Saturday, August 25, 2012

Back to NYC........

Hi Everyone, I apologize for not updating sooner as many of you have been wondering whats going on. We have finally had the opportunity to discuss biopsy results and future plans with both NY and Toronto and everyone agrees that Julia is un unchartered territories and there are no "right" or "wrong" answers. There were many opinions going back and forth and the decision lied very heavily with us (which has made things very difficult). On Thursday it was decided that we will be heading back to NY for another cycle of cell therapy and then will move directly to a maintenence schedule. Therefore we are leaving on Monday for 3 weeks of cell therapy and then Julia will return every 8 weeks for 1 infusion. We will do this for 1 year if things remain well. We have also decided to attempt lowering Julia's immunosuppression in the hopes of helping her immune system. We have reduced her meds and will watch things closely (since history has shown that Julia rejects her heart), and biopsy her in early to mid October. Julia has remained well and enjoyed her summer. Unfortunately cell therapy is starting at the same time as school so once again she will be missing a little bit of school. At this point both Elio and I are emotionally exhausted with the ups and downs and getting really tired of hospital appointments, living in fear, and the unknown. I am having a hard time going back to NY and feel really nervous this time. Its so hard to know if we are making the right decision given that she's been well. The only thing that I was sure of is if I decided not to try more treatment right now and than Julia got sick I could not live with myself knowing that she is not in remission. The weight of Julia's future lying in my hands has been overwhelming. I'm so use to doctors telling us what needs to be done (and even though not always liking it), and we do it. This time no one knows what to do and I've had to make the decisions. Thankfully we have an unbelievably supportive oncologist who is always there for us. I will keep you all posted on how treatment in NY goes but for now please pray that Julia gets through this treatment with no surprises. Thanks again for all the support. Nadia

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