Hi Everyone,
It's hard to believe that 5 years ago today Julia underwent heart transplant. May 5th, 2006 @ 6:00am - this was the day our lives changed forever. It's been a long and challenging 5 years but when I look at Julia today I can't believe that 5 years ago doctors didn't think she would survive. And now after all the challenges she is a beautiful strong 5 year old girl, feistier than ever.
Julia had her CT last week and the results were unchanged from the previous scan. Good news, could have been better. Julia continues to have some unexplained enlarged lymph nodes in her chest but they are not growing. Given all the bumps recently this was a good scan given the alternative. We will continue to monitor with another CT in 3 months unless clinically needed sooner.
She was at the hospital on Friday and her counts continue to be very low. Doctors think it's because of the experimental drug she is on. It came down to controlling the EBV or saving her counts and avoiding neutropenia and blood transfusions. Her doctor decided to reduce the drug to once a day instead of twice hoping to see improvements in her counts. She did not have the results of her EBV numbers when making her decision but assumed her EBV would be down. On Monday we repeated her counts and they are slowly improving. Yesterday I received an email from Julia's oncologist that her EBV numbers from last week are up. The decision was made to stay on the experimental drug once daily and repeat the EBV next week. As you can imagine it is a fine line between controlling the EBV and keeping her counts up to avoid serious infection. Always a battle nothing ever comes easy with this kid!
Overall she is feeling better and is back at school which she is so happy about. Anthony's communion is next week and fingers crossed that Julia will remain healthy for it. We have confirmed Julia's wish for September 29th. We will be doing a 4 night Disney cruise and 3 nights on land. The kids are so excited they can hardly wait. It's going to be a long 5 months waiting.
Thanks again for all your support and I will keep you posted on Julia and also post some pictures from Anthony's communion. This will be the first family function that we all attend in a very long time.
Sending everyone a very Happy Mother's Day. We are so glad to be home for this day considering 3 of the last 5 Mother's Day's were spent at Sick Kids.
Nadia
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