Update on Julia

Dear friends and family,

I apologize for not updating you all sooner but it has been a crazy couple weeks. As some of you know on May 13th (my dad's birthday and the day Julia was diagnosed last year), Julia got to go home. The plan was to stay home until Monday and attend her healing mass, but of course that didn't happen. After only 18 hours at home Julia developed a fever and had to return to the hospital and was started on antibiotics. The strange thing was that her counts (which were almost recovered), had bottomed out again. We have spent the last 10 days waiting and waiting for count recovery. She will begin chemo tonight despite not being fully recovered and she will undergo a bone marrow biopsy tomorrow to see if we can figure out why her counts bottomed out after recovering.

On Friday was PTLD rounds, this is where all the teams; oncology, bone marrow transplant, heart transplant, and infectious disease meet to discuss each case. Julia's oncologist came to see me late Friday afternoon to advise me that in rounds the teams decided they would like our family (me, Elio, Anthony, and Emily) to get tested to see if we are a bone marrow match for Julia. Therefore on Monday the four of us will meet with the BMT team and get tested. As you can imagine this came as a complete shock since we have never discussed this in the past. The idea is that if we get into trouble in the future (another relapse) the bone marrow team will already have our information and know if any one of us is a match for Julia. Although bone marrow transplant is not the plan for us right know (and hopefully ever), it's scary just thinking about it.

Julia has just begun chemo as I write this post, I hope and pray she will stay well and we can get out of here soon. If all goes well we could be home in a few weeks.

Although I was not able to attend the healing mass I heard from multiple people that is was wonderful. People could not say enough about how beautiful it was. I want to thank St Julia's school, in particular Mrs. Lowrie, Mr. Beaudry, and Mr. Grant for all their hard work. I would also like to thank St. Patrick's church for performing a terrific service. I would also like to thank all of you who attended, it means so much to see all the support from friends, family, and even strangers. Wish we were there.

I will keep you all posted on Julia's progress this week.

Thanks again for all the support.

Nadia

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

Update on Julia

Hi Everyone,

Julia started her 4th cycle of chemo on Wednesday and it is hitting her really hard. On this cycle she receives chemo for 6 days straight 24 hours a day, and she is introduced to a new chemo drug which she has not had in the past. On Friday she spiked a 40.3 degree fever and Tylenol isn't working. She has had high fevers now for 3 days and is vomiting despite being on 2 anti nausea medications. Her counts are dropping and she may require a blood and platelet transfusion early this week. All she has done for 3 days is sleep and "grow up" as she calls it. Since her fevers are so high and we can not bring them down doctors have stared 2 antibiotics to cover her. If these fevers are chemo related they expect that she will feel like this until at least Wednesday when the chemo is done. It is so hard to see her like this and not be able to do anything to make her feel better.

Please keep her in your prayers during this tough week of chemo, and pray that she feels better soon.

Thanks
Nadia