Yesterday I read through 34 comments on a Facebook comment thread, in the pediatric cancer parents group all centered on one topic: staying employed while your kid has cancer.
The details are as terrible as you’d imagine. Lost jobs, cut hours, deciding between calling in sick, yet again, or leaving your neutropenic 9 year old at home alone for your 8-hour shift.
I closed my laptop and told Josh in a very chill, mater of fact voice, “I have other a million things to do today, I will not be sidetracked by feeling the need to be a spokesperson for this atrocity.”
He didn’t ask which atrocity I was referring to. Let’s all agree there are plenty to go around these days.
Instead I decided to write up a quick post I know you have all been waiting for titled: Decentralized Apheresis: A Supply Chain Issue or Patient Access One?
Oh, you have no idea what any of those words mean?
Well, to make a long story tolerable, when you participate in CAR T-cell therapy, the process starts with a T-cell collection. Usually from your own blood, but it could also be from a donor. That T-cell collection process is called apheresis.
Apheresis itself isn’t wildly complicated. But our medical system isn’t designed to move patients through treatment in this capacity, which means many patients who could be cured by CAR T won’t be unless something changes.
How do we change that?
That’s the million-dollar (ok, billion-dollar) question.
The Picture of Decentralized Apheresis
I retreated to my office and started typing up the tale of our experience with decentralized apheresis. In January of 2021, when Beaudin enrolled in trial medicine at CHOP for his first go at CAR T-cell therapy, we pushed to have his apheresis process done locally (read decentralized) at Children’s Hospital of Colorado. At the time, the were a million reasons for this decision, but the only one matters for the sake of this blog post.
And it’s not so much a reason, as a picture.
This is a picture of my husband taking a work call from an empty bay in the apheresis center at our children’s hospital while his 8 year old son has a t-cell collection to start relapse therapy for leukemia.
This is the picture of decentralized apheresis.
There Is Only So Much PTO One Person Can Take
January 17th, 2019 was over 7 years ago and not a day has gone by where Joshua hasn’t being torn between being a good employee and being a good dad.
The miraculous part is somehow he has done both.
At the beginning, did he take time off?
Of course.
But frontline treatment included over 100 hospital visits. That’s before relapse threw everything to the wind.
There is only so much PTO one person can take.
So this is the photo stream of Beau’s childhood: Joshua changing SalesForce back end architecture (or something I still don’t fully understand.) while Beaudin had labs drawn after high dose methotrexate.
Always by his side.
Frankly, his pack mule work ethic has found its way into most of my photos. Like when the medical team left the room after we signed consents for CAR T, I took selfies while Joshua jumped back on his laptop to finish an email.
What about the one time we were so neck deep in trial medicine that we moved 3 kids to a row home in Philadelphia and had to figure out how Joshua would work, siblings would be entertained, and Beau would be infused with another, God let it work this time, Hail Mary?
Oh that time? I sent Joshua and Beau off to the hospital, Beau with a backpack and Joshua with his laptop bag.
Or three days later where Joshua was inpatient with Beaudin and couldn’t answer my FaceTime call because he was “on a work call”. He was helping run a company at the side of his child experiencing iCANS toxicity from trial medicine.
Honestly, give this man a fucking medal.
During the entiry of Beau’s cancer care, Joshua has worked for a remarkable company.
Flexibility when hospital days swallowed entire afternoons and understanding when time zones changed because relapse sent us on a two-week denial induced vacation.
When we were living in Philadelphia for trial medicine, his co-worker offered some of his season tickets to an MLB game so Beau and Joshua could see something other than the four walls of the hospital. Hi Rick!
A new season for Joshua
Today, after eight years with his company, Joshua is leaving his role as Chief Operating Officer.
Eight years that contained hospital hallways, chemo days, relapse, trial medicine across the country, and more laptop hours from plastic hospital chairs than anyone will ever count.
Eight years of building a company while also holding together a family inside the machinery of pediatric cancer.
Is this entire blog post just a brag on Joshua? Perhaps. It’s my blog, I do what I want.
But seriously, as the dust settles and I look back on eight well-employed years where the only visible mark is Joshua and his ever-growing collection of gray hairs.
I’ll get around to the blog post on decentralized apheresis, don’t you worry.
But for today, there is no conversation about decentralized apheresis worth having until we set the stage for what pediatric cancer care actually looks for the families in the system.
A workforce of parents holding the unimaginable weight of a fractured system.
A system that over-indexes supply chains and access, while underestimating what it actually takes for a parent to keep a job, keep health insurance, keep a marriage, keep being a dad.
Joshua, you are the best employee a company could land, but most importantly you are the best dad our kids could imagine.
Here is to the next season, may it be far less hospital lobby, and far more…. anything else.
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