Admission: T Minus 8 - "The countdown begins"
Admission day (Monday) is regarded as day -8. The days are numbered based on pre and post transplant, with transplant day as "0" day. So the 8 days preceding the transplant are referred to the "Conditioning" phase. In this phase chemotherapy and total body radiation are administered in an effort to kill all of Averys bone marrow. Thus, Avery's actual BMT is on Tuesday.
Monday: "I look fabs"
Early Monday morning begins with an emotional goodbye to Avery's "brother" Chopper. Sending him off to Grandma and Papa Bobs house. As for the admission, procedures, and infusions, Monday was quite unremarkable. But that is simply another indication as to the polar shift of what is "normal" to us. That in itself makes my head shake. Avery had surgery in the afternoon to place her Hickman Line. This is a surgically implanted catheter used to easily administer infusions and to take blood to monitor Avery. Aside from slight bruising she was in no discomfort. Another testament as to how far medical procedures have come. Just before that we were introduced to our room. Avery quickly adapted and began writing on the erasable board. I look her picture, and she asked to see it. Nonchalantly she approved by saying "oh ya, I look Fabs!" For me a moment of "huh?" Am I really talking to my 6 year old daughter? Loved it! A family dinner, Chemo early evening, and off to bed.
Tuesday: "It gets real"
The day started out with the Med Team getting to know the Rasmussen's. The Team entered our room just as Avery was in full song. "Let it go" from Frozen while dancing. I extended an offer to one of the most highly regarded Medical Teams in the U.S. to "feel free to join in". They were bashful (see the video). https://www.youtube.com/watch?v=wAC56rcuKpA Its a wonderful thing that we as a family can set the tone for the medical professionals, not the other way around. But of course this is easy to do with both Children's Hospitals. This is huge for Avery. We are all on the same playing field. Starting her second chemotherapy drug Cytoxan Avery develops nausea and we have a pretty bad episode. This is where things get real. This is the kind of thing that hurts a parent in a way that just stabs you right in the heart. It hurts to see her sick to be sure, but much worse than that Avery gets very distressed and apologetic for causing a mess. She is anxious and disappointed for causing a problem. To hear and see her distressed and apologetic makes me want to break down and cry. Traumatic for her, traumatic for us. Comforting her, and reassuring her is difficult because she is emotional. Obviously we stressed that this is not something she needs to feel bad over. But emotions are difficult to comfort for kids, for adults.
Wednesday: "Settling in"
By Wednesday we feel like we have our routine refined. Scheduled potty every two hours as to not allow the chemo to sit in her bladder. Treatment wise its an exact repeat of Tuesday, with a better grip on the nausea. A friend is eagerly welcomed by Avery and is a wonderful distraction and good time for a couple of hours. Part of our routine has been to maintain routine. For example. we as we do every day, we eat all of our meals together.
Thursday: "A Day Off"
Today - no chemo. Today is a rest day. A day off from the scheduled protocol to allow Avery to rest in preparation for Total Body Radiation which will be twice a day for 5 days. The spectrum of how she will react and feel to this is wide. Some patients do well, others not so much. But as always we will address things as they unfold.
The Parents:
How are we doing? I dare say quite well so far. If you watch Avery's video where we invite the Drs. to join in with singing and dancing you will understand why we are doing "so well". We go as the way the kid goes. Additionally we made the difficult decision to trade off sleeping overnight at home. Each of us experienced the stutter and awkwardness of leaving to go home on our respective nights. But we have quickly learned that it's essential to get out of this environment to recharge. Caring for Avery is literally a 24 hour job, and has been since January. And, despite the fact that its early in this phase, we are all too experienced living in hospitals, and this tactic has proven itself big time. The time tested adage of diet, rest, exercise holds true. And given what lies ahead, critical for us.