A Day Like Today

Throughout this entire journey, I’ve had a few moments stuck in the back of my head…moments I just knew I would dread having to write the particular words. This is certainly one of them.

Today we are transitioning Kara to hospice/comfort care. I’m flooded with all the emotions. But for a change, maybe I’ll start with some positive ones.

First, I’m so proud of Kara, of our family and genuinely appreciative of all the people who have been standing and praying for Team Kara. I refuse to call this a battle, because we are not losing a battle. We are giving everything we have to give her the most good days that we possibly can. This all takes an incredible amount of bravery, strength and faith.

And on days I struggle to find courage, Team Kara has always lifted us up. Literally, there are mornings when I do not know if I have the energy to get through the day and that Make the World a Brighter Place sign displayed at the car wash whips me right into place.

The weekend wasn’t easy. We’ve struggled to keep her comfortable (although, ask her how she’s feeling and she will tell you she’s good every single time) and she has no interest in food. The only bright spot was on Sunday, when she was able to muster the energy to cheer on the Iowa Hawkeyes and told us she wanted Happy Joe’s pizza. That surprised us, since it’s been weeks since she’s been able to express that she wants anything but we made it happen and she ate the most I’ve seen her eat in awhile. I don’t know if this was her last solid food meal but it certainly feels poetic if it was. Happy Joe’s is the place Kara has wanted to spend every single one of her birthdays and it will always be special to me for that reason.

One of my biggest fears at the beginning of this was knowing when it was time to stop treatment. With Kara’s disability, I wanted to ensure I was respecting her rights and advocating for what she wanted to the best of my ability. Kara is tough and I believe if she could, she would want to stay in the fight but her body made the decision for us. Her platelets have been too low to safely restart treatment and even yesterday, when we planned to do one last round of bloodwork, not a drop of blood would pull from her port. I nodded and said, Okay God, message received.

This is the first January in over a decade that our family has stayed put in Iowa. We are really missing our Florida friends, who have surrounded us with so much love and support that I barely have words. Yesterday, I was able to tell Kara that I wasn’t going to work this week… that I could stay with her every single day. That time together is possible because people showed up for us in ways we’ll never forget. The sigh of relief, the smile on her face and the way she said yayyyy brought tears to my eyes. Then she turned to me and said: There’s nothing like a day like today. And she’s right. All we have is this moment, this day and beyond that, nothing else matters right now.

Four hundred ten days ago, I made the easiest decision I’ve ever made. I cleared off a plate that was far too full to begin with and locked into what I consider the most important “job” I’ll ever have: helping Kara face this awful, awful disease. I know I am meant to be here, giving her as much comfort as I possibly can.

There’s been some stress and tension as we await hospice care. Kara hasn’t had much energy to speak but as our voices raised the other evening, she looked at me and said: We’re all a team. Okay, Karbear… yes, I will chill out.

Beyond that, you’ll hear her say excuse me a dozen times a day when she burps. I’ve tried to tell her she doesn’t need to say that anymore. I want her to save her energy to speak more than just her impeccable manners. She’s not answering many calls now but she’s allowed me to pick some of them up and speak for her. I pretty much know everything she wants to ask (and the order). Just like I know her quirks: how each bracelet is stacked on her arm, the multiple steps required to get her phone back to the right screen before putting it to sleep to set down and exactly how things should be set on her bedside table, depending on the cup and time of day.

She still sends me to the grocery store every weekend because that’s the dang routine. I tell her I’m grabbing water or a Gatorade and she insists I grab a Dr. Pepper. She tells me she wants her dad to give her privacy (probably because he’s snoring too loud when she’s trying to sleep at night). She kicks me out of the house at bedtime because I need to check on Roger and Bennie. So she’s still bossing us around and I relish every order.

It’s important to me that I follow Kara’s systems, even if they seem silly. With all the control she’s lost, this is how she still has a say in the things we can give her a choice on. And I’m staying strong because that’s what she needs. I want the energy in the room to be beautiful, peaceful and full of love. So I’m burying my heart break for the time being and wondering how deeply empathic souls are supposed to endure the loss of their companion, while also bearing witness to their parents losing their child. What a shitty hand I’ve been dealt here.

But she’s still sleeping with a smile on her face. No matter what she’s going through, she’s still caring more about hearing what’s going on with everyone else. The world needs more people like Kara.

And as long as Kara is here, we will keep choosing presence, kindness and love… just like she always has.

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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 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!

Team Kara Support Fund

Your gift helps cover travel, caregiving and comfort-related expenses for Kara’s support team. While Kara cannot receive funds directly, your generosity provides the relief and resources we need to keep showing up with love.

https://givebutter.com/teamkara