Spring Break!

The dropping blood counts still remain a mystery! JT’s platelets held steady at 17k, but his red & white blood cells are continuing to drop. We are scheduled to go back on Friday for a bone marrow biopsy. They want a closer look at his blood, not looking for anything in particular, but rather making sure they are not missing anything.

He’ll also get a platelet transfusion and a new medication, Neulasta, to boost his counts. In the past, he has used Neupogen, but the Neulasta stays in the blood stream longer and only requires one shot. This is good because we are scheduled to go to Hilton Head for Spring Break. The Doctors were him-hawing on whether we should go, but I told them there would be anarchy in the Webster house if I had to cancel this greatly anticipated trip!

As it is, Jim was supposed to take this much needed family vacation, but was instead “ordered” back to Wisconsin full time. Hilton Head will still be fun and relaxing, but it won’t be the same without him. It’s funny how we coasted along for a month only to have this blip in the radar show up the week JT returns to school and right before we go on our first vacation in almost two years! Poor kid to have to go through all this less than 24 hours we are scheduled to leave! I plan on keeping him doped up on pain pills for the 6 hour drive on Saturday and then it will be a week of total rest and relaxation for all of us!

Thanks for checking in. Hope you are doing something fun for your Spring Break as well!

xo - Sabrina

In our world, we write with a pencil...

Clinic visit today resulted in a slight drop to JT’s white blood cells and a fairly large decrease in his platelets.  They are not sure why, but we will monitor and go back next week.  They also decided to keep JT on the Pentamidine treatments and he received one today.  My glass half full moment in all this?  We get to stay with Dr. Chiang, Liz, Patsy, Keyna, and Trish for the time being!  I love these people.  And with any luck, our buddy Creed will have his Mommy schedule March 30 for his next clinic visit!

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