A Baby Brother's Gift: Clayton's Riley Story
A Baby Brother’s Gift
As we begin Pediatric Cancer Awareness Month, I am honored to share my family’s Riley story.
Our son Clayton was a toddler when he was diagnosed with acute lymphoblastic leukemia (ALL) in Fort Wayne, Ind. He was transported to Riley Hospital for further diagnostics and to begin treatment. I was 36 weeks pregnant with our second son. The doctors on the Riley hematology/oncology floor were instrumental in helping us arrange to save our new baby’s umbilical cord blood on the small chance that Clayton would ever require a stem cell transplant.
I went into labor as Clayton was being discharged from the hospital. We named our newborn son Jasper, one of the names of the three wise men bearing gifts for Jesus. We knew there was a remote chance Jasper would have to give his big brother a very big gift. Jasper’s umbilical cord blood was collected and stored without a single poke to him.
We were hit by a bus of bad news. Unfortunately, testing on Clayton’s leukemia tumor cells indicated that he had severe high-risk leukemia and would need a stem cell transplant to save his life. He began a much more rigorous chemotherapy protocol. Following hospitalization, we received miraculous news. Though siblings only have a 25 percent chance of being a stem cell match, Clayton’s only sibling, his baby brother, was a perfect match.
Just over five years ago, on August 6th, 2009, we were crossing off day zero on our wall-sized calendar in our John Deere decked out room in Riley Hospital’s pediatric stem cell unit. Day zero is the re-birthday when the chemotherapy and radiation are turned off, and new life is given in the form of fresh stem cells. Clayton, who was two-and-a-half, was hospitalized for 57 days while his baby brother’s umbilical stem cells grew into fully functioning bone marrow. His blood type changed from O+ to his brother’s blood type, A+.
Doing Our Part to Advance Cancer Care
We chose to put Clayton in a clinical trial at Riley Hospital through Children’s Oncology Group (COG). Information from these trials is shared across the nationwide network of pediatric hospitals, and this is how medical advancements are made that improve treatment of childhood cancers. Clayton had cutting-edge care in Indianapolis. Because of his rare disease, it was vital to put him in the trial. We will never get to hug those who are hit by the diagnosis that he was, but we gave back to them by putting him in this clinical trial. Clayton went through a few extra bone marrow tests at exact intervals because of his study protocol.
A Priceless Gift: One Cancer-free Year
At exactly one year out of transplant on August 6th, 2010, Clayton had testing done to fulfill his study protocol. He was happy, wild, witty, outwardly healthy with a full head of hair, and, ultimately, in full relapse.
Clayton went on to have another stem cell transplant from an anonymous donor from the national bone marrow registry. He relapsed 27 days later, and got to come home to the farm, and his family and friends to live out his last nine days on this Earth. He was eternally cured of leukemia on December 29th, 2010, at the age of four.
Ways to Help
I hope you will consider signing up to be a bone marrow donor, or donating your child’s umbilical stem cells to a public bank. The majority of stem cells in the umbilical cord are thrown in the trash.
I also hope you will do what you can to support the amazing cancer caregivers at Riley Hospital.
May you never need them, but know that an outstanding group of professionals, and people will treat your entire family on that unit. Our son and our whole family were cared for by an outstanding team of doctors, nurses, personal care assistants, physical therapists, and housekeeping staff. They laughed, cried, celebrated and wrote raps about the duster buster mop cleaning under the bed. We may or may not have tormented them with our collection of creepy plastic roaches and rubber rats. Clayton learned to ride a tricycle in the hallway, and shoot his first Nerf gun.
I can only imagine the gift it takes to love someone else’s child and entire family, knowing that the outcome could be bad. Not one of them ever hesitated to care far beyond their call of duty.
“Thank you” seems far too small for the care they gave to our child, and to us.
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