Friday, February 6, 2015

Update February 6, 2015

I apologize for being absent from the blog for such a long time. It has been a very crazy 8 months and so much has happened. As I lasts reported Julia began oral chemo as a maintenance in hopes of keeping her stable. The oral chemo was not great for Julia. Multiple infections, low counts, and reduced energy. We had to go on and off do to count issues and were not even at 50% of full dose. This went on till May with multiple admission. In May Julia was admitted with fevers and low counts. During that admission her EBV titres sky rocketed to 365,000. It was obvious that chemo was not going to work and we were out of options at Sick Kids so we began talks with New York. New York agreed to take Julia on and come up with a Maintenon protocol that would keep her in remission. The only catch......they wanted full control of her care and we needed to commit to 6 months of care. With no other real options and the fear that Julia would relapse within weeks Julia and I left for NY. We agreed to temporarily move to NY for treatment. Julia began weekly cell infusions immediately with a new unknown donor. At the end of June Elio, Anthony and Emily joined us. Imagine how fun it was the 5 of us in a small little room at Ronald McDonald House! The kids had a wonderful summer and we did get to spend quality time together. There were a few minor bumps for Julia and an admission but overall things seemed well. She had her forest scan here in August and it was good - no sign of disease. By the end of August it was time for the other kids to head home to begin school. It was so hard to say goodbye and I miss them so much. A few weeks ago Julia got very sick with multiple serious infections (including Pnemonia). During the admission things were getting worse instead of better and doctors were concerned. Within 3 days Julia had a PET/CT, a bone marrow biopsy and lumbar puncture, and went to the OR for a lymph node biopsy. It was such a stressful weak, it was really the first time she had been so sick here and now we were forced to do all these invasive things in a new place. Thankfully Julia started recovering and was well enough to be discharged. As we waited patiently for biopsy results we watched as Julia got better and better each day. Unfortunately Julia's biopsy is showing disease. It is unlike her other biopsies and doctors in NY are running some very specialized tests on the lymph node. The good thing is that julia is feeling well. We immediately changed donors (back to my cells) and began cell infusions again. At this point since Julia is well we will keep to this plan until all results are back. There are some options to give additional cells with different targeting agents in addition to the cells she is getting. There is also a new drug which is showing promising results but Julia must qualify for it, and even if she qualifies then we need special permission from the drug company to use it. It has now been 4 months we have been here and I am extremely home sick, tired, frustrated, worried and scared. I miss Anthony and Emily so much and constantly living around sadness is getting to me.
I really do apologize for not updating sooner but I am just trying to keep my head above water. And after 5.5 years I don't even know what to say anymore. 
Thank you for all your continued support. 

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