Twas a good day today, twas a very good day indeed. To really get the day started in the right direction, she had a huge jump in her numbers. Her white blood count came in at 2.1 and her absolute neutrophil count came in at .9. Today was the first day that there was no capital “L” next to her ANC number. Ten days ago there was an “LL” next to the number. Excuse the expression here, but that’s “some good shit”.
Rafi was animated, friendly, and enthusiastic today. She played a little basketball with her physical therapist, she interacted with her dedicated Care Partner, she put on the blue mask and went for a ride and a walk in the hallways of 5D. She was just cracking everyone up today. She actually said to me this afternoon “put medicine in my tubies, daddy”. She calls her IV lines “tubies”. To be honest, I am not sure I have heard her string so many different words together before today. She has always been a child with a strong verbal ability. A month ago the speech/feeding therapist here told us she was at a 3 year old level, and if you know Rafi that is not a surprising revelation. However, I think after not talking for almost a month, she jumped two years. In deference to the late Corey Haim, she may now suffer from lucaplakia (sp on purpose). Does anyone out there know the reference?
Tomorrow we get to meet our 4th attending. The attendings are the physicians responsible for the day to day care of Rafaella. We see them every morning during rounds and then in the room a little while later for a discussion. We started out with Dr. Jakub Tolar, then Dr. Margi MacMillan, then Dr. Paul Orchard, and tomorrow we break in Dr. Angela Smith. Jackie and I have had some experience in hospitals and in some places there is animosity between the nursing staff and the attending physicians. Not here. We’ve become friendly enough with the nurses where they would, and do, tell us their opinions on things and on people. What I can tell the families that follow us is that, without exception so far, the physicians are great and the nurses are wonderful.
We decreased Rafi’s pain medication by 20% today. While she had to get a couple bumps (one time infusions for acute discomfort) she required significantly less than previous days. She was nauseous a couple of times and she did retch once but again, today was significantly better than previous days. Clearly we are moving in the right direction. Dr. Wagner stopped by and we are all very interested to see the results of the skin biopsies (which will happen in about two weeks) and that will tell us the level of engraftment. Engraftment is when the donor stem cells start creating new blood cells that circulate through the body. With a cord blood transplant, the average time to engraftment (3 days of over .5 ANC) is 21 – 35 days. On day +19, today, Rafi had her third day of her ANC being over .5. She generally excels at things. Anyway, the results of the skin biopsies will tell us how well the engraftment process is going. Is she producing collagen VII, the one she was previously missing? Are her new cells migrating to the skin? We will find out.
Tomorrow is going to be a good day. We will hopefully be able to leave the 5th floor and explore the tunnels below the hospital with Rafi. She loves going into the tunnels. First and foremost, she loves saying the word. The floors undulate and she loves walking up and down the hallways. She has made passing people laugh before when she says “we are going down, weeeeeee”. It would make her very happy to spend some time in her little pink beetle in the tunnels. Dr. Wagner has given us the provisional thumbs up. I am looking forward to seeing the numbers, cruising the tunnels and grinning from ear to ear.
Until tomorrow…………………