Caring Bridge

8/27 update:

Sorry to anyone who tried to click on the link--I put in an errant period. I've corrected this and tested it and it's now working. Thanks, everyone.

I've decided to out myself so that I can direct everyone to Firecracker's Caring Bridge site. We'll post updates about her and you can sign our guest book. Just go here: http://www.caringbridge.org/visit/abbyswartz.

I am also posting a new video. It has the same pictures, but it also tells you those who didn't survive, and it has the contact information for the TS Alliance.

Thank you to everyone who has left messages of encouragement. I know many of you are praying for us, and we are so grateful.

The Faces of TSC

I'm worn out and don't have much to say. There's no news, really. I have my second surgery on Friday, but it won't be nearly as difficult as the previous one. In October there is a Tuberous Sclerosis regional conference here in Atlanta, and we will go to that for a crash course. Here is a video called The Faces of TSC that we found on YouTube. It seems you can find anything there. There's even a message about TSC from Julianne Moore, but I think this one is more interesting.

The bad news and the, well, what is the good news?

Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow on vital organs. When they grow in the brain, as they are for Firecracker, they cause seizures. They can also grow on the kidneys, lungs and heart, and the skin is usually involved as wel. "Benign" is something of a misnomer, since they can disrupt organ function just by being there. The specialist is pretty certain that Firecracker has TSC. In fact, when he examined all the films again with a neuroradiologist, he found 4 lesions, not the 2 he originally told us about. Unless there is a compelling reason not to, she will have brain surgery to remove the lesions. And she will have to have her other organs scanned to make sure they are clear.

There's no cure for this stupid disease, and there's no way to predict its course. It can cause just a few problems or it can endanger your life. All the information I've read states that TSC patients live a normal life span, at least statistically, but just how disabled they might be during that lifespan is unknowable. Some children are autistic and some severely retarded. Firecracker is neither of those, but the lesions are causing seizures, learning delays, and behavior issues.

We're waiting for the results of a genetics test. That will take 2 months. Because it's a genetic mutation, any children Firecracker has could also have the disease.

Dear Husband thinks I'm in denial, that I'm not here, because I'm not constantly in tears. I think I feel more fear than sadness. A kind of cold, clawing fear that has settled into my stomach. It makes me tense and then tired, waiting to find out when, how, what next.

More Medical Mysteries

So, Firecracker spent last week in the hospital hooked up to an EEG and confined to the area of her bed covered by a video camera. We had to deprive her of sleep, drop her meds, and keep her off food and water between 8 am and 3 pm every day. She has had seizures since age one, and she had an MRI at that time that did not reveal anything. Her MRI this time, however, showed lesions. The goal with the hospital stay was not just to record her seizures but to catch her in one, shoot her full of dye, and wheel her in for a contrast MRI. She also had a CT scan and will have another MRI next Monday. Then the epilepsy team at the hospital will confer and decide what course of treatment we should pursue. It took the whole blessed week for them to catch her at the right time.

One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.

Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.