I apologize for the dumb title but, well, just watch it. Shawn picked out the music. This will be my shortest post ever because I have nothing to say other than this video. This was Shawn’s last day in radiation. Chemo was up next but this was a really big deal. I upgraded my WordPress account to the paid version so that I could post this video.
If you scroll through my past posts, you can find anger and frustration. Lots of it from Shawn and from me. As recently as last Monday, I raised my voice here. Loudly. We were in the ER. At that time, and now looking back, I believe my anger was justified. Other times, in retrospect, my anger was not justified. Shawn’s anger was always justified. He has been dealt a bad hand and it took some really good people a really long time to figure out what to do with that. If anyone has a right to be angry, it’s Shawn.
During radiation, Shawn transitioned out of anger and into something else. Happiness? Hope? Relief?
We arrived at CHOP on Monday morning to begin Shawn’s chemotherapy. He would begin in the clinic and move to the inpatient floor as space and time allowed. Our primary doctor in neuro-oncology was out of town at a conference so we’d planned to see an attending that we have worked with most in the past. But she was unavailable so we saw a different attending. She was amazed by the change in Shawn. We have worked with her, too, but not since Shawn turned happy. And also not since Shawn turned healthy. I mean, other than the cancer. Which is still there. Waiting. Silently. This doctor used that term. Silent tumor. It’s there but not there. It’s there but we can’t see it and we never have, not as a primary tumor. Shawn would call that a Ghost Tumor if we asked him for a name.
That morning the oncology clinic was overtaken by a foundation called Michael’s Way. I can’t tell you much about this group other than that, like many organizations, they appeared in our lives at the exact right moment when we didn’t even know we were looking for them. We checked in at 8:55AM, a few minutes before our scheduled arrival time. People were wheeling in carts of pizza and soft pretzels and cookies and bottles of water and juice. Professional photographers were scoping out their space. Shawn looked on excitedly as a Giant Connect Four game was being set up. “Can we play that?” he asked. “We’ll see” was the only response I could provide. Promise nothing and hope for the best has become my only answer in pretty much every situation here.
My goal for myself for this admission was to not be angry. Actually, my goal was to not show anger. Time after time I’ve begged myself to not be angry. To not overreact. To go with the flow. I’ve failed every time, including last Monday in the Emergency Department. When I reacted with anger at a situation that a supervising nurse practitioner ultimately apologized for and wrote up some sort of report and told me that they are working to try to resolve the problems that caused this particular incident, I watched Shawn as he sadly asked me to stop arguing. The look on his face reminded me that, again, my reaction was justified but that I was right at what cost? What did it fix? What did it harm?
I decided that I would fake happiness. Not in an artificial way, although it would probably be somewhat plastic. I can’t usually control how I feel. Most people can’t. At CHOP I certainly can’t control most of what happens to us. And not feeling angry is probably going to take some more time. But I decided that I can control how I act and react.
The first two days went smoothly. Way more smoothly than my nightmares had anticipated in the weeks leading up to this. I was in a groove of faking happiness and it wasn’t even all that hard. The oncology floor is unexpectedly calm and quiet. Those haggard looking parents and grandparents I’d previously observed in the elevators getting off on Floor 3 now just seemed to be people doing things in a very matter-of-fact way with their mostly happy looking kids. Parents getting off on Floor 3 (with me) now seem less haggard than when we lived on other floors. Less stressed. Less angry.
The Oncology floor is, so far, pretty quiet. Boredom has been our biggest complaint. He is experiencing some side effects of the chemo (vomiting and diarrhea) but so far it’s been less than he’s had in previous admissions when he was so sick and they couldn’t figure out why. Back when we were treading water. Shawn has been relatively unimpressed with chemotherapy so far. “The external shunt on the PICU was WAY worse!” he tells me. We played bingo. We played games with volunteers. The same people he used to grunt at and shoo away are now fun.
This morning, day three, I finally had a chance to employ my Don’t-Show-Anger plan. If I were a teacher at this, I’d give myself a C-. Passing, but barely. Shawn got angry shortly after his breakfast arrived. I don’t know why and neither does he. A bacon and ham omelette ultimately ended up on the floor and walls like so many meds and food before. I raised my voice. I yelled at Shawn. The nurses came in. They closed the door. They told me it was ok. The doctor later told me that it might be a reaction from the steroids they’re giving him to help with the potential reactions to the chemo. I was embarrassed. We’ve been here before, without the drugs. I’m still so unclear about discipline issues at the hospital. How to react. What to do. How it’s different than at home. How to parent here in this artificial parenting environment. If there’s no manual for how to be a parent in the outside world, there’s certainly no guidelines for what to do here.
I’m hesitant to write this, because this is the kind of thing that when everything goes to shit in a few hours I’ll regret and want to come back and retract, but so far this has been one of our easiest admissions. Little drama and even less trauma. My current internal question for myself is – has this admission been easier because I decided to be less angry or am I less angry because this admission has been easier?
The kids finish school this week. The last day for the district is Friday. We had only one or two snow days this year so they will finish as scheduled, unlike the last few years. Lilly’s last day is Friday. Shawn will finish on Thursday since he’ll be in surgery at CHOP on Friday. He missed the last day of school and the first day of school. In between those those days was an unusual first grade experience.
Lilly is “graduating” from fifth grade. No more elementary school for her. As of Saturday, she will be a Middle Schooler (god help us all!) although the kids call the time in between grades “summer grade” rather than placing themselves in the next higher grade, like I eagerly did when I was a kid.
Shawn is finishing first grade. Well, sorta. Shawn didn’t attend more of first grade than he did attend. I lost count and can’t easily look it up but I estimate that out of 180 days that the kids were supposed to be AT school,
Shawn missed at least 100 of them. Probably more. But in late May, sitting on the floor in our living room with his home-instruction teacher, Miss Johnson, Shawn officially completed the assessments that indicate that he knows what a first grader in our school district is expected to know. I admit, I’d been concerned about this. Shawn had been a smart and interested but average student throughout preschool and kindergarten. He wasn’t “advanced”. This stuff doesn’t come naturally to him. He needs help to learn. He needs school. And he wasn’t there more than he was there. There were weeks that went by that he didn’t even brush his teeth or eat, let alone do anything academic. But here he is, finishing first grade.
In retrospect, Shawn’s earliest obvious symptoms showed up the first week of summer vacation last year. I took a week off from work to hang out with the kids and on Monday we set off to explore caves and coal mines in central Pennsylvania but Shawn got sick in the car while getting gas and breakfast less than a mile from the start. We went back home. The first of a series of “car sicknesses” and “stomach bugs” that would follow him throughout the summer. The vomiting that in mid August would still cause me to say “at least we’re getting the sickness out of the way before school starts in a couple weeks” and eventually take him to his pediatrician by the end of the month because something seemed really wrong by then. By the second week of the school year, we’d begun our CHOP adventures. It would be almost seven more months until we figured out what was actually wrong. Shawn would become very angry during those months. He would respond well to only one category of CHOP people – his teachers.
As the admissions piled up in September and October, I diligently called the school to report each absence and sent in the Discharge Papers and the Return To School notes signed by a doctor. I always asked to pick up Shawn’s homework with the intent of keeping him on target with what his class was learning. Maybe not all the way but as best as we could when he was feeling ok. We practiced spelling words and did math problems and read books from the play room on 9 South when he was feeling ok.
One day while I was out running at CHOP in October, I got a phone call from his school. His homeroom teacher, Mrs. Klein, and principal, Mrs. Gregitis, were calling to discuss a more long term plan, the kind that they create for kids who are out for extended periods of time. I slowed to a walk and talked with them. “Don’t worry about the homework,” they said, “it’s intended to reinforce what’s being taught in the classroom and he’s not IN the classroom.” They gave me some things to focus on instead. We initiated the process to start hospital instruction.
Later that month, during Shawn’s longest straight admission, he began working with a hospital teacher, Ryan. For the first time at CHOP, Shawn was engaged, responsive and happy. He looked forward to each day’s hour with her. She told us how wonderful it was to work with our school district, how responsive they were. When we went back to CHOP inpatient in January, I was disappointed to find out that Maria would be our new teacher, not Ryan, since Shawn liked Ryan so much and he responds best to people he already knows. But he instantly loved Maria, too. He loved all his teachers and I began looking forward to it as the time that Shawn would be happy. When Shawn refused to cooperate with the doctors, I told them that if they want to watch Shawn’s speech, movements, and behavior, come watch him when he’s with his teacher. They’ll see everything they are looking for.
By March we knew that the root of his problems was cancer. A cancer diagnosis opens a lot of doors for a sick kid that being undiagnosed does not. One of the social workers asked if Shawn might be interested in the Monkey In My Chair program. When we explained to Shawn that it means that a big stuffed monkey would sit in his seat at school when he wasn’t there, he excitedly said yes! The monkey came in the mail a couple weeks later. Shawn named him Happy.
It was a terrible year filled with numerous hospital stays, a lot of pain and sickness, and, well, eventually a cancer diagnosis. Childhood probably doesn’t get much shittier than all of that. But other than his family, his teachers were the people he loved the most throughout this year. Even when he pretty much hated everyone else.