Since learning of Ben’s relapse three weeks ago, it’s been a whirlwind of activity. Surgery. End of school. Chemo. Throwing up. Trips to the hospital. Co-pays. Learning just how bad Matt’s new insurance coverage is. Home nurses reminding us how to administer IV fluids and slow pushes of benadryl. And, of course, the incessant worry. Is Ben okay? Is Madeline okay? Will we be okay? It’s been just a little stressful.
Two days ago, Ben and Madeline left for Camp Wapiyapi. This camp is specifically for cancer kids and their siblings near Estes Park, Colorado. It’s been the goal since Ben relapsed to make sure that he gets to go to camp. It’s something that he truly enjoys and looks forward to every year. During Friday’s chemo infusion, Flori (his nurse practitioner) came in to state her concerns about Ben going to camp. She was worried about his dehydration and the fact that the Topotecan and Cytoxin (or, “Topless Cyclone” as one neuroblastoma family long ago had called it) had made him pretty darn sick. Truly. This chemo cocktail hit him like a ton of bricks. He vomited every ounce of bile available – even depleting his reserves. It was a very long week. Anyway, Flori said that she wanted to get him on IV fluids to boost him up in preparation for camp. His blood counts still looked pretty good so she wasn’t concerned that he’d need platelets or red blood cell transfusions while he was away.
So, Friday night, the Home/Hospital nurse came to show us how to hook Ben up to the pump. He got two bags of IV fluid, which helped quite a bit. Then, his dad took him to the hospital on Saturday morning to get his Neulasta shot that helps stimulate his white blood counts. While at the hospital, Ben broke out in a rash of hives. It was determined that he had become allergic to one of his new meds. After some Benadryl, the hives subsided. He had a restful night and felt strong enough to go to camp Sunday morning. Madeline was nearly manic in counting down what time it was and alerting me to what time we needed to leave in order to make it on time. She was a little like Rain Man wanting to watch Wapner. She was so excited.
When we arrived at camp, everyone was genuinely happy to see that Ben had made it after all. I expressed my concern that Ben still had hives but the nurses seemed to be okay with giving him oral benadryl as needed. Ben’s companion, Tanna, is awesome. I told her that I was slightly concerned with leaving him because he’d just had a really tough week and he was probably going to start losing his hair at any moment. She reassured me that she would be there for whatever he needed and would call me daily with a short update. So far, she’s sent me a couple of pictures reassuring me that Ben is, indeed, having a great time and isn’t feeling poorly at all.
Before the campers paired up with their companions, the leader of the Ben’s team, Austin, gave me a quilt. On that quilt, they had embroidered the lyrics of “Blackbird,” which is the song I always sing to Ben when he’s not feeling well. Of course, I started crying. How did they know the significance of this song? How did they know the comfort it brought both of us over these past nine years of cancer invading our lives? How did these precious people understand that this beautiful act of kindness would put me at ease in leaving my amazing children in their care, even after a trying week of chemo? It was a priceless moment.
Both children seemed thrilled with their companions. Madeline was more than ready for me to leave. Ben was his wonderful self, worrying about how I was doing, because he knew I was having a hard time with leaving them. He said, “Don’t worry, mom. We’re okay.” And, with his advice close to my heart, I left them there.
After spending a little peaceful time in Estes Park (hey, have to drive through Rocky Mountain National Park as long as I’m up there) I came home and slept. And slept. And slept. In fact, I’m still in bed. Two dogs surrounding me and my laptop propped against my legs as I type away. I’ll have to get up eventually, but for now, I’m going to sleep while I’m actually excelling at it. Stay in the groove, right?
Through Tanna’s pictures, I’m reassured that they are, indeed, doing just fine at camp. They look happy. Ben looks healthy. This experience is priceless for them and I’m so grateful they have it. For once, the ever-robbing cancer didn’t alter our perfect plan. Ben gets to be a normal boy. Madeline gets to see that there are other siblings dealing with cancer, too.
And mom gets to sleep.