July 13, 2012

July 15, 2012

One more week of treatment is finally behind us! Chemo...done. Radiation...only three days to go. Progress.
So we're doing good. Clayton is doing good. He handled everything last week so much better than expected. The nausea has been minimal and he has only vomitted once. Both chemo and radiation should only have mild side effects, but we'll have to see what the combination of the two do. I was talking to a fellow neuroblastoma mom the other day who said for her daughter the nausea caught up with her after the radiation. The good news is that while his WBC dropped from Monday to Wednesday, they have since started to go up. His hemoglobin is also holding out good now at 9.3. His platelets however, are still dropping so we'll have to watch them. His appetite has not been as good as it was before and there has been so much time he was not allowed to eat that he has lost a little bit of weight; you can see the knobby knees again. He'll gain it right back though.
I've started to blog so many times over the past week, but I have so much spinning in my head nothing that comes out makes sense. It has been an interesting trip this time; I suppose it always is, but this time I've learned a good bit. I think I am still processing a lot of things. Being in the clinic is very different than being outpatient; you see and hear a lot more. So being in the clinic everyday has been...eye opening.
Between processing and my insomnia up here I have yet to find myself in a position to thoroughly update everyone on what is to come. Nothing new, I just have more insight on what we already have planned. I am up for sharing that provided everything goes as planned (which rarely happens) then our schedule will be to come home on the 23rd or 24th and then come back up here on the 29th to start 3f8 on the 30th. We will be doing 3f8 from Monday the 30th to Friday the 3rd and then come home the 4th or 5th. Are you ready for this? Then we will get to be home for three FULL weeks! Then back to NYC for round 2 of 3f8 (each round is one week), then home for three weeks, back to NYC for round 3, then home for three weeks, back to NYC for round 4, then...wait for it...home for 8 weeks! AMAZING! We might actually have a life again!
Once we reach that point we (God willing) won't have to do anything other then coming to NYC every couple months or so for a while; then every three months and then we pray only every six months! And as time passes, rather than come for a week, we will only have to come for three or four days! Of course there is always a chance that something could throw a kink in all of this, so please pray that things go smoothly with minimal (or no) complications. A huge concern in the coming months will of course be his kidney and how it handles radiation (I'll elaborate in another post).
For now we are trying to enjoy things and make the most of things by getting out and doing stuff when we can. I signed us up for a ZipCar over the weekend and I am so excited about it. It is this awesome thing where we can reserve a car when we need it and we can have it for an hour or for a few days or whatever we need. Sounds like a car rental huh? It's similar, but better! It works out to be more cost effective and it includes gas and full coverage in the event of an accident and they have lots of cars all over the city. It will be perfect for all our trips over the coming year, it's pay-as-you-go and we can cancel our membership at anytime. I am so excited, because I feel like it gives us more freedom. We are going to see about taking a day trip over the coming weekend to the coast up around the Hamptons. I am so excited! I hope the drive is nice; it's like an hour and half. We even found a boat that George can go on a four hour fishing excursion for less than $60 bucks. That rocks! A little something fun for both of us.

Thank you to everyone at work for the birthday card! I've been forgetting to add that in here...and a special thanks to some awesome ladies for my other birthday card! ;)

AND Clayton finally got to play with Zoey! Clayton of course needs lessons in sharing...

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