It’s good, bad, and an expected result situation.
So, 18 months ago (March 2011) we had Will’s first MRI done to try and figure out what was going on. I laughed a little Tuesday morning remembering that I had told myself, 18 months ago this was it. The MRI won’t show anything and we’ll be done. We had already spent many months trying to figure out what was going on.Those MRI results came back and showed four lesions on his brain near the deep cerebellum. Little did I know we had just begun.
The expected. Now, 18 months later, it appears that that tissue has died and has scared over. She described it as having little holes in his brain. She also gave a good analogy – imagine you have a big deep cut on your arm. It’s red, inflamed, “juicy” and just not looking good (that was 18 months ago). As time goes on, that red, inflamed, juicy cut will scab over. (Side note, your arm tissue doesn’t die however).
I guess that was the expected part. We already knew he had the lesions, but Neil and I didn’t really know what that meant for the future. The first “good” part is that Dr. Koenig explained that the younger children are the more capacity they have to compensate for missing pieces of the brain. She said that some people can live for a long time with a huge piece of their brain missing. So this makes sense, or as much sense as a hole in your brain can make. The technical name of what happened to the brain tissue is called encephalomalacia. Clearly I have some new research to do.The bad. There is a VERY small spot on his brain stem near the periaqueductal region. This area is responsible for moving spinal fluid etc. The brain stem controls body temp, breathing, heart rate and so on. BUT and this is a HUGE BUT, Dr. Koenig said she is not even close to worried about this.
Apparently you could only see this spot on only one cut of only one slide of all the MRI slides and it was so incredibly small that it’s “not of concern” – from her lips to my ears. I asked if it might have even been there 18 months ago on the first MRI and it was missed and she thought that might be possible. So this could be an old spot, but new to us.
This is just really hard to internalize. You’re told a part of your child’s brain is dead, scarred over and that little tiny glimmer of hope I’ve been holding on to to fix those lesions – stem cell research – is squashed; then you’re told there’s a new spot, but don’t worry about it. (HA!)Then you’re told the GOOD, which is what shocked me the most. Will’s brain appears to be stabilizing for now. The old MRI showed a brain that was a "hot juicy inflamed area" but now it seems as though the brain has cooled off and things are stabilizing for now!. Dr. Koenig thinks this might be because of EPI-743 and how good he is doing. So, the theory is, keep him on EPI and start the SubQIVG and this all should bode well for my little Wiggles. Or, as he corrected me last tonight, “my name is William Martin mommy, not Wiggles.”
I am supposed to be feeling good and happy with the results. I’m struggling with that. My thought process hasn’t caught up with my feelings yet. I just heard dead tissue and new spot and kinda lost it for a few minutes. I actually had to tell Dr. Koenig, say the good part like three more times for me so it will sink in. We laughed and she obliged.The sentiment that I’m going to try and hold on to and trying to ignore all the really terrible things I didn't want to hear, is a direct quote from Dr. Koenig, “Will is doing darn good.” Now, in addition to keeping him stable and "healthy" I am on a mission to fix this shit. Pardon my french, but in some regards I have more incentive to find treatment and a cure for our buddy than ever before.