April 10, 2012

New York, New York!
Here we come! That's right. This is my baby we are talking about and I refuse to sit back and let mediocracy lead the way. That's right I said it. USAC&W has had it's ups and it's downs. We are grateful for everything they have done in overseeing our care, however we have decided to turn Clayton's care over to the Neuroblastoma specialists at Memorial Sloan Kettering Cancer Center in NYC. I would love to help USACW find their way as a pediatric institute, but right now my concern is my child. Seriously though, USACW has so many things going for them, that if they would just implement a few changes they could be amazing.
In the beginning, we were repeatedly told that we were receiving the standard protocol for stage 4, high risk neuroblastoma. True. We were also told that no matter where we went that that same protocol would be followed as put forth by the Children's Oncology Group (COG). Again true- excluding clinical trials. We were also offered a clinical trial involving two stem cell transplants. We declined...Thank God knowing what we now know.
What is it that we now know? Memorial Sloan Kettering Cancer Center(a private institute), the top neuroblastoma institute in the world, does not use stem cell transplants as part of their standard protocol. Wait? What? Why in the you-know-what would we do something so risky if the neuroblastoma specialists don't recommend using it? Short answer...we won't.
My baby-man is amazing and I could never live with myself if I did not use everything in my being to find and get him the BEST treatment possible. That is exactly what George and I have done.
The way things look, we will be jetting off to NYC maybe Thursday for a consult with the specialists at MSKCC. We are also thinking that we may do his surgery there as well. Their surgeon is world renowned with extensive experience with neuroblastoma and though we have great respect for our surgeon here, if we can use MSKCC's infamous surgeon, why not? I'm talking this guy resects tumors that can't be resected. He is the Derek Shepard of tumor resections!
Lots of possibilities! Lots of miles! Not a lot of time! We'll keep everyone updated and take y'all to NYC with us!

Oh yea, the scans from Monday did confirm that the tumor has shrunk!

April 9, 2012

I had had a much longer post for today, but Clayton deleted it. Not even really sure how...
We had a beautiful weekend though. Clayton has been in a good mood for days. Except for Easter, he was a little grouchy Sunday. His counts are great though and we are waiting to do surgery. We are actually doing our scans today to prepare for surgery.
As far as surgery goes, we will do it here unless the surgeon feels that the kidney could be at risk in which case we would go to Birmingham where they have a nephrologist on staff to oversee his post-op care.
More later...

April 2, 2012

We got to come home on Friday afternoon...yay! Fun weekend at home? Kind of. It is always nice to be home, but I assure you life doesn't stop and the little things don't all go right just because something like cancer is lingering over your life. Cancer is just chaos on top of the existing chaos.
The night Clayton's cancer was confirmed, I was driving home to get George and I more clothes for our inevitable (prolonged) hospital stay when I got a flat tire. At 9:30 p.m. On the causeway. On one of the bridges. The darkest bridge. You know the one between Ed's shed and the bridge closest to Spanish Fort? Yea, that one. Thank goodness for my Uncle Phil and the two Spanish Fort police officers who came to the aid of a hysterical woman gripping her steering wheel, screaming,"SERIOUSLY!", at the top of her lungs.
Then there was the day in late January that George found out that his 10 year old lab was beginning to get some paralysis in her spine. Really? First the man's son gets cancer and now his best friend is experiencing the beginning stages of paralysis?
Did I mention I had another flat tire LAST month?
Then there was what we thought was a LITTLE bit of rot on out door jamb that turned out to be more extensive because when our house was built in '04 the builder failed to install flashing.
These are just the "highlights".
But don't let me be such a Debbie Downer. Even though some of these things might be frustrating only one of them matters...(oh, and our dog too)... Plus we then have all the blessings...our friends, our family and our jobs being at the top of that list. With the good comes the bad. And I assure you I have the deepest appreciation for the good. Have a pity party if needed, but wake up the next day with a smile on your face ready to conquer the world-or cancer whatever happens to be thrown your way. ( I am sure my mother and husband are laughing at that statement, because I seldom wake up with a smile seeing as how I am NOT a morning person. Give me thirty minutes though and I am ready to start the day! There I go thinking I'm Oprah... I digress.
We did have a pleasant weekend at home and Clayton is doing GREAT. Our minds and spare time have however been focused on our rot issue. By the time I come home from work tomorrow, it should all be fixed! Aside from that we are waiting to verify if scans will be this Thursday or Friday or the following Monday or Tuesday. From there, surgery should be within three weeks. Very exciting!!!
He really is doing great and it is always so humbling to know how many people care for him. I wish I could bottle up all of the magic, everyday moments with him and share them with you all. Few people get to see him like George and I do and those are always the sweetest, funniest moments.