Thursday, December 1, 2011

Update from New York

Hi Everyone,

We arrived in NYC on Tuesday night after a very, very bumpy ride. I was terrified and puking in a barf bag the whole way here (longest hour of my life). Julia on the other hand was laughing her head off saying "faster, faster this is so fun". My little 6 year old rubbing my back telling me it was going to be ok. What a trooper!
After an interesting encounter with our first taxi driver in NYC who brought us to the wrong place and started taking our bags out of the car, as I was telling him he couldn't leave us there it wasn't the right place, we finally arrived at the Ronald McDonald House.
Early Wednesday morning we arrived at Sloan Kettering to start the next part of our journey. Everyone was ready for us and welcomed us with open arms. It was so overwhelming and things are quite different here than at home. Julia had about 30 tubes of blood drawn, her exam with her new doctors, and then at 2:45 Julia's first cell transfusion took place. The doctor hand delivered the cells and transfused them herself. As she was infusing them she told Julia "here are mommy's cells, she worked hard for them Julia". It was unbelievable to watch. The infusion was very fast but there was a 4 hour monitoring period after infusion. My heart was racing and I don't think I've ever been so scared. The pre meds knocked her out and I sat by her bed watching every breathe she took wondering if my cells would hurt her. She did very well and doctors were pleased. We were back there today for blood work and everything looked very good. We need to go back tomorrow for clinic and hopefully everything will still be ok. Julia is feeling good right now. Interestingly, on Wednesday morning before arriving at Sloan Julia's oncologist emailed me to inform me that Julia's EBV test from last week is positive for EBV in her blood. This is what we were waiting for all this time to qualify for trial. So looks like now was the right time to come to NY......strange how things just seem to fall into place.

The house................I am having a very hard time adjusting to the Ronald McDonald house. It is very nice and the people here (both families and staff) are very nice but it is so very sad. The house is at capacity (84 families) and a lot of these families have been here for months and months. There are even quite a few that have already been here for a year and still have a year to go ( I can not imagine this). I can not handle all the sad stories and most of the families who have been here so long can't even afford to buy food.....break my heart. Tonight the house celebrated the start of the holidays with the lighting of the Christmas tree in the lobby. The kids sang songs and Santa came to visit. There were speeches by all the suits about how this is the "house of hope" and how in here the house tries to let them be kids first not kids with cancer. I was crying the whole time and couldn't believe I was even here. Never in a million years would I ever have thought we would be in a position like this. You can't even imagine the world that exists in here.....its the stories you may read about but never really know about, and I feel like I am living in a very bad dream.......and that if I pinch myself hard enough it will all go away.

Julia's second cell infusion will be on Wednesday and than the last one on Dec 14th. If all goes well we hope to be home on the 16th, but the doctor has already told us she believes Julia will benefit from another cycle. This would mean we would only be home for 3 weeks and than need to return. .....can't even think about that right now.

Its only been 2 days and I am unbelievably home sick. I miss my kids tremendously and can't stop thinking about them. I miss my house, my family, my friends and just my life back home. Simple things that most people really take for granted (including myself before all of this). We feel so lost here. We haven't had any time to do anything in NY since we've been at the hospital most of the time but we hope to be able to do something fun over the weekend.

For now I am so grateful that Julia is well and seems to be handling everything very well. I pray almost every hour of every day that she can get through this with no complications and we can return home soon.

Thank you for the unbelievable support I have received from all of you. I will continue to keep you posted on how things are going here in New York City.


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