This mom's heart is very heavy tonight. Brady's spine is changing, and it seems to be happening more quickly than the doctor expected. He had XRAYS today that showed only a slight increase (from 12 to 15 degrees) in his scoliosis (left to right curvature). However his kyphotic curve (front to back) went from 37 to close to 50 degrees. We knew that something was happening. It is obvious from looking at Brady's scar down his spine that it is no longer straight up and down. He has a hump to the right of his spine. His sitting posture has become more slumped over recently. To have this news confirmed is heart-breaking.
The doctor we have been seeing told me that although he understands why I wanted to bring Brady in today, he doesn't want to see him again for 6 months (we will be seeing a different doctor in 6 months), because frankly, there isn't much to do about this problem. Yes there are braces, casting, and even surgical approaches for scoliosis. However, to do any of these to the growing spine brings about other problems and also does not address the biggest issue, the kyphosis (humpback). So his opinion is that we wait, and see what happens in the next 6 months.
This is not easy to swallow for Matt and I. How do we just sit back and watch his spine permanently curve more and more with each day? I made it clear to the doctor that we are willing to go anywhere and research any intervention that may be cutting edge. He simply told me that there just isn't much that can be done to intervene or prevent this. Furthermore, there isn't research that reports long-term outcomes of surgery's like Brady's...it just isn't common.
So. Here we are again. Another great big reminder that we, or course, are not in control. I would be lying if I told you that I wasn't crushed that God is not answering this prayer of mine. Every night I pray over the kids, and one of my prayers for Brady has consistently been for God to spare him from a spinal deformity. I wanted to protect him from having a life-long problem like this and the pain, limitations, and frustration that will come from it. The reality of the long term effects of pediatric cancer is often overlooked when a child survives. The facts are that most survivors experience negative effects from surgical intervention, long term effect from chemotherapy, and sometimes secondary cancers. It is such a battle to balance the feelings of "I should just be happy that God has brought us this far" with the feelings of "Brady deserves only the best from here on out." It will take me some time for sure, but I'm praying that God restores my spirit and sees Brady through this as He has so faithfully done.
On a lighter note, I couldn't have asked more of Brady today. We started our morning at PT and he did a fantastic job. He did all that was asked of him, showed a ton of improvement with independent jumping, and couldn't have been sweeter as he interacted with Linda. We had some time to kill before the next appointment, so we went to breakfast at Perkins. Brady was a total gentleman and I made his day by ordering him pancakes complete with sprinkles. I actually had to cut him off because we had to get to the doctor, or else I think he would have cleaned his plate! At the appointment they started off by doing the XRAYS. He has to stand up while having them done. In the past I have had to wear the protective apron-thing because Brady needed me to stand with him and comfort him during the XRAY. Today the tech asked me how many times I had been with Brady during a scan. I honestly couldn't remember, and she next reminded me that I was also absorbing the radiation each time, so she suggested that I should stand behind the protective glass. For a split second I thought "I can't, Brady will get upset," but I remembered that he has come so far recently with his level of comfort and trust. So I told him I would be watching him through the window and....HE DID IT! No tears at all. This was the first time I cried today:)
Thanks for letting me get this all out...here in my little free-therapy-zone! I'm really down, I'm worried, I'm discouraged, but my faith isn't lost;)