Sunday, August 31, 2008

Secrets I Never Thought I'd Share

In descending order or randomness:

Mary

My little girl, all eleven and one half years of her, ties her shoes with bunny ears. I wasn't aware of this developmental problem until one morning this past summer as she was putting on her tennis shoes.

I see this as a pretty huge issue...her dad doesn't.

Imagine my lack of surprise when last week I also noticed how Dale ties his shoes...exactly like he taught his daughter, but with a few more grunts and grimaces.

Dale

The list is too huge for details. I'll supply the one word prompts, you can fill in the details.

Ketchup
Directions
Buddies
Toilet paper
Diet
Memory
School
Razors
Camping
Baseball caps
Bad haircuts
Tying shoes

David

David can be very naughty sometimes.

This summer David has his school/sports physical with Dr. T, a female partner at the peds. office. After the good and noble Dr. T listened to David's heart and lungs, tested his reflexes and palpated his stomach, she proceeded to check his manly parts for lumps.

"David," she told him from down below,"You need to do a self-exam every month."

"Oh, my bad," David replied. "I thought I was supposed to do that every day."

Steven

I try not to share secrets about Steven. I've learned my lesson.

And he is such a perfect child...

Me

I still worry, twenty four hours a day and seven days a week, about this disease and what it does to my son.

This past August I had a bad reaction to "stable" after the last MRI/clinic visit for Steven. Athough I'm not schooled in the definition of "stable" used by neurosurgeons, I always thought that "stable" equaled "no growth."

I was wrong.

It seems that despite the constant proclamations of stable, the hemangioblastomas in my sweet son's head have been growing, slowly but surely, since he was first diagnosed in 2005. The tumor in the brain stem has doubled in size. The small tumor in the right hemisphere of the cerebellum is now as large as the pesky, now removed, tumor was in 2005. It also happens to be creating about the same amount of edema as that pesky tumor was three years ago. The very, very small tumor in the cervical spinal cord has also doubled in size since it was first pointed out in August of 2005.

I know that hemangioblastomas can lie dormant and not change in size or effect for years and years. And I had assumed that Steven's stable tumors were in that dormant phase...not changing...not growing...not spewing forth the vascular leakage and producing the dreaded edema.

I was wrong.

And I worry so much.

In spite of this, I remind myself every second of every day that I still need to be grateful. I need to remember that there are much worse tumors that can grow in a brain. I need to be thankful that Steven is being cared for by the best neurosurgeos in the world and at a place where mircales happen. I need to appreciate that my sweet son still moves and breathes with ease and grace, despite these tumors that try to rob him of his health.

I need to not worry.

1 comment:

Shelley said...

Worry,
useless creature that it is...
lives in the hearts of mothers.
I don't think we can help it!

I love your blog!

Okay, I had a scenario for everything but razor blades!!

Hugs to you,
Shelley

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