Last week, my mom had her last scan after which we met with her oncologist. The main discussion centered on the fact that even though there are improvements to her scans, her symptoms are continuing to worsen. Because of this, the decision was made to stop chemo and treatments and she has now transitioned to focusing on quality of life care. This week she started hospice at home. When the time comes, she will eventually move to a hospice residence.

We know this isn’t the news anyone was hoping for, but at this point, the goal is to help manage her symptoms while keeping her as comfortable and healthy as possible, with the support from nurses and care teams who specialize in that sort of care.

Despite these changes, she’s been enjoying the warmth and sunshine that we’ve had this month, watching the winter Olympics, and spending quality time with family and friends.

Speaking of which, visitors are welcome and spending time with friends and family has been bringing her lots of joy. To ensure that visits don’t overwhelm her busier care days, they need to be scheduled in advance. Please reach out to my dad, Dave, to schedule your visit so we can continue to balance my mom’s care while keeping the visits manageable for her. My mom also wanted to note that visits should come from those who truly want to spend meaningful time with her.

If you’ve tried to message my mom, or reached out and haven’t heard back, we’re sorry about the delay. She is not using her phone anymore as her mobility changes have made it difficult. For texts or visits, please contact Dave at 612-751-3251, or for other questions, you can also reach me at 952-687-1771.

We’re deeply grateful for the love, prayers, and support so many of you have shown my mom and our family. It’s been hard for my mom to share updates herself, so we wanted to pass this along to keep everyone in the loop. We truly appreciate everyone and everything you all have been doing to be in my mom’s corner to support her.

We’ll continue to share updates here.

Jenna

But reality has started to set in. Just one month ago, I was able to get around with help from my walker. And I was able to talk and text regularly. Now, my mobility is limited and talking and texting is a challenge along with a number of other daily activities. I’m able to get around, and stay comfortable, with the help of my new friends Maya, Grayson and Kanita, my home health aids. I am able to safely navigate this new reality with the love and support from all my family and friends.

Thank you for your continued care and concern.

Joyfully, Lisa

And yet, my doctors’ message is the opposite: “wait and see.”

Wait? Me—wait? That’s never been my strength. But this cancer journey is on a timeline of its own, and I’m learning to surrender to it. For those curious, here are a few updates.

In August, I quietly celebrated a milestone: three years since my diagnosis. That’s nearly two years longer than the doctors expected – and I count that as a gift. My mobility has shifted, and I now use both a walker and a wheelchair. But the important thing is: I’m still moving. These changes could be lingering effects of radiation, or the brain tumor itself, or most likely a bit of both. For now, it’s another season of “wait and see.”

Another change is with my career. After ten incredible years at Milliken—years full of teamwork, growth, and accomplishments—it’s time for me to step away. I recently transitioned to disability status.

But enough about the challenges—here’s the good news!

I’m still deeply engaged with The Cure Starts Now, an organization that funds vital brain tumor research. Through my personal fundraising page, I have contributed nearly $150,000, much of it through the sale of my paintings. To everyone who has donated or purchased art: thank you. I hope your homes are brighter with my work on your walls.

This year also brought an exciting partnership with Love From Companies, a Minnesota-based retail store. Their “Art For Good” campaign pairs artists with nonprofits, and I was honored to be chosen as their first featured artist. My designs have already raised more than $1,500 for The Cure Starts Now.

In July, Calvin, Dave and I traveled to Banff, Canada, for a brain cancer symposium sponsored by The Cure Starts Now. We met doctors, researchers, and families—all united by the mission to advance pediatric brain cancer research. Again and again, I saw proof of the extraordinary impact this organization is having and the urgent need to continue funding.

On September 6, another wonderful organization, Humor to Fight the Tumor hosted their annual gala. With more than 800 in attendance, the organization raised a record-breaking amount of money – more than $1 million! I’m so grateful for the love of family and friends who bought tickets, filled tables, and donated auction items. Your support makes such a difference.

In mid-September this year I attended the annual American Brain Tumor Association conference in Chicago. The event featured a gathering of patients, caregivers, researchers and advocations dedicated to advancing brain tumor research and treatment.

So while I’m often told to “wait and see,” I choose instead to feel lucky—for each day, each experience, and for each of you who continue to walk this journey with me.

With gratitude and joy,

Lisa

It has been seven months since my last blog update and May is the perfect month to get back at it!

Why May? Because this month is National Brain Tumor Awareness Month and if you know me, you know brain tumor research is incredibly important to me.

The Cure Starts Now is an organization that’s dedicated to pursuing cancer research. 100% of tribute donations made to this organization go directly to research. Their focus on brain tumors, particularly pediatric tumors, is something I’m intensely passionate about because as a 60-year old woman, I have a pediatric brain tumor. Crazy? Yes, it is. My tumor, a diffuse midline glioma (DMG) is a rarity in adults. I’m using my voice to speak on behalf of the kids with this tumor that can’t.

I’d like to share a few exciting things happening that will help make a difference!

As mentioned in my last blog post, I’m painting. A lot. Last September I started an online auction with all proceeds from the sale of my artwork going directly to The Cure Starts Now. I’m thrilled to say that my fundraising page, through the sale of art and other donations, is approaching a whopping $150,000! I’ve become a designated warrior with The Cure Starts Now. You can check out my story and personal page HERE.

Several months ago, Love From Companies, a Minnesota-based retail store, announced Art For Good, a campaign that partners with local artists to sell exclusive products in-store and online. As an artist, cancer research advocate, breast cancer survivor and brain cancer patient, I have been chosen as their first featured artist!

My designs can be found on 30 products in the Art For Good collection including bags, coffee mugs, greeting cards, prints and apparel and sold in shops and airport stores across multiple states.

Love From Companies will donate 15% of all proceeds from the sale of my designs to The Cure Starts Now. Take a peek at my artist page and video HERE and if you’re inspired, buy something!

As for my health, I still count my blessings every day. I’m partnering with my doctors on a few new treatment protocols. I’m working. I’m painting. I’m spending time with family and friends and I’ve already started enjoying warm weather and boating season on the lake!

I feel the love from all of you and appreciate the calls and emails. However, at times it can be overwhelming updating everyone separately. If you have good news to share or updates of your life, I would love to hear it! When I have updates to share, I will share them with you here, on The Joy Phenomenon.

Good vibes only,
Lisa

In my spare time these days, I am painting. And painting. And painting some more! In September, I raised more than $2,000 from the sale of my artwork, the proceeds of which all went to The Cure Starts Now.

Many friends and colleagues have asked how to view and purchase my art. For those of you in the Twin Cities, the easiest way to see what I’ve been up to is to come over and take a look for yourself! But I also have some videos and many photos of paintings and greeting cards made from my art. You can just contact me to arrange a viewing of art and/or cards. If you’re interested in purchasing a piece of art, or a collection of greeting cards, your donation of any amount will go directly to The Cure Starts Now.

The QR code below should make it easy to donate any amount you are comfortable with.

Train Ride To Venice, Joy, Lotus Flower, Reggie’s Rain, Zurich Harbor,

Roussillon, Prior Lake, Elephant Love

Your interest and your support brings me great JOY. I’ve included a link to my favorite playlist, The Joy Phenomenon by dalijeca on Spotify. Friends and family have contributed to this list and it has brought me joy throughout my journey and I hope it brings a smile to your face. This month in particular I added a song called Don’t Stop Fighting by Christine Niemeyer.

What’s next? Well, if you know me, you know I don’t stop easily.

September is Children’s Cancer Awareness Month. And although I’m clearly not a child, many of you know that my diagnosis of Diffused Midline Glioma (DMG), is primarily a pediatric cancer. The Cure Starts Now is an Ohio-based organization that funds cancer research across the world. I have met many of the children and their families with this horrible diagnosis and they need our help. Increased education and awareness around brain tumors will drive increased funding, and I’m passionate about being part of that solution.

Since my diagnosis, I have found comfort in a creative passion of mine — painting. I am typically inspired by travel, humor, symbolic meanings of lotus flowers, etc Inspired by that, I am now using my art as a way to drive donations to The Cure Starts Now . The QR code below will take you directly to The Cure Starts Now - Giving First Team Joy and once you make payment you will receive a receipt you can use for charitable deductions on taxes.

If you have no need for paintings or cards, and if you too, are inspired to be part of a solution, consider a donation of any size to  The Cure Start Now 

I am still feeling great, and have no additional health updates until my next scan so this post is all about joy, giving and gratitude!

Joyfully, 

Lisa

I’ve always had a passion for travel but have more recently appreciated how important it is to make time for adventures. The world is a beautiful place, but it’s truly the memories you make and the relationships you celebrate with friends and families while on these adventures that make them so important. You never know when you may not be able to take that trip.

A friend who inspired myself and others to always take the trip!

My most recent adventure was a trip to Seattle with a few friends, scheduled primarily to kayak with whales. Fortunately, we had no scary whale encounters, but we did enjoy spotting seals and bald eagles from our kayaks, marveled at the gorgeous coastline and learned all about the strange looking sea kelp of the Pacific Northwest. For two nights of our trip, we were hosted by my very first boss and long-time friend. After many years we reconnected, and it was as though no time had passed. I am so grateful for the friends, my family and colleagues that continually reach to me with words of support. I can’t begin to express how much I appreciate you all.

Friends making memories.

Kayaking the San Juan Islands

The day after I returned from Seattle, I had my follow up appointment at the University of Minnesota and am happy to report my tumor is still in a stable status. It has been two years since my initial diagnosis, and I’m filled with an immense amount of gratitude for my good fortune. That said, I’m also realistic and know this won’t last forever. I am now considered a long-term survivor. Ten percent of patients with my type of brain tumor survive beyond two years. So, I’m motivated to do more now. I’m focused on making a difference while I can, and I’d like to share a few of the ways I am working to do that.

Working with UW-Stout, Dave and I have established an annual scholarship “Take the Trip!” for College of Design - Interior Design students, available to students that include study abroad as part of their education. When I was in college, my study abroad experience in Scotland had a significant impact on me. It opened my eyes to different cultures and broadened my perspective on design. I’m hopeful that through this scholarship fund, I can help others have the same experience. If you know students attending Stout, considering sharing news of this new scholarship fund with them.

I’m serving as a mentor to people newly diagnosed brain tumors, helping them navigate the care complexities, talk through the emotional impact and sift through all the craziness. To do this, I am working with two organizations, American Brain Tumor Association (ABTA) and Imerman's Angels.

I’m committed to raising money to support brain tumor research. On September 7, a fantastic gathering of friends and family will attend The Humor to Fight the Tumor Gala. Feel free to join us all as we raise funding for local research within Minnesota.

In my previous post, I talked about the trial drug I take, Onc201. This drug is not expected to receive FDA approval for 3-5 years. Most people with my diagnosis just don’t have that kind of time. If you’d like to join me in the effort to advance FDA approvals, consider writing to your congressman or congresswoman. Ask them to support The Promising Pathways Act

And finally, I’d like to leave you with some words of wisdom sent to me from a friend.

“We live in a world filled with wonderful things---with city lights and favorite places, with fantastic opportunities, grand surprises, and plenty of special moments in between. But these aren’t the only things that make our world a delight. And they aren’t the only things that make life rich. Because what really brings these wondrous things to life are the people we know--the ones who make the adventure worth taking, the ones who turn experiences into memories, the ones who make the world better”

They are an amazing organization based out of Minnesota that funds research and patient services for patients with brain tumors. Primary funding goes directly to Mayo Clinic, University of Minnesota and American Brain Tumor Association (ABTA)

This year, I have been nominated by my sister Leslie, to be an Honoree at the 2024 Gala on Saturday, September 7 at the Depot in downtown Minneapolis. And yes, I have been nominated as a patient who has been diagnosed with a brain tumor.

Joy and Euphoria….those are the 2 words that stuck in my mind after my diagnosis of Adult Diffused Midline Glioma DMG in August of 2022. 

Wait… what? 

The doctors told me that this “life limiting” diagnosis is extremely rare with no current cure or promising treatment.  So how I am experiencing Joy and Euphoria? Because I have connected with some amazing people and several fantastic organizations that are helping me navigate through this journey. They have helped me find hope...even when the doctors initially told me to go home and spend time doing the things that I love to do.

And I am doing that.  I love life and all the relationships I have developed with family, friends and colleagues. I find joy in every day whether I am working, spending time with family and friends, enjoying the lake, painting with my radiation mask, traveling or trying to make a difference for others experiencing this rare diagnosis. 

As you read this, for some of you this is no surprise, but for others, I am sorry for the news bomb! There is no easy way to tell people about this so let me help you understand.

DMG is primarily a pediatric brain cancer, impacting children at a young age of about 5-7 years old. It makes up 10-15% of brain tumors in children. It also can impact young adults, typically between the ages of 18-21 and very rarely, it impacts someone my age.

For curious minds, here is how my story started...

In the summer of 2022, I had an unusual feeling that a fly was tickling the inside of my nose. Then, I began to feel a slight numbness on the left side of my nose and lips. My beautiful daughter Jenna, encouraged me to get it checked out.

We started with an MRI to rule out a stroke and voila....a brain tumor was immediately detected. I credit Jenna for pushing me to see a doctor so quickly and feel lucky for what I think was early detection. (My husband and son think my first clue that something was wrong should have been my terrible golf season:)

My tumor is located in my pons, near my brainstem so considered too dangerous for surgical removal of the tumor. Some reading this may recall I took a couple weeks off in September of 2022. This was when I went to Mayo Clinic in Rochester. The biopsy there confirmed my diagnosis.

Since then I have received all continuous care at the University of Minnesota. I started with 6 weeks of radiation and have been fortunate to be on a trial drug (Onc 201, also known as dordaviprone), since January of 2023.

If you have seen me recently, you'll know that I am doing amazingly well. You wouldn't know that I have a "life limiting" diagnosis when talking to me. I am feeling great, working full time, trying to sneak some vacations in when I can, experimenting with the idea that I love to paint, spending time with people I love. I am very fortunate!

You may wonder why am I now choosing to share this information in a more public forum. And that answer for me is easy.

In the last year, I have learned firsthand how underfunded brain tumor research is. For example, the National Cancer Research Institute (NCRI) shows the national spend on brain tumors is only 1%.

I have also experienced how difficult the initial diagnosis is. Any cancer diagnosis is tough and I know a lot about that, having breast cancer 20 years ago. The first few weeks are a blur as you navigate the health care systems, the doctors, the specialists, the appointments, the treatment protocols, as you make decisions about the what, why and where treatments, etc.

With that in mind, I have taken an active role as a volunteer for the American Brain Tumor Association (ABTA) to help other newly diagnosed patients to make sense of this craziness and reassure them they are not alone and there is hope.

Another organization that has become part of my DMG family is The Cure Starts Now based out of Cincinnati. They are funding research, impacting legislation, supporting families, connecting doctors and research across the globe.

The Cure Starts Now has welcomed me as part of a small adult community called Club 22, inspired by Lauren Hill, basketball player (number 22) who single handedly raised a significant amount of money for research. This group supports each other through shared experiences and concerns.

People are generally overwhelmed and saddened when they learn of my diagnosis. And they want to know how they can help.

If you want to support me as I navigate this unfortunate journey with my family, here's what you can do:

We need no pans of lasagna. I need no bouquets of flowers. But I have a calling to be louder and more visible to help raise money for brain tumor research, to improve legislation, to help improve the lives of others going through difficult journeys, like mine, especially for the young children and their parents who are desperately searching for HOPE.

If you want to help me, consider a donation to an organization that funds brain tumor research. Visit their websites to learn more about the organizations and how to provide support. The Humor To Fight the Tumor Gala is September 7. You can sponsor a table, donate an item for their silent auction, make an online donation or come join us. The Kirkbride family will be standing tall that evening as we support the efforts to make a difference and find joy in what many may not understand. I invite you all to visit their website www.humortofightthetumor.org

This is an organization that I care deeply about. Your donation would be better than any pan of lasagna or any bouquet of flowers you could offer me.

I have also partnered with the talented and lovely Yen Chee Custom Pivot Necklace to remind us to pivot and be resilient when life throws hard stuff at you. She will be donating a portion of the proceeds for this necklace to brain tumor research.

I will use this joyphenomenon.com to communicate information relating to my health or to further promote support to the brain tumor community. I also want to minimize my family, friends and colleagues from having to respond to too many questions about all of this and this site should help share updated information.

Find JOY in everything, no matter the circumstances.

I will leave you with a couple quotes about JOY:

Finally, don't be sad, I am doing great and as the mat at our front door says, "Good Vibes Only"

With Joy,

Lisa