Hi Everyone,
After discussions with both our doctors and Children's Wish, we have gone ahead and booked Julia's wish to Disney. We are going from September 4-11, which means Julia will celebrate her 6th birthday in Disney. How perfect is that? Our original wish of September 29th didn't look like it was going to work based on us needing to be in NY. So it was pass it up again or go now. Everyone was a little hesitant when I requested to go, but thought that as long as I was comfortable with the PICC line and Julia's condition it would be ok. She will be closely watched between now and than and will have every test possible on September 2nd prior to departure. After years of missing out on so many things there was no way I was going to let my kids miss out on this opportunity. So for those of you who know me well, I am scared silly about going, but hopefully nothing Ativan can't take care of! The kids are so excited which makes all the anxiety worth it, I guess.
I am going into Sick Kids tomorrow (yes me), for my last set of blood tests and will be donating my cells on Monday. Another thing Ativan will come in handy for!!
Julia has been feeling good and all her bloodwork last week was almost perfect. Doctors are very happy with her progress but gearing up for what may be coming. Based on Julia's history (after stopping chemo), she usually starts to show signs of her immune system coming back at the 8 week mark, which means the return of the EBV. Her last chemo was July 8th, so we will wait and watch and hopefully Julia will once again prove everyone wrong. She had an ultrasound Friday and I will review the results with doctors on Friday. Julia's transplant doctor has decided to try and pull her off the steroids in preparation for NY. We have tried this twice and she has had rejection in the past, but NY feels like being off while receiving my cells will better the chance of success. So at this point we need to out way the risks vs. the benefits. We will stop the steroids once we return from our trip and biopsy her just before leaving for NY to make sure she is not rejecting.......makes me nervous but really nothing I can do but trust the doctors.....story of my life.
For now we continue to go back and forth with Sloan Kettering in NY to work out all the details of trial. You would not believe how different and difficult things are in the USA. I am also trying to learn dressing changes on Julia's PICC line, as I will need to do this while in NY.......not going so well. I am nervous and Julia is extremely anxious having me do it. Don't know how this is going to work. Should be interesting.
As always I thank you all for your support and generosity in helping our family get to NY for treatment. I will continue to keep you posted and will definitely post some pictures of Julia in Disney.
Nadia
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