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."



The hotel was fairly horrible. It was cheap though, as far as hotels go. The smell of cigarettes permeated the place, even on the non-smoking floor where our room was. The tiny refrigerator didn't work and there was no place to cook anything. The cooler full of food that Grammy and I had packed anticipating being able to use the full amenities at RMH was mostly unusable at the hotel. We opened the windows and listened to the chatter of the McDonald's drive-thru below as we ate cold stuff; salad, deviled eggs, string cheese...

That night was the first of many that Grammy, Sam, and I would spend in one room. Though Papi wasn't there that night, he stayed with us many other nights. It was very strange, after not having lived with my folks for over two decades, to end up sharing a single room for long stretches of time with one or both of them. I appreciate, beyond words, the fact that they were so solidly there for us. I could not have done it alone.

Several people volunteered places for us to stay after I posted that we were in a hotel. It's funny, looking back, how resistant I felt to staying in people's homes. At the time, I had no idea why I felt so uncomfortable about the idea. Now, I think it was in part because I didn't want to intrude or be a burden, but it was also because I felt like I had no control over anything. Being in our own room, either at the RMH or at a hotel, felt like I could be in charge of *something*.

April 16, 2012 9:01am

Sam's in getting his port placed now. It was kind of a rough morning. Nothing like waking a kiddo up way too early, not letting him eat, and then making him wait until everyone under the sun has come to ask if he has any allergies. It is so interesting being on this side of medical care. Here's hoping that this goes smoothly and that we can just relax and rest up today. *fingers crossed*

1:37pm

Orange popsicle this time. Heavens they're tasty.






1:39pm

Port placement went well. Cross another hurdle off the list.

That afternoon, after Sam's portacath was placed, a room opened up at the RMH. We were lucky to get in. We moved the stuff out of the stinky hotel, unpacked the cooler into the tiny section of refrigerator that was ours to use, and settled in.

I had my first really big lesson in how terrible Sam is about reporting pain and at how terrible I am about judging his pain level. Being a nurse, you'd think I'd be pretty good at it. I have worked with lots of post-surgical patients, I have had surgery myself, I know how badly it hurts... but when my kiddo looks me right in the eye and says, "No, I am not hurting." I desperately want to believe him, and do, until he's suddenly screaming and unable to function because of the pain.

I still struggle with this, even after two years of medicating him. I still want to believe that he doesn't have pain. I still want to avoid giving him narcotics if possible. Watching a video of him playing with the train set in the dining room at the RMH that day, I can see how painful he was and how blind I was to it at the time.

I wish lessons like that didn't have to come at the expense of his comfort. I think I am doing better now than I was then. Lord, I hope so anyway.

April 16, 2012 6:15pm

To all of my awesome people who are at the Papa's Pizza in Springfield chowing down and raising some dollars for Sam's medical bills.... Thank you, thank you, and thank you again!! Hope you're all having a fabulous time :)

We're chilling at the Ronald McDonald House, eating some chicken and rice made by one of the fabulous volunteers. Sore after portacath insertion today, but coping well under the circumstances.

Oh, and Sam wants me to tell you that "Pizza starts with 'P', the same letter as starts poop." *insert crazy giggle fit here*

Ain't 4 years old grand?

That first fundraiser was amazing. I talked about it already in Chapter six, but I can't talk enough about how blown away I was (and still am) by how many people took the time and energy to help us. It was, and is, so humbling and amazing.

April 17, 2012

4:53pm

Hearing test, first portacath access, radiation simulation, lumbar puncture, and a red popsicle.... check, check, check, check, and check. Now to Grammy's house for family time and then home tomorrow (or the next day) for some R & R. This kid is such a trooper.






April 18, 2012 10:49am

Quiet house. Grandparents and grandchildren out for a walk. Sunlight brightening the windows, filtered through high clouds. Fire in the wood stove crackling. Sister taking a loooong shower, uninterrupted by her little one. Me on the sofa, alone for the first time in weeks.

Life, for all of the uncertainty it holds, is so good.


Up next: Chapter Thirteen, The Time Between (continued)