressing his spine and he certainly would never see his first birthday. At diagnosis he had a tumor on his left skull, a tumor behind his right eye, the primary tumor in his chest wrapped around his aorta and compressing his spine, hundreds of tumors in his liver (his liver was so large the original biopsy scar is on the left side of his abdomen), a tumor on his left shin and full bone marrow involvement. He survived that first night at UCSF and was treated at that time as intermediate risk because of his age with 8 rounds of chemo, surgery and inter-operative radiation. He was No Evidence of Disease (NED) for 7 months and relapsed. He was then treated as high risk and did another 6 rounds of chemo, bone marrow transplant and stem cell transplant, external beam radiation, followed by 6 months of Accutane. He was NED before his bmt and sct, then 10 months after completing Accutane had another surgery to remove what was determined through pathology to be a ganglioneuroma on his left lung. He then was NED for 10 more months, when a new tumor showed up behind his liver. We were told by surgeons at both UCSF (Dr. Farmer) and MSKCC (Dr. LaQuaglia) that it was inoperable and the best they could do was try to biopsy to see what it was. Our amazing surgeon at UCSF (Dr. Farmer) ended up being able to remove the ENTIRE mass on 1.16.04 and Bailey started 2 years of Accutane. The mass was 98% ganglioneuroma and 2% neuroblastoma. He completed the 2-year course of Accutane in February of 2006. So, at the age of 5, he was considered a 4-time survivor of Neuroblastoma! On February 11, 2009, Bailey had his LAST MIBG Scan – 5 years after his last surgery and 3 years since finishing treatment! He is now 18 years since his last treatment, 25 years old, and will graduate on May 11, 2024 from Colorado State University with a Bachelors Degree in Human Development and Family Sciences. He has worked closely with Coach Matt Mumme for both the Nevada football team, and now the Colorado State football team as an assistant for the past 8 years and hopes to continue working in the sports field after graduation.
How has NNCCF impacted your family’s journey?
NNCCF (KRM and Angel’s Kiss) have been a part of our family’s journey for almost all of Bailey’s years of treatment and post-treatment long term affects. We could not have made it through this journey without the never-ending support of such an amazing organization.
NNCCF will always hold a very special place in all of our hearts! Their amazing support of our local community is like no other! Northern Nevada is very fortunate to have such an amazing organization to support local families through their worst times. Then, they continue to be there as these warriors beat their battles with financial support to help them succeed in college! Not only were they there for us during the worst of times, they’ve continued to be there for Bailey throughout his college career with continued financial support via scholarship.
Donate to help a warrior like Bailey today!