Most of what I’ve posted here so far has been pretty intense, and focused on the pain and horrors of this process. There’s more to it than that.
I started writing this last Wednesday. I wrote that first line around 5PM after a neat day in apheresis with Shawn’s father and aunt. We were inpatient and had just gotten back upstairs to our room. Shawn said “today was fun!” with a big smile on his face. We watched new release movies (The Good Dinosaur and The Peanuts Movie) that I’m told were purchased by one of the nurses, out of her own pocket, so the kids who are tied to the machines there all day can watch the good movies.
We’ve had our diagnosis, which is now officially PNET (Primitive Neuroectodermal Tumor) since March 18th. Since that day, when I held it together throughout the afternoon and then sobbed on the bathroom floor of 9 South Room 5 for about two hours after Shawn fell asleep, Shawn’s mood and behavior has improved. He still has negative reactions to CHOP staff but he’s beginning to open up to the process. I think he is as relieved as the rest of us to have a diagnosis and a treatment plan, even if it isn’t a good diagnosis and treatment plan and it has a poor prognosis. Shawn knows all of this. And he seems to be hating the doctors and nurses less and less as we go on. We were at CHOP yesterday for his central port placement and he brought one of his stuffed animals, the polar bear. A doctor asked him the bear’s name. Usually he grunts at anyone who asks him that question, and don’t you dare touch them, it’s even in his chart to not to do so. The kid who has previously hit and screamed and threw equipment around the room with far less provocation than asking the name of a stuffed bear simply answered the question. Poley. That’s the bear’s name. It’s Poley. He hugged the bear.
Today was day one of radiation treatment. His anesthesiologist was a doctor who has been with us since the beginning. Multiple GA procecures since September. He knows Shawn. Shawn recognized him, too. Shawn asked for today’s procedure to be done in a particular way. A way that made little sense to the doctors, nurses, and me and his dad. But he wanted it that way because it was what he knows. The doctor asked him why he wanted it that way. Shawn reverted to the defiant angry kid who throws stuff around the room, hits people, calls them stupid, and shuts down. But in the middle of this, he listened to the doctor’s questions. He answered those questions. He told the doctor why he wanted it the way he did. The doctor left, came back a few minutes later, told Shawn that he appreciated that Shawn had told him why he felt the way he did and that he could accommodate Shawn’s request. Shawn has a say in what happens to him. And he was able to ask for what he wants with words. After he was asleep the doctor and I talked and agreed that this is huge progress.
The nurses then told us that they can help us find a place to eat lunch. Oh, we know our way around here. We may be new to you, but we are not new here.
Back to last Wednesday. Aunt Lori is always a lot of fun and that day was no exception. She’s the “Fun Aunt.” Lori also tends to find people she knows or who know people she knows. She had a business connection with one of the nurses. She shared a birthday with another one of the nurses. It was fun to combine CHOP with Lori. Lori will also be helping us with transporting Shawn for his daily radiation treatments for the next six weeks. Lori is a great resource for this, having undergone her own radiation treatments for her own cancer at the same place very recently. Shawn knows this, too. He knows he’s not alone in this. Others have gone before him and will help him.
After the apheresis was done, we went to audiology for a pre-treatment hearing screening. Hearing loss is a potential side effect of the radiation and they will monitor this regularly. Lori and I went back to Shawn’s room to drop some things off while Shawn’s dad went into the testing with him. The audiologist told us where to wait when we got back. The room was freaky. It was like a carnival fun house. I’m sure it was intended to be fun and frivolous but we were hilariously unnerved. And we laughed hard and loud about it, not realizing that we were right outside the exam room and were laughing so loud that we disrupted the testing. Looking back, it probably wasn’t nearly as funny as we thought it was at the time, but the laughter was good.
The next day Shawn had his CT Sim to map his brain and spine for the radiation treatments. While he was doing that, asleep, I went to my car to drop off some papers and bags in anticipation of being discharged that afternoon. That’s when I discovered that my car battery was dead. I’d left the dome light on when we parked on Monday and hadn’t been back since. I started to get upset; one more thing, dammit. But I quickly stopped that line of thought. CHOP will fix this for me. I have jumper cables, I just need another car. I’ll go to the security office and ask for help. They were there quickly and efficiently, and of course they had their own cables that plug directly into the front of the security vehicle. Within 20 minutes I was fully charged and back in the waiting room.
I have wonderful friends and family. Shawn goes to school in a fantastic district. We’ve received financial assistance from organizations like Fred’s Footsteps and one of my running friends has added Shawn to a charity 5K that her church sponsors each year (more in a later post about my thoughts about the connection between racing and charity, and being a racer and now a charity recipient, this part is not easy for me.) My coworkers have helped me tremendously, both at the office and with emotional and financial support. Friends of mine from high school have sent him gifts. My running friends have sent gifts and run with me at 4AM or 7PM or whatever time I could make it. More than one friend has snuck wine into the hospital for me and stuck around to drink it with me out of coffee cups in the family lounge. Bill and Lilly come visit whenever they can and keep in touch every day through Facetime. They also take care of everything at home while we are away, despite Bill being sick too. Shawn’s teachers, guidance counselor, and principal have stepped up and ensured that Shawn has access to everything he needs to be successful in school and also offered support for our family. Despite missing over 80 school days (about 2/3 of the year so far), Shawn is on grade level in all subjects. In the past week Shawn has had a breakthrough in his reading ability. He reads almost everything now. He walked around CHOP today reading all the signage. He credits his hospital teacher.
We’ve had an amazing team of doctors and nurses and social workers and housekeepers and cafeteria staff and parking attendants and teachers and security officers who have all heard me yell more than I probably should. I ran into a couple of them today, in the hallway, and we chatted. It was fun. I thanked them.
This post got derailed last Wednesday when the doctors came in to talk to me after writing that first line and I went back to frustrated and angry and no longer interested in talking about the fun and good things. There is more crap in my life right now than anyone should ever have to deal with. Today he started the radiation treatments. I can’t say that I’m not scared shitless about this process. I can’t even say anything positive about it other than that I hope it works. But today was a good day. I don’t know what tomorrow will be but today turned out ok.
This post won’t be as intense or dramatic as some of my others. I’m not as good at writing happy as I am at writing sad and angry. And I’m not at CHOP right now, and my best writing happens at CHOP. But I was there today. And I’ll be there tomorrow.
There’s a balance between hope and reality. My goal right now is to find it. Until then, we’ll watch some fish, play Wii games, and dream about getting our own aquarium. He came home today happy.