His room was already dark, which for 9:30pm on a summer night felt early. It had been a hard day, everyone had been crabby. He was asleep, I should leave well enough alone. But I wanted to end the night feeling like we hadn’t just been feisty all day. It was shallow, short sighted, and my own. I turned on the hall light so that his room remained dark, but I could see a path to his bed. I walked over and swept the long hair off his face and leaned in for a kiss.
The basics. Simple. I turned back to the door to leave.
“Mom, I just don’t want to do PowerWands again….” he sounded like he was crying.
I looked out at the illuminated hallways and heard the trailer for MythicQuest coming from Joshua’s computer. I listened to Hatchet rustling around in his kennel, bedding down for the night. I quickly ran through how I would get out of this conversation. Partly because I didn’t want to have it, but mainly because I have 36 years of experience showing me that concern and worry is often better addressed with a good night sleep and the light of day.
I walked back over to his bed and saw that he was crying, quite significantly.
My exhausted self eeked out, “Please Beau, let’s not talk about this tonight. The appointment tomorrow is just conversations. Power Wands aren’t until Thursday, let’s just get to bed.” I regretted it as soon as I said it, the cold words confronting his innocent tears, and found myself crawling into bed to stroke his back. He curled in to me the way he only does when he is about to crack wide open and I knew that this conversation was far from over. There would be no turning off his concern with the logic of a good night’s sleep.
“I don’t want to have the Power Wands, though, why do I have to do this again?!” The tears started rolling.
When we left the hospital after our Day 28 results meeting we stopped in the lobby. I handed Beau his iPad and told him to play on it while I had a quick call with Dad. I walked a handful of yards away and gave Joshua the update. The b-cells are returning, this didn’t work, there is more work ahead. What more was there to say? There wasn’t a decision to be made at that point, but it also felt suffocatingly heavy to hold myself for the entire flight. I looked at the people streaming in the main lobby doors and wondered how many of them were on their way to get news that would make them feel like they were drowning. I gathered Beau and we went down the escalators to the parking garage.
As we walked to the car I said, “Hey Beau, did you notice that I was crying in that meeting with the team?” I figured he had, but I wasn’t sure. I hadn’t been vocal in my tears, but they had been streaming down my face so obviously that the nurse handed me a box of Kleenex. Beau had been heads down on his iPad, however I figured he had seen, or maybe more accurately, felt it. You can feel when hope leaves the room.
“Yeah, I saw that, but I didn’t really listen to any of it.”
“Do you want me to explain what we were talking about?”
“Meh, not really, I just want to know if I am going to die.”
“Hmm, well I suppose we are all going to die. But I don’t think you are going to die anytime soon.” I lied through my teeth. “And anyway, if you were going to die, do you think I’d tell you walking to the car in a dark parking garage!? I mean, sheesh!” I laughed, desperate to bring out a levity that I didn’t have.
“Right, haha, Like, you’re gonna die! Now please find your car among the yellow balloons, Parking Level 1,” he laughed.
Later that day, as we waited in the terminal for our delayed flight I mentioned to Beau that we may be coming back to Philly. I explained that our choices were to start-up two more years of chemo, or come do more CarT in Philly. He quickly snapped back, “Oh for sure Philly, I never want to do two more years of chemo!”
“Even if it means coming back and living here again, for 7 more weeks?” I was desperate to go home and never come back. I couldn’t fathom how anyone could choose returning.
“Yeah, I don’t mind that. I just hate chemo.”
On the last day of school I made a point to get a picture with Beaudin and his teacher. She had been such a light to us during the school year, I wanted to be sure to get a photo of them together. In the small talk that accompanied the process I mentioned the word “relapse”. Beau quickly interrupted, “Wait. What’s a relapse?” I stared at him and wondered what to say. We have tried to toe the line of being open and honest with him, while also not giving him additional worry to carry. And at first we’d been careful not to use the word relapse. But I just figured, with all this: with Philly, and me crying at the Day 28 results meeting, and stopping in the lobby randomly for me to walk away for a phone call, and when I stopped to fill-up the rental car with gas and just sat at the station and gasp-cried hot tears, and then when I explained that things hadn’t worked how they wanted and so we’d have to return to Philly. I just figured when we’d spent two years marching towards EOT (end of treatment) only to detour and spend 7-weeks in Philly, well, I guess I figured he had realized he had relapsed.
“Relapse. You know, Beau, it just means there is more treatment to be done.”
I held my breath as he integrated my response, would it satisfy him?
“Ohh, ok cool,” he ran off to say summer good-bye’s to a classmate.
“Beau, the PowerWands aren’t scary., last time you did great….”
“YES THEY ARE! They are terrible!” he interjected.
I wasn’t sure how hard to push. We had been quite worried about the whole process the first go round, in January, and in the end, Beau nailed it. Moments after the placement procedure he took this picture and said, “Send this to grandma, tell her I am a robot!
“Beau, they are scary, you are right. But remember last time when you got them, you took that funny picture for Grandma, then we laid in bed all day and watched t.v. and had tons of snacks?”
“Yeah, but it stung!”
“Yeah, bubba, it did sting, didn’t it…You are so brave, Beau.”
“Mom! I am NOT brave, I am JUST SCARED.”
“I know sweetie…this is totally scary,” I wasn’t sure exactly what “this” I was referring to, but it had nothing to do with PowerWands. We laid in silence for a couple minutes.
“I hate this. Why do I have to have more CarT?”
I did my best to explain. To explain that the cells hadn’t lasted as long as they were meant to, that the new CarT would give him a 60% chance of not having to do chemo.
“We have to hold the space that we believe this could work for you, Beau.”
“But 60%?? What if I am one of the 39.99999% of kids?” The apple doesn’t fall far from the tree.
“Right, but that means out of every 10 kids, it will work for 6. What if you are one of those 6!?”
“Ugh, I just think I will be one of the 4. It didn’t work last time, why would it work this time.” It wasn’t a question, it was a statement.
“Sometimes I feel the same way bubba, but this is what we have to work with. So our work is to practice believing that this is going to work. You are strong, your body is strong, and maybe the only thing we need to get better at is actually believing that this will work… you know?”
“Yeah, ok. Can we bring goldfish to eat…. and maybe get a new lego set?”
Beau sat by the light of his desk lamp and authored a list of all of the creature comforts he wants bring to t-cell collection. He also penned a schedule for the morning leading up to the hospital including, “Go out to breakfast and get chocolate chip pancakes, go to Target and collect supplies (goldfish, kombucha, 2 legos), watch Star Wars & Lego Masters.”
The tears had long dried up as had my hopes of watching a show with Joshua who was surely asleep by now. I got up to leave the room and told Beau to get to bed. I felt the warm, achy peace that follows to hard conversations around cancer. It is still scary, but we were moving forward. That’s true bravery, right?
7 thoughts on “Bedtime Treatment Conversations”
Betsy, I was hoping to see you yesterday at soccer camp pick up- Nicole had told me she saw you and I picked up Nora. I looked around, but didn’t see you. I yearned to just hug you without any words because my words just don’t come. My heart fills up with love and emotions and prayers, but my words don’t seem to come together. In deed, “Bravery is moving scared”. Thank you so much for sharing this journey…I can’t articulate how it touches me…
My heart follows you to Philly and everywhere this journey leads you.
Love, Tobye Burgin
Thanks Tobye, love to you and Robert.
Love that robot guy. Thanks for sharing this update. Wish I could fix this for Beau and you all. Sending prayers and love.
You are an amazingly brave Mom. Relentless forward motion, words that are not mine but have been spoken by people much braver than I. Beau is loved!
thank you friend, Beau feels so very loved by all his new friends/community- what a gift that is!
I am so touched by your brutal honesty in this, Bets, with so much love between you both.