What a day, Day 0! We began early with a FaceTime of Reese’s ceremony at Sacred Heart. It was very special and Reese got to chat with her preschool classmates as it wrapped up. My heart ached for Quinn and Claire, seeing them there at the church without me. I miss them more than words can say.
Then, after a delay, the transplant started!! A bone marrow transplant is supposed to be non-eventful. This was not the case for Reese’s BMT…and while I was having heart palpitations thoughout, her medical team was completely confident that all was well for her. There were viscous filter and pump problems that created drama throughout, it lasted much longer than planned, and some of Reese’s new cells were hand pumped into her. This stuff is not for the faint of heart!! However… the delays and mechanical problems worked together to have her BMT end just after 4pm.
I was sitting with her, holding her hand, watching a rainbow creep across the floor, up her bed, and right across her curved little body as the last cells entered her body. I felt God, I think I laughed out loud with pure joy. God is good and god was with us. And he sent us the most beautiful, perfect sign that we are never alone. The rainbow. Our miracle.
Reese was exhausted, this day was hard on her. Her little body was inflamed causing a fever and extreme exhaustion. But, her day wasn’t over yet. Her feeding tube went in at 5:30. This is a big deal.. the actual procedure that has given me the most anxiety since we heard about it. It can be very traumatic (I’ve had it described, twice, as one of the worst moments for the patient in the whole ordeal.) Well, this was not the case for Reese, thank goodness she was spared this one. She let us know she was displeased, as she should, but she did exactly as the doctors asked, and it was over in 60 seconds. I will spare you any details besides to say, it was ok, and my little girl had food in her tummy for the first time in five days. It will remain for a few weeks, until she can eat again.
Now we start the second phase of the BMT journey… the + days. We know a little bit about what to expect. She will lose her hair this weekend. She will get mucositis that starts Day +2ish and peaks around day +7 and ends around day +14-17. This is severely painful, many kids end up on a continuous pain pump, morphine or one of it’s friends. From what I understand, it will be sores that are severe and bleed… from the mouth, throat, intestines, the whole gut. We know Reese will have this, and there is a spectrum. We pray she is on the low intensity end.
These hurdles we will leap over together. The most important thing is Reese is on the + end now and this little girl has a lot of fight in her! One day at a time, one victory to celebrate at a time. Grow cells, grow!!
Pictured: Reese’s Rainbow