Bubbles for Brody

Two days after Jake celebrated his first birthday of his new immune system, Brody Stephens died. My heart has been heavy, and I feel like someone is sitting on my chest. I have gone on with everyday life, but I think about Brody a lot. At any given time when Jake was hospitalized the past three years, I could have taken the tunnels or walkways over to Riley Children’s hospital and met him. When we learned Jake was going to be hospitalized for so long for the transplant, I immediately asked if he could go to Riley. I was thinking about myself. We had been in Riley before, and I knew the rooms would be much more comfortable for Dave and me.  The doctor looked at me sideways and then grinned. He immediately took Jake, who was using a Hoverboard because it was cooler than a wheelchair to get around, and me to the 5th floor BMT unit to show us around. The old wing of the hospital had been updated, and it was nicer than the rest of IU Health, but it wasn’t as nice as Riley. What I didn’t realize at the time was the sadness that we would have been surrounded by everyday. Jake was a baby at IU, but at Riley, we would have been surrounded by children who were dying. Everyday. On the Be the Match FB page, I came to “know” and love Brody. He was diagnosed with AML leukemia as a toddler. A few months before his 5 year anniversary of kicking cancer’s butt, (the magic milestone to officially say you have beaten and survived cancer), the leukemia returned with a vengeance. Brody would have to have a stem cell transplant. Most people have to have the cancer return before the transplant is considered. “The benefits of the transplant do not outweigh the risks”. Jake was unique. His immune system was flawed, and technology and advances had allowed them to know that by 2012, and they knew Jake had no other chance.  But had Jake been diagnosed with AML as a kid, it would have been a different story, and like Brody, the cancer would have returned. There were 5 potential biological matches in Brody’s immediate family. He had 3 older brothers and his parents. No one matched. I am not sure if they couldn’t find a match for Brody because he was given stem cells from cord blood. In today’s medicine, that is the 3rd choice. Biological, non-relative donor then cord blood. Prior to Brody getting to this point though, there were many complications. He had become septic twice, and a part of his intestines had been removed. When Brody was diagnosed the second time, they could not get him into remission. After Jake’s chemotherapy in December of 2015, it never occurred to me that he might have to have more rounds of chemo. Brody had 5 rounds of brutal chemo. Several times, the chemo was given for an entire month. This required hospitalization. During these hospitalizations, Brody would meet new little friends, and he would see some of these friends earn their Angel wings. It had to be heartbreaking. The day he rang the bell and got to go home after chemo, he also lost his dear little friend. I was irked to spend a week in the hospital this last time, but it wasn’t uncommon for Brody to be hospitalized for a hundred days in a row. They never reached complete remission, but they decided to go ahead with his stem cell transplant. Brody had engraftment, but his case was very complicated because technically the leukemia cells were still present.  He was so sick with complications from the chemo and transplant including graft vs. host disease, SOS (a condition where the small blood vessels in his liver were blocked), and his right lung collapsed from fluid build up.  He kept vomiting, and had trouble gaining his strength back. They reached out to other hospitals for advice. Brody was approved for a trial therapy which included receiving t-cells. It was not FDA approved yet, but it was his best chance for his body to be able to fight. He spent many days in the ICU and had surgeries to try to determine the cause of and correct  some of his complications. He was fighting several viruses. The BK virus affects the bladder, and is pretty common after chemo. Jake was irritated by the virus. Brody had to have stints put into his kidneys and go on dialysis because of it. On the rare occasions he was allowed to go home, Brody’s love was basketball. He dribbled in the hospital to stay up on his game. He became friends with many of his basketball heroes. He was visited by several. In March he traveled to Oakland to meet the coach and players of his favorite team. He was a fighter. He had tremendous courage and the will to grow up with his brothers and play basketball. He fought leukemia twice, and he was proud to say he beat it. His new, very fragile, not perfect immune system could not beat the viruses that plagued him from the very beginning. Everybody who knew Brody loved him. He had millions of prayer warriors, but maybe this was God’s plan all along. It’s hard to accept that our prayers were answered, but their’s seemingly were not. The science part of my brain wonders if there had been a gene mutation in Brody’s fetal development like Jake’s that made this inevitable. Would things have been different if one of his brothers had been a perfect match? It doesn’t matter. All that matters now is his family picking up the pieces and moving forward without Brody. Rest in peace Brody Stephens ( December 19, 2008- April 29, 2017) age 8…

Leave a Reply

Your email address will not be published. Required fields are marked *