A Healing Heart

I have not blogged in a significant amount of time. For those of you who followed Kona’s story on Twitter, Instagram, and Facebook, you know the magnitude of her death. In 13 months I lost Kona and Shaun, which was too much to handle. I felt the need to take a break from this blog and focus on myself for a while. I now finally feel ready to come back and start fresh.

Kona’s death signified the end of what was left of my old life before I got sick. She was my final connection to the old me, and my partner in crime. I fought with everything I had to save her, and still came up short. I am still haunted by the fact that I could not save her, even though I was able to figure out how to save myself. My hope is that Kona will live on in a variety of ways. The first being donating her tumor to research.

Kona’s tumor was divided into three segments: one for pathology, one donated to work on a treatment for Glioblastoma, and another is being stored at Purdue University for a later project. I wake up every morning and the first thing I think about is this. I comb Google Alerts on Glioblastoma, hoping that something will pop up with canines. Perhaps one day, that missing link will be discovered.

Kona with Dr. Embersics at Purdue, enjoying some chicken.

Kona’s story has grabbed global attention, from animal lovers to the rare disease community. As her Mom, it is therapeutic to have people approach me months after her death to tell me they followed her story. Now, Kona is being discussed on Capitol Hill, and I hope to introduce the KONA Act to the 116th Congress in her honor. Additionally, I will be requesting funding for the Purdue University College of Veterinary Medicine. Everyone there from Dr. Bentley, Dr. Embersics, and the staff did everything they could to save my girl. They deserve to have their research funded to the fullest extent possible.

Angel Kona at the National Institutes of Health

I now have a Kona angel that comes with me to all my meetings. It’s a reminder of her and the long road ahead to make sure we find effective treatments for glioma-based tumors. Her pathology report came back: oligodendroglioma. I promised her the night she passed that I would fight until my last breath to make sure they’re wiped off the face of the earth.


Our Journey to Translational Research

I’m writing this on the eve of the most important road trip of our lives.

On 6/15, Kona Bear my sweet Boston Terrier/French Bulldog mix was diagnosed with a 3cm Glioma tumor in the right frontal lobe. The day prior, she presented alarming neurological symptoms that her vet was ill-equipped to handle. Her diagnostic odyssey was similar to mine.

That fateful Friday afternoon, Kona’s neurologist pulled me in a room and showed me the MRI images before the entire scan had been completed. My worst fear was confirmed. My best friend was given 4-8 weeks to live without an intervention.

Fast forward two weeks, and we received confirmation from Dr. Bentley at Purdue University that Kona will undergo surgery to remove her tumor on July 5th. Three weeks after she first showed signs of something being wrong. In the time between diagnosis and our trip, my life has been filled with extreme highs and lows. It was topped off with Kona having a seizure on my face this past Friday night. I was asleep in bed with her when she walked over to me before it started. Thankfully, I had an idea of what to do. Before that, Kona had not had a seizure in my presence (if at all).

Once I began researching Canine Glioma, I was shocked to discover how closely linked dogs are to humans. We are the two species that grow primary brain tumors and our DNA is similar, making research on canines very valuable and easier to translate for human trials. Additionally, dogs and humans live in the same environments and are exposed to similar variables, so the documented side effects from clinical trials are more meaningful. Despite this, the outcomes for both canine and human glioma are grim.

I am dedicated to saving Kona and furthering science. I believe Kona holds data that can help researchers better understand glioma, the effects of surgery and chemotherapy for these tumors.

Tomorrow we embark on a new journey to change translational science.

To follow Kona’s journey, like her Facebook Page: Kona Strong.