Monday, August 15
Anna completes her last dose of chemotherapy today. So far, she’s been a trooper. She’s pretty much stopped eating food – which is expected – and her medical team has increased her nutrient intake on he NJ tube. She’ll have a day of rest tomorrow and then receive her bone marrow transplant on Wednesday – which some transplant survivors refer to as their new “birthday.” Medically, it’s called “Day Zero.” The days leading up to her transplant are day -5, -4, etc. The days following transplant will be day +1, +2, +3, etc. We know her donor is a 32-year-old male from somewhere in Europe. He will go to a local hospital to undergo his procedure, probably late today or early tomorrow. Then, a special medical courier will fly directly to Phoenix with the cells and hand deliver them to PCH. Amazing, right? His marrow – her new cells – will literally save her life. I hope this young man knows how special this act of human kindness is to our family, and we hope to get the opportunity to meet him someday. He is giving a seven-year-old girl a chance to have a long, normal and happy life.
The actual transplant is somewhat anti-climactic. It’ s more like a transfusion. A bag with Anna’s new cells will be hung on a pole next to her meds and IV fluid, and infused through her central line/Broviac directly into her bloodstream. No surgery required. As explained by her doctors, bone marrow cells have built-in “homing” devices, so they find their way to her bones.
Starting Thursday, we enter the “Waiting Place,” as Dr. Seuss so eloquently put it in one of our favorite books, “Oh The Places You’ll Go.” We’ll be waiting for Anna’s new cells to start reproducing. The technical term is “engraftment.” To quote Dr. Seuss (with an edit):
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring or the snow to snow
or waiting around for a yes or no
or waiting for YOUR CELLS TO GROW
Everyone is just waiting.
We received that book when Anna was born and, to be honest, we certainly didn’t think PCH would be one of the places she’d go. But she couldn’t be in better hands. Dr. Holly Miller and her team will watch Anna’s blood counts carefully – looking at her ANC (Absolute Neutrophil Count) to creep upward, which will mean the marrow is producing new cells to rebuild her now-absent immune system. This typically happens between days +15 and +30 but Anna’s doctors have prepared us that it could possibly take her longer. Until then, and for months to follow, Anna will be at her most vulnerable for infection and Graft Versus Host Disease (GVHD), when the new marrow literally attacks her body. All of this while the cruel side effects of chemo rear their ugly head – nausea, vomiting, mouth and digestive tract sores… and hair loss.
I’m quite certain time will move slowly over the next few weeks. It’s cliché but this is a marathon, not a sprint. We take it day by day. For Anna and her supporting cast, it will be a test of mental strength and emotional ping-pong. But we’ve prepared ourselves for it, and we’re as ready for “The Waiting Place” as we can be.
Your thoughts and prayers will lift us up, a great team of doctors and nurses will ensure Anna is getting the best care possible, and Anna’s determination will, God-willing, allow her body to accept the new marrow and begin to grow a new immune system. I have no doubt she’ll prevail.
Kid, you’ll move mountains.
-Tim