Glioblastoma (GBM) is one of the most complex, deadly, treatment-resistant cancers that accounts for 48% of all primary malignant brain tumors. According to Dr. Jeff Knipstein, Medical Director, Medical Affairs—Hematology/Oncology, “GBM is the most common malignant brain tumor in adults. It originates in any part of the brain or spinal cord, and it develops from glial cells, which are the structural cells that hold the neurons together in the brain and spinal cord.” It can affect anyone at any age, and it’s incredibly taxing on the patient, their families, and caregivers. While this disease is unfamiliar to the general public, one of our employees witnessed a loved one fight GBM firsthand.
Our very own Lisa Lenrow, Senior Director, Domain Consulting, lost her husband Jon to GBM in July 2019. As a caregiver, Lisa researched GBM at length. She spent nights and weekends educating herself on the disease in addition to attending support groups with Jon. In light of GBM Awareness Day, we spoke with Lisa to share her story and discuss why more conversation surrounding GBM needs to happen.
Tell us about Jon.
Jon loved people, pets, and playing golf. He also loved me deeply. For the past 20 years, Jon was incredibly proud to work with his Peirce College family. He built his career at Peirce because of his love of teaching and his advancement to Dean. But most importantly, he loved working with his colleagues. Jon went to work every day, eager to make a difference for both students and faculty. He truly loved his job.
How did you learn about GBM? Did you hear anything about it before Jon’s diagnosis?
We both heard about GBM in 2015 when a friend’s brother was diagnosed. I often wonder if Jon showed any warning signs that we didn’t see.
In the summer of 2018, his golf game was off. He lost his powerful drive. Jon’s symptoms progressed to an unbalanced gait, intense fatigue, and unrelenting headache. After three consecutive days on the sofa, he agreed to go to the ER, where he was diagnosed with a brain mass.
After Jon’s passing, I’ve continued to educate myself about GBM and I get involved wherever I can. I heard of someone within PRA who had lost his wife to GBM, and my ears lit up. I can’t recall who that gentleman is, but I’ve thought about how much I sympathize with him about GBM—I’m living it right now.
Then, I was made aware of PRA’s first Rare Disease Day and that GBM, although quite common, is deemed a rare disease. I sat in the back of the room, listening to the various speakers. One of the speakers was Rob Long, the Executive Director of Uplifting Athletes. I can’t remember if his diagnosis was a GBM, but he had a brain tumor that I've come to find out was resected by the same physician who took care of my husband.
So, much of my GBM exposure came from PRA. They included me in as a moderator for one of their panels on the second Rare Disease Day to provide a caregiver perspective. I thought the discussion around the impact of patient and caregiver reported outcomes on drug development and approvals was great.
What did you learn from Jon’s experience? What was tough about the treatment process?
I learned to not ignore your body. I can’t help but think when Jon was oversleeping in the morning and sleeping through his train stop on the way home, we could have caught the tumor earlier. Once he was diagnosed, I wish I had time to do additional research on physicians and clinical trials.
I felt pressured to act quickly and we were limited by what was in Philadelphia—thankfully a city with many options. Yet no one prepared me for what to expect after surgery, such as rehab and the need to make our home safe for Jon. I had to drive him to his daily radiation treatments, followed by a chemo regimen, frequent doctor appointments, physical therapy, and two trips to the emergency room.
Due to the placement of his tumor, Jon’s doctors were only able to do a partial resection. But his tumor responded so well to treatment, and I let my guard down. I wish I used that time to research what to expect next because a partial resection means that the tumor will come back. Thankfully, my healthcare experience allowed me to speak to doctors and translate for Jon, but my experience didn’t allow me to keep the dots connected. I learned that physicians don’t talk to one another, especially when they’re from different health systems. This prevents continuity of care, especially when the tumor returned, and I had to decide on palliative care or hospice.
I was front and center with Jon. I was part of Jon’s care from day one and never left his side. But what happens if there isn't a caregiver? What happens for a person who’s unable to speak for themselves or doesn't have an advocate by their side? Our healthcare system is strapped. Yes, they did everything they could to keep Jon comfortable and nourished, but it takes a lot of one on one with patients and they don't have that time. The healthcare providers we experienced were nothing shy amazing, but there are still not enough of them.
I think the fact that Jon was diagnosed with Chronic Lymphocytic Leukemia (CLL) meant nothing for his GBM. It did, however, impact his ability to be entered into a clinical trial because he had that pre-existing condition. I couldn't get his tumor tissue donated, which is something I think is very important to help further research on GBM. I also wanted to make sure his organs got donated because he was a registered donor, but I had to figure out how myself. When I figured it out, I found out his organs couldn't be donated because of his CLL.
I have read a few books since that says the treatment of one cancer may often lead to another cancer. When Jon's oncologist-hematologist chose to treat the CLL, did that lead to the brain tumor? I’m not sure. Still, I wouldn't have changed any decision we made to treat the CLL, because the physician recommended we do so.
That first night of treatment for CLL was beyond awful. I don’t know how my husband mustered the strength to go back the second day for round two of treatment. He completed the treatment and the CLL went into remission. I still don’t know if that treatment caused his brain tumor. I definitely wish I had paid more attention to his chronic fatigue.
We're all somewhat knowledgeable in healthcare. I've worked in this field for years. I know enough about healthcare to be dangerous, but I wouldn't know how to question an oncologist’s decision.
During Jon’s treatment for GBM, he was on disability. Since he worked for the same employer for so long, he had tons of vacation days for which he was paid before short-term and long-term disability kicked in. I was afraid to go out on Family Medical Leave, though. I didn’t want our income to be hindered, and I didn’t want my work product to suffer. I have a professional reputation to uphold, so I had to keep those dichotomies in mind. I constantly had to balance my day job with setting aside hours to care for Jon and research what was going on with my husband.
When Jon was going through radiation and chemo, we were made aware of a support group. I told Jon that I'd like to go, and he was not interested. I said, “Look, I don't love this stuff either, but it's for caregivers too. I would like to talk to other people.” I think Jon was afraid to go. He didn't want to meet people who were suffering. But we went, and we were incredibly surprised at how wonderful the support group was. They handed me a packet that I've saved, which was in itself just a hodge-podge of things in a folder.
Jon was such a smart, witty man. He said to them, “Why are you giving this to my wife now? She spent every day in the hospital in advance of my surgery and then for the days following surgery. Why didn’t she receive this packet of information the day she became my caregiver? If we didn't come to the support group, she wouldn’t have this valuable information at her fingertips.”
When Jon took a turn for the worst in June of 2019, he was back in the hospital where the support group took place. Not once did anyone in that support group, medically or non-medically, come to his room to visit us and check in on us. My feedback to that group was that support doesn't end when the going gets tough. The nature of this particular support group was “rah rah rah” when all was going well, but crickets when things weren't looking so bright.
I was never handed essential, easy-to-understand info about this disease, his condition, and his treatment. Nothing at all. We relied on Google, learning as we went. Once his insurance company learned of his diagnosis, I was inundated with paperwork, overwhelmed by the process of how to obtain his medication. There was so much about the journey that we were unprepared for.
I want to have a voice in the community about the lack of continuity of care. There were handoffs within the hospital and handoffs outside the hospital to hospice with no continuity. I made the mistake of assuming that everyone was speaking to each other and they had my husband's best interest and wellbeing in mind. I'm not saying they didn't, but they didn't connect the dots. They didn’t pick up the phone and speak to one another. If I could change anything, I would want to change that.
Jon was never one to be loud about anything, and that's not my way either, but his life ended in my care. I called the hospice care in the middle of the night, telling them that I thought that the end was here and they should come over. They never came. There he was, home on hospice, and nobody came to my aid.
I wrote a letter to the hospice organization. They responded by saying they have made changes based on the information that I shared with them. I'm really pleased about that, but honestly, I’m going to send them another note, now that it’s a year later, and ask how these changes went into effect. I wanted to do this to be sure I didn't get lip service. I absolutely was heartbroken by the way things ended for my husband.
Can you talk more about Team Love of Lenrow (LoL)? How did you set that up and what do you do with your team?
We learned of the National Brain Tumor Society’s Race for Hope from Jon’s doctors. While Jon was undergoing treatment, I set up the team. It gave Jon something to hope for as he was determined to be at the event in October 2019. He definitely wanted to be there. He was determined to be at the race last year. I told him we’ll push you in a wheelchair if we have to. You're going to be there one way or another. Jon was a fighter. He did his physical therapy exercises. He did his mental challenges to make sure his brain stayed sharp. He began each morning by saying, “F’ cancer.” Only, he didn’t censor himself.
I rallied the team to spread the word and raise money, with the ultimate goal to have a team tent the day of the event. While he was alive, I tried to think of a team name so he could have something to aspire to and look forward to. Jon was into abbreviations, so LoL just seemed so appropriate, not just because of what it means normally. Team LoL doesn't have a bad connotation! He was an avid fan of the Grateful Dead, so team LoL shirts have Jon's image and a nod to the Grateful Dead. The proceeds of those shirts went to the team and ultimately to the National Brain Tumor Society.
There are so many people that love Jon and he gave love in return. It was just the most appropriate name. We loved that name and we embraced it. The group inspired him and gave him hope.
When the day of the event came and he wasn't with us, I didn't know what to expect. I had never been to this event previously. It brings together thousands of people at the Philadelphia Navy Yard. Before the 5K starts, they actually have a rabbi reading all the names of those who have lost their battle with any sort of brain tumor. I was able to get Jon’s name read on that list. It was a beautiful memorial.
I wanted to raise enough money to have a tent so we had a place to gather. In addition to the tent, we ended up having a sign at the end of the 5K with Jon’s name. I walked the 5K with my mother-in-law, who was 81 years old at the time. She'd never in her life walked a 5K. I thought for sure we would need to have some help towards the end, but she made it. As we finished up the walk, she came across the memory sign of her son. It was an incredible moment during an incredible event that brings the community together.
How can GBM be brought more to the public eye? How can people help patients and families like yours spread GBM awareness?
It’s a matter of raising awareness through storytelling—that’s a great way for people to take action. I think sharing Jon’s story will inspire someone to be brave and talk about their story. I was watching the Today Show just last week and there was a story that caught my attention about a male nurse from Arizona who came up to New York to help with COVID-19. He's an emergency room nurse and he just dedicated his time and talents for a number of weeks to help where his help was needed. When he returned home, he was diagnosed with GBM. He was interviewed on the show with this big surgical incision across his head. From what I gathered from the story, they did a partial resection. I couldn’t help but feel like the next time we hear about this gentleman, it will be about his passing.
I used to give to charities when I was moved to do so, not believing the money would make a difference. I now know that is no longer true and I see the importance of every penny. The funds are used to find effective treatments, provide support services for patients and caregivers, and ideally lead to a cure. This funding can come from Capitol Hill, where legislators can be compelled to appropriate funds to the National Institutes of Health (NIH) and the National Cancer Institute (NCI). Individuals and corporate sponsors can give to the National Brain Tumor Society or the American Brain Tumor Association to further medical research. It’s my understanding there’s a lot of work happening in the lab, but it’s unable to move to clinical research without funding.
There’s value in commercial messaging that tells you to get tested or treated for certain diseases, but the only way GBM will become more recognized is to give it more airtime. This isn't a disease that affects a sub-set of the population. It affects anyone, at any age, at any time.
According to Dr. Knipstein, the National Brain Tumor Society is one of several brain tumor-specific advocacy groups and foundations that help us spread awareness of central nervous system tumors in general as well as GBM, and provide education to patients and families. In terms of research, Knipstein says that “there are various consortia for clinical trials in North America as well as globally that help run clinical trials for GBM patients.”Learn more about our dedication to neuroscience & pain research.
Mindfulness with Roger Pelletier
Stop—take a breath. Notice it. Notice your body relax. Become aware of where you are. Acknowledge your thoughts, but don’t cling to them. Let them go.
Responding to the COVID-19 Pandemic in More Ways Than One
PRA’s global response to the COVID-19 pandemic has been thoughtful and deliberate, keeping in mind not only our industry, but all the people our…
A Critical Success Factor in Rare Disease Clinical Research: Patient Advocacy Collaboration
In most public sectors, understanding the end user’s perspective and building out a product strategy around it is nothing short of dogma. However, in…