When I found out that we were finally going to New York, my thoughts were those of relief. While we love Dr. Watt and recommend her to anyone, we knew that Children’s Hospital couldn’t really help her much more. It was time to head to Dr. Kushner at Sloan Kettering. I had an idea of who Kushner was from all of the Facebook groups I’m a part of that are dedicated to Neuroblastoma. I had heard he was a bit distracted, but brilliant, with an odd sense of humor. I hope he had humor, as you all know that is how we get through our lives. Or at least try.
We got to New York easily. Katie-Anne was perfect on the plane and had a blast. She watched movies the whole way. The Uber ride here was good. I had never done Uber and now I’m a huge fan. It’s so much easier than I thought. He took us right to the Ronald McDonald House. We got here about 11pm. Check in was easy. The room is pretty nice. plain but nice. The beds are little better than prison beds (not that I’ve ever been in prison but you know what I mean). I’ve since gotten a mattress pad for the bed and I’m hoping it helps tonight. The bathroom is clean, as is the room. The walls are pretty thin and our next door neighbor is fond of their snooze on their phone, but it doesn’t really bother me.
Going to MSK was a whole new world, and not in the Aladdin kind of way. One, it’s New York so it’s crazy busy. Two, it’s pretty big and you really have to pay attention to what side you go to etc, or you’ll get lost easily. Three, the playroom on the 9th floor is huge, and overwhelming. At least to me it was. I’ve been in the childhood cancer world for almost two years now. Two years too long. But as I looked around me in that playroom/waiting room, I was just overcome. How can anyone say childhood cancer is rare? Neuroblastoma is rare? I was literally surround by children there to see the oncology team at MSK. Dozens…there were dozens. I couldn’t help but get a little teary, and thats not really me. Katie-Anne wanted to play with the kids so bad, but the two groups of kids near her were both from other countries. One was from Romania I think, the other from Japan I think. I don’t think the kids spoke English and she wanted to interact so badly. I asked her to make me lunch (she was in a play kitchen) and she brightened up and went to playing. We didn’t wait long, not considering. We went into an exam room with Kushner, his PA, and a nurse. Let me just say now that Kushner is everything I hoped he would be. I don’t know if he’s going to get my sense of humor, but I really do think he is going to help Katie-Anne beat this. To me…he looks like Bill Nye. He’s tall and kinda lanky and a little disheveled. He’s everything you want to see in a research doctor. The thing is though, he asked to see a picture of Katie-Anne before she was diagnosed,”so I can see her like you see her.” He asked about all of us. He asked me some medical questions and I even peaked an interest in something I told him, which made me feel a little intelligent *insert cheesy grin here*. I just like that you can tell that not only is he a researcher, he cares about these kids…cares about Katie-Anne.
The plan for right now (Kushner is known for changing his mind) is to do two rounds of 3f8 and then start her on vaccine. To say that I’m excited to hear the words vaccine is an understatement. There were days that I wasn’t sure we’d even get to talk about it. That means he considers her disease mature, which is what Dr. Watt and team believe as well. The only snafu is if she is HAHA (Human Anti-Human Antibody) positive. It’s an immunity to the antibody treatment and we’ll have to change tactics a little if she is. We leave here Tuesday and fly back on Sunday to start 3f8. Whew what a whirlwind (I hate this word now btw).
We’ve met a few families while here, one especially has been super nice to us. Their son is just a few days older than Pooters and is such a sweet boy and is on vaccine and doing well. They’ve been so nice to us and Katie-Anne. She has herself a little boyfriend in the older boy, he’s five, and she is smitten. She’s having a blast up here. This is one big adventure for her and kind of a mini vacation for me. We finally got the remodel at work done for the most part and now it’s just finishing touches so it was very much needed that I got to get away for a few days.
We’ve got to go to the American museum of Science and Nature yesterday and the beach today with Angie. She drove up from CT and took us and Katie-Anne had a blast. I did too but I forgot how much I hated sand in my butt crack. In fact, I’m going to shower and head to bed. I’m sure I’ll write more about our weekend later, but I’m going to relax while I can. We have bone marrows tomorrow so we’ll see how it goes with it being four points instead of two. Wish us luck. You know we always need it when cancer happens.