May 9, 2013

May 9, 2013 **UDATED**

Doing better. We got transferred back to MSKCC last night and got to go back to the Ronald today. I will update more later about what this means for treatment and so forth later.
**updated**
Thank God and thanks to the fast response by the nurse practitioners, 3f8 nurses and PICU pediatrics team from New York Presbyterian for giving Clayton the treatment he needed to recover from the horrible events of Monday! They made all the right choices and not only enabled him to recover fully, but enabled him to recover swiftly as well. After taking him off the ventilator, he did excellent with his breathing the rest of the day Tuesday and we were expecting to be discharged to the Ronald on Wednesday morning. Well, his swelling continued to go down and his breathing continued to be wonderful, but as things usually go, our plans were thwarted. Wednesday morning he woke up, stood up along side the bed and buckled in pain. The next hour Clayton was moaning in pain as he lay in the fetal position. He even managed to work himself up a fever of 104.0. Why? Severe constipation and gas. Being on the ventilator and from the doctors bagging him, he had A LOT of air pushed into his belly. That combined with not having a bowel movement since Sunday earned us another night in the hospital. It really was bad. They even gave him morphine for the discomfort; along with plenty of meds and treatments to help "get things moving." The good news was that night we were transferred back to MSKCC to stay. So after a few hours of relieving his discomfort by passing gas, Clayton felt good enough to spend the evening in the playroom at MSKCC. By the end of the night, his fever had completely dissipated and he managed to fully relieve his bladder and his bowels. Good times. Lots of cleaning up for me and George. My poor buddy felt so much better though. Anyway, we got to go back to the Ronald this afternoon. All that's left for us here in NYC is to check in with the clinic on Friday and then home on Saturday. Now for the burning question: Because of Clayton's reaction to the 3f8 antibodies on Monday, we will NEVER do 3f8 again. Both a scary thought and a comforting one. We will talk to the team tomorrow and see of they have anything else to offer...
I'm sure some people are wondering why we would be looking to do anything else; after all he is NED. True, but I cannot put into words how aggressive this cancer is. To not do something could mean a death sentence for Clayton down the road. We have to be proactive. Knowing that we can no longer do 3f8 though gives us options. For example, there is a clinical trial for a preventative treatment that is a collaboration of 18 universities and hospitals. If he is eligible, we could have the choice of places like Houston, Austin, St. Louis, Kansas City, Nashville, Charleston, Charlotte or Orlando. There are some other hospitals taking part in this trial in places like Michigan, Connecticut, Arizona and California, but we would obviously try and stay close to home. So our traveling is not over, but we may be done with NYC unless Clayton relapses. I'm not sure. We have a lot of thinking to do and we have to talk to the NB team tomorrow to see if they have something else to offer us. This is the first time since we've come here though that we have even considered any treatment elsewhere. If he ever relapsed though, we would definitely come back here. No doubt about it.
Lots of decisions...

Here is a before and after of his lips from Monday. This after is not even during the peak of his reaction.











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