Hoping for a Transplant

Oh what a difference a few weeks make. We went from dreading a bone marrow transplant to hoping we get to do one.

Jenson’s liver biopsy is tomorrow. His liver is enlarged, his albumin levels (which can be an indicator of liver disease) are crazy low, and his blood tests show abnormality related to the liver. If he has advanced liver disease called fibrosis, they won’t do the bone marrow transplant because he would die from the procedure. So now our best hope is all these abnormal tests are from LCH of the liver than isn’t advanced – never thought I’d be hoping for LCH of the liver. The results should be back on Monday.

We talked today with the bone marrow transplant team. The news is what I expected from all the reading I have been doing. They almost never do LCH bone marrow transplants, the risk is high but can lead to remission, and it turns the family’s life upside down. They use high doses of chemo one week prior to transplant, they will take Sydney’s marrow and give it to Jenson after the week of chemo, it takes on average 2-3 weeks to start taking, he will need constant platelet and blood transfusions, he is at super high risk for infection given no immune system, there are many potential complications, and you are in the hospital best case around eight weeks during this time. He will continue to be immunosuppressive for months after (6 months of several times a week visits), and you will be doing visits to follow his progress for 2 years after. You can’t even have plants or flowers in your home after you are released due to risk of fungal infections. Can you say information overload???

This is Doug’s first exposure to the information, and you can see the shell-shocked look on his face.

“Intense” sums it up, but intense is better than the alternative.

Our insurance for the pre-transplant tests just got approved, so we will be doing those soon. They said best case is about 2-3 weeks to the actual transplant which will seem like torture. We hope he makes it.

The nurse just told me Jenson now has an irregular heartbeat too – another bad twist.

On a sweet note, Jenson’s nurses Ginny and Suji call today to say hi. They are going to come visit him soon and Jenson is very excited to see his “girlfriends”.

Kristin