By Jen Bakken
Evelyn Day is an 11-year-old girl who loves horses, dogs, cats, pigs, cows, and all farm animals. She attends sixth grade at Delano Middle School.
Just like many girls her age, she loves music, art, and being with her friends. She is happy, animated, and upbeat, but this young girl also lives with cystic fibrosis.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States.
According to the Cystic Fibrosis Foundation, this disease clogs the lungs, and leads to life-threatening lung infections. Cystic fibrosis also obstructs the pancreas, and stops natural enzymes from helping the body break down and absorb food.
Before the 1960s, few children with cystic fibrosis lived to attend elementary school. Today, with the advances in research and medical treatments, many people with the disease can expect to live into their 30s or beyond.
About 1,000 new cases of cystic fibrosis are diagnosed each year, and more than 70 percent of patients are diagnosed by the age of 2. Evelyn Day was within that 70 percent, being diagnosed with cystic fibrosis at 13 months old.
“It was a really long, difficult year for health, a lot of tummy aches and crying. She ended up in the hospital because she couldn’t breathe,” her mother, Kate Day, said.
Kate and her husband of 17 years, Ed, didn’t know they were carriers of the disease and there is no known cystic fibrosis in their family history.
However Kate did, ironically, have an experience where she met a man running a cystic fibrosis booth at a county fair.
While she was seven months pregnant, with her first child, she learned about cystic fibrosis and remembers not worrying too much, thinking,
“What are the chances?” she thought.
A few years later, Kate introduced her daughter to this same man, and he was, understandably, shook up when he learned she had cystic fibrosis.
Now, Kate and Ed have two daughters with cystic fibrosis Evelyn, who is 11 years old, and their youngest, Elsie, an active 5-year-old, who is currently doing fairly well.
The couple has two other children who do not have cystic fibrosis but are carriers of the disease; Joel, a fourth grade student, and Eden, a second grade student, who both attend Delano Elementary School.
All four children are very knowledgeable about cystic fibrosis and are quick to point out that it is not contagious. It is something you are born with.
“Joel and Eden each have one gene; two genes makes a cystic fibrosis person,” said Evelyn, as her siblings nodded their heads in agreement.
Kate explained, “If each parent has the cystic fibrosis gene, there is a one-in-four chance they will have a child with the disease, and there’s a two-in-four chance of having a child that is a carrier.”
Kate has been told her children are wise beyond their years, and Eden has even helped with her younger sister, Elsie’s treatments.
“Sometimes I have to tell her when to cough,” Eden said.
Though this has been difficult for them, amazingly, this second grader and her fourth grade brother have learned to be helpful, patient, and understanding.
While talking about understanding, Kate is quick to point out that the Delano Public Schools have been wonderful to work with.
“They have just blown me away.” Kate said, admitting she cannot say enough about the school’s nursing staff.
There is a lot to deal with having a student who has cystic fibrosis in a school and in Evelyn’s case, it means approximately one hour per day in the nurse’s office for medications, checking her blood sugar, or to rest.
Joy Bolea, a registered nurse at the middle school, says she is the one who is thankful for being able to work with Evelyn,
“She is amazing . . . she has such strength, a great attitude, and is very determined. I feel honored that I can help her attend school,” Bolea said.
Bolea is not alone in how she feels about Evelyn. Many students, teachers, and staff members at Delano Schools feel she is an inspiration. Kathy Hegna, a special education teacher, and Evelyn’s case manager, said Evelyn never complains, even when she is dealing with incredible pain.
“She could be a hero to many kids. She comes to class when she can and is an advocate for herself,” Hegna said.
Attending school is something Evelyn hasn’t been able to do for quite some time, though, as she had a liver transplant Sept. 7. Learning almost overnight that their daughter had advanced liver disease, at 9 years old, they began what Kate referred to as a roller coaster ride.
“Wee . . . it was up and down, like this,” Evelyn added, moving her hands up and down as if riding a roller coaster.
First, they were told that people can live a long time with liver disease, then during surgery to remove her appendix they were told she would need a liver transplant.
“That’s when the biggest blow came; that was only eight months into knowing she had liver issues,” Kate remembered.
This is when their roller coaster ride began, from possibly having a few months to needing the transplant right away.
It was heartbreaking for Kate to watch her daughter suffer during this time. There was nothing they could do for her, she was in a lot of pain, on 15 different medications, falling asleep in class, losing muscle mass, and her abdomen was incredibly swollen.
Her legs struggled to carry around her enlarged and heavy liver a difficult task, physically and emotionally.
“There was one boy who called me fat because he didn’t know,” Evelyn remembered, but said throughout it all, the students and staff at the school have been very helpful.
After waiting on the organ donor list, the Day family finally received the call around 11 p.m. one night that a liver had been found.
It was heartbreaking for Evelyn because at the time, she was in School House Rock, a middle school play, and only had the chance to perform one night.
Because her mom attended her brother’s football game, planning to attend her play the next night, Evelyn was never able to perform for her mother. But this was something that couldn’t wait even one day.
They rushed to the University of Minnesota during a storm, and waited for the surgeons to arrive because they were stuck at the airport due to the bad weather. Finally, with more than six hours of surgery, Evelyn had her new liver.
Incredibly, three days after surgery, they began giving Evelyn cystic fibrosis vest treatments. These vest treatments, or bronchial drainage treatments (bds), shake the mucous out of the lungs, helping the patient to cough it out.
Evelyn spent about 17 days in the hospital before returning home, only to be readmitted shortly thereafter for about a week.
It has been an uphill battle for the Day family, involving many tests, temperatures, medications, needles, and vest treatments. This young girl is now home, and well enough to talk about her experiences.
Though she is home, the struggle is not over because cystic fibrosis is a lifelong disease. Caring for a child who has cystic fibrosis is no easy task. Yet, Kate does not complain.
“Moms are the advocate for their children. I’m her manager, that’s how I look at it,” Kate said.
Being Evelyn’s manager involves vest treatments four times per day, 25 prescription medications, checking her blood sugar levels multiple times, including at 3 a.m. each morning, giving her insulin when needed, and many doctor appointments.
A diet high in fat and sodium is necessary, and Evelyn has to take enzymes, in pill form, to help her absorb and digest the food she eats.
“I have to go in for tune-ups too,” Evelyn adds. A “tune-up” involves treatments in the hospital, including physical therapy and IV antibiotics.
Having two daughters with cystic fibrosis means Kate is taking care of Evelyn’s medical needs while at the same time, caring for Elsie who receives medications, enzymes, and vest treatments like her older sister. It also means keeping them from sharing germs.
“The doctors told me I need to try really hard to keep them apart at times. They don’t vest in the same room, they don’t share utensils or anything,” Kate said.
Since patients with cystic fibrosis have really thick mucous in their chest, the common cold can actually mutate into their own bacteria, which grows and deteriorates the lungs. This makes people with the disease more susceptible to each other’s germs.
It’s tough to imagine a day in this mother’s shoes, but easy to see the love she feels for her children and the determination she has to maintain their health.
“I want to be able to look back and say I did the best I could . . . my belief is, the glass is half full, not half empty,” she said, admitting she couldn’t do everything alone, that her husband has always been there to help, and they work as a team.
Kate considers herself lucky to be self-employed and able to work part time, at home, as a professional advisor for small businesses.
She is trying not to do too much right now, admitting, “I can’t keep up because I’m up at night doing the little bit of work I can and, of course, we check her blood sugars at 3 a.m.,” Kate said.
Ed has been employed at General Mills as a maintenance mechanic for 14 years, where they are very understanding when he needs to take time off due to his daughter’s health.
They have insurance through Ed’s employer; however, Evelyn will reach her million-dollar cap at the end of this year, and will be dismissed from the plan. Fortunately, they pay for a back-up insurance through medical assistance.
“This is why I am so grateful that Minnesota has an option for health insurance, in situations like these, and though I have to find out the details, I’m pretty sure Evelyn will have coverage,” Kate said.
Spending time at the family’s modest home in Montrose finds a happy family who enjoys laughing together.
“My kids are rowdy, they have fun, we have a ball.” Kate said, adding that dinner time is a blast.
With all the things the family has dealt with and continue to deal with, the family is an inspiration.
Kate is humble, however, and only hopes this article promotes awareness about cystic fibrosis.
To learn more about cystic fibrosis, or make a donation to help find a cure, contact the Cystic Fibrosis Foundation at (800) FIGHT-CF (344-4823), or visit online at www.cff.org.
Kate keeps an online journal and provides regular updates on how Evelyn is doing. To visit or sign her guest book, check out www.caringbridge.org/visit/evelynday.