Day 14 – Some Skin GVHD, But Still Feeling Good

In our never-ending saga of ups and downs, Idan has GvHD.  Thankfully, it is mild for now, but we’re keeping a close eye on it.  Last night we noticed a rash on Idan’s back and side which looks like the start of some skin GVHD. It was better this morning, but now it is red and blotchy again. The doctors say that this is common with the beginning of his counts coming back and the new donor system coming on board to see a hyper-acute form of skin GVHD. They are not concerned yet, and will follow it and if it does get back they will treat it with steroids. As the donor’s bone marrow is taking up shop in Idan’s body GVHD is to be expected and we are just hoping for a mild run with it. The good news is that this likely confirms that the counts we are seeing are in fact the donor cells and not Idan’s old immune system returning.   Overall, the transplant team is still very happy with how Idan is doing. The attending we have had for last three weeks was on his last day of rounds today, and he joked that Idan is the least interesting patient medically, but that they all keep coming around just to play with him 🙂 He said that they are going to start training us now on taking care of his central line, and giving him fluids through it and learning how to flush it with the syringes. They want to get us as ready as they can to go home, as they expect his counts to keep rising and once he is at ANC 500 for a couple of days they will transfer us to the out-patient clinic. Idan is happily taking his oral meds (usually a big hurdle for patients who have undergone chemo) and they hope to transfer most of the IV meds to oral over the next few days. What to expect: If all keeps going well they might discharge us next week. If his GVHD gets worse then it would probably mean two weeks as they would want to treat and monitor. Once we are discharged we move back to the apartment we rented and are still in mostly isolation there. We would have 2-3 days a week which we need to go to the out-patient clinic or the hospital for checkups, tests, meds, or infusions of blood, IVIG or Platelets. The point is to follow him and keep him safe and infection free as his immune system comes back slowly. Once we reach the 100 day post transplant mark they will start talking to us about going back to NYC. Still a long way away. But we are happy that he is doing well and we are excited for returning home, taking Idan to the park, and letting him crawl around without Johnny Five (his IV stand) shadowing him wherever he goes!