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
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