Thursday, November 29, 2012

Long Overdue Update

Dear Family and Friends I deeply apologize for not updating the blog sooner but the last few months have been very crazy. We returned from our final infusion in NY on September 11th and Julia was admitted to Sick Kids on September 12th for fevers. She has spent most of her time in hospital up to 10 days ago. She was in hospital most of September and October with unexplained fevers and once on antibiotics the fever would go away. Once we would discontinue antibiotics the fever would come back. Until the end of October when things got very bad very quickly. She had high fevers, severe headaches, and vomiting. As they increased and changed to stronger antibiotics Julia just got sicker. Finally she went to the OR for a bone marrow biopsy and lumbar puncture. A couple hours later doctors showed up at our door with the results......Julia's bone marrow and spinal fluid (central nervous system) was full of the EBV virus. She had EBV induced meningitis. She immediatly started cytotoxic drugs that day to control the infection which was now in her brain. She started experiencing extreme rage and halusinations. She was immediatley brought to MRI. Her MRI was fine and we treated her with drugs to keep her calm and sane. After a few days on the cytotoxic drugs things slowly started to turn around. Through this all we were in talks with NY trying to figure out if this was an adverse effect to the cells she has been getting. Unfortunately, there were no clear answers. Sick Kids and NY ran multiple tests on Julia (and even me) to see if my dna was in Julia and she was rejecting my cells. Unfortunately with clinical trials there really are no clear answers. NY had never seen this happen but we all agreed that Julia could be the first. After putting all the tests together and her clinical improvment it was determined that is unlikely due to cells but once again no one could be sure. Also no one could explain why this happened and how the EBV got into her central nervous sysem and bone marrow. We spent a few days waiting to find out if the cells they were seeing were the cancer (the wait was torture), it was determined that the cells had not yet turned into PTLD and were only at the EBV disease stage. Julia came home 10 days ago and continues to get her cytotoxic drugs at home with home care. She is feeling much better and almost back to herself. NY would like us back there for more treatment although our doctor at Sick Kids isn't quite comfortable. It was decided that Julia was not stable enough to travel to NY at this time. I just found out yesterday that Julia will return to NY for more cells in the beginning of January. Although if she gets sick again after cells our doctor will pull the plug on cell therapy. Another year that Julia has been unable to go to school. She is starting home school today and is excited about that. I feel so bad for her that she has spent the last 4 years missing out on everything a 7 year old should experience. She is extremely frustrated staying home and all the meds she is hooked up to throughtout the day and night. She has 2 more weeks of meds and then hopefully she can be free of them for Christmas. We continue to go to the hosptial weekly for clinic and yesterday all her bloodwork was stable. Counts are a little low but expected on this chemo like drug she is getting. Anthony and Emily have had a hard few months as they have been passed around a lot the last few months. I have not been here for them at all this year. I missed Emily's first day of school and have spent much of the school year in the hospital with Julia. I can only pray that we will catch a break soon and be able to live somewhat of a "normal" life soon. I look forward to spending the Christmas break with all my kids. As much as I have tryed to remain strong throughtout the years this last admission had me totally scared, overwhelmed and defeated. We have lost many kids to this nasty disease called cancer in the last few months and this has made the last few months even harder. I am extremely tired, frustrated, and so worried about what the future holds. I apologize to all who have tried to contact me the last few months but I really just needed some time alone and was really in no mood to talk. I am re grouping now and as always ready to take on the next challenge head on. I am so grateful that Julia is so tough. No matter how down she is or how bad things get she is a fighter. A doctor yesterday told her she had 9 lives. She is one tough kid. Thanks again to all of you for your continued support. We apprecaited it more than words can say. Sincerely, Nadia

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