Saturday, August 18, 2007

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.


  1. Fear for the life and welfare of your child is totally understandable. Two of my children were premature and we were in fear and shock until they were out of danger. That was a shorter time than you face. I will say some serious prayers for you all.

  2. I'm sorry Alice - that's so hard for all of you. Love and prayers from here.

  3. Found your blog via your husband's just now and wanted to leave a big hug and hello for you. As soon as I heard your news, I started praying. This is scary stuff, but the Lord is there with you. We just went through some "very medical" stuff, and God is still giving us grace. {{Hugs}} Your Firecracker is a precious little girl. May the Lord give all the doctors wisdom in treating her, and supply your financial and emotional needs in the weeks to come.


  4. Thinking about you. Your reaction sounds very normal, to me. Best of luck to you all.

  5. Oh, heart is just breaking at this news. My prayers and hopes are with all of you. I left a message for Abby on her Caring Bridge site. I am relieved that you are in one of the best places you could be for medical treatment. The Atlanta docs have always been my favorite.

    Gentle Hugs...Rosie

  6. (((Alice))))

    You are not in denial - just processing -and fear is a real tangible part of that.

    praying that God meets you in this - and His love carries you

    praying too that your fear is manageable and doesn't paralyse you

    praying too that your own health holds up and you take time for self care too

    you have expended so much loving and caring for Jeff and FireCracker and it's great - but take time for yourself - and do something that makes you feel good.

    because you ARE worth it - God says so