Colin Loves Tractors » posterior fossa syndrome

Out of the Nest

Mom — Mon, 01 Feb 2010 05:20:12 +0000

Colin Mugging for the Camera at Le Bonheur (Post-Ops)

Our little fledgling has returned to Target House for good, following his last inpatient stay at St. Jude (barring unexpected events, of course).

While we will spend every week day at St. Jude, our trips to the second floor will be restricted to social calls. This milestone [...]

Home Sweet St. Jude

Mom — Thu, 28 Jan 2010 06:44:36 +0000

Life doesn’t offer real do-overs, but there are times when an experience follows the parallel track of something that has come before. Returning to St. Jude after less than a week at Le Bonheur, I had the feeling that I was given the opportunity to completely repeat the past but improved in every way.

Rewind

When we [...]

I’m In!

Mom — Wed, 20 Jan 2010 17:40:38 +0000

The news of the impending loss of Colin’s port was sobering, but we put it behind us as we launched into the holiday weekend.

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Even at St. Jude, things slow down over three-day weekends, and during this period we only had one appointment, a lab check on Sunday to see how his magnesium was doing.

On [...]

Our GiantKid

Mom — Sun, 26 Jul 2009 05:21:00 +0000

Today, among other things, the family went off to a Ronald McDonald House outing for GiantKids (children with cancer). The event took place at Camp Kiwi, which also happens to be close to home and provided an opportunity for Dad and Aidan to crash at home for the night.

Much of the focus of these types [...]

Awaiting the G-Tube

Mom — Fri, 24 Jul 2009 04:23:24 +0000

On Wednesday, Colin was scheduled to repeat the swallow study, though it was widely thought that he would likely fail. Melissa, who did the first swallow study, sensed this and asked to visit him clinically before conducting a study. She suggested that he needed at least a week before retesting.

However, we realized that the question [...]

Signs and Omens

Mom — Mon, 20 Jul 2009 03:52:34 +0000

The unlayering of knowledge and understanding that comes with the process of an unfolding medical situation is distressing, frustrating and immutable. The challenge presented itself from the first moment when Dr. Michelin in the Danbury Hospital emergency room said, “it’s not good news.” A second instance was when Dr. Wisoff revealed that the tumor had [...]

Post-Surgical Review

Mom — Wed, 15 Jul 2009 01:34:32 +0000

Dr. Wisoff gave us a quick post-surgical report, even before surgery was over (Dr. Harter was overseeing the closing procedure). He was able to successfully remove 95 – 98% of the tumor, which is great news and significantly more than we had hoped for in Westchester.

There is a small bit of stubborn tumor left on [...]

Making Pinocchio a Real Boy

Mom — Mon, 06 Jul 2009 00:50:31 +0000

Colin has really enjoyed becoming a boy again, rather than a patient or freak. Although he enjoyed the quasi-liberation of the cart at the hospital, it was a poor replacement for a return to human society.

Even though Colin has big physical limitations compared to his pre-admission condition, he is now able to sit independently (without [...]

…And Still Planning

Mom — Thu, 02 Jul 2009 01:19:57 +0000

Today, we had the meeting with the surgeons and oncologist to discuss our treatment plan for Colin. It was a difficult discussion because we also went over the possible complications and likely recovery period. It is nearly certain that Colin will lose all or some of the hearing in the right ear because of the [...]

Still Planning

Mom — Wed, 01 Jul 2009 01:58:44 +0000

Tuesday morning, we had scheduled a meeting with the two neurosurgeons and oncologist, but due to logistical snafus, it never took place. We saw Dr. Mohan for the first time in a week and chatted for a bit about Colin’s progress, and Dr. Tobias gave us a copy of an article on surgery for a [...]