Thursday, March 3, 2016

The results are mostly in, and now we know. Derek has T-cell lymphoblastic lymphoma. Good news is it is not in his central nervous system, and initial testing indicates it is not in his bone marrow either. The donor graft from his stem cell transplant is doing its job as far as it can reach.  Problem is that it
can't reach the lymph system effectively. So he has lymphoma. Chances are there is not another case like Derek's in the whole country, so there aren't set treatments in use, and nobody knows exactly what will work. Because this is his second recurrence, it will be especially difficult to eradicate and even harder to keep from returning again. Today Derek had a PET scan to see exactly where the cancer is so we have a baseline. What we thought all along was a sinus infection appears now to be part of the lymphoma. Today's tests will show conclusively. Everyone thought it was just a sinus infection because his labs were always perfect (because the recurrence isn't in his bone marrow). It is all very complex and will require complex treatment. He will likely begin chemotherapy in the next day or so. (As a side note, we are not soliciting information on alternative treatments. There is NO alternative treatment that will cure what Derek has. Period. Thank you for your kind concern, though, because we know you care.)

Derek has had pain in his sinuses and neck, which is where the lymphoma seems to be centered. The pressure on his left sinuses is causing hypertropia in his left eye which is very frustrating to him because he can't focus his eyes together when looking at things more than four feet away or so. His energy level and appetite have been dropping steadily. Two nights ago, they started him on steroids to try to buy some time while we examined treatment options. Just two doses made quite a difference, and by the next morning he had enough energy to go to the playroom. Pain and swelling decreased a bit, and we were hopeful that it would help him for a while, but after just two days, the pain is returning and we know it won't hold him long. So here we go again.

Thank you as always for lifting him in your prayers. We trust our Heavenly Father to carry us through, and it is really great to know that there are so many who care.