Fight Cancer with the Acevedos - Warm Hearts

I’m Aaron Acevedo and my wife Jeannine was diagnosed on December 13, 2021. We thought we’d have more time—a year, at least—after her diagnosis.

 

Jeannine has less time to live because she has terminal glioblastoma, an aggressive form of brain cancer. She’s the love of my life, and I’ve been married to her for 31 years. So I’m asking for financial help to focus on making her time meaningful with our family.

 

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Jeannine is the kindest person I know—the sun shining on everyone she meets.

 

She's the person who’ll take time at a party to talk to anyone standing alone in a corner. My wife never wants anyone to feel left out. Nurturing is in her nature. She loves kids and was a teacher and nanny for many years. As a military family, we’ve lived in many places across the US, and wherever we found ourselves, Jeannine made it our home. Warm and loving, she makes the kind of friends you keep for life. Being part of a close-knit community is vital to her. She creates connections from acts of kindness, whether it’s helping out at a kids’ art show, bringing an injured turtle home in a box, or sitting vigil with a patient in hospice care.

 

Family means everything to my wife, and we moved back to Upstate New York to be close to both her parents and my own. Jeannine and I had hoped to care for them as they grow old. Neither of us imagined that our parents would have to help care for her.

 

In 2004 Jeannine had surgery to alleviate a Chiari malformation, a cranial abnormality that causes pressure on the brain. The procedure was successful, though it left Jeannine susceptible to headaches and numbness. So in November 2021, when we noticed her symptoms were growing worse, we assumed it was her Chiari acting up. Her doctor referred us to a neurosurgeon, and while we waited for her appointment, Jeannine’s symptoms began affecting her work.

 

She had trouble finding the right words. Sometimes she couldn’t find the word she wanted at all. This was fine when she was at home with family or me, but very upsetting for her when she spoke to coworkers or clients. Jeannine calibrates and repairs medical and farm equipment for a living. It’s incredibly detailed and technical work. Jeannine, who has a degree in Education, went back to school in her 40s to gain a second degree in Nanotechnology. I watched my wife work hard to build her new career. During the Covid pandemic, Jeannine was an essential worker. She was proud and dedicated to helping healthcare workers and farmers continue their valuable work. Still, despite trying very hard to perform her daily tasks as usual, she found herself slowing down.

 

A few days later, she lost muscle control in her right leg and began dragging her right foot. Afraid she may have had a stroke, I drove Jeannine to Ellis Hospital in Schenectady. My lovely Jeannine was calm and upbeat while we waited nine hours in the ER. I wasn’t, though I held myself strong for her. Eventually, she had an MRI. And that’s when we learned she had a golf ball-sized tumor in the left side of her brain, next to the motor cortex, which controls movement on the right side of her body and adjacent to her speech center.

 

Jeannine’s condition was so severe she was rushed by ambulance to Albany Medical, where she underwent brain surgery to remove the cancer.

 

 

During the difficult recovery, we learned Jeannine’s cancer was glioblastoma, which meant that even though the surgery was a success and the tumor removed, the cancer would still return. Glioblastoma cells embed themselves in healthy brain tissue, making it impossible for even the most skilled surgeon to remove all of them. After Dr. Weaver gave us her prognosis and gently warned us that only 25% of glioblastoma patients survive a year, Jeannine and I returned home, switched off our cellphones, and held one another on the bed.

 

We are in this together, through thick and thin, in good days and bad days, for better or worse. We’ve been together in this life more years than we have been apart.

 

We need your help to keep Jeannine as healthy as possible as she undergoes recovery, rehabilitation and treatment. Currently, she’s receiving physical, occupational and speech therapy. Essentially she’s relearning how to speak. She’s also working on strengthening function on the right side of her body, which remains weak. She begins chemotherapy and radiation treatment this week. We’re looking at an uncertain road ahead, and like many families, we are struggling with medical expenses.

 

Jeannine cannot work. Her job requires mathematical analysis and the manipulation of specialized tools, which she is currently incapable of performing. She can no longer write and can barely read or speak. On February 1, the disability insurance we receive through Jeannine’s work expires, and we’ll be forced to transition to COBRA. For the first month alone, our copay will be $4,500.

 

I’ve spent many sleepless nights worrying about my wife and worrying about how we’ll cope as a family. We married when I was 19 and she was 20. I served nine years in the Navy, aboard the USS John F. Kennedy Aircraft Carrier and at the Naval Air Station in Jacksonville, Florida, and I’ve never faced a challenge as hard as this. We’ve lost Jeannine’s income, and we’re losing a significant portion of my income too. I’m self-employed. I run a small art studio that produces games and converts existing games to tabletop platforms. If I don’t work, I don’t get paid. Since November 2021, when Jeannine’s health took a turn for the worse, my priority has been caring for my wife.

 

In many ways, we’re lucky that I work from home so I can be there for Jeannine every day. I care for her, make sure she’s comfortable, and cook and clean as best I can. Jeannine’s parents often help by driving their daughter to medical appointments. Other family members help as they can by cooking hot meals or sitting with Jeannine while I run errands. But, as she can’t pick up the phone and make a call when she’s in distress, Jeannine cannot be alone in the house.

I work whenever I can, often late into the night, but my output has suffered. I’m also a diabetic with Stage 4 kidney failure. Very soon I’ll have to go on dialysis while I wait for a transplant donor. Jeannine and I knew this was coming and we worked as a team to put ourselves in a place where we could manage it. But now everything has changed.

 

We’re looking at an uncertain future. No one can predict how Jeannine’s cancer will progress and how it will affect her physical and mental abilities. I admit I’m scared. I concentrate on Jeannine’s health during the day, but most nights I’m awake worrying about how we’re going to pay for her care.

 

My wife is an extraordinary person. She remains one tough and optimistic cookie throughout all the hospital visits and her ongoing recovery from brain surgery. Even though she has difficulty communicating, she finds ways to show gratitude to the people who help her: a sunny smile, gently touching someone’s hand, making eye contact. Connecting. She is so thankful for her family, friends, and the excellent doctors, nurses, and medical professionals who care for her. I watch her try to reassure everyone she’s fine and I’m reminded how lucky I am to have her.

 

She needs your help. I need your help. If by some miracle this humble page raises enough money to help us, we want to help others, too. We plan to help fund brain cancer research. If our experience can give someone else one more day, that would be the most remarkable testimony to Jeannine’s life.

[Amy Marshall is a friend of the Acevedo family, Project Manger at Sigil Entertainment, and managing this page on their behalf. If you have any questions please reach out to her on Twitter.]