Chapter Fifteen, Spider Webs and Vincristine

April 26, 2012
10:19am



Banana slugs are made of awesome.... when you're 4 1/2 years old

Sam was so crabby when I took that picture. The fact that the banana slug was able to distract him from the fit he was throwing speaks volumes for just how cool slugs are. He hadn't been able to eat that morning, he felt bad, he was still uncomfortable, and we were on our way to radiation. All of that combined to make one unhappy kiddo.


10:26am

Good morning, Portland.

We looked out this window every time we sat in the lobby waiting for Sam's name to be called for his radiation treatment.


12:46pm
3 treatments done (that's 10%)! Waking up today after treatment was so much better than previous days. I am so impressed with how hard the pediatric anesthesia team is willing to work to make Sam as happy and comfortable as possible. And have I mentioned that Sam is a total trooper? Because he is.

The peds sedation team worked so hard to make sure Sam was getting what he needed. All of the nurses and most of the docs were amazing and very attentive. I was still thinking in percentages. 10% felt like we were actually getting somewhere!

7:19pm



One of the child life specialists told me that kids with brain tumors often draw spiderwebs and/or spiders. This is a drawing I found at home from before he was diagnosed. Interesting, huh?

8:07pm (photo comment)
The child life specialists work with the kids (mostly through developmentally appropriate play) to help them understand what's going on and express themselves. This specific one has a background in art therapy. She didn't explain why, just that she'd noticed it with relative frequency.

8:25pm (photo Comment)
I asked Sam what this was just before I put him to bed tonight. No hesitation, "A spider.”


April 27, 2012 6:44am
Small planes flying overhead always sound like summer to me. I awoke this morning to the quiet drone of a small plane, melodic birdsong, sweet sounds of a kiddo still asleep, and fresh, cool air pouring in through the window. What a wonderful way to start a day. Good morning, friends.


3:08pm
People are funny. For example: the woman who had three tiny dogs in a plastic tote (no lid, don't worry) on her lap while she was being wheeled into her radiation treatment. The dogs looked happy, the woman looked relaxed, and it cracked everyone in the waiting room up.... so I'm thinking it worked well for all parties concerned.


A 3 pm radiation treatment was torture for Sam. Because he was being sedated for every single treatment, he couldn't eat six hours before each treatment. I believe that he would have had troubles eating and maintaining his nutrition anyway, but I also think that taking away his prime eating time for many days in a row set him up for failure. It's unfortunate that scheduling couldn't have been arranged differently.

We headed home for a couple of nights right after my angry, screaming boy woke up from being sedated.

Here he is before waking up.



8:55pm
Want to hear something cool? Sam and I just got home after a VERY long day to a refrigerator and freezer stocked with amazing food. So incredibly thankful for all of the wonderful people we are privileged to know.

10:16pm
Home for the weekend. Car unpacked. Cooler unpacked. We're fed. The bathtub is awash with a flotilla of tiny, plastic dinosaurs. Child jammied, sung to, and abed. Week one is accomplished and laundry can wait 'til tomorrow. Hallelujah and good night.

10:26pm
Oh, one more thing before I hit the hay.... quotes of the day (there are two):

"When they give me the sleeping medicine, it makes me sparkle." (Sleeping medicine = propofol)

"Cowboys ride cows. Horseboys ride horses. I am going to be a cowboy when I grow up."


April 28, 2012
5:38pm



I thought that Sam was mildly allergic to dairy. Turns out it was his brain tumor making him sick all the time. So today, ice cream cone at 31 flavors. Watch out sugar high, here we come!


6:28pm



Carnival, prize won by mom's ace dart skills, watching rides spin around (but not riding any... that's too scary), chatting with toothless carnies. Today is rad.


April 29,2012 10:45am
Oh, chemo. You really are nasty. One dose and we're already disinterested in food. Between that and the thrush it's almost impossible to find something (other than ice cream) that's palatable. Oh well, at least ice cream has protein, right?

11:21am (comment)
We'll figure it out though. Sam's usually a really good eater and likes pretty much everything. Once we get his mouth feeling better and figure out a schedule for meds/food, I think we'll be pretty well set. I haven't had to deal with him being too picky before and it's frustrating, but this is really small peanuts compared to where we've been :)

Eating would become the biggest challenge of the next few months. Vincristine (the chemo drug he was getting at the time) wasn't as much to blame as the radiation itself. We ended up desperate enough that I tried bribing him with every junk food I could imagine. He rejected all of his favorite foods (even ice cream eventually). He tried and rejected things he'd never eaten before (sugar cereal, soda, cheetos). Where he had been a kiddo who said that baby kale was his favorite food, he ended up being a kid who couldn't stand eating anything that wasn't saturated with intense, artificial flavors. Even then, he was more likely to lick the flavoring off of whatever it was than to actually eat anything.

And it wasn't thrush... it was radiation burns to the back of his throat.

Next: Chapter Sixteen, Drama Bad.