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

Wednesday, March 29, 2006

Zach Continuing to Improve

Zach is continuing to improve.

There is a possibility if things continue in the right direction that he will be moved from ICU tomorrow.

He's got some weakness from the stroke, but as long as he doesn't have another the chances are that he'll regain what he's lost in rehab.

Zach has had such a rough time with his tumor, which is slow-growing and which many patients live with successfully for a long time, sometimes decades.

Zach's problems are due to radiation-related side effects. Zach had radiation the same time as Steven, we met them in the radiation waiting room.

Zach's radiation was targeted, not to his whole brain like Steven. The radiation was targeted at his tumor, which was inoperable due to its location in his optic tract.

Following radiation, there was a lot of swelling in Zach's brain, which was controlled by large doses of steroids (hence the weight gain in the photos).

Zach also suffers from debilitating migraines, most likely due largely to the location of his tumor.

After nine months on steroids and massive weight gain, six stress fractures were found in his spine after a fall. Zach had developed osteoporosis from the steroids.

Zach started calcium and vitamin D supplements to help strengthen his bones and counteract the effects of the steroids. After several months on the calcium supplements, Zach developed kidney stones.

He spent most of last summer in and out of the hospital in horrendous pain as he passed one kidney stone after another. Needless to say he stopped the calcium, and I took Steven off of his calcium also after seeing what happened to Zach.

Over the summer, Zach had a couple of episodes that seemed to be TIA's, or mini-strokes.

After a followup MRI last fall, they noted that Zach's tumor was stable but that he was developing stenosis of the arteries in his brain.

He had an angiogram in November and that's where they discovered that his carotid artery was 80% blocked and that he would need surgery to correct the problem.

Bypass surgery is not very effective in children, it doesn't last very long, if Zach had bypass surgery he might have had to have it repeated again in a couple of years.

Zach had a procedure called encephalo-duro-arterio-synangiosis (EDAS) to correct his condition (called moya moya syndrome). A very simplified description of the procedure is that it's like taking a cutting of a plant and sticking it in water and waiting for it to grow roots, basically some pieces of blood vessels were stuck into Zach's brain and the hope is that they will grow and make new connections.

The surgery itself was a success, but it will take 12-18 months for the new blood vessels to grow.

And sadly, it seems that Zach was one of the 8% of patients who have a stroke after surgery. And he is still at risk for another stroke.

His condition is improving now and we pray he keeps moving in that direction.

Hang in there, Zach.

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