June 27, 2012

Still here...We've just been home for a few days working and picking up some pieces. I myself have taken to purging. I have built up the nerve to finally rid our house of some things and tackle the overwhelming pile of mail that has built up over the past few months. We have doctor bills and prescription bills and cards for Clayton and insurance claim notices and so on. Loads of them...all of them. I have all Clayton's medical stuff organized in the big three inch binders, so I've had to sort everything. I can say that having seen the amounts on many of the insurance claim reports, in addition to the bills from MSKCC, I feel confident saying that Clayton's treatment has definitely passed the million dollar mark. Not that it matters; it doesn't. One day though I am going to tally the costs for a grand total just out of curiosity. I just opened a claim report from his tumor resection and his surgery and treatment on April 20th (only on that day) at MSKCC and saw it cost $210,792.84. That's crazy! Obviously we do not owe that or anything remotely close to that. We are beyond fortunate to have the best insurance ever! (And amazing people who have gone above and beyond to make sure that we are in a position so that we do not have to feel overwhelmed by any potential medical bills.)
Anyhow, Clayton is doing great. He has aquired one of those little American flags and runs around the house waving it. He is so happy to be home now. He had a ball too when we made a trip to Lowe's and he got to drive the "race-buggy" around. We are not seeing any more clots or any more blood in his urine which is awesome. Yay!

On another note a little girl passed away from neuroblastoma on the 25th. She was diagnosed in November of 2010 at just 14 months old. By July of 2011, her tumor had started growing back in her brain. They did come to MSKCC to try and undergo their pioneering treatment (which is the best in the world), but in the end, the cancer had its way. Unfortunately, the history of the disease shows that if it comes back in the brain, it is often very very aggressive. Please pray for her parents. I hope to never know what they are going through, and desperately hate it for them.
I HATE this disease! This stupid stupid disease. It is like knowing a cold blooded killer and having to fight them off blindfolded. I think most parents would agree that if someone ever hurt their child in anyway, that they would want to- at the very least- rip off that person's arms and beat them with them...only that is never an option here because you can't see this "bad guy". This bad guy will come and go as it pleases; without warning or consideration- or arms to beat it with. It will be years before I will feel safe from the grips of this "killer". And as you can see from the little girl's story above, this disease can easily relapse at the point we are at now. That is why we cannot let our guard down. That is why my nerves have been shot over having to delay our antibody treatment and radiation. We need to start them Monday. We have to keep fighting this, we are not out of the woods yet. Some kids never reach remission and some reach it and stay that way; others however, can go into remission for three months or for fifteen months before relapsing. The ladies I work with probably think I'm crazy with all of my sporadic babbling this week, but it's a means of forgetting about not only what we have to do Monday, but what this disease could be doing while we wait...