Heavy is the Head

I imagine all the patients at the Believe Ball felt like royalty. Beaudin did.

Each of us got to wear a “CAR T FAMILY” button, and the patients wore their own badge of honor: “CAR T PATIENT.” Multiple times throughout the evening I saw people walk up to Beaudin and shake his hand, remarking, “It is so good to meet you, I am glad you are here!” I spoke a bit about that here. Many of my own conversations were sparked by people wanting to talk to me because of my family button status.

After the mixing during happy hour, we sat for the evening’s main program. The table assignments sprinkled a mix of sponsors with CAR T patients and their families. We sat at a table with two industry members, one a sales guy and another a woman who worked in R&D, and then another CAR T patient and her mom, Emily. I mentioned her in the post where I went off on the sales guy in the back of the ballroom.

**This Emily is not to be confused with our Sweet Emily. Nor Emily Whitehead who was the first pediatric CAR T patient. She is a third Emily.**

When you meet another cancer patient, and even more so after relapse, you know how to quickly spit all the details that matter: diagnosis, genetic favorability, treatment, CAR T trial info, months in remission etc. You cut very quickly through the crap and speak a common language that to the layman feels aggressive, but to each other feels like the comfortable fluency.

“So, what’s your story?” Joshua asked of them as we settled in to our chairs.

“Oh, well, we can tell you, but we don’t want to scare you!” Emily’s mom responded with a half smile. It was clear that she had learned over the years that though we were all relapsed, their story held details that made even the most attuned of us shutter.

After cancer, we got used to our story being hard for normal parents to hear. After relapse, we got used to our story being hard for cancer parents to hear. It’s an island, after all. But for Emily, her story just kept getting harder, for everyone.

Of course we told Emily’s mom that we wanted to hear everything, “Oh, don’t worry about scaring us,” we offered. Even after 1,500 days of hearing cancer stories, we sometimes fool ourselves into thinking we can stand outside of survival math and just hear a story for what it is.

So for Emily it was: diagnosis at 7, two years of chemo, then relapse, then BMT, then septic shock, then months in a coma, a stroke, then relapse, then CAR T, then relapse, then the loss of CD-19 (this is a deep fear for all CAR T families) then another CAR T…to summarize, anyway.

She was 7 then and 22 now and, well, this has been her entire life.

About the time her mom finished the high-level retelling, the program began and they asked for any CAR T patients in attendance to come to the stage for a group photo. Emily pushed back from the table and stood-up, pressing the wrinkles from her dress. She looked over at her mom, and just above a whisper, asked if her hair “still looked ok?” as she patted her head.

Emily and Beaudin followed the trail of children making their way to the stage, many of the kids waving to the applauding crowd. A royal procession.

“She was worried about her hair all afternoon,” her mom scoffed without taking her eyes off of her.

“All this survival, and she is still just a girl worried about her hair,” I replied slowly.

Neither of us took our eyes off of our babies but between us hung the dull ache of what it means for our children to have even a drop of vanity left in their precious bodies.

“I worried all afternoon about my hair, too. What a beautifully normal thing,” I added before trailing off.

The precious children, now gathered on the stage under the bright lights, were all smiling ear to ear. Emily’s mom and I both looked on with eyes full of tears. This is what it means to worry about your hair because this is what it means to survive.

“It’s like I’m royalty!” Beau would remark once he got back to his seat.

Royalty. Yes. But heavy is the head that wears the crown.

Emily was diagnosed at the same age as Beau, 7 years old. She is now 22 years old.

She is 22 and in many ways more mature than most. But seeing her on stage, standing to the left of Beau, she looks simply like a precious child.

But, this precious child has a real job. (She is a nurse, of course.)

This precious child has been fighting cancer for all of the life she can remember.

This precious child has survived insurmountable odds, and she is still worried if her hair looks good.

This precious child told me she often has nightmares of relapsing, again. That her worry is something she has to actively manage every single day.

This precious child, is no child at all.

Heavy is the head.

I followed-up with Emily after the ball and asked her to share the details of her story. There is only so much one can gather from the high-level, dinner table talk of, “She has been fighting cancer for 15 years.” She shared her details below:

I was first diagnosed in 2007. I was in first grade and had just turned 7 years old. I did 2 1/2 years of the standard chemo and had a hard time getting into remission, but eventually did. About 6 months later, it was February of 2010, I relapsed after experiencing some pain in my right hip. Back then, our only option was a bone marrow transplant (BMT). I underwent lots of chemo and full body radiation to prepare for it. I received my cord blood stem cells on July 4th, 2010. I left the hospital at the end of August. Then, in March of 2011, I ended up being septic due to having little, to no, immune system. I was on a ventilator, and put in to a medically-induced coma. Every organ in my body was failing. I was on ECMO, dialysis, and ended up having a stroke from being on blood thinners. 6 weeks later, I finally woke-up. I ended up having a trach for about a year because I couldn’t be weaned off of the vent otherwise.

My BMT held for about 3 1/2 years, but then I relapsed my freshman year of high school, in 2014. I was then 14. CAR T was brand new then. My team in Cleveland wanted to do a second BMT, but my parents and I did not. We chose CAR T and I got my T cells in June of 2014. I was good for almost 5 years. 5 years that’s almost cured! But in May of 2019, I had just finished my first semester of nursing school and had again relapsed. My B cells mutated, dropping their CD-19 protein, leaving only CD-22. That’s when I received the CD-22 CAR T cells.

I was one of the first patients on that trail. I believe patient number 5? My check-up on Monday was great and I still have no B cells, so I hope the T cells are still there doing the job!

If you want to know more about Emily, please watch this video about her story. She is a previous child who has seen far too much in her short life. She is the reason we donate our time, money, and energy to CAR T science.

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