We are still so very thankful that the flow cytometry revealed no increase of the abnormal cells this week…that, however, does not mean we are finished with this battle. Trey still has a long way to go.
We are currently attempting to do what we have done all along, which is get the abnormal cells in the blood under control, along with the getting the abnormal cells in Trey’s skin toned down too. As you have heard me say, this has been very difficult. You often feel like you are “robbing Peter to pay Paul” in this situation. One drug works for one thing, but hurts another and vice versa. It truly is a very frustrating situation at times.
We cannot go to transplant with the abnormal cells being as numerous as they are. Even though they are only at 20%, subjecting Trey to a rigorous chemotherapy regimen would only give these abnormal cells more room to cause major problems. So…we must get them under control. This means we are forced to make decisions about drugs, others treatments, radiation, etc…and with each choice comes various consequences.
Please pray for significant wisdom for us and our doctors. At this point, Emily and I are not wanting to give Trey Campath just yet…we feel it is hard on his body, negatively affects his skin, and also kills the good t-cells in his body. It does target the abnormal cells and handles them quite well, but it affects other positive things as well. Also, the romidepsin Trey has been getting seems to help, but hurts as well. He has been extremely nauseated since beginning that drug. It is hard for him to keep any food down. We are trying to use various anti-nausea meds to help, but he is still struggling. Please pray this resolves itself. We’d like to continue the romidepsin, but don’t want Trey feeling so poorly.
We are also trying to decide about the photopheresis. This treatment seems to be helping his skin, but it causes Trey’s skin to be dry and peel significantly. It has also causes some areas to get so irritated that sores have opened up that have gotten infected. So, again…there is good, but also bad with that.
As you can see…we just need wisdom and your prayers would be greatly appreciated. We are targeting the beginning of August for the next transplant now…as long as we can get the abnormal cells under control. I, of course, am praying for the miraculous and still believe that Trey’s body can heal itself. I’m praying than the good cells he does have will control the bad cells that remain. I’m hoping that with the removal of the spleen, the good cells he received during his transplant in December will just miraculously rise up and do what no medicine can. Would this shock our doctors? YES!!! Would I love to see them shocked? YES!!!
Please keep praying for Trey! We got a major victory this week and we just need a few more so we can get our son home. We totally trust the Lord though, and whatever happens, we know is His perfect plan for Trey.
Thanks for praying so hard with and for us. We love you.