I'm not big on talking about my feelings, but suffice to say I'm furious!
I had decided while we were up here we would consult with a particular orthopedic surgeon, about Clayton's scoliosis. You see, before his cancer diagnosis, his kidney was stable and the only serious health concern we seemed to have was his scoliosis. We had spoke with two doctors in Mobile over the past couple of years and went with the one we liked and decided a little after his 4th birthday we would do surgery to place a grow rod. It is a rod that is placed to keep his scoliosis from getting worse and it is extended in an outpatient procedure every six months to not only keep up with his growing body, but to correct his curve as well. The rod would stay in place and be extended routinely until Clayton stops growing- that could be 14 years or even a little more.
Then of course he got diagnosed with cancer. That was all we focused on for months. However, the scoliosis was never far from my mind, because if it isn't corrected and it gets worse, it can cause some severe health problems of its own. As of last September, the curvature measured at 47 degrees. The x-ray taken today was not good- because Clayton was not cooperative- but from what the doctor saw, he said it looked like it was now a 60 to 70 degree curve.
Are you flipping kidding me!!!!! It isn't enough that the kid has spent the last 8 months fighting cancer, but his scoliosis had to get worse in the process. I want to scream at the top of my lungs right now. I mean really really SCREAM. I don't want to hear that God has a plan. No. I don't want to hear everything happens for a reason. The only thing that makes any sense to me right now is that this just sucks. It all just sucks. I haven't lost faith, but it is definitely being tested. You see for the past 3 years, I prayed every single night for Clayton's health. Do you know how it feels to be denied the one thing you pray for every night, the most important thing in your world? It sucks! It sucks for me, it sucks for George and it mostly sucks for Clayton.
I know I'm not alone. I know there are other families who have comparable experiences with their children and I know it sucks just as much for them as it does for us. In some cases, even more. I would never wish any of what we've been through on another family, never. At the same time, it is hard to see healthy kids and wonder why your child was chosen for this hell. Especially when your child wasn't chosen to fight just one battle, but so so many.
What makes all of this sooooo bad right now is that as soon as we get over one hurdle it's like, "oops, here's another". Seriously, it has been like this since I was pregnant. Yes we've had "healthy" times, but there always seemed to be something looming in our future. Throughout it all, George and I have tried to stay positive and optimistic, but that is definitely wavering these past couple of months. It just seems like we can't see the light at the end of the tunnel through all the piles of crap. I desperately hope that we can bring some closure to most of our cancer treatment and not have quite so much to worry about; and God forbid maybe have a little fun. But now, in the midst of everything, it just felt like an enormous slap in the face to hear the doctor report the scoliosis had gotten worse yesterday. So unfair to Clayton. How can so much be expected of a three year old?
Anyhow, after talking with the orthopedic surgeon here, we know we will want to use a doctor closer to home in case of any urgent needs with the rod. We are not interested in going back to USACW because we are not comfortable with Clayton's care there at this time. Therefore, the doctor here will be making a recommendation for the best place to do it close to home. It would still be a little after his 4th birthday (11-05), I believe, before we would do the surgery. So, I think we are going to see if we can take Clayton on a Make-a-Wish trip to Disney World before we do the grow rod. Meanwhile back here in NYC, the procedure to remove the nephrostomy tube and have the stint placed will be Thursday at 9:30. From there, I think we might be able to come home for a week. However, this process has taught George and I not to count on anything until it happens.
**I'm sorry this and some other posts are not more positive, but their real. Our life isn't some happy bundle of flowers or something. It is real and lately it is full of more pain than normal and I am the not the kind of person that (when writing about things) is going to sugar coat our reality. People read the blog for different reasons and I write for different reasons. One reason I write is so that I don't have to feel like some things are just bundled inside, because that can drive a person crazy. I am not the kind of person that will talk to people about the way I feel, so this blog is the closest to that that I am going to get, but it is therapeutic for me all the same. So I'm going to write what's real and I do hope that isn't disappointing to anyone when the reality is a little bitter. I know that it is helpful to me to get out frustrations here that I will not talk to people about.**
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