We’ve had a decent weekend up at good ol’ Amplatz Children’s Hospital. Reece’s rash is–well, it’s a rash. They haven’t done a biopsy yet, thinking yesterday that it looked better than the day before. I was hoping he only would have to use creams to clear it up, versus IV steroids. Well, today, they told us that it looks worse and he will likely have a skin biopsy tomorrow. Additionally, they will start him on IV steroids until they get the results back mid-week. I am sure it is GVHD. And, quite frankly, we knew that this would be a higher risk doing the double cord transplant. This specific type of GVHD, in fact. My thought is, if he is going to need to be on steroids, then let’s get it over with and get it started.
I felt the most encouraged I have in weeks when Terry and I had a full six hours with Reece yesterday morning and he smiled, laughed, joked, and interacted with us throughout the entire time we were with him. It was like a cool rain over a dry, scorching desert. It felt so good to talk with him and get him to smile. He even told us that he wanted to see Britta! So this morning, we packed her up and brought her over. I was a little nervous that she wouldn’t recognize him. The last time she saw him, he looked like himself. I showed her a few pictures of him from the last week and told her he didn’t have any hair. (She was scared of Terry the first time she saw him with his head shaved.) She walked into Reece’s room, walked past his bed, and smiled at him the entire time. It was adorable! Reece had a huge grin on his face, too, and he invited her to sit on his bed and get under the covers with him. She wouldn’t get under the covers, because she still has her two-year-old attention span and she wanted to get down and play after spying some of the toys. But still, Reece hasn’t wanted to see any kids, including Britta, in weeks. I felt like it was a good sign.
Reece’s blood counts are being suppressed by something–they aren’t sure if it is some of the drugs he is on, if the cord cells are battling it out, or if there is some virus that is at work. It is very frustrating and disheartening.
- Reece’s WBC count and ANC to increase and stay increased
- Reece’s skin GVHD test to come back negative
- Reece’s rash to go away
- Fevers to go away
- Peace of mind for Reece tomorrow during his skin biopsy
- Continued improvement in energy and enjoyment of regular activities
- Peace of mind and reassurance of God’s plan for Reece’s life
- Rest for all