Update on Julia

Hi Everyone,

Julia's fevers are gone and she is feeling much better this week. Her counts have bottomed out and are not yet recovering. She has required frequent platelet and blood transfusions the last week. Once she has count recovery she will begin her
5th and final cycle of chemo. The expected start day will be May 27th or whenever counts have fully recovered. Hopefully she will count recover a little early so she can begin chemo. The 5th cycle is identical to the 4th, so we expect that she will have fevers and feel unwell for the first week. If all goes well after the 5th cycle we will finally be ready to go home. She will have a heart biopsy and PET/CT scan 4-6weeks after finishing chemo.

Now that we are nearing the end of treatment I am getting very nervous about what will happen after treatment. Doctor's have looked into a trial in Texas which will hopefully help prevent Julia's EBV levels from rising which will help prevent the PTLD from returning. The EBV virus is found in our B cells and our T cells are what help control the B cells from proliferating and causing the cancer. Because Julia is on immunosuppression for her heart her T cells are very weak and unable to control the B cells properly. The trial in Texas (which is not available in Canada), would infuse donor T cells into Julia giving her healthy strong T cells to keep the B cells under control. The goal is to keep her EBV under control and hopefully prevent another relapse. The trial is not yet open but hopefully will be available later this year. Our oncologist has been in contact with doctors in Texas and they have agreed that Julia would qualify for this study. Since the trial is not yet recruiting our options after treatment are very limited, leaving us only able to watch and see what happens. We have decided that if Julia's EBV levels rise we will reintroduce an antibody/chemo drug (Rituximab) weekly to suppress the B cells. I know this all sounds very complicated but as you can see the real test now is what will happen once Julia is off treatment???? We remain optimistic that Julia will do well and remain in remission therefore not needing any medical intervention.

Thanks again for all your support, and I hope(if Julia is well), to see you all at the healing mass on Saturday.

Nadia