This weekend we attended the Believe Ball put on by the Emily Whitehead Foundation (EWF). As I have mentioned in previous posts, the EWF is a large part of why we were able to get Beaudin connected with CAR T therapy as a path through relapse. I suppose I shouldn’t say it’s the only reason, but I tend to think it is.
In November of 2020, we were a relapsed family with few options. Our team in Colorado had said that the only option was to begin the relapse protocol. That would include more chemo, at higher doses, with more toxic variations. If we wanted the best go at things, it would also include cranial radiation. Don’t bother looking up the side effects of radiation, let me just cut to the chase, the whole thing was dismal. The clock that had been counting down since January 17, 2019 would restart, two more years of treatment and this time it was a hope and a prayer.
I felt like there had to be another way, there just had to be. We could not just keeping throwing toxic chemo at the wall and hoping it stuck. So when I came across the EWF webpage and saw that their mission was to find ways to get every child connected to a facility where they could “activate their cure,” through immunotherapy, I felt hopeful. Hopeful…. a feeling that relapse doesn’t exactly lavish upon families. Through the EWF website, I found the trial at the Childrens Hospital of Philadelphia and gave the information on it to our team.
“Oh, I didn’t realize that they were doing CAR T on first relapses,” our doctor told us.
Our doctor, who is part of the Childrens Oncology Group (COG)- the group that paves the way for how treatment proceeds- didn’t know about this option. And to some of you that may seem innocuous- ‘well, she can’t know about every study out there….’ which is one way to consider it. But when you are giving over the life of your child to someone, you damn well expect them to know every.single.possible option.
But when you are newly relapsed, or refractory, you quickly learn that this is no longer a trust fall in to the arms of your COG roadmap, but rather a free fall with a clock that is running out. In that free fall, the EWF was like our parachute. They helped us to understand which clinical trials we qualified for and how to get connected into those systems. They helped us see a path forward. They slowed down the clock.
So, when the EWF reached out and asked if they could bring us to Philadelphia to attend their annual fundraiser, we were eager to consider it. We were honored to be able to give back to them (turns out cute cancer kids help donors donate…) while also enjoying a weekend of pomp and circumstance to celebrate the last couple of years. But also, traveling to Philly isn’t exactly a quick trip, and frankly the the thought of going there any more often than necessary is a heavy lift. There were logistics to manage and schedules to consider. But celebrating the last couple of years isn’t exactly something that comes naturally, as you may imagine, so I really wanted to consider how we could make it happen.
When I asked Beaudin if he wanted to go out to Philly for the fundraiser he replied, “Um, sure, what do they need from me?”
“Need? Nothing, we will just go to this thing called a Ball. It’s like a fancy party.”
“Right, but, like, what do they need? What do I have to do?
“Nothing, they don’t need anything,” I said a little confused as to what he meant.
“Mom, like what procedures? Will they do a bone marrow biopsy, take blood, what?”
“Oh… no Bubba, they don’t need anything from you. They just want to celebrate you. That’s all.”
He looked at me confused, “All I have to do is go to a fancy party?”
“Yeah, that’s it.”
At that moment I knew we had to go, no matter the logistics. Beaudin needed to see that though his service to the science of CAR T therapy was noble and invaluable, he was more that a test subject. In the same vein, we decided it would be a perfect opportunity to bring Jude along for the ride. Sweet Jude, who has spent so much of the last 4 years dealing with the injustice of all the attention Beaudin has gotten, would get to attend a fancy ball and be celebrated for his role as part of the CAR T Family.
“Jude, do you want to come with us to a fancy party in Philly to celebrate CAR T families?” I asked introducing the idea to him for the first time.
“Can I dress-up?”
“You’ll have to…”
“Ok, perfect. I want a black suit, and shiny black shoes, and a really tall top hat… and a cane. I want to look like the Monopoly guy,” he fired off like he’d been preparing all his life for this moment.
The Believe Ball 2022 was a night to remember. “Everyone knows me mom, I am like a King,” Beaudin remarked half way through the event.
“Yep, Bub. CAR T Royalty!” I encouraged.
At the beginning of the seated program they brought all the kids who had received CAR T onto the stage for a photo and a rousing round of applause. In the back right, you can see the doctors who discovered the science and developed the therapy that has given each child on this stage their life. Can you imagine being them? I can’t even.
Looks at these precious children, these valiant CAR T royals! This pictures makes me weak at the knees. The hope, the trauma, the triumph, the unknowns. These children didn’t sign-up to be royalty in the immunotherapy realm and yet here they are.
It’s heavy, the weight of such a crown. It’s also majestic.
You guys are gonna die when you see how super fancy the boys looked, Joshua and I cleaned up pretty nice too. I can’t wait to share more about the weekend. Here is a sneak peak: