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.

Sam-ism #10

October 13, 2009 (age 2)

Sam and I were in the store walking by the aisle of trashy romance novels when suddenly he pointed to a book and shouted, “Mommy!” I looked over all of the provocative cover shots of scantily clad ladies arrayed in a half-swoon.

“Which one is Mommy?” I asked.

Chapter Fourteen, Radiation and Percentages

I was thinking of everything as a hurdle to leap over. Each surgery, radiation treatment, round of chemo... each task getting us a step closer to an imaginary finish line. I was holding "the end of treatment" in my mind as a destination. I also had moments of overwhelming awareness that the journey itself was all of life.

Each tiny moment is all of life.

April 23, 2012 

4:05pm
Hitting the road, heading back to Portland today for the first round of radiation tomorrow. Wish we were headed to the coast on such a beautiful day. I'm longing for sand between my toes! Bright side: I'm getting to spend a ton of time with my kiddo. :)

Sam-ism #9

September 17, 2011 1:21pm (age 4)

Me: lying on my stomach on the living room floor.

Sam: climbs on my back, "I'm a cowboy and you're my cow." Snuggles down, hugging my neck, "I love you, cow."

"I love you too, cowboy."

"Now I say, 'Yee haw!'"

"Yee haw!" I say.

"No mommy, cows don't say yee haw. That's what cowboys say. You say,'Moo!'"

Chapter Thirteen, The Time Between (continued)

The day Sam had his radiation simulation (also the day of his lumbar puncture), he got four tattoos. The tiny dots, like blue-black freckles, form a constellation in the shape of a giant 'T' across his belly and down to his groin. The 'T' was the map used for lining up the giant machine that directed the radiation into his brain and spine.

He also had his radiation mask and body mold made. The mask, made of hard plastic mesh, perfectly matched the contours of his face. It was designed to be bolted to the metal table he would lie on for the doses of radiation, keeping his head in the same precise position each time. The body mold was like a rigid foam bed, formed to him and used to hold his limbs and spine in alignment.

The mask was creepy and made me glad he was to be sedated each time.

On April 19 we headed south to spend five days at home. It would be the longest time we'd spend in our house for the next two months.

Sam-ism #8

May 27, 2012 (age 4)

Reading a bedtime story about a sick little kid with a hero inside himself who helped him battle pain, illness, and sadness.

The illustrator personified pain as a red, masked guy... a mix between a devil, Boba Fett, and a Mexican wrestler.

I asked Sam if that's what his pain looked like too.

He considered rather seriously for a moment, then said, "It kind of looks like that, but it also kind of looks like bad fish."

Chapter Twelve, The Time Between

The time that came between surgeries and the start of radiation was strange. We were feeling our way through Sam's changed abilities, navigating options, sliding out of the surreal feel of being hospitalized and into the realization that life had been irrevocably altered.

Sam, Grammy, and I packed some stuff and headed back to Portland to have the surgery to place Sam's portacath.

We had gotten into the Ronald McDonald House easily the first time, back on that Friday when Sam had his morning MRI in Springfield and then his first surgery that evening in Portland. I didn't realize what demand there was for RMH services, nor did I realize how hard it would be to get back in sometimes.

April 15, 2012 8:09pm

Sitting in a Portland hotel room (the Ronald McDonald house was full). Sam turns on the TV and, for a minute, the Simpson's are on. He's instantly glued to it. "Whoa, Mom. This is weird."

Sam-ism #7

April 14, 2012 9:59am (age 4)

"A rocket is kind of like a big, giant octopus in space.”

Bike First!

I ran across this site today and immediately thought of a bunch of kiddos (and grown ups!) who would love this camp.

It's put on by the Northwest Down Syndrome Association. The camp focuses on teaching kiddos with disabilities how to ride bikes, but anyone age 8 and up is welcome-- regardless of ability.

Financial assistance is available.

http://www.nwdsa.org/what_we_do/bike_first.html

Chapter Eleven, "The most expensive gas bubble" and "Home again, home again, jiggity jig"

Italics are Facebook posts from two years ago. Intermixed are comments in regular text that I am adding today.


April 11, 2012

10:58am

Watching some TV, drinking some of mom's water, waiting for PT to come play. Possible discharge home today... :)














April 11, 2012 1:58pm

One of us is napping, the other is packing, both of us in preparation for heading home this afternoon. The discharge order is officially in and we'll hopefully leave in time to miss traffic, but you know how long discharge paperwork can take.....

Sam-ism #6

December 11, 2012 (age 5)

Advanced gender concepts with Sam:

Me grumbling about other drivers in the front seat, him listening intently from his car seat.

"But how do you know it was a 'she' driving that car, mom?"

"I guess I don't, really. It looked like a she, but the only real way to know if someone's a she or a he is to ask them."

"Why?"

"Well, because someone could look like a she to me, but actually be a he. Or the other way around."

...thoughtful silence from the back seat, then he says, "Or some people could look like a she *and* a he, but really be neither. Not a he or a she, just a person."

Sam-ism #5

July 11, 2012 8:53pm (age 5)

Sam: "Mom! Mom! Look at me! Look at me!"

Me: "I'm looking!"

Sam: (standing on top of an overturned laundry basket, naked from the waist down) "Remember how Sid the Science Kid said he was the King of Cake because he LOVED cake sooooo much?"

Me: (standing on the kitchen floor, fully clothed) "I do remember, buddy."

Sam: "Well I'm the... KING OF SALAD!!!!"

Chapter 10, Recovery continues, sleep-talking-boy, and shunt internalization.

Two years ago today, Sam had his EVD (the brain drain, aka "the tube") removed and replaced with an internal drain, called a VP shunt.

The reason he needed it was because there was too much pressure in his head still and he needed to have a "pressure release" valve. A "VP shunt" is a ventriculoperitoneal shunt and essentially re-routes any excess fluid that is in the ventricles (or center part of his brain) into his peritoneum (or abdominal cavity). The fluid gets re-routed if the pressure gets too high, his body re-absorbs it, and it's all good.

Sam-ism #4

August 20, 2012 3:38pm (age 6)

Science by Sam.

Sam: "You'd have to make the balloons heavier than the weight so they'd fly away."

Me: "You mean lighter than, right?"

Sam: "Oh yeah. The balloon would have to be lighter than... wait. It would have to be strong. You'd have to put A LOT of air in there."

Me: "Or a lot of helium."

Sam: "What's helium?"

Me: "It's the gas they use to fill up balloons that makes them light enough to fly away."

Sam: "Yeah, they'd have to put a lot of helium in there. Or a rock. That would make it really strong."

Chapter Nine, The Poop Fairy (continued)

I have decided to give Sam quotes their own posts, because I think they're that wonderful.

Click on "Sam-isms" in the Posts by Topic list right over there ------->>

Today is another day that I will let my Facebook posts from the time stand relatively on their own.

April 7, 2012

So for a more real update than Sam flipping off the camera:

He's amazing. He has been angry and depressed since surgery. His smile has only rarely appeared. My brain knows that the combo of pain, fear, steroids, lack of sleep, and unfamiliar routine/environment can make anybody super cranky, but my fret-o-meter has been working itself into a bit of a tizzy. What if poking his little brain caused a personality shift? And this kid who's yelling at me, "I hate this. Never! I will never poop. Never! No!" is the new Sam?

Sam-ism #3

December 30, 2012 5:54pm (age 6)

At the Ronald McDonald House.

Me: "Let's go upstairs and forage for some dinner."

Sam: "Porridge for dinner?"

Me: "Sure, you can have porridge for dinner if you want."

Sam: "No! I don't want porridge. Bears eat porridge!”

Food issues

One of the (several) super scary times that I had when Sam was ill was the time period when he was unable to eat. I haven't yet gotten to that part of the story in my "Chapter" posts, but it was awful. He was practically skeletal and was literally falling down because he was starving. We worked it out (thanks to the magic of IV nutrition and appetite stimulants), but food remained a struggle. Many of the old favorites became rejects and many of the "new faves" were horribly unhealthy. I said, many times, that I thought I might need to get him a salt lick.

This article talks about food, how it tastes during chemo, why it tastes that way, and what to do to make food more interesting.

another link:

http://www.npr.org/2014/04/07/295800503/chemo-can-make-food-taste-like-metal-heres-help?utm_medium=facebook&utm_source=npr&utm_campaign=nprnews&utm_content=04072014

Chapter Eight, Introducing The Poop Fairy

Driving home after an oil change to finish packing so we could hit the road earlier today:

"So, when we get home, I'm going to get crackin' and get the car all packed and you're going to eat some food and take a nap."

"What does get crackin' mean, Mom?"

"Oh, it means get to work quickly and work hard."

"Oh, in that case, before I eat food and take a nap I need to crack out on going to the bathroom first.”

--- Sam and me, November 27, 2012 8:37pm



There's a funny skill that many of us who are healthcare providers have. We learn to balance our empathy with our need to protect our hearts and spirits from being broken by the tragedy we witness. The people who don't learn how to maintain that balance go one of two directions-- they either get hard and lose their empathy or they get emotionally exhausted and fragile. Some might argue that those directions are actually one and the same....

Sam-ism #2

December 16, 2012 3:00pm (age 5)

Talking to Sam about going out to a fancy restaurant:

"We could dress up and go out for dinner sometime."

"Dress up? I could wear a suit!"

"A suit? You don't have a suit, but we could get one for you."

"I do too have a suit, mom!"

"You do?"

"Yeah, my Captain America suit."

Sam-ism #1

4:39pm December 9, 2009 (age 2)

Sam: "It's in my tummy."

Me: "The fruit bar is in your tummy?"

Sam: "Yes, fig bar."

Me: "Actually it wasn't a fig bar, it was a strawberry bar."

Sam: "In my mouth and in my tummy, it was fig."

The themes of "over parenting", "helicopter parenting", and how different parenting is now (as compared to when I was a kid) have come up in multiple conversations of late. I remember being gone for HOURS at a time starting when I was pretty little. Playing in empty lots, running around with the neighbor kids, going to the park, walking up the dry creek bed and hoping there wasn't a flash flood in the mountains that blasted down and washed us away before we knew what had happened (because that happened sometimes and we all had stories about hearing the loud rush of water as it tumbled boulders downstream), catching weird worm-like creatures and pollywogs in the pools left behind after a rain, I bet our parents knew where we were considerably less than half the time.

Chapter Seven, Diagnosis Day

At 31 flavors.
"Ma, they have clown cones. Does that mean there are clowns here?"
"No, buddy."
"Oh. Well next time we come I want a clown cone, but with none of that clown stuff on it.”
---Sam and me, September 3, 2012

April 5, 2012

Diagnosis day.

I had already been told that chances were quite high that Sam had cancer. In fact, the oncology team had come by and introduced themselves before Sam even had his craniotomy. I remember Dr. N, the neuro-oncologist, in the PICU hallway saying, "We wanted to meet you, just in case. But honestly, we're hoping you never have to see us again."

We had to see them again.

Chapter Six, Post Op

Opening day 16 on the advent calendar.
"What do you think is going to be in there, Sam?"
He ponders. "Hmmm.... I think maybe a little shark."
-- December 16, 2011 7:31pm



April 4, 2012

I am going to let my Facebook posts stand mostly alone for this day. We still didn't have a diagnosis-- that would come the next day. Sam was doing well and, even though the day was hard, the weight of my fear felt like it had lightened the tiniest bit. From my bed in the window nook in our new room on the 10th floor, I could watch the helicopters come and go from the rooftop landing pads. It was good to lie there in the night, when the quiet and relative stillness made everything feel scarier than it seemed in the day, and watch those metal pods whirl in and out. Each one holding a human experiencing a pivotal life event. Each one connected by a million invisible strings to the lives and hearts of countless others. It made our trials seem smaller, less personal. At the times when it was hardest to bear what Sam was going through and my inability to protect him from all harm, it helped me to hear the rotors beating and know that we weren't alone in experiencing difficulty and we weren't the worst off.

Then, as now, anything that offered perspective was good.

Chapter Five, The Surgery Party

Me: Day 22: today I am thankful for music. Singing with my kiddo is the best thing ever.

Janey: what songs does he like to sing with you?

Me: Moonshadow is his current favorite. He belts the bridge like a crazy person. It's hilarious! He also chooses Swing Low Sweet Chariot a lot. He always has a bunch of questions when we sing that one.

"Mom, what are vainjels?"

"What?"

"You know, (sings dramatically) 'a band uh vaaaaain-jels come in for me'. And why are they coming in for you?"

-- Facebook post and comments from November 22, 2011



April 3, 2012

I don't specifically remember how we spent the morning. I have flashes of memories, but most of them center around trying to not appear stressed out in front of Sam. I do remember going along with the story that a bunch of people were going to come get him and take him to a "surgery party". He got some premedication and was having a great time as we all paraded down the hall on the way to OR.

I remember kissing him in the hallway, smiling until my face felt like it was going to split, and telling him that I couldn't wait to hear all about his party. I don't think I cried until he was gone.

I remember how badly it hurt to watch them wheel his bed away.

Dr. S had told us the surgery would take "five to fifteen hours" depending on what they found when they got in there. We all hunkered down to wait.

Jordan, his family, and some friends waited in the waiting room.

Papi went back to the Ronald McDonald House; knowing him he spent the day cleaning or finding repair projects to volunteer for.

Grammy (my mom) and I spent most of the day in Sam's PICU room. There were two rocking chairs set up side by side in the void left by his missing bed. The monitor screen was off. The IV pump was off. The TV was off. We sat and, as we rocked, she knitted the arm of a sweater. She took apart and reknitted that same sweater arm a bunch of times during the months that followed. I held my cell phone, waiting for the calls that would come from the OR to update us on how things were going.

Chapter Four, Do Not Unplug the Coffee Maker

"Princesses can't fly, right Mom?”
--Sam, December 12, 2011 8:45am

April 2, 2012

It's funny, looking back, to realize how few days we actually spent in the PICU. At the time, it felt like a year. Or longer. There weren't windows to look out of in the unit and day/night routines were interrupted by the constant monitor alarms, assessments, meds, and vital sign checks. Time passed in a weird way. It felt like pushing fire through cold molasses, odd bursts of melting speed mixed with the slowest slow imaginable. There were crystalized moments of brilliant, painful awareness too, hanging bright like frozen dew on a spider's web.

There was a baby (or young toddler perhaps, I was just judging age by sound) in the room next to us who spent quite a while screaming. Sam got worried, as he often does when other people are distressed, and asked me to put on the call light so he could tell the nurse to "stop giving that baby colace". Colace is a stool softener and was, at the time, the worst tasting medicine Sam could imagine. To his four year old mind, there was nothing worse they could have been doing to that kiddo than administering colace. I wish that, months later, when it was Sam's turn to be screaming in the PICU, colace was still the worst thing imaginable... but that's a story for another day.

Chapter Three, Wagon Ride

"I'm gonna grow way, way up and then I'm gonna be THE MAN." --Sam July 14, 2010 3:21pm, after being measured against his growth chart. My thought at the time-- "I am not sure if I should be excited or terrified."


April 1, 2012

The picture from this day became the picture that represented Sam a lot during the course of his treatment. I love the funny little smile he has on his face. You can see it below. That picture got used for multiple fundraisers and was posted on about a bajillion people's Facebook walls along with good wishes, prayers, and healing thoughts. We were so fortunate in all of the love and support we received.