The Negative Space

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Saint Paul, MN
The Negative Space

Our mission is to change the way caregivers of all kinds are seen and supported.

04/29/2026

One of the things we do at The Negative Space is "shine light on the reality of caregiving" and friends, the reality at our house these days is heavy and grim.

If you haven't heard, the recent surgery to remove cancer from Sean's mouth was not able to successfully get at all of it. The next recommended step is to remove a portion of his jaw and replace it with a bone from his leg - a full day, two surgeon operation that they are saying he should expect will take 3-6 months to recover from and will include a trach, a leg boot, a feeding tube, speech/swallow therapy, OT, PT, etc. etc. etc. (This is longer than what the average person's recovery would be for this surgery and based on his history and current state.) Because this is an enormous surgery, because he's already had countless surgeries, because he's in kidney failure, because we know that more cancer will, without a doubt, occur in the future, we are taking a moment to pause and weigh all options. There is no way to know for sure, but the team's estimate is that if he does not remove the jaw, he will likely have months, not years to live.

Which leads us to today's agenda. We're meeting with an estate planner to get all the paperwork in order (yes, we should have done this long ago) and then we are so incredibly grateful that at 12:30 5 members of his care team will join us for a virtual call to discuss the options all together.

Every ounce of this is hard, friends. And in the hard we are having deeply and tragically beautiful conversations and are feeling so surrounded by support for whatever lies ahead. Thank you for being part of OUR story. 💕

04/21/2026

Want to help us spread the word about The Negative Space? We now have bookmarks available that you can order at no cost to you. Perfect to share with friends, family, at your support groups, places of worship, doctor's offices, etc.!

Use the link below to place an order. Thank you for being part of the story!!

https://thenegativespace.charityproud.org/EventRegistration/Index/22222

04/15/2026

Join us for a Caregiver Support Group on Sunday, April 19, from 6-7:15pm CT!

Our discussion for the evening will be the topic of the latest episode of the "In Sickness" podcast: The Relationship Between Caregiver and Patient Well-Being." Listening to the episode is not a requirement.

Our groups are FREE and open to caregivers of all kinds. Register below!

Register: https://thenegativespace.charityproud.org/EventRegistration/Index/27483

04/14/2026

EPISODE 130: The Relationship Between Caregiver and Patient Well-Being

Research shows that there is a direct correlation between caregiver distress, depression, and physical strain and patient rates of hospitalization and even mortality. In this episode, we talk about the vicious cycle of the caregiving role causing these symptoms but then how the symptoms themselves can make caregiving more challenging. We also dig into what, if anything, can be done to prevent caregiver burnout.

Listen, share, and join us for a support group on this topic on Sunday, April 19 from 6-715pm CT.

Listen: www.insickness.care
Register for group: https://thenegativespace.charityproud.org/EventRegistration/Index/27483

04/13/2026

Here we go again.

Surgery at 1030am CT today.

The plan is to remove:
-two teeth (second and third from the back)
-a portion of the jaw bone under the teeth
-area on the floor of the mouth

They will do pathology in the moment to look for clean margins, but will then send cells off for more in depth pathology after. The plan and hope is to NOT spend the night.

We decided there was no way he'd be up for the endoscopy/colonoscopy/Gtube adjustment that he had scheduled for this Thursday, so that's pushed back to June.

Previous cancers have required the removal of the back two teeth on the other side, so Sean is concerned about how chewing will work once he's healed, but we'll figure that out down the road a bit. For now, we focus on getting through today.

Thank you for every prayer and text. We appreciate each and every one.

04/12/2026

We were thrilled to speak to the PA students at St. Catherine's University for the third year in a row last week!

Being able to paint a picture of the reality of caregivers and provide these students with practical and powerful strategies as they launch their careers, perfectly aligns with our mission of changing the way caregivers of all kinds are seen and supported.

Do you have a connection to a group of medical students or professionals who could benefit from a session on Considering the Caregiver? Let's talk!

04/11/2026

What a morning!

We were invited to not one, but two conferences today and thanks to our volunteers, we were able to show up for caregivers at BOTH the MN Brain Tumor Gathering AND the 20th Anniversary of the Survivorship Conference.

At both sites we shared our stories, our mission, our resources. At both sites tears were shed and connections were made.

If you have an event you'd like us to attend OR you'd like to volunteer for The Negative Space - let's talk!

Masonic Cancer Center, University of Minnesota

04/10/2026

Why would we spend the day in between infusions and surgery working on a mailing for The Negative Space?

✔️ Because we love this work.
✔️ Because we are more convinced of the necessity of its mission every day.
✔️ Because we hear from new desperate caregivers daily as well as caregivers sharing how our programs have helped them.
✔️ Because it feels good to think about something other than surgery.
✔️ Because it feels great to use our brains and skills and experiences.
✔️ Because it's something we can do together as a couple.

So yes, even as we wade through the medical muck, we choose to continue to work towards the mission of changing the way caregivers of all kinds are seen and supported. The work and this community help us get through each day. ❤️

04/09/2026

Updates on Sean:
- Today he's getting IVIG to replenish his IGG (immune system) numbers

- He's still healing from last week's 3 Mohs procedures. The 3 spots they biopsied that day all came back as cancer so he needs to go back for more Mohs when he's up for it

- We haven't heard from the kidney transplant team yet and haven't pursued it because other health issues have come up. One of his doctors did explain to us that the threat of a kidney transplant is that he would need to be on immunosuppressants, which would likely cause him to get cancers at an even higher rate than he is now. 🥺 We meet with our regular nephrologist in the next few weeks, so we'll dig in more then

- On Monday (4/13) he'll have yet another surgery for oral cancer. They will remove two teeth, part of the jaw below those teeth, and part of the floor of his mouth.

- Next Thursday he's scheduled for an endoscopy, colonoscopy, and g-tube upgrade, but we aren't sure how he'll feel after Monday's surgery, so we may have to postpone

In between appointments, we are trying to stay grounded by doing laps around the neighborhood with Winston the dog, spending time with our people, and looking for signs of spring. Keep the love coming, especially for Mondays surgery.

04/08/2026

Thank you Allina Health for sharing our story!

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Saint Paul, MN

Website

http://www.thenegativespace.life/

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