Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on November 18, 2022 in Event Participant, Brain Tumor, Pediatric Brain Tumor, Fundraising, Stories, Caregiving
Guest Author: Jessica O'Brien
Earlier this year, I joined a team of 50 Gray Nation Endurance®️ athletes training to run in the 2022 NYC Marathon to raise critical funds for the National Brain Tumor Society. Training for the marathon was just what I needed to survive as a caregiver. It’s surreal to look back at the past year and all that our family has overcome since our then 5-year-old son, Chase, was diagnosed with a brain tumor on Nov. 2, 2021.
While Chase was trick-or-treating as Iron Man last year on Halloween, we noticed he was having trouble walking up and downhill. It was like his coordination and balance were off. Plus, he didn’t have his typical excitement about trick-or-treating. He is usually energetic and outgoing, so it was very strange.
We had noticed some unusual behaviors for a couple of months leading up to Halloween. In August, he started toe walking out of nowhere, so we tried physical therapy to stretch out his Achilles tendon. We saw no improvement after a month of physical therapy. He fell off the table at PT and hit his head, which triggered daily morning vomiting for two weeks. The pediatrician attributed the vomiting to a virus. I had sent my husband a text about a week into the daily morning vomiting when he was out of town. In the text, I said, “I’m pretty sure our kid has a brain tumor. I’m a nurse and still can’t get anybody to listen to me.”
Chase was having a hard time focusing and putting his LEGOs together. He was struggling to get on his scooter, which was something he used to be able to do easily. His kindergarten teacher also mentioned that he was having trouble cutting and finding pieces of paper on the ground. Our pediatrician’s office and even urgent care insisted it was a virus.
The day after Halloween, he woke up with a left-sided facial droop and severe left-sided weakness. As a registered nurse, I immediately thought he was having a stroke. About 45 minutes after arriving at the hospital, we were pulled into a room and told that Chase had a massive brain tumor growing inside his brainstem.
We didn’t even have time to tell Chase what was happening because, at that point, Chase’s brain was herniating. It was a very emergent situation, so they sent the chaplains down to talk to us. They intubated him and put in an intraventricular drain to relieve the pressure because the tumor was blocking the flow of his cerebral spinal fluid. After a 4.5-hour MRI of his brain, spine, and neck, they scheduled emergency surgery for the following morning.
In two days, our son went from trick-or-treating to emergency intubation. We endured the longest 10 hours of our life wondering whether Chase would make it out of surgery and, if he made it, what deficits he would face.
During his 11-day pediatric ICU stay, we learned he had juvenile pilocytic astrocytoma (JPA). He relearned how to walk, swallow, and feed himself — missing 52 days of his first year of school. Chase started chemotherapy in May 2022, and we expect him to finish in July 2023.
Receiving the news of his brain tumor diagnosis was terrifying, exhausting, and excruciating. It was the worst thing you could imagine because it’s your child. I spent a lot of time in nurse mode, believe it or not, trying to use my background to help control the situation. I suppose that would be considered caregiver mode. We went from a completely normal life to being awake for three straight days.
Looking back at this point, I think the biggest thing you fail to do as a child’s caregiver is also to take care of yourself. If you, as a caregiver, can’t take care of yourself, first and foremost, you can’t take care of someone else. That was a tough lesson to learn.
Within the first three months that we were home from the hospital, I realized I had a big anxiety issue. I wasn’t taking care of myself. I didn’t want to get up off the couch and do anything. At that moment, I realized that something was very wrong. I recognized I needed to talk to my doctor about starting medication to help me be the best person I could be.
As a long-distance runner in high school and even at the collegiate level for Lynchburg College, running is just something I have always enjoyed. I didn’t realize until March that I had not run since Chase’s diagnosis, which negatively affected me.
I knew that you could run a marathon and support a charity in the process. I thought running the New York City Marathon would be something cool to do for myself. The farthest I had run was a half marathon after college. A Google search led me to the National Brain Tumor Society website and their Gray Nation Endurance team. I saw these people raising money, and their incredible stories inspired me to apply.
I thought training for a marathon would allow me the time to get back to my baseline — back to the person I was before this happened with Chase. I could invest my time into something that I love while giving back and helping fund research for brain tumors and support for caregivers.
I also wanted to show Chase that while he’s going through something hard, I can do something really hard too. We can both do something super hard together, and we can both persevere.
Running is my outlet. It makes me a better person and helps to ground me and settle my brain. It’s also my “me” time because, as a mom, it’s tough to find “me” time outside of working, taking care of children, and getting him to appointments. Running is the one time that I have just to be alone. It is freedom. Needless to say, my mood is so different when I’m able to run and have that “me” time.
My husband has been a great support person. When I run during the week, he goes to work, comes home, and walks in the door. I then walk out the door to run. He coordinates dinner for us, so I can have that time to run. On the weekends, he is always present for those 3.5 to 4 hours that I am out the door and gone.
I offer the same support to my husband. We make it happen if he wants to golf or have dinner with his friends. For example, he’s going on a golf trip this fall with his buddies.
I’ve learned that you have to accept the support, whether it’s from your family or friends. I struggled with accepting help from others. Moms think that we can do it all, but we can’t. I started accepting help from others, whether it was a meal or someone watching Chase for a few hours so my husband and I could grab dinner together. I also tried accepting my girlfriends’ invitations to grab a coffee or have lunch. My support system really has made all the difference this year.
We celebrated Halloween this year in a big way. Chase went as Luke Skywalker, so we did a family Star Wars costume theme. I even found a Chewbacca costume for one of our dogs. It’s hard to believe that it’s been a year since his diagnosis, which is why Halloween this year was an important milestone to show how far he has come.
Before the year wraps up, Chase will celebrate his 7th birthday on Dec. 8. Last year, we couldn’t throw a big birthday celebration, so this year will be the biggest birthday party ever. We can’t wait to celebrate our courageous son and all he has overcome in the past year.
Nov. 2023 Update:
Jessica withdrew from the 2022 NYC Marathon due to illness. After two years of training, Jessica successfully completed the 2023 NYC Marathon in honor of Chase.
Jessica shared, “Running this marathon meant everything to me as it marked a pivotal moment in our lives. I was finally able to complete something I’ve been training for over the past two years, and Chase completed his chemotherapy and had his port removed marking the end of his journey! Running a marathon was easily the most difficult thing I have accomplished, but seeing Chase and my husband along the course gave me the courage to endure and cross that finish line. Chase is now the owner of a beautiful NYC Marathon medal.”
Gray Nation Endurance is the official endurance program of the National Brain Tumor Society. Whether you run, ride, swim, hike, or paddle for NBTS, you can celebrate a survivor, pay tribute to a loved one, or make an overall difference with your miles. Join NBTS and individuals like Jessica around the country by applying for a charity team or selecting a race or endurance activity of your choice.
