HuCART Day +119: 2.7% b-cell return

An update.

Beau had clinic on Tuesday. Unfortunately, his labs showed a b-cell return of 2.7%. This may indicate his t-cells are fading, but it is not considered an “official return” until b-cells return at >3%. B-cells levels have been known, in rare cases, to fluctuate and go back down so we are going to check the level again next week on 12/28, 9am.

If the b-cells level is above 3% we will then talk to CHOP about next steps. It will likely be a return to Philly for a booster of his CarT cells. That basically means another round of the CarT process- pre-chemo, infusion, monitoring, but with a shorter stay (3 weeks vs. 7) because he doesn’t need to be monitored as long.

This is not ideal, but it’s also not the worst news. It’s both lame and not terrible. Both/and.

The 2.7% b-cells are, as we see them, cancer-free, healthy b-cells. Beau still has “no evidence of disease”, though we need 100% active t-cells (thus NO b-cells) to ensure the strongest surveillance. Basically, we need all soldiers on the ground just in case one of those b-cells is rogue.

Many kids who need this “boost” go on to have successful remission. So again, by no means a dead end. But also, let me be clear- it’s NOT the results we want. It draws out this living hell a bit longer, opens up more “what-if’s”, and perhaps the most frustrating part of it all- feels like the sinister whisper of an evil villain, “Don’t you ever think about getting comfortable.”

It’s not new cancer. It’s not relapse. And for that we allow the exhale of a clinic visit where the labs show only healthy cells, even if those healthy cells aren’t the ones we want to welcome.

I drove home from clinic feeling torn. It’s hard to sit in a hospital ward full of dying kids and feel self-pitty for results like ours. Our results are fine. I mean for God’s sake- they are good. We have friends currently in treatments whose results include phrases like “this is now a quality of life decision,” and “these medicines will buy time.” It’s hard to fall too deep into my own disappointment when I know those are the waters others treading.

And still. I’m over it. Gah, I’m over it. I’m over walking through the lobby decorated with Christmas and feeling like I have no idea where this hellish ride is taking us. I’m over sitting in BBoy45, the hospital radio studio, after the clinic visit and watching Beau play DJ, while I stare into nothing and wonder if this all ends with him dead.

I just want a fucking break, I think to myself driving home. And then I recall that we’ve gotten only good news since August. The longest stretch of good news since relapse snatched us last year. 119 days of good news, and even this news isn’t terrible news. We’ve had a break.

119 days of a break and within moments I’m desperate for another. Because in the end I’m not desperate for a break, I’m desperate for this to be behind us. Over.

But what if over means dead. And if that’s not freaking morbid then WHAT ISSSSSSSSS!?!?!?!?!

But honestly, while I’m desperate for a break, desperate for our real life to not include talk of CD19 and CD4 levels, I am always haunted by not knowing what the ending looks like. If kicking the unknown can down the road is what it means to survive, if this is what life with Beau looks like- then I will take it every single day of the rest of my life.

Bring on the unknown.

So I drove home and turned on Dierks Bentley’s song “Living” and just sang on top volume while the hot tears flowed.

“Some days you just breath in
Just try to break even
Sometimes your heart’s
Poundin’ out of your chest

Sometimes it’s just beatin’
Some days you just forget
What all you’ve been given
Some days you just get back

Yeah, some days you’re just alive
Some days you’re livin’
Some days you’re livin’

It’a beautiful world sometimes I don’t see so clear
Some days you start singin’
And you don’t need a reason
Sometimes the world’s just right

Your clear eyes ain’t even blinkin’
Got a heart full of grateful
For all you’ve been given
Some days you just get by

Yeah, some days you’re just alive
Some days you’re livin’”

Beau loving the beach on our recent escape to Florida.

How thankful I am for this huge unknown, for each day that we get to walk into this big swirly mess. Beaudin is feeling great, looking great, and we are all happy and healthy at present. I would give anything to have this not be our path, but damn, what a reminder it is that each and every day is the gift. It’s not the day in the future when we hope, maybe, things will be behind us that we yearn for.

It’s today.

Today is the blessing.

3 thoughts on “HuCART Day +119: 2.7% b-cell return”

  1. I pray for the end of this long rollercoaster ride you and Josh ( and family) have taken. Ups and downs. Turns for the better, downhill for the worst, twists in between on this ride you didn’t even want to go on with precious Beaudin. How did you get chosen for this ride? I don’t know?
    You question your faith I’m sure. I don’t understand either, but I do know we have a loving God and sometimes things are beyond our comprehension.
    I pray with all my heart that this rollercoaster will stop and Beaudin is permanently healed.
    In Jesus Name, Amen
    Kelly Garno (f/k/a) Martin


  2. Betsy, your honesty is breath-taking. Thank you. I groan with you and yours for relief and healing. Your gratefulness is a gift for us all to ponder.


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