Days +44 to +49: Liking the Cells, But Not the Pain

First the really, really good news: Ezra's chimerism test shows that he is still 100% donor! We are so relieved and thrilled! After hearing the news, we feel the urge to share this incredible news with Ezra's donor, the person whose cells have found a new home in Ezra's body. For now, we'll just keep saving up our excitement and hugs for some day in the future when we will hopefully meet.

The tests show that Ezra does not yet have T cells, but it is too early for him to have T cells at this stage post-transplant and for the type of transplant he had. He does have B cells and NK cells now, which is exactly what is be expected. So all good on that front.

The other small piece of good news is that we are seeing small improvements in Ezra. All infection tests were negative. He is complaining less about his stomach, and his appetite has been a little better. Leg pain is now his primary complaint and he continues to be on a significant amount of pain medication. The past week brought some improvement. He has been able to play a little more and even ran up our stairs, which he hadn't been able to do the weeks before. He still spends chunks of the day in pain, but we are seeing more glimmers of himself breaking through. 

Clinic visits have still been a challenge. It is clear that Ezra is having post-transplant trauma. After all he has been through, it is no surprise that being back at the hospital is very upsetting for him. Someday we hope visits to Sloan will be only a yearly occurrence, but that day is far away right now, so we are doing the best we can to make the visits tolerable. We are also working with the child life staff to figure out how to make clinic visits less traumatic.

Ezra had a special treat this week - his beloved teacher, Mr. Pete, returned. Ezra had started home pre-school instruction this past Spring, which he loved. We saw the biggest smile spread across his face since we started this process when we said Mr. Pete was coming back. His visits are a very welcome distraction.

Now that we know those wonderful donor cells are still growing inside Ezra, we are even more determined to get him back to a place of good health and strength. Day by day.