Holding On to Her Spark: A Daughter's Story of Caring for Her Mom Through Myeloma and Plasma Cell Leukemia

“My mother is my best friend,” says Shannon Van Epps. When her mother, Donna, was diagnosed with multiple myeloma and plasma cell leukemia at age 75, Shannon became her full-time caregiver.. A year and a half later, Donna is in remission for the second time. 

Shannon says this story belongs to both of them. “It’s us. It’s both of us,” she says. She is sharing their story because she remembers how lost she felt at the start. “I definitely want to be able to be helpful for other people.” 

Before her diagnosis, Donna had owned a marina with her family in their Connecticut hometown and had worked as a hairstylist before that. She has a wide circle of friends and is known for her love of all things sparkly.

Shannon and Donna’s bond was shaped by deep loss. Shannon’s brother died suddenly in 2010 at age 32, and her sister died about a year and a half later. Each time, Shannon moved in with her mother so she wouldn’t be alone. She later helped care for her grandmother, too. “I’ve always been kind of a caretaker,” she says. Those losses also left Shannon with post-traumatic stress, especially around hospitals. 

A cardiology checkup led to a myeloma workup

For about two months, Donna had what she thought was a stubborn sinus infection. In February 2025, Shannon took Donna to a routine cardiology checkup. Donna could barely walk and had to hold on to Shannon to get inside. “What’s going on? This is not normal,” Shannon remembers thinking. The cardiologist later told her it was the worry on her face that led him to other blood work, including tests for myeloma.

That night, Donna called Shannon and told her that the results showed something wrong with her blood and she needed to go to the nearest emergency room right away. In the emergency room, doctors diagnosed Donna with multiple myeloma and found that she had several serious problems at once, including pneumonia, three fractured ribs, and an acute kidney injury. 

Shannon had never heard of myeloma. Multiple myeloma is a blood cancer that affects plasma cells, a type of white blood cell. “We didn’t have cancer in our family,” Shannon says. Hearing “blood cancer” made it feel even more frightening. “You can’t function without your blood,” she says.

Holding it together for her mom

Those first days were frightening. Donna’s kidneys were failing, she had internal bleeding, and her doctors weren’t sure she would make it to the next day. Shannon never left her side. 

At one point, Shannon broke down in the hallway during a conversation with a doctor. He gently pointed out that whenever he came into the room, Donna watched Shannon’s face, not his. He encouraged Shannon to stay upbeat and try not to cry in front of her mom.

“My mother feeds off my energy,” Shannon says. “I knew I had to do that for her because if I cried, I knew that she would cry. Then she would know that it’s really bad.” 

So Shannon smiled through her fear. Inside, her mind was racing. “How am I going to save my mother?” she remembered thinking. “Because losing my brother and sister, my mother is my only family.” 

One day, sitting at Donna’s bedside and holding her hand, Shannon asked her mother for a promise. “You have to look me right in the eyes right now and promise me you will not give up, that you will continue to fight. Giving up is not an option,” she told her.

“And she promised me that,” Shannon says.

A rarer diagnosis and a paper planner

As more test results came back, Donna's doctors found that she had plasma cell leukemia as well as multiple myeloma. Plasma cell leukemia is a rare and aggressive form of plasma cell cancer. Instead of staying in the bone marrow, large numbers of cancerous plasma cells travel through the bloodstream. Donna's bone marrow was completely filled with myeloma cells, and 55% of the cells circulating in her blood were plasma cells.

Understanding this new diagnosis and keeping track of everything was a challenge. Shannon bought a 365-day cancer planner with sections for doctor's notes, medications, meals and appointments. "It was my Bible," she says. She brought it to every appointment for a full year and recorded everything from her mom's weight to her blood pressure. "I've got to see it on paper," she says.

At night, back at the hotel, Shannon read every note in the online patient portal. She often researched until 4 a.m. She chose not to have Donna read the portal herself so she wouldn't add to her mom's anxiety.

In the early days, Shannon found support through the International Myeloma Foundation, where someone helped her make sense of tests like the bone marrow biopsy, fluorescence in situ hybridization (FISH) and flow cytometry. FISH looks for specific genetic changes in myeloma cells, and flow cytometry counts and identifies abnormal cells in a sample. She also read patient stories on HealthTree. "I didn't know what to expect," she says.

General internet searches were harder. Online statistics for plasma cell leukemia gave a grim outlook, and those numbers weighed heavily on her. "Google is the absolute worst because a lot of the information is outdated," Shannon says. Survival statistics are based on groups of people treated years ago, so they often don't reflect newer treatments, and they can't predict how any one person will do. "Everyone's cancer is different," Shannon says.

Today, Donna is more than a year and a half past her diagnosis. "My mom is living proof," Shannon says.

Donna returns home and Shannon moves in

When Donna left the hospital, she couldn't walk or even lift her leg into the car. Shannon and Kevin had barely slept in a month. "We were on empty," Shannon says.

The hospital arranged occasional home visits, but Donna needed help around the clock. She also had treatment three days a week, and each visit, with blood work, transfusions and treatment, took six to seven hours. Shannon and Kevin made the hard decision to hire a private nurse for the first two months.

The nurse, Karen, lived with Donna and helped her move from bed to wheelchair, to the bathroom and into the shower. "I would have to say it was a luxury because I see other people that don't have the help," she says. "Karen was a lifesaver."

By April 2025, Donna had reached a very good partial response, meaning her myeloma levels had dropped by at least 90%. She was getting stronger and could walk to the bathroom with a walker. Still, she couldn't live on her own. So Shannon and Kevin moved in with her, even though their own condo was in the middle of a renovation.

Shannon has driven her mom to every appointment, and Kevin has been at most of them. "I don't think I've had a real night's sleep since February 11th when this all started," Shannon says. "But I wouldn't change any of it either."

Remission, relapse, and a new option

In October 2025, Donna's bone marrow biopsy showed she was minimal residual disease (MRD) negative. MRD testing looks for very small numbers of cancer cells that standard tests can miss. MRD negative means none were found at the test's level of sensitivity. Shannon threw her mom a remission party with all of her friends.

At a follow-up appointment three days after the party, the results of a positron emission tomography (PET) scan, an imaging test that shows active cancer throughout the body, brought devastating news. The disease had returned in Donna's jaw and legs. This return of cancer is called a relapse.

"It's a rotten beast," Shannon says of plasma cell leukemia. She wanted her mom to understand that they would keep fighting. "This doesn't mean we're giving up," Shannon says. "It's not your time."

Donna's doctors recommended chimeric antigen receptor T-cell therapy (CAR-T). CAR-T is a type of immunotherapy. Doctors collect a patient's own T cells, a type of immune cell, and change them in a lab so they can find and attack myeloma cells. The cells are then infused back into the patient. CAR-T hadn't been an option at first because Donna was too sick when she was diagnosed.

To prepare, Donna had to avoid infections at all costs. The family canceled Christmas, which Donna had always hosted. When Shannon's daughter came home from Colorado, Shannon made sure she was sanitized before coming inside. "I was like a security guard," Shannon says. Even so, Donna caught respiratory syncytial virus (RSV), a common respiratory virus, and her CAR-T had to be postponed twice.

The months of isolation were hard on Donna, who had always been a social butterfly. Some friends drifted away. "The phone stops ringing after a while and that loneliness sets in," Shannon says.

On April 20, 2026, Donna was admitted for CAR-T. In July, 93 days later, her bone marrow biopsy came back MRD negative again. "We are thrilled," Shannon says. Donna reached Day 100 with no infections.

After last year's relapse, Shannon admits the good news comes with worry. "There's still that feeling in the pit of my stomach," she says. "When is it coming back?"

Keeping Donna’s spark alive

Throughout every stage, Shannon looked for ways to help her mom feel like herself. "Anything that I could to make her feel normal," she says.

Her hair. Donna was a hair stylist before she ran the marina. "Her hair and her makeup was her signature," Shannon says. Donna's early treatments didn't cause hair loss, but the bridging therapy she received in February 2026 did. Bridging therapy is treatment given to control the cancer while a patient waits for CAR-T. When her hair began falling out in clumps, Shannon called Donna's friend Susan, a retired stylist, who trimmed it short to avoid scalp irritation. Shannon then found a wig maker who made Donna a beautiful wig. Losing her hair was still painful for Donna, because it was an outward sign of how sick she was.

Her nails. While Donna was isolated before CAR-T, Shannon found a nail technician who came to the house. To lower the risk of infection, Shannon bought professional tools just for her mom and asked that no cuticles be cut.

Her hospital room. During her CAR-T stay, Shannon decorated Donna's room with fuzzy CAR-T cells and white blood cells hanging from the ceiling, signs and even a stuffed kidney. She did "anything that I could to make her feel comfortable and happy and put a smile on her face," she says.

Shannon also worked with her mom on the everyday habits that support healing:

Eating regularly. Donna had lost about 80 pounds and used to eat just one meal a day. Shannon encouraged three meals, or five small meals when her appetite was low. "You have to continue to heal first," she told her mom.

Drinking water. To help her kidneys recover, Donna aims for four to six bottles of water a day. Shannon tried not to be "a prison warden" about it. "Drink what you want, but you have to drink it," she told her. Donna's estimated glomerular filtration rate (eGFR), a blood test that measures how well the kidneys filter waste, has improved to about 50.

Moving every day. Donna didn't want her neighbors to see her walking outside, so she did laps around the kitchen island. Shannon also bought a seated, motorized stepper, and Donna sometimes logs 5,000 steps on it. Building stamina is still a work in progress.

Little by little, Donna is getting her independence back. She went from 10 daily medications to four and now fills her own pill organizer. She stopped using a wheelchair for appointments about three months before the interview. She is driving again and spending weekends at the family boat. And she was about to bring home a new puppy.

Shannon’s advice for caregivers

After a year and a half of round-the-clock care, Shannon knows how easily caregivers can lose themselves. "Caregiver burnout is a real, real problem and it happens without you even realizing it," she says. Here is what she wants other caregivers to know.

Take care of yourself, too. "I'm telling my mother to eat, but I'm not eating three meals a day," Shannon admits. Now she keeps protein bars in almost every room and drinks protein shakes alongside her mom. "You are no good to anybody else if you're not caring for yourself," she says.

Set a stopping time for research. Shannon and Kevin made a pact: no research after 7 p.m. "You have to put a cap on how much time and effort you're putting into that," she says.

Rest when your loved one rests. Shannon compares it to caring for a newborn. "Sometimes you need to take a nap when your loved one is taking a nap," she says. Try to set aside at least an hour a day to decompress.

Step away when you need to. When Shannon felt her patience running thin, she would leave Kevin with her mom and go for what she calls "a sanity ride" around the block.

Ask for help, and say what you need. Most visitors and callers ask about the patient, not the caregiver. "People don't really check in on the caregiver to see how they're doing," Shannon says. She encourages caregivers to ask a friend or family member to sit with their loved one for a few hours. "Don't be afraid to ask for help," she says.

Find someone to talk to. "Caregivers need to be able to vent, too," Shannon says. For her, that person has been Kevin, whom she calls her rock. "He's a caregiver, too," she says.

Lean on your faith. Shannon also turned to her faith in God to get through the hardest days. "He has been there with us the whole time," she says.

HoldHer Spark

At first, Shannon kept Donna's illness private, sharing nightly updates only with a family and friends group chat. Once Donna was in remission in October 2025, Shannon began sharing their story publicly on a Facebook page called HoldHer Spark.

The name says it all. "My mom's a sparkly person," Shannon says. "I needed to keep her smiling and hold her spark. I didn't want her to lose her spark."

On the page, Shannon posts daily updates, prayers and information she has gathered for families facing myeloma and CAR-T. "I just put as much information as I can out there because I didn't have that in the beginning," she says.

When Donna was preparing for CAR-T, Shannon also started a private Facebook group, Team Donna's CAR-T Journey, for people who are going through or have gone through CAR-T. Through it, Donna connected with Marian, who received CAR-T about 30 days after her. Shannon also found a close friend in Jose Humberto Delacruz, one of the first people to reach out when she shared her mom's diagnosis. He reminded her to stay positive and focus on getting through one day at a time.

Read Jose’s Myeloma Story

Shannon's creativity has grown into ways to support others, too:

• HoldHer Spark Fierce Bloom clip: Donna has a port, a small device placed under the skin, usually in the chest, that gives nurses easy access to a vein for treatment and blood draws. Her clothes and seat belt kept rubbing against the numbing cream she applied before treatment. Shannon designed a sparkly clip that holds clothing back so women with ports have easy access for numbing cream, tubing and nurses.

• Necklaces and bracelets: pieces Shannon has designed for women in the cancer community.

• Hold Tight men's line: a necklace with an anchor and a cancer ribbon to show support for men with cancer. Jose was the first person Shannon thought of when she designed it.

Shannon sells her pieces and shows them at craft fairs, but she often gives them away. 

Getting their lives back

Donna has now reached remission twice. "That's like celebratory territory," Shannon says. Step by step, Donna is reclaiming the life the disease tried to take. "She's getting her independence and her life back because this disease really tries to rob you of that," Shannon says.

Shannon and Kevin plan to move back to their own home when Donna is ready to live on her own again. Shannon has given up a great deal to care for her mom, and she has no regrets.

"I gave up my life to come be here with my mom. I wouldn't change that," she says. "She's my best friend. She's my mother, and I will always be there for her when she needs it."

If you are caring for someone with myeloma, you are not alone. Talk with your loved one's care team about their treatment and recovery, and don't be afraid to tell the people around you what you need. HealthTree offers resources, patient stories and community connections for patients and caregivers alike.