And so we begin again. HuCarT Day -7

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Dear Beau,

All your friend’s parents are posting first day of 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 Barbara, because damn if the same advice doesn’t apply, first day of school or first day of chemo.

Barbara 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 bare. Anyone who talks about your gorgeous hair annoys you, but 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 bc 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 6-weeks with no one to see who knows us, or our hair. You reminded me that the nurses would know you, and then joked that “they’d miss [your] hair.”

Turns out your hair looks better than it’s looked in weeks because you scored the bedroom with the en suite bathroom and as an expression of your ownership 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 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 came from and if I can get you to commit to it for, perhaps, ever?

Today starts the first of four days of lymphodepleting chemotherapy, with the idea being that if they kill of a lot of your healthy b-cells, it will make space for your reprogramed killer t-cells to expand and take up the room they need to, to persist when they are infused next week. Treatment is always hard to understand, but the intentional killing of healthy cells to make room for reprogramed ones is a particular confusion. 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. And yet we slowly come to terms, don’t we?

Last spring when you had this specific chemo you handled it well. “Handled it well” is the phrase the adults use when they want to detail that though you had high doses of poison pumped into your veins, you didn’t complain too much, and your body didn’t over react. 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.

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 as 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 honor feeling. It’s honor in a way that feels impossible and terribly heavy, and like I would be willing 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 a pest to you, but his annoyance is love, in a way that won’t make sense until you are much older.

I’m glad we are all here, together. I wasn’t sure about bringing everyone along. Neither were you, which I get. I get it because it was nice last time to just be the two of us. To just go to clinic and come back and watch 4 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?

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 bison, haven’t you? Bison know that the fastest way out of a storm is through and so they headed directly into turbulent weather. It’s unlike most other animals that seek shelter. Scientist say it is from their evolution on the open planes with great exposure to the elements. Legend says it is their deep wisdom, knowing that the suffering may be intense, but swift if they encounter it head on. Wisdom always comes from our long exposure to the elements.

The only way out is through. So I put the skin 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 that I do, that weird bit of feeling 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, we are fucking mighty.

9 comments

  1. Unprompted physical hygiene?!? Amazing. Teach me your ways! I am so interested in Beau’s HuCart treatment as I don’t want to go down the transplant journey with Reese unless we have to. Thanks for sharing your story. We are praying for you Beau!

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  2. Praying for you during this storm. I’m glad that you are all together. Beau is amazing and it comes from having a badass mom!

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  3. ❤ made me think of one of our favorite books, We’re Going On A Bear Hunt. They face many challenges along the way always chanting… We can’t go under it, we can’t go over it, we have to go through it. And they do, together as a family. Much love to you guys.

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  4. I don’t suppose I like it, but I do feel deep in my soul it is life’s greatest honor… Bison know that the fastest way out of a storm is through and so they headed directly into turbulent weather. It’s unlike most other animals that seek shelter. Scientist say it is from their evolution on the open planes with great exposure to the elements. Legend says it is their deep wisdom, knowing that the suffering may be intense, but swift if they encounter it head on. Wisdom always comes from our long exposure to the elements. Oh Betsy, what wisdom and grace and love you possess…

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  5. Betsy, I have no idea how God is using all this and I truly hate that y’all have to walk through this storm. I do know you put words to this journey is a way that not everyone can. When you share, you touch hearts and I trust God is doing a work in the midst of all this uncertainty and suffering. I fear even writing because I’m not so good with words…but I want you to know how much your words touch my heart and enable me to pray more realistically and more fervently for all of you. Thank you for the bison story. I shall always remember that. I love you all so very much. ❤️

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  6. You guys are in my thoughts daily! I know this hospital provides all you need but know we are here if you need ANYTHING!!! You have our daily prayers but I feel that is not enough.
    Would love to mail a special package for each of the kids-kids love to get surprises in the mail.
    Send your address and maybe items each would love and you’ve got. Cost is not an issue!
    We love you all dearly!

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