Wednesday, November 23, 2011

Heartbreaking News........Off to New York for Trial

Dear Family and Friends,

It is with great sadness that I tell you that Julia has relapsed....again. On Monday doctors confirmed that the biopsy of her throat confirms that the PTLD is back. It is at a very early stage which is good. What is strange is that Julia remains EBV negative in her blood so it was a big shock to learn about the relapse. We have spent the last couple days trying to gain more information. She went into the OR for a gut and colon biopsy yesterday and today she had another PET/CT. The results for the biopsies will take a couple weeks. Today's PET/CT was very similar to the last - it uploaded in the throat although the findings in the lungs were worse than seen 4 weeks ago. We are not certain as to what this process is in the lungs - is it disease or is it infection? At this point it doesn't make much difference since we already have a positive biopsy. There have been numerous discussions taking place between us and the doctors and between the doctors here and the doctors in NY. The big question was do we go to NY? Since it is not under the circumstances that we expected to go to NY there was a go/don't go feeling. There was one strange thing from the biopsy which had doctors wondering if this was the right time. Along with the b cells (which have always been seen in the past), the pathologists also saw a number of T cells which is making everyone nervous. Unfortunately the medical world is not always sure what T cells mean when looking at cancer. Tonight Julia's oncologist confirmed that NOW is the time to go to New York. Although I think everyone is a little nervous they've decided to send us. Therefore we are leaving on Tuesday for New York and the trial (the first cell transfusion will be Wednesday). Doctors are trying to get us home tomorrow so we can spend some time as a family before going. So the plan is to try and get out of the hospital tomorrow, come back Saturday for bloodwork, and than be back Monday for the final tests prior to leaving.

I can not begin to explain how I am feeling right now. Completely overwhelmed and terrified. I only have a few days to get things organized and more importantly spend with Anthony and Emily so I can not be in touch with anyone. I will be gone for Anthony's birthday on the 11th and he will be devastated. Depending on how Julia is feeling we will try and bring the kids down to NY so we can spend Anthony's birthday together. Our lives have been a nightmare the last few years and seems we just cant catch a break. This disease is like a ticking time bomb that just keeps gaining power. I am feeling like the walls are closing in on us.

I wish I could say more but really I dont have the strength to discuss this any head is going to explode. I will update the blog from NY and hope to have nothing but good experiences to report. Thank you all for your continued support and please keep Julia in your prayers. May God give her the strength to continue fighting.



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