My dear friends,

I wanted to start my post off with the emphasis that each person fighting this heinous disease is completely different. Jays story is not the same as anyone elses story. His battle will not be the same as everyone elses. His and Alexs decisions will not be exactly the same as anyone elses. Although treatments may be somewhat similar in many cases, the outcomes will not always be the same. Obviously, you all know this without my saying it, but there are so many on this site that have only just begun their journey and I want you all to stay encouraged, positive and hopeful despite what may or may not be going on with Jay.

Yesterday we saw his primary oncologist. I have told you all before that we have the greatest confidence in her and believe that she will uncover any and all reasonable attempts to save his life. As you know, he has relapsed since his second BMT (both relapses have occurred extremely quickly after transplant). Although the Sorafenib had originally seemed to be working, his leukemia found a way to work around it and begin generating blasts. None of Jays doctors have ever sent a patient for a third BMT, but in any event it would do no good until his marrow is cleaned out again if that is even possible. I can tell you that 2 BMTs so close together have taken a toll on his body, and a third one this close would not even be a consideration. So what to do now?

Today, his doctor is working on getting approval to use a drug called Ponatinib (another type of inhibitor) which if she can get it, she would give along with chemo to clean some of the leukemia out of his system. If that were to be successful, he would then receive a DLI (donor lymphocyte infusion), a type of mini transplant. As I understand it, this would simply boost his bone marrow and buy him time. Time unknown. He would be able to do all of this at Duke and time in the hospital would be around 6 weeks or so total assuming all went well. The Ponatinib is FDA approved for CML but not AML. This is the big factor right now as to whether we can get the drug.

We also talked about clinical trials and in particular the many trials around for Plexxikon. Its a consideration, but frankly Jay and Alex are not ready for that commitment today even if he were found to be eligible (which is being looked into). The chances of success are being weighed heavily against the fact that they would have to commit to a different city for an unknown period of time, alone and away from the support of family and friends. Its a question of quality of life left verses chance of survival. It is a heavy decision but I understand it and I understand them. Jay has spent more than half of the last year and a half in the hospital and he wants his life back with more control and on his terms. I get it and I can accept it. These two wonderful young people are a Christ centered couple. Their faith, family and friends are what are dearest to them. Although they havent decided anything for sure, they are carefully considering all. I hope you all can see that as I have been learning to let go and trying to understand that the decisions are theirs to make. As a parent, this is my most difficult challenge ever.

I felt that you all might be waiting to hear from me, so I am updating you all with as much as I know today. I will let you know as I learn more. It may be a couple of more weeks before we have a solid plan. The doctor said that it wouldnt affect things adversely at this point.

Thank you all for your continued love and support. I spend time in prayer each and every day thanking God for all of you and the blessing you have been to me. I pray for peace and healing for each of you.

Love,
Tina