Dear Beau,
All your friends’ parents are posting back-to-school pictures. I was thinking of taking a picture of you leaving this morning. I imagined having you hold a chalkboard sign that read “Back to Chemo.” Instead, you walked out the door with Dad, and I told you to be kind to everyone, especially Barb, because damn if the same advice doesn’t apply, first day of school or first day of chemo.
Barb annoys you. She’s the intake nurse. She is loud and chatty and always talks about your gorgeous hair in a way that is too much for you to bear. Anyone who talks about your gorgeous hair annoys you, and yet you decline getting a haircut every time I ask. Your hair is long, completely covering your eyes, thick in a way that feels healthy and robust. The other day you mentioned not wanting a haircut because you weren’t sure you’d like how it looked. I suggested that now would be the time to test it out, given we are in Philly for six weeks with no one to see who knows us, or your hair.
You reminded me that the nurses would know you and then joked that “they’d miss my hair.” I thought of that forgotten haircut this morning. Of how Barb would ask you to take off your hat while she measured your height. Of how she’d ruffle your hair and call you adorable and how you’d roll your eyes. You tell me she annoys you, but she keeps you from cutting your hair.
It’s that tension that feels most present in all of this. You don’t want to be here, but now that we are here, damn if you are not actually liking the attention.
Turns out your hair looks better than it has looked in weeks because you scored the bedroom in our Airbnb with the en suite bathroom and, as an expression of your maturity, have declared you are going to shower “every single day.”
Last night you came upstairs, freshly showered, and declared how soft your hair felt after using the conditioner and how you thought you may condition it every day, “and some days, twice!”
You also brushed your teeth this morning after breakfast, unprompted, and I guess I am just wondering where all this personal hygiene is coming from and if I can get you to commit to it for, perhaps, ever?
I watched you walk out the door for your first day of chemo and wondered if you would have twice-conditioned hair and freshly brushed teeth if this had merely been your first day of fourth grade.
Instead of a Back to School or a Back to Chemo sign, I just asked that you and Dad both look at the camera. Without prompting, you both offered a thumbs-up.
Lymphodepleting Chemotherapy Before CAR T-Cell Therapy
Today starts the first of four days of lymphodepleting chemotherapy. The idea is that if they kill off a lot of your healthy B cells, it will make space for your reprogrammed CAR T cells to expand, take up the room they need, and persist after they are infused next week.
Treatment is always hard to understand, but the intentional killing of healthy cells to make room for reprogrammed ones is particularly confusing. I think it is one of those things that will never feel right because it is so counter to what it means to be human.
All of this is. All of this intervention. It’s hard to make sense of, and yet we slowly come to terms with it, don’t we?
Last spring, when you had this specific chemo cocktail, you handled it well.
“Handled it well” is the phrase the adults use when they want to explain that though you had high doses of poison pumped into your veins, you didn’t complain too much, and your body didn’t overreact. Your liver, your kidneys, your heart, they all took the poison and didn’t succumb. They handled it, well.
May I just say, Beau, fuck this shit. Fuck, on the first day of fourth grade, me thinking about how you will probably handle these four days of chemo well.
Last night Jude asked me if I liked going to the doctor with you.
I wasn’t sure how to answer. Do I like taking up all this time in our one precious life seeing how well you can handle chemotherapy?
No.
Do I like being by your side as you walk into the storm?
I don’t suppose I like it, but I do feel it deeply in my soul as one of life’s greatest honors.
It’s not a Hallmark kind of honor. It is honor in a way that feels impossible and terribly heavy, and like I would be willing to take ANY other way out. And yet, honor, because there doesn’t appear to be any other way out. And so we go through, together.
“I want all my kids to be healthy, Jude, and until that day, we do what we have to do, whether we like it or not. But bubba, I’m glad you’re here this time, with us.”
Really, Beau, Jude just wants to understand his part in all of this. I know it’s hard because he is merely a pest of a little brother to you, but his annoyance is love, in a way that won’t make sense until you are much older.
I wonder often what parts of this will make sense when we are all older. It’s why I cried and then laughed, and then cried more during the Frozen II song when Olaf sings endlessly about it all making sense when he is older.
I’m glad we are all here, together in Philly this time. I wasn’t sure about bringing everyone along. Neither were you, which I get. I get it because it was nice this spring when we were here for your Kymriah trial, to just be the two of us. To go to clinic and come back and watch four hours of ESPN and not have to worry about anything else.
But it was lonely, and long, and felt hard. So, we brought everyone this time. And it feels full, and busy, and right.
It’s weird how the hardest things feel the most true sometimes, isn’t it?
The Only Way Out Is Through
Beau, did you notice on the drive to Philadelphia that I put my piece of bison hide on the dashboard?
You didn’t say anything about it, so I wondered if you saw it.
You’ve heard what they say about the Great American bison, haven’t you?
Bison know that the swiftest way out of a storm is straight through it. And so, when confronted, the bison heads directly into turbulent weather. It is unlike most other animals, those that seek shelter when the storm clouds rage.
People say it comes from their evolution on the open plains, with great exposure to the elements. But legend says it is in their deep wisdom that they know to head directly toward hard things. Wisdom that tells them that though the suffering may be intense, it is swift if they encounter it head-on.
Wisdom always comes from our long exposure to the elements. We head directly into the storm, and soon enough, though never as soon as we’d hope, the horizon appears ahead, clear and sun-drenched.
The only way out is through.
So I put the piece of bison hide on our dashboard as we drove across the country, upended our lives, to head right in, and get the hell right out, of this storm.
This morning when you left for clinic, you had an eagerness in your step. I think you have that same feeling I do, that weird feeling of being at home at the hospital. Comfortable, familiar.
Your wisdom knows that the suffering may be intense, but swift.
God, Beau, I really hope this is the end. I really hope that this is the storm and that we are in the middle. I believe that we are strong like the bison, and that even though we feel completely exposed and subject to the elements, our wisdom will take us through.
I love you. I’m sorry this is what your first day of school looks like.
Mom
If you would like to read more letters I’ve written to Beau, you can find them in the Dear Beau series.
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