You know how your heart aches for your child when he or she has the flu, and each labored breath the child draws stabs you right in the chest?
You know how after a few weeks, you feel weary from listening to the coughing all night? But then you get worried when the coughing stops. Your kid is crying from exhaustion. You are drained from having to do nebulizer treatments, doling out antibiotics vitamins, and cough medicine, on top of having to make a living.
Then there are phone calls that another fever is spiking. The ceaseless hours in backed-up doctor’s office waiting rooms. Your kid is resent missing another Field Day at school, and directs that frustration at you. The pharmacy couldn’t get your insurance to pay for the new script. Your other kids feel neglected and are acting out. Now you have to leave work early, again, to go home and clean up another round of puke. More laundry. After a few weeks, you’re spent.
What if these two weeks was forever?
Welcome to Cystic fibrosis. It’s not the flu, it’s a lifestyle. Cystic fibrosis (CF) is a progressive genetic digestive and lung disorder created by an excessive buildup of mucus in the lungs and organs. Thick sticky mucous builds up in up in the lungs; clogging airways and trapping bacteria. That leads to lung infections, lung damage and eventually respiratory failure. In the pancreas, the mucous prevents the release of digestive enzymes required to break down foods and absorb nutrients.
While there is no cure, medical breakthroughs continue to extend the lifespans for those with CF. Today, the median lifespan for a CF patient is around 40, whereas in the 1950s that child seldom made it through elementary school.
Eleven-year-old Dayna Blackmon of Kingston has been living with CF her entire life. Her parents, Jen and Dana Blackmon, are hosting their 10th annual fundraiser for the Cystic Fibrosis Foundation, Monday, Aug. 14 at Mariner’s Harbor. The event typically raises $10,000; however, last year’s event yielded $15,000. The couple, with some help from their community, raises about $20,000 a year on “Dayna’s Dream Team” between walks, Pampered Chef parties and the Mariner’s fundraiser.
Dayna is a bright, bold, energetic and unmistakably confident kid. She plays basketball, dances and sings in a chorus. Her mother, Jen, a social worker at BOCES, said that Dayna is “full of life” and never lets her CF stop her. She smiles through all the bad days. “I love drawing,” said Dayna. “I want to be an artist. I love learning about the world. I love learning about science. I love reading mystery books. I like watching anime. I like playing American Girl dolls with my little sister [Melody]. I also like playing video games.”
The CF lifestyle taxes heavily the daily schedule, the pocketbook and the heart. Her father, Dana Blackmon, an assistant district attorney, detailed the emotional price the family pays to CF, like changing her IV and doing her treatments while she’s sleeping. — “Let’s get it done.”
Treatments in while riding the car. — “Might as well make the use of the time while you’re sitting back there.”
I will do anything in my power to keep my baby girl alive another day,” said Blackmon. “Then I look in my rear-view mirror at Dayna as she sits in the back seat with her nebulizer in her mouth, tears in her eyes. ‘Why can’t I just be normal?’ I’m the only kid that has to do stupid treatments in the car.’”
“The times we watch helplessly as she coughs so violently that she coughs herself awake from sleep,” her father said. “Then can’t stop coughing for hours afterward, and is ultimately too exhausted in the morning to make it to school the next day. Trying and failing to keep her body from overheating after physical activity, like the time she was forced to pull out of her school track meet. Getting calls from school that she’s over-heated due to class-room temperature and can’t get her work done. Most recently, being hours away and listening to her cry while at sleep-away camp, that she’s having stomach pain, and believes she’s got a blockage.”
Dayna said stomachaches are her deal-breaker. “[I call my parents to go home from school] when my stomach really hurts, which is a common thing that happens to me,” she said. “I have been in the hospital a few times with stomach stuff, and so I get scared when I have stomach aches.”
The CF rollercoaster sends the whole family through extremes in their day-to-day lives. The steroids alter Dayna’s moods, said her mother, as do some of the other occasional prescriptions. Constantly telling her to “spit out the mucus,” after every time she coughs, when sometimes it was just a cough, “and she tells us, ‘Nothing came up,’” said her father. “Those occasional times we were out to dinner and forget to pack her enzymes, and wonder can she eat this, or will this cheeseburger force us to go to the hospital later if she doesn’t digest it properly? Or the time we took a two-week vacation to Florida, and ran out of enzymes after miscalculating the amount of enzymes we needed, and calling frantically to find a pharmacy that could get more. The nights we’ve just been running all day and she’s too tired to do her treatments … Can we go one night without doing them? What’s happening to her lungs when we do that? We question ourselves constantly. Are we doing enough? Are we doing too much?”
Dayna has a love/hate relationship with her treatments. “There is a lot of wheezing, coughing, and I am very, very tired,” she said. “I have to get it done and then I feel a lot better. I am thinking about how if I don’t do this, that I won’t feel as good as I can,” she said. “And then I do get this done, I will feel much better than I did before, once I get it done. There are other things I would like to be doing than sitting in the back seats doing treatments that I have to do.”
One aspect of CF that Dayna lives with more happily than the others is the diet. One of the many requirements on CF patients is to keep a high-fat, high-sodium diet. Jen said the family gets dirty looks while they are in public salting Dayna’s French fries, but Jen is vocal about it and corrects the perception right away. Dayna said her favorite fries are Wendy’s, as they are crispy and salty “and a medium looks like a large.”
“We’ve gotten used to the looks when we’re out to dinner as we add extra salt to Dayna’s food,” said Blackmon. “One of the blessings we have is Dayna has a great appetite … and expensive taste — steak, crab legs, steamers, sushi are among her favorites.”
Dayna was recently in Albany Medical Center (the hospital that Dayna referred to as her “go-to”) for a few days for a CF “tune-up,” where she got prophylactic antibiotic IV and breathing treatments and had her best progress report thus far.
“This is her life, those are her lungs,” her father said. “We are there every step of the way, but we will actually never know what its like to be her. How it feels to miss on activities because she’s in the hospital or at the nurse. How it feels to miss school and then feel lost during lesson plans. Fighting Mom and Dad about doing treatments, because friends are coming over and not wanting them to see it. We have to find a healthy balance. Let her live her life versus ‘we know, and will make her do what is best for her.’
“We can’t stop her from hating what she has to deal with,” her father continued. “We can only hope we help her understand and believe what we do it helping her. So that when that day all our friends with adult children with CF comes, the day we can no longer force her to do her treatments anymore, hopefully she will do them herself.”
The fundraiser is Monday, Aug. 14 from 5:30-9 p.m. at Mariner’s Harbor. There is food and a cash bar. Tickets are $20 presale, or $25 at the door. For more information, contact Dana at (845) 331-2725 or firstname.lastname@example.org or Jen Blackmon at email@example.com. A direct donation can be made to Jen and Dana’s Great Strides CF page, at http://on.cff.org/2vnr6qe.