Rare Community Profiles

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Living with Gratitude: How Kate Remained Positive Through Her Two Battles with Glioblastoma

Throughout her adult life, Kate White occasionally experienced headaches. Like many of us do, she attributed them to everything going on in her life. After all, she was busy—she still says that she thrives on stress—being the library media specialist for a large school district, studying selling real estate, and running Ziggy’s Ice Cream with her husband.

But the chronic migraines became worse. Her symptoms would last for over a week at a time and became difficult to treat. By May 2019, Kate was just trying to make it through the school year. She figured that she could rest after Memorial Day weekend. If she just lasted nine more days, she thought, things would be fine.

Except things seemed to worsen. One day, the mother of three put two contacts into the same eye. The next thing that she knew, she was laying on a couch in the library at school. Concerned about throwing up, there was a bucket next to her. She shares:

 “It was a day at work where I had a million and one things to do. I needed my game face on, but couldn’t get there. Finally, I texted my friend saying that I was going to be sick and asking if she could sit in on an interview for me. I went home, my husband came home, and the next thing I remember was waking up the next day at Henry Ford Hospital.”

Doctors had found a ping pong ball sized mass in her brain. Kate had glioblastoma.

About Glioblastoma

Glioblastoma is a rare brain cancer. It is also the most aggressive cancer to originate in the brain. It is characterized by its rapid progression and poor response to most treatments. In most cases, the cause of glioblastoma is not known. A small number of cases evolve from another type of tumor called an astrocytoma. Risk factors for glioblastoma include genetic disorders such as Turcot syndrome and neurofibromatosis, exposure to pesticides, smoking, and a career in petroleum refining or rubber manufacture. Symptoms of glioblastoma include personality changes, headaches, memory loss, seizures, vomiting, and nausea; patients may lose consciousness in late stages. Treatment approaches include anticonvulsants, steroids, chemotherapy, radiation, and surgery. While a small number of patients can survive for several years, treatment is often ineffective, with the tumor relapsing quickly. Five year survival rate is only three percent. To learn more about glioblastoma, click here.

Kate’s Story

When Kate first woke up in the hospital, she doesn’t remember being scared. Instead, she took in the imagery of the people surrounding her, the bright lights, the white coats. The doctors all looked shocked that she was alive. Kate explains:

 “I learned that I had been unresponsive the night before. The ambulance originally took me to a local hospital where my cousin Becky, who is a physician, advocated for my care. Ambulance workers thought I was there for drugs, but my cousin was insistent that I needed a CT scan. If she didn’t fight for that, I would have probably died. Once the CT scan results came back, my family moved me to Henry Ford – which I consider a divine intervention, it is an amazing place. Every person was so compassionate, caring, and kind. They’re like my friends and family. I’m confident that I’m alive because of everyone at Henry Ford, and I’m so thankful I had them in a truly life-or-death situation.”

As she spoke more with the healthcare team and her family, Kate learned that the swelling in her brain had been so bad that doctors worried she would have a stroke. She was also told that she had been diagnosed with glioblastoma and that she would have to undergo surgery.

The first thing that came to mind as she processed: gratitude. Says Kate:

 “I felt grateful that my headache was gone and that I was still alive. I was so grateful that I couldn’t stop talking to everybody. I didn’t feel fear. Staying busy and making friends with everybody on my floor was great. Becky even joked that if I didn’t stop talking so fast all the time, they would have to put a muzzle on me.”

At first, Kate wanted to research and read all about glioblastoma. But doctors cautioned her against it, asking her to first focus on her health and think about the details later. Thinking back, she’s happy that she didn’t end up down the rabbit holes, researching everything that could potentially happen. Instead, Kate enjoyed binging television shows.

After eight days on steroids, the swelling went down enough for Kate to undergo an awake craniotomy. The doctors needed to ensure a residual margin around the tumor and remove all malignant glial cells. The surgeon told Kate that they had recently started using an optical imaging agent, called Gleolan®, that would turn her tumor a bright pink hue and therefore enable him to resect as much as possible. They described use of this agent as making the difference between doing brain surgery in the dark or with the lights on, and Kate said, ”Sign me up!”

She says:

“I lost my dad a few months before my surgery. But while I was undergoing surgery, I remember talking to him. And I survived, with minimal side effects. I was told that I might lose feeling in my hands, have slight facial paralysis, or have hearing loss. While I do have a few changes in peripheral vision and hearing loss in my left ear, I was relatively unscathed. I even did a fist bump and yelled, ‘No deficits!’ after surgery.”

The Second Battle

Following a few rounds of chemotherapy and radiation, Kate went back to work and back to her life. The next four years brought tons of smiles, laughter, and amazing health. She began pursuing her PhD. Then, last summer, Kate got the nagging feeling that something was wrong.

It was July 4th and Kate had a crushing migraine. She treated it and brushed it off. When she went back to work in the fall, the headaches began to worsen. In mid-September 2022, an MRI showed that Kate’s glioblastoma had returned. She says:

 “I had already known, but I wasn’t ready to admit it to myself. Once it was confirmed, I wanted to treat it aggressively and complete the surgery.”

Kate called her dissertation chair for help. Both the dissertation chair and Kate’s daughter rallied behind her, helping her to arrange and finish her dissertation on the importance of mentorship in an online learning environment. Kate explains:

 “I had worked so hard to get to that point that I needed to finish. Seven to ten days after I learned about the tumor recurrence, I underwent surgery. But I successfully defended my dissertation the day before.”

This time, the tumor was located in the sensory cortex. Although the surgical resection was effective, once again with use of the imaging agent that lit up the tumor area, the doctor did not do the margins, worried that it would paralyze Kate completely on the left side. Now, she says, she simply has a weak left hand. And if that’s all she has to deal with, she can handle that.

Ever the Survivor

At 48 years old, Kate knows that she has the rest of her life in front of her—and she’s committed to living it with as much zest and vigor as she can. She plans to retire from teaching in January to become a real estate broker. Alongside her husband, she runs fundraisers through Henry Ford’s “Game On Cancer,” including a 5k run, ice cream fundraisers, and a dunk tank for the doctors. With a laugh, Kate says:

“My mom wants me to slow down and rest, but that’s not me—before or after brain surgery.”

More than anything else, Kate aims to connect with people. To share her story. And to pass on the importance of gratitude. As she recounts the lessons that her journey has taught her, she shares:

 “I just want to live while I’m here. I want to live with a grateful heart that I’m still here, still alive. I continue to be an active participant in life. Why would I allow my diagnosis to limit my life? As long as I’m here and healthy enough, I’m going to live. Many people think of brain cancer as a death sentence, but I refuse to believe that. Right now, I’m thriving. I’m a five-year survivor, which is huge. My kids tease me that I’m overly positive. But I want to be remembered as someone who is positive, who made a change.”

Although she recognizes that this journey is different for everybody, Kate wants to remind people that they are not alone and that they have options. That they should have the surgery, do the chemotherapy and radiation, and find a community to rally behind them. But most of all, she says:

 “I want to remind people to live. Don’t just accept it. Despite a grim diagnosis, don’t let your body tell you that it’s a death sentence. Get out of your own head. Get up and live. We’re all going to die one day. And this might be what takes us out. But live until it does. Continue to participate in this beautiful life.”