Happy Anniversary!

Happy One Year Anniversary! Today marks one year from when JT first entered the hospital. What a year it’s been. It is hard to determine survival rates for transplants because there are so many factors to take into account such as related versus unrelated donor, age, disease, graft versus host disease, but because we had Sydney as a sibling matched donor, from what I can tell, survival rate is approximately 70-90%. And our kids went through this process TWICE with the failed first attempt. Can you even imagine? Our family is very blessed.


One year later we are finally on the road to recovery. It’s not over yet, but we are all very happy with the progress made. JT has been cured of the PNH. He is at 98% donor cells. He continues to get stronger every day building his muscles back up as well as his endurance. His blood counts are not quite where they need to be, but the process takes a long time with the year of chemotherapy and radiation he received. They do not start immunizations until at least one year post transplant which will be in August (the beginning of the second transplant) so he will need to avoid people who have mumps, measles, chicken pox, and those sort of diseases. Do people even get those anymore?

The best anniversary news we have is a re-entry meeting at Simpson Middle School tomorrow! We are excited, and yes a bit nervous, to begin the process of re-entering school. He has been “hospital homebound” taught this year. We were fortunate enough to have two great teachers from Simpson, Mrs. Bryant and Mr. Peterson, coming to the house two days a week to keep his academics as up to date as possible with his classmates. It was ended up being a wonderful situation having them and not a county teacher because I felt like it kept JT mentally connected to the school as well hearing stories from their day. He will start back part-time until as he builds his strength up and can handle a full day and a full academic load.

Another piece of bitter sweet news we received is after a March 22nd clinic appointment, JT will be transferred back to his original Oncologist at CHOA Scottish Rite. We will terribly miss the BMT staff at Egleston as they have become like family to us this year. I think they will miss JT as well. Every clinic visit we go to he is greeted with smiles, laughter hugs and lots of joking around. They tell him all the time he’s their favorite patient! It will be fun to see our favorite triage nurse, Dora the Explorer, and Linda Ballard again at Scottish. Come to think of it, he usually had those two in stitches as well when we would leave their office. And on the bright side, the commute won’t be as long.

Thanks everyone for your continued prayers and support. Our family is indeed very blessed.

xo Sabrina