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. ♥


The elevator at the old Ronald McDonald House was a crazy, rickety-seeming thing. It smelled a little funny (and sometimes it smelled a lot funny, like that time when one of the other families boiled shrimp shells all day to make stock and the smell ended up being especially strong in the elevator... for days). It jerked and made a loud thumping and clanging noise every time it started to move. It took some getting used to.

Sam was incredibly sensitive to smells. It was one of the first things that changed when his symptoms were getting bad, back before he was diagnosed. We'd walk into someplace (like the grocery store, for example) and he'd say, "Whew, Mom. It stinks in here." He noticed any subtle change in scent.

These days his sense of smell is back to normal, or possibly even less sensitive than normal.

9:23pm

In the elevator.

Sam is suddenly wailing, "Mom! Maaaaaama!"

"What is it, buddy?"

"My tummy feels bad!"

"Does it feel hurt bad or vomit bad?"

Still wailing, "It feels drama bad!”


Poor guy. Drama bad indeed.


A lot of questions rolled in about Sam's condition. Here are some of my answers:

May 1, 2012

8:28am
@Meg- his neutropenia is mild. His absolute neutrophil count (ANC) is in the 1350 range.

@Kristin- all of the rapidly proliferating cells in the body are affected by chemo and radiation (like hair follicles, bone marrow production of blood cells, and tumor cells!) Plus, there is a good sized portion of marrow in the vertebral bodies, or the biggest section of solid bone in each vertebra. The fact that he is getting radiation directly to his spine will affect his white blood cell production in that marrow. Neutrophils make up about 80% of the white blood cells and are major players in immune defense. Neutropenic just means that his count is low of this specific kind of white blood cell-- one that we care about because of its relatively larger population than other WBCs and because of its frontline status in discovering and destroying invaders.

I like Susan's take on it... if his good cells are being offed, then the cancer must be too!


11:24am
Pukey and cranky interspersed with jolly hot wheels action. After today we are done with 20% of the radiation treatments!

*hums to self: "always look on the bright side of life"*


11:28am
Monty Python seems like a perfect source for a soundtrack of this experience! ;)


Remember back in Chapter Four when I talked about that other family in PICU, the one with the big boy with the injured leg? Here's more on their story.

6:12pm
It's funny how circles get completed in life.

When Sam was in PICU, waiting for and just after the surgery to remove his tumor, I met another family whose 14 year old, Ben, had rolled a tractor over onto his leg. Life flighted in with one parent, the other parent and siblings following on the road for 5 hours with no news, severed arteries, multiple surgeries (the longest being 14 hours), blood transfusions, skin grafts.... We moms cried together a few times, but the time I remember best was standing in the PICU kitchen crying with relief after his mom shared the news that his leg had been saved. "My boy has a foot." she said. It's amazing the ordinary things that feel like blessings in certain circumstances.

On the night before Ben's big surgery two babies were admitted and placed in rooms on either side of this kid. That night, after listening to the babies cry and struggle through treatment, he sent out a message on facebook to all of his friends, asking them not to pray for him and instead pray for the babies. He figured they needed it more than he did.
I was given an opportunity to see so much grace and the beautiful resilience of human beings while in those first terrifying days of this process with Sam. I saw it in the staff, the other families and kids, my own family, my own kiddo, and, of course, this young man.

Today when Ben and his mom rolled into the Ronald McDonald house, it was fabulous to meet him in person. It was fabulous to have his mom meet Sam. We had both spent so much time hoping for each other's children and to see them both doing well was wonderful. The best part though, was Ben, in his wheelchair with his wound vac dangling over the side, asking questions about Sam and when he heard that Sam was having a hard time eating he said, "Hey buddy, why don't you finish up your food so we can play trains." Of course Sam gobbled up his food. And then, this big, very cool, 14 year old hung out with my little guy and played trains.

Unfortunately, Sam ended up throwing up all of that food shortly after train-time ended. (Mac and cheese, if you were curious. Sorry for the TMI if you weren't.) It was bad. He hadn't eaten in days. He was getting skinnier by the moment. He still had pretty good energy though and I kept hoping we'd turn the eating issues around. I had quite a few friends respond to that previous post saying that they should have known to not read my posts in public or at work because I always made them cry...

7:28pm
Sorry to make you all cry... if it makes you feel better, I cried too! It's been days since I last cried, we've just been too busy for feeling too much. Seeing them today really brought about some strong stuff, all of the things I couldn't afford to feel (just in self-preservation, I would have been unable to cope) back in the PICU. It's good to get the chance to process some of that stuff now. Really the take away here is that people are so amazingly good. Now go hug a kid! Xxoo


May 2, 2012

2:07pm
Bummer news today. Sam's weight is down another pound. His ANC (measure of one of the types of white blood cells) went from >1300 on Monday to so low they called it zero. So he is at a very high risk for acquiring infection of any kind. Boo. Started meds to boost white cell production. Insurance is giving me the major run around about covering it. Today would totally suck if Sam weren't so much fun to play with.

2:32pm
Update: the case managers at this hospital, as I should have expected, ROCK. Insurance BS didn't stand a chance. ♥

May 3, 2012

We found a playground underneath the hospital.







Next: Chapter Seventeen, Getting Acquainted with the ER.