Jenny Cumbie has become an unwitting human encyclopedia of medicine.
Her daughters, Anna, 8, and Madeline, 5, have both battled leukemia. Anna was 2 when she was diagnosed; Madeline was 3.
“I can date any family photo based off of how much hair my kids do or do not have,” Cumbie said.
When Anna was diagnosed, “I went through two or three days of just complete shock,” she said. “And then it just kind of went to disbelief, denial. When Maddie was diagnosed, I think I skipped the denial and went straight to anger. How did this happen again? We all were just pissed.” Cumbie sat in the Spokane home that she shares with her husband, Brian, and her girls, and rattled off medical terms and easily recited dates seared in her memory.
March 2, 2007: Anna is diagnosed.
May 9, 2009: Anna completes treatment.
April 29, 2010: Madeline is diagnosed.
“We actually spent Anna’s first-year anniversary post-treatment in the hospital,” Cumbie said. “We didn’t even get a whole year off chemotherapy when Madeline got sick. I just remember thinking, Oh my God, how am I going to do this?”
Having two children with cancer is highly uncommon, said Dr. Judy Felgenhauer, who treated both girls.
“It’s very, very rare,” Felgenhauer said. “There is some suspicion that this is genetic. We think that environmental issues have less of an impact on children just because they haven’t had a chance to be exposed to much.”
If it is genetic, the girls, who have standard-risk acute lymphoblastic leukemia, could have a higher risk of relapsing or getting other types of cancer in the future, Felgenhauer said.
However, she said, “Their prognosis is excellent: probably more than a 90 percent chance of cure.”
The family has spent most of the past five years in and out of Providence Sacred Heart Medical Center, enduring a grueling regimen of spinal taps, bone marrow biopsies, sedation, infections and the sickness caused by a cocktail of chemo drugs.
“It wasn’t the life I wanted for my children or my family,” Cumbie said. “The first diagnosis, you’re naive to what you’re about to endure. The second time, you know what this is.”
Chemo treatment can have lasting effects on children, Felgenhauer said, including school and learning difficulties, increased weight and some decreased coordination. However, she said, the majority of children treated for leukemia have minimal to no side effects.
Girls with this diagnosis typically undergo about 2 1/2 years of chemo, while boys undergo about 3 1/2 years. The first four treatment phases, which last about six months, are the most intense, causing hair to fall out.
Several chemo drugs are given orally, intravenously and through the cerebral spinal fluid. Steroids also are part of the treatment. After that, the patient begins the longest phase: maintenance treatment. Madeline is doing that now.
“They’re like most children, in that they’re very resilient,” Felgenhauer said. “As a child, you sort of adjust to whatever’s around you. That becomes normal. They don’t have the expectations that we do.”
A second home
At a recent chemo appointment, Madeline underwent a checkup as a nurse wielded a massive binder containing her medical charts, a lengthy chronicle of the girl’s battle. It was just a couple days before Madeline’s birthday, and the hospital staff wrapped presents in pink and sang her “Happy Birthday.”
“I think that’s the first time I’ve sang ‘Happy Birthday’ without crying,” Jenny Cumbie said in the small exam room, dabbing at her eyes. “Each milestone just has such huge meaning, because you don’t … really know how much time they have. Birthdays, first day of school.”
Madeline, playing with her new presents, interrupted: “Mommy, don’t cry.”
Cumbie continued, “I’ll cry at her graduation and her wedding and all those milestones.”
As difficult as the cancer has been on Anna and Madeline, it may be more so for their mother.
“They’re amazing,” she said. “They handle it so much better than I do.”
The girls get “poke prizes,” such as small toys and stickers, each time they undergo a blood draw or receive an injection.
“For our family, yeah, it is our norm,” their mother said. “It’s going to be very strange to be out of treatment.”
The girls’ father, Brian Cumbie, has medical coverage through his employer. But the treatments are still costly, Jenny Cumbie said. “The cost of having a child in treatment doesn’t always come in the form of a bill from the hospital.”
The family’s battle has been hard on the hospital staff, too. By the time Anna finished treatment, the staff knew the family well.
“Maddie grew up here, literally,” Cumbie said. “Her first sentence was ‘Hi Judy.’ That’s their oncologist. She knew all the nurses and all the doctors. It was really, really hard on the staff when she was diagnosed. It was so devastating. The staff, they felt it right with us. We were all crying. All of us.”
So they’ve learned to lighten the mood by telling jokes, laughing and smiling in between tears.
“There’s a lot of pranks that go on around here,” Cumbie said. “We’ve had saline syringe fights. And then there’s the apple juice in the urinalysis cup. That’s a classic.”
The blond, blue-eyed girls are, for the most part, like others their age.
“They love to play soccer, they love to dress up, they love to play with their Barbies, they love the outdoors,” Cumbie said. “They’re very loving and affectionate children.”
But because chemotherapy cripples the immune system and leaves the girls susceptible to potentially deadly infections, they miss some of the customs of childhood, like making mud pies, camping, eating cookie dough and attending birthday parties.
The family is always ready to run out the door should one of the girls develop a fever or infection. When the Cumbies do make plans, they don’t tell the girls, just in case the cancer gets in the way. “That way it’s always a surprise,” their mom said.
“It’s almost like you always have your bags packed and ready,” she said. “Everything is tentative. There’s very little control.”
There’s another date Jenny Cumbie isn’t likely to forget.
July 2, 2012: Madeline’s last dose of chemotherapy, the day her entire family will finally be free from cancer’s control.
“We have a lot of plans for the summer,” she said. “A lot. We get to cut that line that’s been tying us to the hospital for the last five years. Everything. We are going to do everything. Whatever we want, no strings attached.”
Both girls are in remission. Anna goes in for checkups every three months – “she’s doing fantastic,” her mother said – and Madeline goes in every other week.
They could undergo genetic testing to see if they are prone to relapse. But, “It can’t be fixed, so I don’t really see the point of knowing,” Cumbie said. “For now, we’re just going to deal with what we have and hope for the best outcome. I choose hope.”
Still, the fear that cancer will someday return is always lurking in her mind.
“It changes your life forever,” she said. “There’s a new normal. You never go back. There’s always a chance it can come back 20 years later.
“That’s what keeps me up at night.”