August 17, 2017: Day +365 Post-transplant
The picture above was a year-and-a-half ago, from Anna’s 7th birthday, spent at Phoenix Children’s Hospital. Back then, her illness was still a mystery and her innocence remained intact.
Fast forward a few months…
One year and two days ago a 32-year-old man from somewhere in Europe unselfishly donated his bone marrow cells. One year and a day ago those cells made the trip across the Atlantic. One year ago today they were transplanted into Anna. We are celebrating today’s anniversary as sort of a “rebirthday.” It is part science, part miracle – and it saved Anna’s life.
That is not to say it made life easy. The process wrecks a body. The picture on the left is one year ago. The picture on the right is last night. Anna is desperate to return to the normal life of a kid. That will need to wait awhile longer.
Two things are holding Anna back right now: Neutropenia (low white blood cell counts) and Graft Versus Host Disease – where her new marrow/immune system attacks her own body. Hers manifests itself mostly in her skin, and mildly in her lungs. Because of these complications, Anna has been on heavy doses of steroids and immune-suppressive Tacrolimus. The steroids have taken their toll mentally and physically. The Tacro keeps her on heavy home restriction. Just last week her doctors decided to move on to the next option for treatment because they want Anna off the steroids to minimize their long-term side effects. She’ll begin a treatment called ECP which is quite extensive: 2-3 four-plus hour infusions a week for six months to a year. If this process better controls her GVHD, they will start weaning Anna off these drugs extremely slowly, and that means she will likely miss all of the 2017-2018 school year. Honestly, that was a huge blow for all of us. Anna has maintained such a positive attitude about being stuck at home and the hospital but it’s starting to get to her. One day she broke down crying, saying that all she wanted was to go to summer camp like other kids. The first day of school was really hard for her, but she put on a brave face and wished her sister luck as she began kindergarten.
This is all part of the very long process of bone marrow transplant. Her case is not atypical. But it’s hard nonetheless. When you think you see the light at the end of the tunnel the tunnel gets longer.
Along the way there are good days and a few great ones. Weekly routines include a visit from Anna’s dance teacher, Heidi, and her piano teacher, Mrs. Barker. Her Homebound teacher, Mrs. Kovarik, started this week so Anna is officially a third grader. Friends such as Emma, Abbie and Annemarie have been to our house for sleepovers. Seeing Anna with her buddies is perhaps the closest thing to normal.
A big thank you to my brother, Mike, and his company, Aerotek. They held a huge Be The Match drive coupled with a fundraiser for Anna. There are so many who have helped us over this year. We thank you all from the bottom of our hearts. No one has been there for us more than Anna’s grandparents. We love you – there’s no way we could do this without you. A special thank you to Jack and Nancy Mazzella, who make the two-hour trek from Prescott weekly so Melissa can work two days a week… and help with the yardwork as needed… keep us organized and tidy… and the list goes on…
One year after transplant we are allowed to request contact with the donor, as long as both parties agree. We hope he is open to connecting with us. Either way, we are grateful beyond words for what he has done for Anna.
This time last year Anna’s personal theme song was “Defying Gravity” from the musical Wicked. These days, we listen to a LOT of Hamilton. Appropriately, her theme song could now be “My Shot:” https://www.youtube.com/watch?v=VK4Wk_8PbcI
To steal an idea from Esquire magazine, here’s a little of what we’ve learned over the past year:
Bone marrow transplants are not “the easy kind of transplants”
Kids are more resilient than grown ups. Wouldn’t it be wonderful if we could hold onto that for life. Maybe you’re born with a full tank of resilience and you use it up along the way.
Isolation can simultaneously provide a child newfound levels of maturity, inner strength and wisdom… and depths of loneliness, despair and emptiness.
The highs are high. The lows are really low.
There is nothing worse than hearing your child say she’d rather die than go through this.
There is nothing more inspiring than seeing that child find happiness the very next day during a sunrise swim, when you realize she has a lot of fight left in her.
Anna is not going to give away “her shot”. Happy rebirthday, brave girl.