Let's Make a Difference

Have you heard of Humor to Fight the Tumor? Well let me introduce you...

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:

"Choosing to have joy is not naively thinking everything will be easy, it is courageously believing that there is still hope, even when things get hard." -Morgan Harper Nichols

"When you choose Joy you feel good & when you feel good, you do good & when you do good it reminds others of what joy feels like & it just might inspire them to do the same."

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

With Joy,

Lisa