A cliff we can't avoid

I’ve held strong for every single doctor’s appointment but I lost it for a considerable amount of time this week during a conversation with a fellow at the University of Iowa. I wasn’t sure I’d be able to pull myself together in time to speak to the doctor.

I walked through the main goals of the appointment, number one being access to palliative care. Kara’s case requires a deeper bench and we could use the extra support. Good news, we have a referral. We were also seeking validation and a deeper understanding of her treatment plan. I wanted to know what different paths might still be in front of us. Doctor agreed that Trodelvy is what she would recommend. And finally, I inquired about access to clinical trials.

We’d asked back in January at Mayo and were told she wouldn’t qualify. After many months of enduring chemo, I thought this time could be different, proof that Kara could handle newer lines of treatment. But once again, I was told she wouldn’t be a candidate because of her inability to communicate symptoms. And as the tears flowed uncontrollably, they became the only way I could release my frustration with a system that feels like it’s abandoning her. It’s the only instance in her entire life where I can recall becoming unbearably pissed off about her disability.

My mom spent much of Kara’s childhood in mourning, for the sleepovers, friendships, sports, dates, prom, education, and driving that she feared Kara would never experience. I often sat beside her in that grief, struggling to understand where her sadness ended and mine began. I remember wondering why I wasn’t carrying it the same way. At that age, I probably wasn’t emotionally equipped to grasp the full weight of what we were facing. But what I did know was this: Kara had me and I had her. And that felt better than any friendship either of us could find outside of ourselves.

When I look at Kara’s life now so few of those early worries about “normalcy” came true. Of course, what we were dealt feels infinitely worse but cancer aside... Kara has built more meaningful and deeper relationships than most people could dream of. She graduated high school. She went to prom thanks to Erwin and her wonderful class. Sleepovers and friendships were fulfilled with our niece Alexa and a neighborhood that is more like a family. And while she’s never driven a car, she’s the best co-pilot I know. Her sense of direction and memory of place are unmatched. You can blindly trust her.

If I’m honest, before cancer, I grieved my independence more than I ever longed for Kara to be “normal.” There were moments when I craved the freedom to untether but it was never possible. Our souls are tied. We’ve always been a package deal and I’ve been insistent that her adult life would be spent in a home with me. I couldn’t imagine any other arrangement and every life decision I made revolved around making that possible.

When I bought my home nearly a decade ago I was thrilled to have space for her. The first improvement we made was Roger building a stairwell, railing and special door lock to make the side door accessible for her. My favorite time of year was when she stayed with me while Mom and Dad went to Florida. It gave me a glimpse into what our lives could eventually look like. It wasn’t without its challenges but it was also when I felt most at peace. That’s how it always is when I’m in her presence.

And now, I’m looking out into a vast abyss as my grasp on her slips away, a future dream that will most certainly be unfulfilled. As medical professionals like to remind me, you’ll be without her eventually. Ten months into this journey, those words are still jarring every time I hear them. Even when I think I’ve reached the acceptance stage of grief, I can’t fathom it when a doctor says it out loud. And they all have the same look in their eyes, a silent acknowledgment that we’re headed toward a cliff and there’s nothing anyone can do to stop the car.

At this point, I’ve read enough about her cancer to know the prognosis for certain. I’ve followed as many people as I can with her type and not once have I found a miracle case. So now I try to make my wishes for a miracle more realistic. But when a doctor tells you your loved one can’t access a clinical trial, it feels like your legs have been cut out from under you. What do you mean?

I told the fellow that I understood the reasoning, I mean logically, I did. But when I looked at Kara, I couldn’t accept it. I asked for clarification and they explained that her communication barrier meant they needed patients to express their symptoms directly. There are limits to what caretakers can report.

I felt like I’d failed a test. I told her that I understood but also that I do a hell of a job advocating for Kara as the tears just kept falling. I silently scolded myself to pull it together. Kara stared at me and I reassured her that I was fine. But I wasn’t fine and I probably never will be again. (And just so we’re clear - the tears are still falling now as I write this days later.)

I asked the doctor, “So are you telling me that people with disabilities are just not accepted into these trials?”

She said yes and admitted it wasn’t fair but it’s the reality.

And it is beyond not fair. It makes me want to quit my job and pour every ounce of energy into fighting the system for people like Kara. I shouldn’t have to prove that her life is worth fighting for. I keep hearing they need “reliable symptom reporting,” but I can monitor her and I do every single day. I know all her looks, all her quirks, there are times that I feel like her personal mind reader. And wouldn’t diagnostic testing and outcomes reveal what’s working? How do they manage clinical trials with pediatric patients? Is there not an expanded access pathway or compassionate use?

There should be proxy systems in place for vulnerable and underserved populations. I was too emotional in the moment to ask all the right questions and now I just feel stuck. Even if I did put everything I had into this fight, would it make a difference? Because while we may be in the minority, we’re not alone.

The truth is, when research funding stalls, patients lose options. Every policy that cuts support for scientific progress ripples through labs, hospitals and lives. Closing doors that might have opened just in time for someone else’s daughter, sister or best friend. Cancer doesn’t care about politics and it doesn’t wait for policy to catch up. When science is prioritized, progress follows and people like Kara stand a better chance of seeing the next breakthrough.

But for now, all I can do is control what’s in front of me. Marking clinical trials off the list of options for Kara feels like a heartbreak layered on heartbreak. Still, when given the chance, I’ll keep using my voice to advocate for stronger research, for inclusion, for the people who can’t speak for themselves.

Kara left that appointment in her usual way cheerful, smiling as she caught a glimpse of Kinnick Stadium through the window right outside the doctor's office. We went to her best friend’s house that afternoon, she was snuggling baby Halstyn, and the weight of that appointment lightened. That’s how it always goes with us: one minute buried in medical jargon and impossible choices, the next surrounded by life’s small and precious moments. We’ve learned to live in the spaces between, hopscotching across vastly different atmospheres and trying not to lose our balance along the way.

And maybe that’s the lesson I keep coming back to: even when the system feels unmovable, Kara keeps showing me what resilience really looks like. I can’t change the entire landscape of clinical trials or the policies that make them inaccessible for people like her, at least not today. But I can keep telling her story. I can keep asking questions. I can keep reminding the world that science and compassion should never be at odds.

Because while I left that hospital angry, Kara left it smiling and our hope for better days still lives on.

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If You're New Here

Hi, I’m Alisha, Kara’s sister and biggest advocate. Kara was diagnosed with Stage 4 Triple-Negative Invasive Ductal Carcinoma (TNBC) in December 2024. Her cancer has spread to her bones, liver, and other areas, making this an incredibly difficult and uncertain journey.

Despite it all, Kara’s light still shines so brightly. She’s full of love, giggles, and endless positivity. This blog is where I share updates on her fight, the highs and lows and the incredible community rallying around her.

Thank you for being here, for your love, support and prayers. We need them more than ever. 💛 And of course, Go Hawks!

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