Wednesday, January 22, 2014
Hi Everyone, I hope you all had a wonderful holidays. I apologize for not updating sooner and I know a lot of you are wondering what's going on.......I'm sorry. There has been a lot going on and I don't even know where to start but I will try. The last I updated I was in NY for treatment. Julia ended up getting sick in NY and required admission at Sloan Kettering. We were not able to come home as scheduled and ended up there an extra week. After discussions with our doctor here and in NY it has been recommended that we start Julia on oral chemo in an attempt to keep her in remission. The idea is to add this maintenance chemo to cell therapy. As this is not an attempt at cure but rather management we started exploring alternatives. We found a doctor in Israel who has some options for Julia in attempt to cure her for good. Unfortunately these are quite "out of the box" options. Just before the holidays we had a couple of calls with this doctor in Israel and are trying to figure out what to do. Unfortunately Sick Kids is not able/willing to do his recommended treatments here. We are waiting to hear from Sloan if they would be willing to try his treatments. If not, Elio and I have a big decision to make. The treatment in Israel is not a guarantee and comes with risk, not to mention high costs. Our oncologist has gone above and beyond to research and get feedback from the medical community. Unfortunately because this doctor in. Israel does not publish his work and this is a fee for service centre no one on our team or in our hospital will give us their blessing. This is a decision that Elio and I will need to make on our own. Our team will support whatever decision we make but can not give us any recommendations. This is making things so incredibly hard. What is the right thing to do for Julia? I look at her right now and she looks so good so how do I embark on a risky procedure that May or may not work. Especially in a place that is so far away and so foreign to me. Julia and I would need to travel to Israel for the treatment and I don't know if I'm strong enough for this. This is by far the hardest most important decision I have ever been faced with and quite frankly I have no idea what to do. I have said all along I will do anything, at any cost to save Julia, and I don't ever want to have any regrets, but this is too much right now. I don't know how we will make this decision. Unfortunately there are not many options available and our team is exploring anything and everything but we are in uncharted territory. I trust our team more than anyone.....so what do I do????? On top of everything going on. Julia had a routine heart biopsy on Dec 6th as a follow up to finishing chemo. As a shock to all of us her biopsy is showing rejection. Given the PTLD Julia's heart doctor felt like treating the rejection at this point would only make things worse. So it was decided we would watch her closely and she will repeat the biopsy on Feb 14th. Given the rejection, this makes things even more difficult deciding on the treatments in Israel. Julia will have a CT scan next week to access the situation and have a baseline before starting oral chemo. As you can imagine we are extremely nervous about this scan. At this point Elio and I are extremely stressed out, worried, and terrified to make the wrong decision. For the first time in this long journey I am so lost, so tired, so unsure. Part of me wants to close my eyes and just escape. I look at Julia so well right now and I just want to ignore the what ifs or what next and live in the moment. I am really struggling right now with the whole situation. I thank all of you for your unbelievable support and apologize for "disappearing" sometimes but I need to figure things out right now. I promise I will keep you all updated on the next steps.