July 25, 2012

Wow! We are packing up our room at the Ronald right now. Crazy. This place has literally been my home for two months. Since May 28, Clayton and I have only spent about eight nights at home. Its hard to believe it has been that long. Time has become one big blur. For months, my life hasn't been measured in days and hours, but rather in events; "two rounds of chemo ago", "after the 6th round of radiation", "following surgery on his bladder". If all goes well Thursday morning, we will be leaving that sequence of events behind us and moving on...we have a meeting with the neuroblastoma attending to get the results of his latest scans and hopefully sign consents for 3f8. We also will be getting his final tube removed! Well except for his Hickman; they want us to keep that through the second round of 3f8. George and I have felt like the supra pubic tube could have come out by now, but we completely respect Dr. La Quaglia's methods. Having been in place for two months, the CT last Thursday showed that the tube has recently come out of his bladder. So Thursday morning, Dr. La Quaglia is going to have Clayton sedated and remove the tube. Yay!
Aside from that, Clayton is doing good. He started the week off a little grouchy and continued not to have an appetite, but things turned around yesterday. He's eating better and even ventured out and tried some sweet potato fries and BBQ chicken last night. Yea, Justin Timberlake's restaurant, Southern Hospitality, has been our saving grace when we crave southern food.
It's hard to believe we will be home by the weekend. I'm so happy for Clayton though; it always does him good to be home. I'm also excited, because as things settle down over the coming months, he will get to start the early preschool program. It is specially designed for children with speech delays and such like Clayton. All of his treatment and hospital stays have gotten him more behind, so that program will be really really good for him. And hopefully, once he is potty trained, we can get him back in the Learning Tree program too. Potty training has been a no-go so far because of all the in and out of the hospital and the fact that when we were potty training him before his diagnosis, it failed because he was having the urine retention and had little control over his bladder.
George and I are just ready to be home. I am super excited too because Clayton and I are getting our new couch! Remember I mentioned I would love a new couch, one that hasn't been plagued by chemo. Well George and our parents went in for my birthday and got me and Clayton a couch! So excited! And I say me and Clayton, because with me and George working 40 hours a week, let's face it, Clayton will spend more time on the couch then anyone else; and he deserves something comfortable. This is a big deal. We have always had hand-me-down or slipcovered-thrift store couches so if fighting cancer didn't make me feel like a grown up, our new couch definitely will! I'm sure this doesn't make much sense to the men out there, but I'm sure the women get it. It's like getting a matching washer and dryer...it's a big deal...or at least it's a milestone. So lots to look forward too!
I'll update about the scans as soon as I know...

Oh and a huge thank you to a special lady here in NYC named Barbara who loves these kids to death. Her mission in life seems to be bringing joy to these kids' lives.

And also please pray for a special little boy named Matthew. He is less than a year older than Clayton and was diagnosed just three days after Clayton. He has a significant amount of disease in his bones and unfortunately the chemo is not doing much to eliminate it. They have no where else to go, but here for help and they need all the prayers they can get that these awesome doctors at MSKCC can figure out an option that will work for him. He is so vibrant and full of life that you would never know he was sick. I spent a little time with him and his mom yesterday and he kept me smiling the whole time!