Days +74 to +82: It's Always Something

Just as Ezra has been starting to do better and his pain lessening, another issue has cropped up. On Sunday morning, Ezra woke up with a rash on his back and stomach. Any type of rash post-transplant is cause for concern. We headed over to Sloan on Monday to get the rash checked. It doesn't look like anything in particular, so the conclusion is that it could be anything. The rash could be a virus, graft versus host disease, a reaction to medication, an irritation, or a food allergy. The tests for common viruses that can cause rashes have come back negative. We are very concerned about the rash being graft versus host disease ("GVHD"). The good news is that the rash is mild and not itchy. However, the doctors think it may be necessary to do a skin biopsy. We are praying that it starts to clear up so that we can avoid the biopsy. The thought of Ezra going through more pain and trauma is devastating. We are applying a steroidal cream and will wait and see what happens. 

On the cell front, we got back one of the chimerism tests and he is 99.8% donor! There is no concern about the .2% - the test has an error rate of 2%. So this is considered to still be 100% donor. This month another higher level chimerism test was sent, which will look at the different cell lines, rather than whole blood. Now that he has B cells and NK cells, they can look at the specific types of cells to see if they are donor or Ezra. Those results are not yet back. 

The other exciting news around here is that Ezra graduated to a "big, big boy bed," as he calls it. He is super proud of his new bed, which is covered in space bedding (of course), although he isn't excited enough to actually make it through the night in his new bed. 

We continue on the roller coaster ride of transplant. A journey of ups and downs with the hope that ultimately in the end Ezra will finish up. The rash is yet another reminder that we never know what tomorrow will bring and to just focus on on the present. We remain thankful for how far Ezra has come, and remind ourselves how quickly everything can change.