We are finally home and with no surprise our last 5 days were not uneventful. As I mentioned in my last post Anthony was sick on Monday.....well Tuesday Julia was sick. Unfortunately due to her medical frailness she was admitted to Sloan as an in patient. She remained in patient until Thursday night so needless to say her cell infusion which was suppose to happen on Wednesday was bumped to Friday. And for those of you doing the math....yes we missed our flight home!! We had to change our flight to Saturday in order to get the last cell transfusion Friday. We are expected back in NY the second week of January for cycle 2. Really don't know how I'm going to get through it.....
It was quite the experience and really not what I expected. It was longer and much harder than I ever imagined. We met some great families with of course sad stories and unfortunately they were not as luck as us to make it home for Christmas. I hope all of them can find some way to have a wonderful Christmas despite being separated from their families......and the Ronald McDonald House will make sure of that. I can not take anymore of the sad stories. I get far to emotional and want to help all but being at the house I realized I can not possibly help everyone despite wanting too.
Julia has recovered from her gastric infection and is due at Sick Kids on Tuesday for follow up. She is booked to have a PET/CT on Dec 29th to see if disease is; gone, stable, or has progressed. NY doctors don't expect to see much change after only one cycle. Unfortunately we will not know until the beginning of cycle 3 if and how well this treatment is working, or even how long my cells are lasting. The idea is the longer my cells last the longer she can go in between cycles. This whole process is much more than we all bargained for. It is intense, long, with really no immediate answers. NY is talking about just keep going and going. Even talked about Julia's own cells potentially being ready for cycle 4. After seeing my bill for only 1 day I don't think we can keep going and going. I will speak with Julia's doctor here and together we will decide what to do long term.
On a positive note Julia's primary doctor in NY is amazing. Very similar to her doctor here and that definitely made things easier for both of us. She even called us today at home to make sure we made it home ok and that Julia was feeling ok. The whole team we dealt with really were unbelievable. I'm still very happy to be Canadian and have health care, but it really will blow your mind at the advancement in the US. From big things like test availability, quick results (things that take us 3 days to get back here are back in 3 hours there), resources, blood tests (we've had a lot of blood tests and there were ones I had never even seen before), to simple things like parent lounges and kitchens with free coffee, cappuccino, and juice machines. To the incredible clinic and in patient food system.....pick up a menu, fill it out for everyone with you, and drop it in the box with the time you'd like to eat and your meal is delivered right to you.....and good food......no "meal train"(u sick kids families know what I'm talking about!!!)
For now I really need to re group and relax, and figure out why NY was so hard on me.
I'm grateful and excited to spend a quiet holidays with my family and will think about the trip back to NY in the New Year.
I will keep you posted as I know more.
Thanks for your continued support it is very much appreciated.