August 6, 2012

August 5, 2012...the eve of 3f8

We made it to NYC. We even arrived a little early. No woo hoo's here though. This feels more like a "business trip" than ever before. We are here for one reason and one reason only, 3f8. We dont even have a room at RMH right now. There was some confusion about our reservation and the normal neuroblastoma social worker was out all week and the on-call social worker wasn't able to help us any further. So for now- and maybe the whole week- the 9th floor at MSKCC is our only home here in NYC.
George and I have definitely been on edge all day. It is hard to suppress the fear and frustration that comes along with this disease and especially this treatment. Even when I found out it was definitely a go last week, in that moment I had to hold it together. All of the anticipation just wanted to come rushing forward.
We know this is the right thing though. All of the research and the pain have led us here to this hospital and these doctors and in large part, this treatment. While that will not make the week easier, it is what makes it possible for us to get through it even when we have no idea how. This week will be hard for everyone. What we are doing is unimaginable and yet like so many other parents, we have found ourselves in agreement with the doctors here that this is the best thing for Clayton. There was a time when my child having cancer was unimaginable and yet here we are. So we can do this. We will suck it up and we will do it, because it is the difference is Clayton having a 20-40% chance of survival verses a 40-70% chance of survival- rough numbers given by the doctor.
We are here and we are settled in our little nook. Yes, even for 3f8 you have a nook rather than a room to yourself. Our roommates got here a little after us last night and I was excited to see who they were. I had seen them before in the day hospital. They have a little boy near Clayton's age and from what I could hear of his video last night, he is a CARS fan too. Two peas in their little 3f8 pod for the week. This is their first round of the 3f8 as well. I really couldn't be happier about our roommates. Good roommates makes a big difference.
Pain is one of the ways your heart breaks and it is not something you want to experience in front of strangers, however, having cancer forces you to do that on a regular basis. It is a comfort knowing that the pain of the events this week will be shared with a family in a similar place. Because we WILL be sharing everything. We will both be doing the 3f8 here in our rooms rather than on the 3f8 wing. We will both be able to hear everything each other and our children are going through. Every whimper and frantic effort to stop the pain will be shared. The horrible part is that one of us has to go first. Which means the other parents have to sit through it and listen to everything from behind a curtain knowing it is their turn next. Then of course for the ones that go first, when they finally think it is over, they have to relive it listening to the other child go through it. Even if it is not your child I imagine it is heartbreaking listening to any child experience that level of discomfort. It is going to suck and no jokes about being armed with klonopins are going to change that.
Pray hard for whatever will help Clayton get through this.


The room isn't as bad as it looks in the picture. Small, but not bad. We walked through the halls, and even here at MSKCC they are dreaming of 5 o'clock somewhere.

No comments:

Post a Comment