Dear Friends and Family,
I am back from NYC and the cell donation is done....thank God. Our flight got out of Pearson and surprisingly was on time. We landed in NYC and the chaos began. We arrived at Sloan Kettering (a huge facility), and met with Dr Prockop who gave us a tour of the center and explained where and what Julia would be doing when she arrives. The center is beautiful and very kid friendly. It was intimidating, overwhelming and depressing. Going through any medical challenges is scary but to do it in a foreign place so far from home away from the doctors and nurses we are comfortable with is overwhelming. After the tour she walked us to the donation room to start the cell donation. The nurses were excellent and could see that I was extremely nervous. It took 3 nurses to calm my nerves and one of them talked to me the whole process to get my mind off things. Before I knew it the donation was complete. I did however feel very light headed and tired so they made me stay in recovery a little longer and pumped me with orange juice. They wrapped my arm up so tight it was cutting off circulation. My arm did hurt for a couple days. Once I was feeling a little stronger they let me go. It was unbelievable how not even 1 minute after collecting the cells the research lab was there to pick them up.....boy things move fast! Once I was done in the donor room we went back upstairs to have a meeting with Dr Prockop. She was wonderful....patient, polite, and very compassionate. She talked about the trial in detail and the possible side effects we could see, although reassured us that she will be primarily responsible for Julia's care and will make sure everything is ok. We discussed doing as much as possible in Toronto in order to keep our expenses down......it is crazy the costs in the US....they bill for everything, even a band aid. Julia will require a PET/CT and MRI of the brain before beginning trial so we will organize that at Sick Kids prior to leaving. My cells will now take 4 weeks to grow and an extra week to run some fancy test on them once they are ready. The tricky part with Julia is that we are not just trying to match her cells but also her donor heart.....very complicated way over my head. It is the worst feeling in the world to have to hand over Julia's care to a place I don't know much about and things that are way above my understanding and pray to God that everyone knows what they are doing. We will not have our transplant team with us and it makes me extremely nervous that the doctors we are dealing with are Oncologists and BMT doctors not cardiologists. I just hope they know and remember she's a transplant kid. Sloan Kettering has never had a heart transplant kid, Julia will be there first, which makes me even more nervous.
We met with our social worker at Sloan Kettering and she was also very helpful. She managed to get us in to Ronald McDonald house for the Monday night. The house is very nice and has tons of stuff going on for the kids. They have a huge playroom for the kids, and once a week they have field trips for the house, and 3-4 nights a week different organizations sponsor a dinner for the whole house. Monday night was Hawaiian night....a big bbq and smoothies for all on the huge beautiful terrace they have. Although the house is very nice and spacious for NYC, it was so depressing. To see all the sick kids and families that are all going through a medical crisis was a little overwhelming. Although the medical issues don't ever go away sometimes I don't want to think about them all the time but at the house its right there in front of your face 24/7. I was only in NY for 2 days and I was extremely home sick.....not sure I will cope well once Julia needs to go to trial.......I so don't want to go. The city is huge, confusing and chaotic. My mom and I will be lost. And there is no Loblaws in NYC!! The grocery stores are gross compared to what we have here. At this point I am trying to keep a clear mind and keep my head above water. I will focus on Julia's wish and worry about NY when I get back.
As most of you know we are leaving on Sunday for Julia's wish to Disney. The kids are so excited I can't wait for them to have this experience. After going to NY and seeing what we're in for I am so glad we were able to get Julia to Disney before going to trial....she needs it and definitely deserves it before going through another medical journey.
Julia is at Sick Kids tomorrow for a complete check up including all her tests before leaving on her wish. I will take lots of pictures and let you all know how her wish went.