Thursday, May 12, 2011

Another Admission

Hi Everyone,

I regret to inform you that Julia was admitted to hospital Monday with fever neutropenia(low counts), enlarged spleen and lymph nodes and lethargy. In rounds yesterday I was basically told that they suspect the disease could be back and we are proceeding with a work up. Later that day our oncologist came to see us and put the breaks on. She has taken us off the experimental drug and moved the Bone Marrow aspirate and PET scan to end of next week. She is not convinced it's disease. Since the experimental drug suppresses the bone marrow she wants her off of it for at least 1 week before doing the bone marrow aspirate. We will be going ahead with an ultrasound today. Julia's x-ray and echo showed some suspicious findings that there is a pulmonary inflammation going on. Last night it was confirmed that Julia has tested positive for Para Flu. This would explain the fevers, and findings on x-ray and echo, but not the other findings. This can be extremely dangerous in immunocompromised kids and can lead to a serious pneumonia. For now she is being well supported and in the right place. Unfortunately this means she will not get out of here for Anthony's communion on Saturday. We have discussed with doctors that IF she's clinically well they will get her out on a pass for a few hours so she can attend the communion. This could not have happened at a worse time but not surprised given our luck.

Yesterday was an extremely emotional day and not in the mood to go into much more detail right now. I will keep you all posted when I know more (which probably won't be till end of next week). Please keep Julia in your prayers.


Thursday, May 5, 2011

Happy Transplant Anniversary

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.