TSC and Fear

When Oliver was first diagnosed with TSC I spent hours reading scholarly literature and learning all I could. It was scary. It was unsettling. I was thankful I had recently been to grad school and had a decent idea of how to read articles and understand all the charts and graphs. I am not a doctor but, I felt like I got a PhD in TSC in a matter of months. My appetite for information was endless. As I read there were certain possibilities that troubled me the most. Now one has defenitly become part of our story and, God forbid, another might. Sigh.

#1- Infantile Spasms (only 30% of kids who have these are cognitively normal, i.e., not mentally retarded). By the way "Mentally Retarded" is still the proper medical term. Well Oliver developed these spasms (late onset b/c he was 19 months old when they first appeared) in November. As you know they have taken a terrible toll on his development. This is why they are SO bad. I'll never forget the day the doctor called and said he thought Oliver was having spasms. I felt like I had been sucker punched. I knew immediately that if this was happening it would be bad. These spasms have lived up to their awful reputation of being very difficult to control and wrecking the brain in the process. Please pray these will stop and soon!

#2- SEGAs- these are the big bad brain tumors in the TSC world. They can stop the flow of spinal cord fluid which can lead to death. They are very serious, particularly if they grow quickly and usually lead to brain surgery. If caught early enough the outcomes are usually good. Since they are in the center of the brain the surgery is quite involved. SEGAs grow from SENs. Oliver had 3 SENs as of August. Our Boston nurse, over the phone yesterday, said "We need to do another MRI. I think we need to make sure there isn't any new growth in the ventricles (i.e. SENs and SEGAs)." That was another, take my breath away moment, I know enough to know this a big deal. When medical professionals start talking this way you know they are very worried. Jan, the amazing Boston nurse, is working to make sure that Duke gets us in ASAP for the MRI and EEG. She agrees that waiting until April 26th is unacceptable with how things are going. The plan as of yesterday was to have Dr. Thiele call Dr. Mikati and talk over Oliver's situation. Please pray this will happen as it is the best case scenario for continuity of care. It would be huge, even if the conversation was brief, for them to touch base about our sweetie. I think the idea is on Thur or Fri we would go in for a 24 hour EEG and a MRI at Duke. We might also start the steroid treatment there. So much is up in the air at the moment. I feel good that the Boston team (God bless them) is working so hard to take care of Oliver. I wish we were closer to Boston at times like this, they have become so dear to me!

I want to end with this little picture. Yesterday Oliver and I went to the park. It was a sweet time. He was really engaged with me. The weather was glorious. I had one of those mom moments where you know you'll never forget it. It was an ordinary moment but, it wasn't lost on me. He was on the top of the slide, wind blowing that blond hair, eyes shining happily, then off he goes down the slide. It was a moment in time and it reminded me what a gift it is to be the mother of such a strong, special son. As he ran off to play in the mulch I couldn't help but feel grateful, deep in my soul. I pray often that I can be a volunteer, not a victim of TSC; that I can see these special moments as the merciful gifts that they are.