Friday-Long week! We had two nights at the Helmsley and two nights at the Ronald house. There was lots of moving which is tough. Cody did well. It was his LAST cycle for this protocol. He will begin maintenance the next round. He is amazing.
We hung out with Sam on Wednesday! He was back and is supposed to get his port out. He is amazing too. He could not go to dinner with us and it is hard for him to sit. So we brought it to him. He is such a sweet guy and is doing this alone. He does have a friend in Poughkeepsie he is staying with. I wish I could do more for him. I am trying to kinda push he and Cody but Cody is kinda shy about it. Sam always asks about him and they did talk a little. I am hoping to get him out here one weekend.
I did a lot of talking this week. I saw the family I met on their day of admittance. The mom is Asian and the dad is Irish. It was the first transplant taken from both parents. They were not a match but it is working! Their son is having a tough time and sounds like the same route Cody went in a lot of ways, feeding tube, GVHD, C diff, nausea….so Cody and I both tried to offer our support. I also met a family just starting out with their son with Ewing's. Their parents are sweet and very scared, understandably so.
It is tough to see families going through this tough time. I know I am in it and when I really think about it, I get upset. The support from all those that work there is amazing. We had a different nurse and she was a doll. Very caring and she had a tough childhood, growing up without parents.
Long week and I am glad to be home. Looking forward to chilling all weekend. Praying for all good stuff!
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