We got some more test results back yesterday. It’s always dangerous to give a guy like me some information and a computer with Google. Her blood tests are back and she is now 100% donor cells for neutrophils and 96% for t-cells. Of course I had to do research as to what the CD3 cell engraftment meant, and that’s why I didn’t post last night. I was emailing Drs. Wagner and Tolar at 1am asking them to correct any incorrect assumptions I was making based on my research. I read journal articles stating that high levels of CD3 cells was a potential indicator of graft versus host disease. My mistake was not taking into account the difference between percentages and actual numbers. Suffice it to say, they emailed me back early in the morning and came by today to alleviate our fears.
Some more good news is that Rafi has been without fevers for the past two days and her blood pressure is now under control. It’s amazing what an adult size dose of a beta blocker for a two year old will accomplish. The only thing left now is reducing the amount of diarrhea. She is going to the bathroom a lot, and has been for a period of time. So when researching the GVHD aspects of high CD3 engraftment at such an early date on top of the excessive stool, it started to make me wonder if Rafi has some GVHD. We’ve been told that from all indications she doesn’t have GVHD but we need to see the source of the diarrhea. It could be GVHD but it is way to early to tell. Dr. Tolar told us that he highly doubts it because the color of the stool is fine (an indicator of GVHD is color of stool) and she doesn’t seem to be in any discomfort besides the diaper rash. But just to be safe, we stopped her food and liquid intake for a day to see if the volume decreases. This has not made Rafi a happy camper. She loves her water with ice and she was hungry for a good part of the day. We also had a GI consult just in case we have to take a peak inside and do a small biopsy. That will be determined in the next day or two.
We are still waiting on the skin engraftment reports. These results will tell us what percentage of cells in the skin are from the donor. Hopefully we will have those in the next day or two, which should correspond with our discharge.
Rafi is generally in great spirits lately. She is sleeping a lot better since we added the Ambien. She is also napping during the day. These are both firsts for us and may take a little getting used to. Today was a beautiful day, low to mid 70s, so we left the hospital again and played on the swings and took a short walk up the Mississippi River and watched the college kids play some soccer and football. It was nice. I am looking forward to more time outside with the little one and Jackie.
Until tomorrow with hopefully more good news……….