John Oliver is tolerating radiation pretty well. Better than I am! Due to the decision to have Ollie sedated, we are often one of the first treatments of the day. The good news is we often get to see the other kids who are in the trenches with Ollie, but the bad news is we have to leave our house very early and battle traffic. Twice this week the radiation machine was broken, resulting in a morning rush that was replicated in the afternoon. By the time I take care of work, a little cleaning, and Ollie maintenance, I am exhausted.
We have the routine down – get to the radiation center, sign in, wait until we are called to the back, change into a gown, wait some more (Ollie usually hides under a blanket to discourage any attempts at small talk), and then I hold Ollie on the table while he is sedated. Once he is out, I return to the waiting room, listening for the door to open. I like to be there right when he wakes up, so I stand in the hall, alternately playing games on my phone, reading news articles, replying to emails, and impatiently glancing up every minute or so. One of the side effects of the sedation medicine is vivid dreams, and the first time he woke up yelling, “The Atlantians are alive! The Atlantians are alive!” We had watched the movie Atlantis recently, so that was easy to figure out. He also told me that Willie Wonka made an appearance. Sometimes Ollie has double vision, and he has decided that the duplicated object is actually a ghost version of the real-life object, and he has a super power that allows him to see these ghosts that are invisible to the rest of us.
One member of the anesthesia team, Mr. David, has endeared himself to us (and every kid receiving radiation – it is incredible to watch the way they all light up when they see him). He is very friendly and comforting, evinced by the fact that John Oliver remembers his name – always a sign that Ollie considers the person a friend. Ollie even lets Mr. David carry him after treatment, and Ollie rarely lets even me carry him. On Friday, as Mr. David carried a loopy Ollie to me, Ollie told him that he loves him. It was pretty sweet. And it is such a relief when Ollie gets along with the medical professionals. I am always a little anxious about how he will behave when interacting with the myriad of grown-ups that now invade his life. Understandably, he is wary of them. His first question is always, “What are you going to do to me?” Sometimes it is just a friendly visit, but sometimes it is a needle poke, or medicine, or dressing change. I always appreciate it when he cooperates, but he is seven and cares very little for social graces. As a result, Ollie will sometimes grunt or otherwise demonstrate his annoyance, and the best thing is for the grown-up to do is get down to business, do what they need to do, and then leave him be. However, the most common response is for the grown-up to attempt to understand and pacify his grumpiness. The problem with this strategy is that the more someone pushes Ollie to talk about what is troubling him, or explain ad nauseum about the importance of the task, the more irritated he becomes. I intervene, telling the person that he just wants to be left alone, but surprisingly, it often takes multiple attempts before the message is received. It really is SO nice when Ollie gets along with the grown-ups!
Other than occasional machine failures, the radiation process has been smooth, albeit early. We have done it every day, except weekends and Thanksgiving (they opened up the center just for Ollie and Charlie Jean, our friend who is also kicking neuroblastoma’s butt, on Friday after Thanksgiving). So we have only one more treatment, and radiation will be another checkmark on our list. We then get a nice long break from treatment until January 5, when Ollie will be admitted to the hospital to start immunotherapy. He will be re-scanned and biopsied on December 18 and 19. Feels like a million years away.
Due to the fact that Ollie had radiation on the days preceding and following Thanksgiving, we had a low-key celebration here in Montevallo. It was an enjoyable gathering of friends and family, and Ollie even ate a little bit. He insisted that we put up our Christmas tree, which took very little convincing – even though our house is small, and the tree makes a tight space that much more cluttered, I love the warm, shining lights. But perhaps the most exciting event was the return of Star, our elf on a shelf. Apparently seven years old is the peak age of elf excitement. Ollie started to ask about Star before Thanksgiving, and I reminded him several times that Star does not come back until December 1 (this was because Star still had to be located). On the morning of December 1, Ollie woke early and asked me to help him find the elf – I mostly wanted to say, I already know where he is, so can I stay in bed? Ollie asks about the elf first thing each morning. This whole elf thing can be a lot of pressure – I am terrified I will forget to reposition Star, especially these days when I crash so early. More than once, I have woken up in the night to remember to move him. My mom overheard Ollie talking to Star, telling him that a lot has changed since last year. He told the elf that he has cancer, and showed him his noodles to get medicines, and tube to get food. Yes, a lot has changed since last year. Most days I am living in the moment, trying to be on time to appointments, being present in the classroom, responding to students’ requests and needs as quickly as I can, and encouraging Ollie to eat. But when I am reminded of life before cancer, it can be disconcerting. Even right now, as I think about this, I feel my chest get heavy and my eyes tear up – how in the world did we end up here?