Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Friday, August 19, 2005

Three Months At A Time

Steven and Brooke

After another long day of appointments yesterday, we had dinner with our Memphis friend Brooke. Brooke used to be one of the elementary school teachers in the classroom at St. Jude, but she left to teach a kindergarten class in another school.

Steven and Angie showing off their dancing skills

After dinner, there was a country western dance in the St. Jude cafeteria. Steven danced with Angie, our friend from Child Life who is so good at making bird calls to distract Steven when he's getting his IV in.

Today Steven had only one appointment with an endocrinologist. Kids who get whole-brain radiation get their pituitary and thyroid glands irradiated as well and this can wreak havoc with growth and the onset of puuberty (misspelling intentional, I may explain why at a later date).

Steven is more or less on track. He's at the 25th percentile on the growth curve, but this is where he's been since long before the brain tumor. If he starts falling below 25th percentile, they will recommend growth hormone treatment.

I feel blessed that we haven't had to seriously consider growth hormone yet. It's a daily injection to be given at home, and given Steven's love (not!) of needles, this wouldn't be an easy thing to accomplish.

Then there's the really big fear, that growth hormone could cause things to grow that nobody wants to grow, like stray tumor cells. It's not an easy decision for parents to make and so far that is one cross we haven't had to bear, so we keep monitoring things.

The cerebrospinal fluid they took from his spine yesterday was clear.

Some of you are already aware of the difficulties we had with school last year, but to make a really long story short, Steven has shown significant attention problems which we believe are a side effect of radiation (the gift that keeps on giving).

We saw the neurologist at St. Jude who has prescribed ritalin. We're going to try it and see if it helps. School starts on the 29th.

Thank you all for your concern, prayers and good thoughts.

Since the end of Steven's treatment, I feel like we're living our lives in three-month segments, demarcated by MRI's.

With much gratitude and thanksgiving for how far we've come, we begin the next three months.

- Kathleen


Blogger Kyra said...

I wouldn't dream of saying that I know how you feel; of course, I don't. But I understand your hesitation with the growth hormone. I was prescribed medication that produced side effects as bad as the disease itself. I will pray that your family is not faced with this decision.

These last three months have ended on a positive note. Here's to continued progress in the next three months!

August 21, 2005 7:41 PM  

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