Heartbreaking News

Dear Family and Friends,

Elio and I received final pathology results today from Julia's neck and stomach biopsies and they both showed relapse of PTLD. Therefore doctors are raising the stakes with chemotherapy. She will have to do a 5 month in patient intense chemo protocol starting tomorrow. Which means the hospital will be our home for the next 5-6 months. There are 5 cycles combining multiple chemo's including injecting chemo directly into her spine. Doctors have prepared us that this protocol will be very intense and Julia will probably feel sick, and that the potential for major infections is high. She will have to be monitored very closely and could encounter some major complications. They will begin tomorrow with the first phase which they call the"reduction cycle". This is where they will introduce 4 different chemo's at low dose (including one in her spine), for one week to prepare her body for high dose chemo. After the first week she will have a PET scan and she must show 20% reduction of disease to continue to the next phase. The second phase is called the "induction stage". This includes 2 cycles of high dose chemo (multiple different chemo's). Each cycle is 21 days long, and this is the stage where she will be at the most risk since this is the stage they completely wipe out her immune system. After these 2 cycles she will be rescanned and should be disease free. If she shows no disease she will move onto the last stage which is the "consolidation phase". This consists of 2 cycles each lasting 10 days long. At this stage they will introduce the last high dose chemo drug which is a 24 hour chemo infusion for 5 days. At the end of all this we hope to be in complete remission. Since she will be so suppressed she will be taken off her anti rejection medicine while on chemo. There is a fine line between fighting this disease and making sure there is no rejection of the heart.

I know this is a lot to absorb and very confusing. I have gotten a lot of calls wanting to know what is going on so I've done my best to try and keep it as simple as possible. Obviously this is a lot to explain and I can't possibly explain it over and over to everyone.

We are all still trying to absorb the news and thinking of how we are going to mange for the next 5 months. We have a lot of planning to do in order to manage not only Julia but Anthony and Emily as well. Not to mention work, school, and everyday life. Although we have always tried to remain optimistic this last news has really hit us hard. As you can imagine there are so many emotions happening at the same time. We are sad, angry, anxious, confused, worried and most of all scared about how this will effect Julia. She will experience the full effects of chemo this time with mouth sores, infections, and total hair loss.

This has been a very difficult day and will be an even more difficult week as we begin chemo and embark on once again another battle. I am not very good at calling people and I know a lot of you just want to talk to us, so please give us a couple days to re group and think about arrangements we need to make for the next 5 months, and then feel free to call me......we need all the support we can get right now. You guys have been so loving and supportive and I want you to know that without all your support we could not get through this. I will try and keep the blog updated weekly so you can follow Julia's progress. I know I have asked a million times but please say a prayer as Julia begins a long and tough road to recovery.

P.S. There will be some princesses coming to see Julia at the hospital tomorrow so I will post some of the pictures on her blog tomorrow.

Sincerely,
Nadia

Cindrella and Belle Visit Julia and friends at Sick Kids

Hi Everyone,

On behalf of Julia and the family and friends on 8A, we would like to say a big Thank You to Marina for arranging Cinderella and Belle to come visit us at Sick Kids Hospital today. Julia and her friends had a great time with Cinderella and Belle with some dancing, story telling and colouring. Julia was very excited to see Cinderella and Belle that she waited for them in the hallway to come up the elevator, Julia was asking all morning even after she woke up from her chemo session, so when they arrived she was shy and excited to see them. We wanted to share this day with everyone with some pictures we took Enjoy!!

Mary

Quick Update

Hello Everyone,

I don't have much time or energy for a long update but I know a lot of you are waiting for news. I will begin by letting you know that clinically Julia is feeling better this week.

As some of you know Julia went into the OR last Tuesday for a lymph node biopsy (they took 3 lymph nodes in her neck out), a stomach and bowel biopsy, and a spinal tap. Unfortunately we don't have final results, but we did get preliminary results today from the lymph node they removed in her neck, and it looks like it is showing PTLD. This is however preliminary and further staining needs to be done. The gut biopsy is not reported yet. Doctors will have final results in a couple of days and come up with a plan. It looks like we will be moving to high dose chemotherapy. I don't know what chemo, how long treatment will be, or if we will need to stay in patient. It has already been 1 month we are in the hospital and the plan is to start some sort of treatment on Thursday so I suspect we will be here for awhile.

Elio and I are still trying to take in the news we got today and anxiously awaiting final pathology reports to get a clearer picture of what's going on. For now it looks like we are looking at a relapse. I will update the blog by the end of the week with final results and plan. In the meantime please pray for Julia.

Sincerely,
Nadia

Update on Julia

I wish I could report better news but unfortunately Julia is still running fevers and feeling unwell. Since this is day 5 of fevers they have started a fungal workup and put Julia on an anti-fungal medication. Julia's blood work continues to be up and down, and on Thursday she required a blood transfusion.

On a better note her heart biopsy was good and her bone marrow showed that she is producing good cells (not cancer cells), but that those cells are being destroyed somewhere and by something. The tricky part is trying to figure out where and why? Unfortunately because these tests could not rule out relapse and since she continues to have stomach issues she will under go a biopsy of her stomach and bowels. She will also have one of the lymph nodes in her neck biopsied. The surgeons spoke to us on Friday and they will try and get her to the OR on Tuesday. The combined procedures will probably be approx. 3-4 hours. Doctors are hoping that with the tissue from the lymph node and gut they will be able to declare or rule out relapse.

On another sad note we were suppose to leave on Julia's "wish trip" to Disney tomorrow morning. Obviously given what's going on we had to cancel the trip. We are very disappointed but are confident that we will be able to reschedule when Julia is better.

This has been a very difficult few weeks. With Julia feeling unwell I am extremely nervous and anxious and that makes each day feel so long. I have only gotten to see the other kids once and I am missing them like crazy. I wish I could talk to all of you but unfortunately I can barely find the energy and words to talk to doctors. I will continue to update the blog as I can and will contact all of you soon. Please continue to keep Julia in your prayers, as this is all we can ask for right now.

Sincerely,
Nadia

Quick Update

Dear family and friends,

Just wanted to let everyone know that Julia had her heart and bone marrow biopsies yesterday. She also had her PICC line put back in. Doctors felt that she really needed to have a line in for access. She was in the OR for almost 4 hours for all these procedures, and she felt really sick after the anesthetic. She spiked a 39.6 degree fever last night and was put back on antibiotics. She had a rough night last night with high heart rates and low oxygen levels......it was pretty scary. She continues to have fevers today and is quite tired. Her heart rate remains high but doctors think it's because of the fevers. Her scan on Friday did not really give us any good answers. The exact words from the docs were "it's not good but it's not bad". There were some concerning things that showed up on the scan but doctors are still not sure how to interpret the results. They are waiting for final report on the scan and the results from yesterday's tests before they re group. We do not have any results from yesterday's test but hopefully we have some answers tomorrow.

We ask that you please say a prayer for Julia during this rough ride.

Thanks
Nadia

Quick Update

Hello Everyone,

Unfortunately I write to you all from Julia's hospital room. As many of you have heard Julia was admitted on Friday from Oncology clinic. Her Oncologist came in letting us know that Julia's blood work was very worrisome. There were many markers that indicated that the PTLD may be back. Julia has been very very sick the last few days. She has tested positive for RSV, C-Diff, and a Urinary Tract Infection. She is receiving heavy duty antibiotics, and has had to start IV nutrition because she is unable to eat and barely drinking. These are 3 big infections so hopefully this is the reason she is so unwell. Doctors are trying to remain optimistic but given her history they must investigate to see if the cancer is back. She will have a PET/CT on Friday, and a heart biopsy with a bone marrow biopsy on Tuesday. They may also do a scope of her stomach and she may need to go to IGT and get her PICC line put back in. We will wait patiently for all our tests and have a departmental meeting with Oncology and Transplant next Wednesday afternoon to review results and come up with a plan.

As you can all imagine this is a complete nightmare. Especially because we are suppose to leave on Julia's "wish trip" to Disney in less than 2 weeks.

I have been getting numerous calls and I apologize for not answering or returning calls but I can not possibly talk about this with everyone, and quiet frankly I have nothing to say. I thought it would be easier to keep you all informed through the blog. I know you all have a lot of questions and your very concerned but honestly we have no answers, and we will not know anything until next week. I will try and keep everyone posted via the blog.

Thank you so much for all your support.

Nadia