Sam-ism #12

November 2, 2012 (age 5)

On the bathroom wall at the Ronald McDonald House East is a hand painted tile that says "Bald is Beautiful".

Sam asks, "What's 'bald', Mom?"

Chapter Eighteen, More Adventures in Tube Feeding

This was the beginning of one of the worst times we had. I was so hopeful that the tube feeding would work. He was terribly nauseated, gagged and/or vomited a lot, and continued losing weight. I started having to give him shots to boost his white blood cell production. I have given lots of shots and while I didn't like giving him shots, I wasn't reluctant to do it. It was very different to poke my kiddo than it is to poke an adult patient, however.

The fact that I, his safe person, was giving him shots really undermined his trust in the world. He had always had a high pain threshold and was fairly tolerant of irritating or uncomfortable procedures, but me sticking him with needles (along with all of the other stuff he was dealing with) pushed him over the edge into a place where he couldn't tolerate anything.

Dr. Lerner on Coping with Fear, Anxiety, and Shame

“Everyone freaks out. Sometimes the best we can do with fear is befriend it. Expect it and understand that fear will always reappear. Eventually it subsides. It will return. The real culprits are our knee jerk responses to fear and the way we try to avoid feeling fear, anxiety and shame.

A letter to my son on Mother's Day

Sam,

First I want to say thank you for choosing me. It's hard to explain the significance of that to you right now. My convoluted ideas about souls/energy and choosing the path that creates the person we are supposed to become are a little over your head at age 6 (despite the fact that you are simultaneously going on 3, going on 16, going on 80, going on ageless).

Anyway, thank you. Even though it's been fucking hard (yes, I just swore in a letter addressed to my 6/3/16/80/∞ year old son-- I just don't have a word that adequately replaces that one in this specific context), there is nowhere I would rather be than on the journey that is our lives together.

Chapter Seventeen, Getting Acquainted with the ER

As usual, italics were written at the time. Regular type is commentary I wrote today.

May 4, 2012

3:19pm
29% of the radiation treatments complete! White count coming up a little, though still low (ANC 800, for those interested). Staying up in PDX for the weekend, just to be close to the hospital. Sam's still a beast after sedation, but he's tolerating it better and that makes it easier for the grownups too. Spent Wednesday evening in the ER because he's been having transient, stabby headaches. Bright side: MRI showed that the shunt is working very well. Possibly too well! It will be re-evaluated in about 6 weeks, but is not concerning for now. Headaches suck though. Eating better the last couple of days and his weight is, for now, stabilized. All good news.

Sam is VERY proud of the fact that he was able to hold still for 5 whole minutes while his head MRI was done and wants to tell everyone all about it. "I wore a helmet and they put pillows on the side so my head wouldn't turn like this or like that," *turns head left and right* "I was in the machine and it made LOTS of noises, clanging and clunking, but I had plugs in my ears and I held so still!" Sweet, funny boy.

Chapter Sixteen, Drama Bad

As in my other blog posts, italics are old Facebook posts, regular type is what I am adding today.

April 30, 2012

3:37pm

Back up in Portland for the week. Thankfully the Ronald McDonald house is able to (after a bit of run around) accommodate us. They really do provide an amazing service and, to my surprise, there's almost no branded stuff in the house. I figured there'd be golden arches at every turn, but other than the hand sanitizer, we're essentially free of the "big yellow M" (as Sam calls it).

We've already had round two of chemo and bloodwork, we're waiting now for radiation.

Bad, though expected, news of the day: Sam's officially neutropenic. Bad/good news of the day: radiation is late today because I let him eat an hour later than he was supposed to (bad move, mom), the good part: he ate.

Good news of the day: Sam's in great spirits and was a TOTAL ROCK STAR while they accessed his port. He is such a rad little guy. ♥

Sam-ism #11

July 28, 2010 5:17pm (age 2)

Sam just woke up from a long, late nap. After the usual ritual of 'hiding' under the blanket and me 'finding' him by hugging him blanket and all, he said, "I need a snack, Mommy."

"What would you like to eat?" I asked.

He replied, "I need some vegetables."