A couple of notes for the reader: The Emily Whitehead Foundation was founded in honor of Emily Whitehead, the first pediatric CAR T-cell therapy patient. This Emily, referred to as simply “Emily,” is not to be confused with “Sweet Emily”, our dear friend from Mississippi who died this spring. I mention them both in my writing about the Believe Ball, but will always use the “sweet” distinction.
This post took me a while to write out and even longer to decide how to format. It’s a draft, not a final, but I don’t want perfect to be the enemy of good. Some day, I’ll have an editor and a proper process and you can all remark back that you’ve been here from the beginning. Thanks for reading and good on you if you make it all the way to the end.
I’m hoping to record my reading of the imaginary speech, because it was hard to write the nuance I’d speak to. If I get to doing that, I will be sure to let you know. For now, written word is our limitation.
CAR T and Relapse.
I looked at the CAR T Families Facebook page, another three families have relapsed. One, 15 months after CAR T, the others at 24 and 27 months.
Twenty…..seven….months….. eight hundred and twenty-one days of waking up and thinking survival was in hand.
CAR T. It’s good medicine, but it’s not great.
Advocacy, we can hold many things.
My dad visited in September. The month of Childhood Cancer Awareness and we spoke one morning about how I never could quite figure out how to advocate during the month where even Amazon sends out packages in gold boxes. I told him that I didn’t exactly understand the point of advocacy. I know that not everyone will care about pediatric cancer, not because they are monsters, but because we are all just focused on our own life’s meaning and if you are lucky enough not to be marred by pediatric cancer, you are lucky enough not to be very aware.
“Mimi cares about social justice, Hannah cares about foster care, you and GV care about coastal preservation, and I don’t really know that it makes sense to scream about pediatric cancer just because that happens to be our plight. Everyone has their own soapbox, what makes each of us think that ours is the one that everyone else must commit to?”
“Well, sure, but we humans can hold many things. I can hold conviction about costal wildlife preservation and CAR T therapy. Or concerns over the manatees in Mosquito Lagoon and concerns about pediatric cancer. You know, Jane Goodall said, ‘Only if we understand, will we care. Only if we care, will we help. Only if we help, shall all be saved.’ That’s why you have to advocate, so people understand. They may not care, but they won’t be able to care if you don’t give them the choice.”
Spot on, Dad, spot on.
So, I keep writing. Writing about things that make cancer parents weep and laymen question the status quo.
Not just another black tie, 42%
I wrote the rest of this post on the flight home from Philly after the Believe Ball. I knew as the words poured hot from my finger tips that it was a bit spicy and, really, I wasn’t sure if I was going to publish it. But after reading about the relapses, I’m convicted not to leave the narrative of the ball as mere sparkly dresses and my little boys in cute suits. The ball was fancy, and healing and, really, so fun, but it was still a ball for cancer, for kid’s cancer, for kids who are not being healed by the status quo and are desperate for CAR T to work, desperate, and often relapsing in spite of it.
CAR T, it’s good medicine, but it’s not great. And a ball for science that is good, but not great is worth celebrating, and worth pointing out that children are still dying.
Celebration for the strides and conviction that we must keep listening. I’m wondering if we can hold both?
In Beaudin’s risk satisfaction, 42% of children will have relapsed by 24-months post HuCAR T. (Details on this for parents of HuCART patients in the footnotes.)
42%. Almost half. Half the kids will need more treatment, more treatment after a long list of treatments they have already tried. The possibility of an event-free survival (EFS) outcome getting smaller and smaller.
So while the photos are beautiful, they are not the end. The ball is not just sparkly dresses and my little boys in cute suits, this is not just another black tie event. I hope that once you understand that, you will care. Once you care, you will help, and then, only then, if you help, ALL can be saved.
Believe Ball 2022, Main Stage Presentation:
There were three distinct groups of attendees. The CAR T families, the doctors and nurses, and those from the corporate industries that support the science. And for most of it, we all felt one and the same.
There were a couple moments when the differences in the attendees purposes, concerns, and circumstances felt palpable.
Like when Vaibhav’s dad spoke on the main stage about his son’s experience, ending with the horror that creeps behind each of us, Vaibhav’s death in September of 2020. Each and every CAR T family in the room listening, reverent, hearts outstretched. This sweet family, here with us despite their son being dead, because this treatment is good, but it’s not good enough.
The part that felt the most haunting as Vaibhav’s dad shared, was the growing chatter coming from the back of the banquet hall. The audio at the venue was terrible and the tables near the back couldn’t hear what was happening on stage…and there was an open bar…and for God’s sake they were just sales reps who had gotten comped tickets because their mega company was a sponsor and were they not here to network after all?
Either way, as I listened with one ear to Vaibhav’s dad plea through tears for more funding for CAR T research, I listened with the other to the tipsy laughter of the people behind me.
That’s when it came to me. I envisioned walking up to the stage and kindly borrowing the mic from Vaibhav’s dad. I’d make an exaggerated throat clearing noise as I got the attention of even those tables in the far back.
“Hi! Yes, all of you, YOU! There in the back, near the bar! Hi!!” I’d say as I smiled with a wide grin. They’d be caught off guard to be called out from the main stage. They would wonder if I was an ally, if this was part of the program. “Yes, You! Specifically, table 27, the table in the corner that is laughing so freaking loud that I can’t hear the speaker. Ahh, yes, YOU GUYS!” The crowd would let out a bit of nervous laughter, similar to a group of school children who has been discovered to not be paying any attention to the teacher.
“The speaker, up here, Vaibhav’s dad, yeah, um, his son, well, he is dead. DEAD! Like, not here. Not one of these cute kids with the precious “CAR T Warrior” buttons. One of the kids that YOU asked for a picture with so you could show it to your team when you go back to the office on Monday. Vaibhav is dead because even though this science is good, it’s not great. And so kids are STILL DYING!”
Everyone would be starting aghast at me, so I’d lighten up for a moment, “And I get it, drink your free drinks, and continue looking fly in your fancy suit. Yup, I see you there in the black-tie without socks, bold, I saw you during cocktail hour- you look fly.” I’d laugh as the crowd loosened and figured I, too, was here for a good time.
Then I’d hit hard, “But for a moment, would you kindly, shut up with your small talk bullshit and listen to Vaibhav’s dad. Listen to him tell you, YOU table 27, that his son was here and now he is not.”
“I get it, the audio in this place is terrible, legit, like I am having trouble sticking with it and I am in the second row, but if you can’t hear him, then look at the grown man crying on the big screens that I know you can see, and consider for a moment that you are at a pediatric cancer fundraiser. If you can’t hear him, then sit in silence and give the man the respect he deserves. Because his CHILD gave his life, so that your job could continue to be relevant. If none of these kids sign-up for this, you have nothing so sell.”
Gosh, everyone would be at attention now, wouldn’t they? What would I say next?
Perhaps I’d then launch into a freeform explanation of how this isn’t just ‘another black tie event’ for some of us. “For some of us, this is the first time that we’ve met another family that knows what it’s like to promise their child, ‘You’re gonna get better, sweet boy,’ while wondering if you are lying through your teeth as you sign-up on the dotted line for an experimental treatment. And now, Vaibhav’s dad is telling us he made that same promise and his son died.”
Maybe I’d explain, “My son is here and the cute sign he held up for the photo op that you all ‘ooo’ed and awe’ed’ at, said, “18 months cancer free!” But the other girl sitting at our table with us is 23 years old and has been living this nightmare since she was 7. As a child she had 2 years of treatment, then relapsed, a bone marrow transplant, 3 years later another relapse, CAR T CD-19, 3 years later relapsed, CAR T CD-22, and now 3 years later she is here and alive and seeing a psychiatrist because her nightmares of relapse feel so vivid, and so real, that she is scared to fall asleep at night. So I am sitting here, talking to her, and now watching Vaibhav’s dad cry on stage while I listen to you guys laugh and am wondering, ‘WHAT DOES 18-months cancer free EVEN MATTER!”
“THIS (clap) IS (clap) NOT (clap) ANOTHER (clap) BLACK (clap) TIE! (clap),” I’d say aggressively and certain that the CAR T parents would stand up and applaud, while the corporate attendees would awkwardly clap knowing that all eyes were on them.
I’d explain to everyone that when we went to the documentary viewing last night, Beaudin asked if they had killed Emily (Whitehead) after the doctor in the film said, “So, we put her to sleep.” And I had to explain to him in a hushed whisper that this kind of ‘put her to sleep’ is different than the kind of ‘put her to sleep’ that we spoke about when Uncle Rio’s dog died last month.
“This isn’t faceless research, you guys, this is a 10-year-old who JUST LAST NIGHT asked if the doctors were maybe, kind of, killing the patients because 4 years in to this and he still doesn’t understand who gets to survive and why.” And that would tee me up to explain that it was only after 2 1/2 years of treatment that my son explained to me that he thought that he was dying and coming back to life, each time they gave him propofol.
Some people would be tearing up, but ever damn one of them would be listening. I’d explain that it was my husband that was the handsome fellow in the light blue checkered sports coat, “standing out from all of you in the black ties.” More light laughs, “And would you like to know why he isn’t wearing a tuxedo. Because when we had to buy something to wear to Sweet Emily’s funeral, Joshua couldn’t bring himself to wear black. This isn’t ‘another black tie,’ this is life and death for us.”
That’s when I would explain that every time someone asks why we are in town, whether it be the Uber driver or a hotel bellman, and we offer a high-level answer like, “We are just in for the weekend, a quick trip.” My son, Jude, interjects, “My brother has cancer, but he didn’t die and so we are here for a giant party.”
“The last 4 years of our life has been impossible and hard for each of us, but the horror of this has been so normalized that my child can’t understand why we don’t tell everyone we meet that his brother has cancer.”
The crowd would be silent and I would wonder if it was too uncomfortable, me up here, laying it all out. I’d decided the only way out was through and I’d go all in.
“So again, I’m just asking if you could you kindly shut-up and pay attention to the dad explaining that his son died, because… well, gah, I am going to have so many questions to answer later.”
I’d point out into the crowd, to Beau at Table 12, and say, “He was 6 when he got cancer and we didn’t tell him that he could very well die. We didn’t explain to Jude that he may loose his brother. We promised them both that we had the best medicine and that Beau would get better. And then he relapsed, and then our Sweet Emily died, and then last night, during the documentary, these two brothers heard the doctors say over and over again how many other kids have died from exactly this, and now Vaibhav’s dad is on stage with his son’s picture behind him and my boys are hearing, yet again, that even with the best medicine, kids can still die, AND WE CAN’T EVEN HEAR THE CONVERSATION BECAUSE YOU DICKWADS CANT STOP NETWORKING.”
I’d pause and they would think it was for emphasis, but it’d actually be because I’d feel uncomfortable that I’d used the word ‘dickwads,” in front of Dr. June. I would try not to stop and think about what that word even means, because now every last one of those smug sales people would be listening and we would be about to start the live auction and I would need every last one of their heart strings wrapped around my finger. I’d be ruthless and I’d launch into telling them about a future that has yet to pass.
“You guys…” I’d say with such emphasis that everyone would wait for what I was about to say next, “later tonight, when some of you have had one too many, and other of you are going home wondering if the connections you made will land you the next deal, I am going to walk back to my hotel room and watch my boys dancing there way in front of me and hot tears are going to spill over my flawless make-up as I weep, ‘this was what we needed,’ and when we get into our room, me and my husband and my two boys are going to do an epically corny group hug as, Beaudin tells us that “this was the best day of [his] life.” Jude is going to fall asleep asking me repeatedly, how many people commented about his dancing skills.”
“We are going to wake-up tomorrow morning and on our Uber back the airport casual questions are going to lead to me re-telling Beau and Jude the story of Beau’s diagnosis, that to me feels like yesterday, but to them, feels like folklore. And Beaudin is going to remember some other girl he met in therapy and he is going to ask if she is dead, too, because now he is wondering if everyone before him has died. I am going to explain, “Miley? No, she isn’t dead. She is ok, bubba.” And we are both going to look out the window during a long silence. Then Beaudin is going to remark, ‘Is it bad that I relapsed?’ And before I can answer, Jude is going to interject, ‘Yeah Beau, it’s bad…a lot of kids just die,’ because whether we had fun dancing last night or not, we all understand a little bit more about how fragile this all is.”
My time would be coming to an end so I would try to land the plane.
“I don’t expect you guys to understand what it means to wear this button and pose for the photos ops,” I’d say as I pointed at the ‘CAR T FAMILY’ button pinned over my heart. “But I do expect you guys to take a moment and step outside of yourselves and consider what it means to be Vaibhav’s dad and to sit-up here on stage and ask you all for money because even though his son didn’t survive, maybe others could…”
“Enjoy the drinks, schmooze away, but for a moment, for Vaibhav’s dad, please shut-up…and listen… and then… get ready to give us all your money.” Everyone would laugh, some would feel convicted, but every single CAR T family in that room would be thankful I’d done it.
“For the Children!” I’d raise the mic like a glass and cheers towards to crowd. I’d end with a grin and then flip the mic back to the emcee as the crowd let out applause and a couple of whoops.
CAR T. It’s good medicine, but it’s not great. And we won’t stop until it saves every last one of them, even if the people in back laugh while we speak.
HuCAR T data:
You can read the published data on the recent HuCAR T study here. The long and short of it being that for patients that had already been exposed to CAR’s, like in a Kymriah product, their relapse-free survival rates were 74% at 12 months and 58% 24 months. You will observe that this means that with more time, survival gets less likely, not more likely. This is hard for the layman to understand, for as time moves on they want you to get more hopeful, not less.
Read more about Believe Ball 2022
Feeling pretty damn proud of myself right about now. Why, you ask. Oh, well I just stopped my freefall down… Continue reading The (well?) adjusted sibling- Part 2
Never miss a post, get them delivered straight to your inbox: