I met with one of our doctors this morning and we are moving forward with the photopheresis. He feels this is the best chance we have at getting the remaining part of Trey’s disease under control. As he said, “You can’t go on cruise control with this kind of a disease. You have to stay aggressive.” So…we are hoping the photopheresis will help take care of the rest of the abnormal cells that are in the skin. Trey is having intermittent fevers again and we have to assume it’s the abnormal cells…and we need to go after them.
Please pray that this process will work. Before we move to transplant, we need to get as much of the LGL disease under control as possible. Please ask of the Lord to help with this. If we can get the skin cleared up, we will be “all systems go” for the next transplant. We are asking God to use the photopheresis to finish off these bad cells.
We will do photopheresis today and tomorrow, and then again next Thursday and Friday. We hope to see some signs that it is working in two weeks. Please pray Trey handles it well and that there are little to no side effects. It is supposed to be a relatively easy process. They will basically take blood from Trey’s central line, put it through a machine, sort out what they need, treat those specific cells, and put them back into his body. It will take anywhere from 1.5-3 hours. It’s supposed to be a painless process for Trey…please pray it is.
Oh Lord…help us and heal Trey! We trust in You!