| Next month, Beaudin turns 14, and he is asking for cold hard cash. How in the world is this doll face turning 14? Back to his gift list. He wants cash, but not for himself. TLDR: We're taking lunch to the Witkowski Lab! We're inviting anyone who wants to join us to contribute a few dollars. I will spend this post detailing our recent visit there, but I don't want you to miss the opportunity at the bottom to help wish Beau a happy 14th birthday!
On to the story!One morning in early February, I saw a Facebook post: there was a presentation at the Aurora Public Library about childhood leukemia and new treatment options. My schedule didn't allow me to attend, but I tuned in on Zoom. Dr. Witkowski's presentation was the clearest explanation of leukemia I'd ever heard. Seven years in, that is saying a lot. I emailed him immediately, thanking him and asking if we could talk more. He replied: "Forget a call. You and Beau should come to my lab for a tour." Done. A Real CAR T lab!The following week, Beaudin and I spent an afternoon at the Witkowski Lab. Matthew Witowski, the lab director, greeted us like we were exactly who he'd been waiting for. He was eager—asking Beaudin about his life and his sports, genuinely interested in everything about Beau. While Matthew and Beaudin discussed sports, the rest of the Witowski Lab team took turns introducing themselves- graduate students from China, Mexico, and locals from Denver- all giving themselves to the question our family spent years asking: Why us?
I felt like I was walking through a daydream. These were the people I had spent years praying existed. In the small dark moments after relapse, when I stared into the middle distance and begged that there was another way, these people were hard at work. These people were finding that way. Matthew had set up microscope slides for Beaudin—leukemia cells, CAR-T cells, and then CAR-T cells actively eliminating the leukemia. By the time Beau put his eye to the microscope, he was able to watch, in real time, the process that saved his life. This is the magic, I thought, holding back tears. The literal divine gift of a CAR-T cells shredding a leukemic B-cell. But also the human hand in all of it- the soulful connection of Beau and Matthew in that moment, the hands who labored in labs late into the night so that this boy could live.
Matthew showed us around his lab, and the hallways of the other labs on the floor that shared research space. He yelled out to colleagues, "Hey, this is Beau- he got CAR T in 2021 at CHOP!" and people reveled in a "real life" CAR T patient walking their halls. Beau walked the grounds like he was on a royal tour, Matthew the host with the most. I remarked that things felt quite busy at the lab and Matthew explained this was one of the reasons he likes to work weekends, too. I gave him a lighthearted, "We need to get you out more!" and he looked me dead in the eye, "I spend 7 days a week here, there is not really another place I'd rather be!" as though shocked I would think any different. Science Is Like a High-Speed TrainWe sat back down in the conference room and I asked Matthew why he had given the presentation at the library to begin with. "It's my job!" He said matter of factly. "What? No it's not. This is your job." I gestured wildly to everything we had just seen. "Yeah, I mean that is my job, too." he laughed, "But no, I take very seriously that part of my job is to show the public what we are doing. To make sure everyone knows what their money is going towards." (The Witkowski lab receives funding from the publicly funded NIH) That led me perfectly to my next question. I asked Matthew about the lab's funding. The question came up because Beaudin had been asked to be a Junior Emcee at a foundation fundraiser this fall, and he'd said no because it felt "too weird" to ask people for money. I was hoping to help him understand why funding matters. Matthew shared—very openly—that it was ironic to be asked about funding when just that morning they'd been notified that 25% of their NIH funding had been cut. The word he used was arbitrary. No explanation. No performance issue. Just a notice: adjust your budget down by 25%. The PhD and graduate students we'd been sitting with earlier—the same ones encouraging Beaudin about science and possibility—had spent that morning sick with worry about their futures. I asked Matthew if the funding cuts would be something to endure until a new administration was in charge. He said maybe, but the bigger problem was the halt to science that the current political landscape creates. "It's not about if funding will be reinstated in 2028. It's about all the ground that is lost in the meantime. Science is like a high-speed train. You can't turn funding on and off and expect it to run on schedule. Even with reinstated funding in four years, it will take twice that to regain momentum. Morale is low—that's my biggest concern. A generation of twenty-year-olds are seeing that science isn't a reliable field to be in, that the U.S. isn't a reliable country to study in. They're asking themselves if they should find somewhere else." I held the contradiction in my chest: Beaudin, standing at a microscope watching the cells that saved his life. And the scientists who created those cells, notified that very morning that 25% of their funding was gone.
Dr. Witkowski escorted us out, and Beaudin nearly bounded to the car—energized, hopeful, insisting we commit pen to paper on when we would return. "How often do you think? maybe in 6 months?" I asked. Beau guffawed, incredulous, "Mom! As often as they will have me! Actually, let's go back for my birthday!" The Politics of Science FundingOn the drive home, Beaudin had questions about why Congress had cut the lab's funding and whether it was something President Trump wanted. I didn't have an easy answer that wasn't full of partisan rage, so I encouraged him to look it up on my phone. He searched. Pages of search returns about NIH funding cuts with "liberal agenda this" and "woke studies about gender fluidity that"—results detailing all the waste that science allows. After a long while, he asked, "Mom, is CAR-T research part of a 'woke' agenda?" I explained that there is indeed waste in the NIH funding model that the conservative movement is working to reduce and that some conservatives conflates that with woke-ness. "Mom, cutting Matthew's budget by 25% doesn't help that." "It does not." "That lab isn't waste!" "It is not." "So is this what Trump voters want?" "I don't think exactly, but it is what comes of it." Beaudin tossed the phone to the floorboard and looked out the window, pissed. "Woke science." he scoffed. I merged onto the freeway for the long, rush-hour drive home. I recalled when this drive was part of our treatment routine: a day of highs and lows, then crawl back up Highway 270 and wonder what it all means. We drove, mostly quiet. I found myself curious how we can praise his survival with one hand while we are voting to defund it with the other. The contradiction feels as clear as cells under a microscope. A Birthday LuncheonFor Beaudin's 14th birthday in April, we're doing something a little different. Instead of cake and candles, Beau asked if we could go back to the Witkowski Lab and celebrate with the team. So we are bringing lunch to the lab! But what about presents? Glad you asked. I know a handful of my readers cannot replace a six-figure funding cut. But we can show up with lunch. We are inviting anyone who wants to join us to contribute. Ten dollars. Twenty dollars. Whatever feels right. We aren't going to bootstrap a broken system. We are going to remind the scientists doing the work that we are cheering for them. My posts reach hundreds of readers. One dollar from each of YOU becomes an entire community standing behind the science that saved Beau. The science that made a 14th birthday possible. If you'd like to be part of Beau's birthday gift to the Witkowski Lab, you can contribute here:
Anyone who read to this point deserves to know the wild insane dream I have that we could not only provide lunch, but a real financial donation of size. Let's gooooo. |
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