“Why do you do this?”
When people pose this question to Farrell Howe in connection with the heart-wrenching circumstances she encounters working as a volunteer and board member with the area nonprofit Cancer Families United, she answers, “Because I made a little girl a promise.”
The young girl died at age 10 on an airport tarmac in Philadelphia aboard a private company jet that does “angel flights” for critically ill patients. She had won Howe’s heart when they met at Bronson Pediatric Oncology Hematology Clinic, in Kalamazoo, while Howe’s own son was going through treatment for leukemia.
“You wanted to do everything for her because she was just so sweet,” Howe says.
The child was in Philadelphia for an immunotherapy treatment study at the Children’s Hospital of Philadelphia. The therapy is taxing on the body, so the girl “fought and fought and fought” to become healthy enough to receive the treatment, Howe says. But upon arriving in Philadelphia she developed an infection that excluded her from the trial. She died on the plane that was to take her home to Kalamazoo. Shortly after, Howe visited the girl’s gravesite, which was sprinkled with one of the girl’s favorite things: glitter.
“I said, ‘Your death isn’t going to be in vain. I will do whatever I possibly can to fight so that this doesn’t keep happening to children like you,’” Howe recalls.
Confronting childhood cancer
Children dying of cancer is a sobering topic that Howe says the media often shies away from. But the subject demands attention: 43 new cases of childhood cancer are diagnosed every day in the United States, according to Curesearch, a foundation that supports research to end childhood cancer. For children, cancer is the No.1 cause of death by disease.
Howe and her husband, Colin Howe, were unaware of those statistics until December 2013, when their son, Garrett, then 2½, was diagnosed with b-cell acute lymphoblastic leukemia. Farrell had taken him to the pediatrician for an ear infection, when it was discovered that Garrett also had anemia. They were sent to Bronson Children’s Hospital, where Garrett endured several tests, including a double femoral artery poke.
“I had to restrain him for that and hold him down,” she says, “and that was one of the most traumatic things I’ve experienced during this process.”
While waiting for answers, Howe and Garrett fell asleep curled up together in a hospital bed. Her husband’s face was as white as a sheet, she says, when he roused her the next morning. His three words took Howe’s breath away: “Garrett has leukemia.”
“I couldn’t cry,” Howe explains. “I couldn’t scream. I just was struggling for air.”
One thing that offered a bit of comfort to the Howes: a Care Bag from Cancer Families United (CFU) given to them at the hospital. When Howe looked inside looking for pain relievers for their pounding headaches, she discovered much more: They weren’t alone.
“That family care bag (was) really a godsend,” Howe recalls.
The CFU bag not only contained other much-needed necessities, such as snacks, toiletries, note paper and a calendar, it showed that CFU was there to provide support and services to Southwest Michigan families affected by childhood cancer. That’s because CFU’s founder and president, Mary Kay Pederson, and her husband, Corey Pederson, who created the bags, had already traveled this road. Their daughter, Emma, was diagnosed with b-cell acute lymphoblastic leukemia in 2010, at age 3.
Emma had been having ongoing ear infections, which can be a symptom of childhood cancer, Pederson says they later found out. Emma’s visits to the pediatrician involved a recurring cycle of fever, antibiotics and rest. On one visit, a visiting doctor proposed Pederson let Emma get well and then come back for blood work — a test no other doctor had yet suggested. Pederson insisted on a blood draw that minute.
Even eight years later, tears trail down Pederson’s cheeks as she recalls the phone call that told them Emma needed to immediately see a specialist at Bronson Children’s Hospital. While Pederson was on the phone, her toddler, Abby, climbed onto a nearby table, dumped out a box of Cheez-Its, and proceeded to crunch the crackers beneath her feet.
“I continue to include that into my recollection of all this that happened to us because it’s significant — it’s the colliding of two worlds,” Mary Kay explains, brushing away tears. “That is my life: You have a toddler getting into mischief, but at the same time your other child is about to embark on a very hard journey. That moment still gets me choked up.”
The creation of CFU
Emma ended up staying at the hospital for two weeks. Corey had to return to work, so Mary Kay remained at the hospital with her terrified daughter, who didn’t want her mom to leave the room. Pederson quickly started recognizing things she needed, such as basic toiletries and snacks like popcorn and granola bars. She also identified other necessities: a notebook to jot down questions and a calendar to keep track of the regimented rules of the clinical trial to treat the child.
“They (doctors and nurses) come in and start talking right away about what the schedules are going to be,” Pederson explains, noting patients must receive medicine at precise times and families must keep track of numerous appointments and procedures, such as ongoing spinal taps.
During Emma’s treatment, which lasted two years and three months (she is now 11 and in remission), Pederson’s eyes were opened to other needs. She and her husband had family and friends to help watch their younger daughter, Abby, but others at the clinic, including a struggling mother of three, didn’t and couldn’t afford child care.
“I’m thinking, ‘This is horrible,’” she says.
During Emma’s treatment Pederson became acquainted with other families and evaluated their needs. She started a private Facebook group and organized an event to get together outside the hospital.
“That’s how CFU started,” she says.
CFU has since evolved to help families in a variety of ways: the Care Bag, family networking events to build relationships outside of the hospital, and assistance to offset the financial strain of cancer treatment.
The organization also provides a Warrior Wish, specifically designed for children whose cancer has relapsed, to provide the child and family with an opportunity to experience something special. A Warrior Wish for a family of four costs the organization about $2,500, Howe says, and is its greatest area of need.
“(We’ve) been trying to find a local corporation or donor or somebody that would be interested in helping these kids,” Howe says. “It might be part of the family’s last memories with their child.”
Worldwide, a child is diagnosed with cancer every two minutes, according to St. Baldrick’s Foundation, which funds research to find cures for childhood cancer.
“The general population — and I used to be one of them — thinks that childhood cancer is rare and that it’s mostly curable because they hear that 80 percent cure rate, not knowing that is only tied to leukemia and not the rest of the dozens of childhood cancers that are fatal,” says Howe.
Only four child-specific cancer treatments have been developed and approved in the last 20 years, so children with cancer are often treated with adult cancer drugs modified for kids, Pederson says. The toxicity of these drugs comes with “cruel” side effects that 60 percent of children who survive cancer suffer long term, she says.
“They end up having organ failure, they end up losing their teeth, they end up having disrupted bowels,” she explains. Another potential result is secondary cancers.
The STAR Act
Together, Howe and Pederson are on a crusade to tell everyone that not only is childhood cancer not rare, but research for a cure is woefully underfunded.
They have taken their battle to Washington D.C., traveling there for several years with the Alliance for Childhood Cancer to push Congress to pass the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act. Finally approved in May, the STAR Act will advance pediatric cancer research and child-focused cancer treatments, including development of childhood cancer drugs.
“The treatment is really key because we want pharmaceutical companies to view childhood cancer as a disease worthy enough to create a drug,” Pederson explains.
Closer to home, area residents remain unaware of CFU, say Pederson and Howe, but also of Bronson Children’s Hospital’s pediatric oncology clinic, which serves seven counties.
“If we didn’t have the option to seek treatment locally for Emma’s leukemia, we would have had to travel to Grand Rapids or Ann Arbor just to get her basic medical needs met for cancer treatment,” Pederson says. “The pediatric oncology clinic is part of a global group called Children’s Oncology Group, which allows for smaller hospitals and medical facilities to have the same standard protocol of care that a larger university hospital or medical center would follow.”
Howe credits Bronson’s oncology nurses with helping her family get through Garrett’s treatment, which lasted three years and two months. (Now 7, he has been cancer-free for one year.) She describes an instance when Garrett started having seizures and the oncologist ordered an MRI.
“I heard the words brain tumor and I hit the floor,” Howe remembers. “One of our nurses got on her hands and knees and grabbed my hands and said, ‘Look at me. Breathe. You can do this. It’s going to be OK.’ She was right there with me.”
The seizures turned out to be a result of one of Garrett’s medications.
“But still …,” Howe says, remembering that moment and how important it was to have support. “They go to funerals. They grieve with the families … and have to do it over and over. I’m thankful every day there are people that have the compassion and the steel will to do it — because it’s not easy.”
It is not easy what these mothers do day in and day out fighting the fight either.
“You can’t sit in a corner and cry. You have to be strong,” says Pederson. “You have to react and keep the ship moving.”
So in those moments when families of kids with cancer might feel their ship is sinking, CFU volunteers like Pederson and Howe will be there to help shore them up. The “U” in CFU stands for “united,” they say, and they won’t allow families to face this cancer battle alone.