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

Saturday, August 26, 2006

Blessed To Be Home

Our last day at St. Jude was four more hours of cognitive testing, followed by a visit to the neurologist.

The psychologist that gave the cognitive test told me that Steven did very well, but official results won't be available until they enter all the scores in the computer. We'll receive a written report in a month or so.

No news on the thyroid function yet, the endocrine team gets together every Tuesday and discusses how to proceed with their patients, so we'll hear later.

Christian playing hockey with Steven

We met another family from Malibu in California, their seven-year old son Christian was diagnosed with a tumor very similar to Steven's and he went through the same protocol that Steven did.

We went to dinner with them, then to the Putting Edge for some glow-in-the-dark mini golf.

Steven was much sicker on Thursday night, wheezing badly and terrible drippy sinuses, croupy cough all night long. I was hoping he'd be well enough to fly.

When we boarded the plane, Steven was pretty sick but he got better on the way home. I think maybe he just needed to get away from whatever was making him sick in Memphis.

Trey went home with some not-so-great news. They were in Memphis to prepare for a second bone marrow transplant using his father as donor, but they found out he has antibodies to his father's blood from his previous transplant, that's why it didn't work.

So he's back home for monthly blood transfusions. He can't be sustained indefinitely on transfusions, but we pray it keeps him well until something better comes along.

School starts Monday. I wish we had a bit more of our summer left, starting school is like getting on a carousel that keeps picking up speed as the year wears on, until we jump off at the end, exhausted, for yet another all-too-short break before its time to jump back on again.

A huge thank you to all who held us in your thoughts and prayers on this trip. Our faithless moments are filled with fear and it is the support of those who care that helps pull us through.

We are just ever so grateful to be home again.

- Kathleen


Anonymous Audra Lehew said...

I'm sorry I haven't been to your site before now. I'm getting ready to read some of your history. Thank you for putting Anabel and Daniel's pictures on your site. We appreciate the prayers that will be given us because of that. The pictures of your son are at the Grizzly House I think. We have good memories there, I'd give anything to be there with Daniel right now, but that is of course selfish of me. He is happy now. It is good to put your faces with your names. Know we will be praying.

August 27, 2006 9:10 PM  

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