Sunday, June 3, 2012

Long Overdue Update

Hi Everyone, I apologize for the long delay in updating the blog. I know many of you have been wondering what is going on. The last month and a half has been very crazy. As I mentioned in my last post Julia was admitted to Sick Kids and stayed there until the middle of May. It was a very tough admission as things kept going wrong and Julia was getting sicker as the days went by. As I told you she had a very serious blood infection which caused her blood counts to go crazy and starting requiring blood transfusions. An ultrasound revealed that she had developed a blood clot in her arm where her line was so we had to pull her PICC line. After that she developed pnemonia. A routine echo of her heart than revealed that all 4 valves of her heart were leaking. She was than sent to the OR for a heart biopsy and angio to see if this was being caused by rejection. Thankfully there were no signs of rejection but also no answers as to why her valves were leaking. After that she had her PET/CT to see if the treatment in NY worked. The results are heartbreaking......the scan showed new and bigger lymphnodes which we did not expect. Unfortunately based on this scan doctors could not declare her in remission. After many talks with doctors in NY it was determined that since Julia had so many other issues going on we would re scan her in 6 weeks (scan is coming up June 12th). At this point we have no treatment plan and the decision about going back to NY won't be made until after this scan. After all settled down Julia went back to the OR and had a port inserted in her chest for access. The first week or so was really tough but now she loves having her arms free of lines and being able to swim and take a shower freely. Julia is now home and feeling better. She has even starting going to school which she is so happy about. For now doctors are watching her very closely and we are in clinic weekly monitoring everything. Again I apologize for not updating earlier but the long admission and the heartbreaking scan results had me devastated and I really didn't want to talk about it with anyone. Last week, a very special girl named Sophia from St Mary's in Nobleton came to Julia's school to meet her. This grade 4 student heard about Julia's story and was determined to help. So with the help of her teachers she held a fundraiser at her school for Julia and raised over $700 for Julia. The meeting between the girls was unbelievable. Sophia presented Julia with cards, pictures, and even a video she made for her. It was absolutely touching. At the young age of 10 this little girl was so concerned and cared so much aboout Julia and her story. I thank her and St Mary's for all their support. As we are in watch and wait mode until the scan I ask you all to pray for Julia and better scan results next week. I will update you all with the scan results and Julia's next steps on this long and hard journey. As always, I thank each and every one of you for your continued support. Nadia

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