Wednesday, March 9, 2011

Teaching Moment

As a parent, we look for teaching moments. Some are more welcome and comfortable than others. Sometimes we're well prepared and other times we're caught completely off guard and grasp for any sensible or ridiculous facts. I was prepared for Monday's teaching moment, but a year ago, didn't think the practical application would come for at least 10 more years or ever, for that matter. Monday's lesson: Tattoos.

William finished off his meeting with the radiology oncologist with three tattoos. One dot each. He winced and complained and was not a fan. It was awesome!!! I wish my phone battery hadn't died so I could have video taped it for posterity and to remind him in later years how unpleasant he thought it was. We had a lovely conversation discussing the hundreds of needle pokes and likely pain an artistic tattoo requires. He was not impressed. I'm crossing my fingers that it sticks for life. The lesson, not the tattoos.

right side (freckle?) It's the one in the middle.

left side

The tattoos are simply markers for the radiation machine to insure the proper areas are radiated. They are what they are and we move on. Radiation will begin on the 21st and he'll endure 12 cycles. (1 cycle/day M-F). It is a fairly low dose so the side effects should be mild, the most likely being fatigue. He's already always tired so that doesn't change anything.

This week and next week he is getting the long list of tests and scans to assess his progress after the consolidation phase (transplant). I received the call Tuesday afternoon informing me of the times William needs to be at the hospital on Wednesday and Thursday. I scrambled to cover childcare bases and when we arrived at the hospital this morning for a CT, audiogram, and bone scan, I was informed that they had no record in the system for the CT and bone scan. By the way, William was fasting for this and he's not supposed to be in public places with lots of people. I was so frustrated, but tried to remain pleasant since the people I was probably allowed to talked to were not the culprits! After several phone calls and spending over an hour dealing with the mess, we were rescheduled for Friday for the CT and bone scan. What a headache. I'm really not going to miss this lifestyle. Really! Really!

Here's the upcoming schedule:
  • Thursday: GFR (kidney function), clinic visit, 2 blood draws, EKG, and Echocardiogram.
  • Friday:CT and bone scan.
  • Monday: bone marrow biopsy (still waiting for confirmation).
  • Wednesday: IVIG infusion in SF.
  • Thursday: MIBG injection.
  • Friday: MIBG scan.
  • Whew.
  • Monday: daily radiation begins.

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