In the final week of what will hopefully be Shawn’s final chemotherapy treatment, a strange thing happened. I began to make connections like crazy. I’d written previously about the isolation I’ve felt at CHOP and my struggles to make connections in the early days of our oncology floor admissions following the isolation I felt during the undiagnosed months at CHOP with no disease affiliation when I felt no hope of making connections and began writing this blog in an effort to find some.
I can’t say that I did a single thing differently during our final scheduled chemo admission than I didn’t do for any of our previous oncology admissions. I was probably less angry. That might be a key difference. But that’s been a gradual process. I was probably only slightly less angry than I was a month ago and only slightly less angry than the month before that. I’m not sure that my anger level accounts for the uptake in connections that I’ve made recently.
Nearing the end of this segment is not the end. Not by a long shot. Don’t ever think that a family nearing the end of a child’s active cancer treatment is anywhere even close to the end. That will only add to their sense of anxiety and isolation.
I’ve made connections with at least a half a dozen families during this stay, at various stages of this process. Some have been at this for years. Some came here last Tuesday crying, “I knew something was really wrong, I just knew it!” in the room next to us on their very first admission. Some were on round two, seven years after round one.
That’s at least five times more connections than I’ve made during the previous admissions.
Shawn was also more open. He went to every play group, music and art therapy groups, and casual gatherings he could find. Even when those efforts were physically painful for him, he wanted to be there. It was such a contrast from months ago when he refused to do anything or a year ago when I got annoyed by the offers for him to come to a group. At that time, he was screaming in pain and they couldn’t even explain it let alone fix it, what good was a music therapy group going to do him?
The anger was still there. I again yelled and cried in the hallway. I cried on the bathroom floor. I cried myself to sleep more often than I didn’t.
Lilly has made some friends here this time, too. Other siblings. This stuff is indescribably hard for the siblings. We got to know a family that we met during our last admission. They were discharged on Saturday. We tried to get Lilly down here to say goodbye before they left. The girls had become fast friends, first meeting in a “sibology” group, and later having wheelchair races in the hallway. That kid came to our doorway several times on their last day to ask if Lilly was here yet. Finally I found out what time Lilly would be here. I went to their room to tell them. It was being cleaned. The bed was already crisply made for the next kid. All the kid artwork was off the walls. They were gone.
There’s a transient nature to this life. How dangerous is it to makes friends here?
For the first time in over a year, I have no guaranteed expectation of returning here. There’s a level of anxiety that comes along with that reality. Life here became our New Normal. Now we need to find another one.
And then it was our turn to be gone.
As our final admission came to an end, discharge number twenty, I kept thinking of the end of the last episode of Seinfeld when the four main characters get off the train and Elaine is left standing, waving, and says “Well, see ya.”