Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREMelissa M. sat in the OR waiting room, one hand resting on her belly, the other gripping a hospital chair. At nine months pregnant, she was about to give birth to their daughter — but first, her husband, Joe, had to make it through a craniotomy following a brain tumor recurrence.
“It was so hard,” she said, recalling the moment.
It felt like a lifetime ago that their world had been so different. Just two years earlier, they had been focused on building a life together — recently married with a growing family and a bright future ahead.
In 2018, Joe began experiencing episodes — later identified as focal seizures — along with unexplained hair loss (alopecia), dizziness, and mood changes. However, it took nearly five years for him to receive a formal diagnosis. Doctors attributed the symptoms to anxiety, assuring him that he was fine given his otherwise good health and young age.
“It wasn’t like he was on the ground convulsing,” Melissa said of his focal seizures. “He just felt weird, experienced left-sided weakness, and dissociated for 15 seconds. It was so fast that he would say, ‘I just feel weird,’ and then it would be gone.”
Joe’s episodes progressively worsened until one day in April 2023 when the episode wouldn’t stop. When they made it to the emergency room, Joe could no longer lift his foot off the ground or walk. The MRI uncovered a 7-cm. mass in his brain, and he underwent a craniotomy four days later.
One thing that worried Joe about the surgery was his ability to play music afterward. Having played for as long as he could remember, losing his ability to play would be devastating.
“Joe is a savant of sorts with music,” Melissa said. “He can’t read music, but if he hears something, he can play it. After his first surgery, I brought his tiny ukulele bass to the hospital because he wanted to see if he could still play, and he could.”
The couple became pregnant with their third child when Joe’s grade 2 astrocytoma (IDH mutant) tumor seemed stable. In the summer of 2024, a routine scan indicated a change, so his health care team switched his medication to vorasidenib, which had been approved by the FDA just two days before they learned of the tumor growth.
After being on the new drug for about a month, Joe’s follow-up MRI in October showed more rapid growth of the tumor, so his team recommended surgery as soon as possible.
Melissa, who was seven months pregnant at the time, asked if there was any way to delay the surgery until after the baby was born, but Joe’s neuro-oncologist said they suspected it was now a higher grade, and surgery could not wait. Joe underwent surgery on Dec. 6, their daughter was born on Dec. 20, and he started chemo and radiation on Jan. 8.
“It was a whirlwind,” Melissa said.
As they prepared to welcome their daughter, life threw another devastating challenge their way.
“We found out the day before she was born that it had transformed into a grade 4 astrocytoma with IDH mutation and that he would need chemo and radiation,” Melissa said.
The sleepless nights and constant feedings of newborn life were overwhelming enough, but adding chemo and radiation to the mix made it even more difficult. As they adjusted to life with a newborn, the side effects of chemo quickly set in, bringing a new layer of physical and emotional challenges.
One evening, Joe experienced pain near the radiation site, and his hair began to fall out. Within 36 hours, half of his hair was gone.
“I don’t think it was so much the physical aspect, even though he was tired,” Melissa said of the challenges of radiation treatment. “Emotionally, I think it was harder on him because when his hair fell out, it seemed real — like this was really happening. The radiation has been harder than the craniotomy from an emotional perspective.”
With the help of their community, Melissa has prioritized her mental health amid these big life changes.
“Finding a way to make time for yourself, if at all possible, is really important because being a new parent is hard already, and then adding in brain cancer, it’s just it’s a lot to deal with for anybody,” Melissa said. “So whatever your thing is, make sure you make time for it because you can crack under the pressure.”
For young adults facing a brain cancer diagnosis, the experience often intersects with raising young children, creating its own unique challenges and difficult conversations.
“They found Joe’s initial tumor on our oldest daughter’s eighth birthday,” Melissa said. “She saw me get the phone call and crumble in front of her. She kept saying her birthday was the worst day of her life, so we went all out the next birthday. We needed to trump that memory with an awesome memory.”
Their daughter is also in therapy to help manage some of those feelings and the fear that comes with having a parent with brain cancer.
Joe and Melissa talk about his brain tumor with the kids using honest and age-appropriate language.
“Our 3.5-year-old knows his Dad has cancer, and he keeps talking about how he has no hair,” Melissa said. “He knows Dad is sick and goes to the doctor, but he doesn’t fully know what cancer means. We’re not hiding it, but we’re keeping it at the level that he can deal with. We bought him a book about how his dad is a cancer-fighting superhero.”
Joe enjoys spending his free time with “whatever crazy nonsense they want me to get into.”
“I’m a musician, so I turned our whole basement into a studio before the cancer,” Joe said. “The kids like to come downstairs with me to drum with Dad, record stuff, have fun, and be silly.”
Yet, even in the fun, the underlying reality remains — parenting while living with brain cancer is tough.
“I think the hardest part is knowing your diagnosis and then having the kids,” Melissa said. “It gives you something to fight for, but it’s also extremely emotional. It’s a double-edged sword.”
After working as a bartender for years, Joe got into low-voltage cabling with a company that does building infrastructure. He went from technician to project manager over the years and has felt extremely supported by his company since his initial diagnosis.
“I jumped right into work like I had never left,” Joe said about returning to work after his first craniotomy. “I was immediately overwhelmed, and it took its toll on me. I then had to back down a little bit and take things a little slower.”
Joe also had to adjust his role because he had to re-learn how to drive after his initial surgery. He started working remotely and eventually was able to drive to the office. He now no longer does site visits because the traffic patterns and city traffic can be overwhelming to him.
“We had to come up with a game plan with my boss to see what solutions could be helpful to both sides,” Joe said. “You want to come back and be helpful, but you don’t want to come back in and hurt yourself either. It’s overwhelming.”
Fortunately, his employer is understanding of any limitations that Joe might have and has been willing to work with him to find suitable compromises that make sense for both him and the company.
“After Joe’s first surgery, I was surfing the internet while sitting next to Joe, who was out cold in his hospital bed,” Melissa said. “I felt like I couldn’t control anything, which I hate, and I found Race for Hope DC. It was only a few weeks away, so I joined, set up a team, and we had a bunch of people show up.”
Joe used a wheelchair for most of the 5K walk in 2023 before deciding he was going to walk the remainder and cross the finish line himself. He completed the race using his cane just three weeks after his craniotomy — a moment that will forever be ingrained in their memory.
Joe encourages fellow patients to come to Race for Hope DC this spring: “At the very least, you’re going to get some of your closest friends and family doing the walk with you. If that isn’t empowering, I don’t know what is. It was very meaningful to us.”
Events like NBTS’s Race for Hope DC raise critical funds to accelerate brain tumor research, provide patient navigation and support, and champion patient-first policies and federal research funding.
Join Joe, Melissa, and thousands of others in D.C. on May 4, 2025, for a morning of celebration, remembrance, and hope. Register by April 3, 2025, to receive an event t-shirt.
Joe and Melissa found strength in this community — now, you can be part of it, too. Join them at Race for Hope DC and make a difference for families like theirs.
TAGGED WITH: astrocytoma