Many of you know that we have made the decision to travel to UCSF in San Francisco for Reese’s bone marrow transplant. The doctors we are working with: Mignon Loh, Elliot Stieglitz, and Chris Dvorak lead the field in cutting edge research on Reese’s rare leukemia, JMML. We feel blessed to have found our way to this team who will save Reese’s life. Months ago our oncologist at Lurie, Nobuko Hijiya, made the connection and the introduction. The world of pediatric leukemia is small and collaborative, and we are so thankful.
Reese will enter the hospital at UCSF in early April. We are hoping to return home in August, but the exact date will be determined based on her recovery. UCSF has identified multiple unrelated 12/12 donors and are making a decision next week based on additional testing of those donors. We are so blessed to have options, allowing Chris Dvorak and team (our transplant doctor) the ability to be choosy. We are getting a crash course in HLA and KIR.
Reese will be in the hospital for 4-6 weeks (again, depending) and then we will move to the Family House right on UCSF campus. The Family House serves as a home away from home for families of children with cancer and other life-threatening illnesses. It is the right place for Reese during this fragile time as she recovers from her bone marrow transplant.
Sometimes at night I try to make sense of this. I am struggling and I get really really mad. WHY. I try to channel my anger into something productive. I believe that god has a plan. I believe that the research being done with my identical twins will help make breakthroughs in this disease, that we can help others. Maybe other children won’t have to suffer like this? That is what I tell myself. Reese was already a strong-willed fighter. How will this “help” her? She will be stronger? She will move mountains and bring that fight to every obstacle in her life? But I already knew that she would do great things, and so will her sisters. They have incredible faith and love, their souls are beautiful. My whole family is affected by this every day, all of us are fighting our own battle. Why? God has a plan. He must so I have faith that if I try my hardest, using every gift god gave me, I am helping this plan.
Photo: The girls in January