Here is the article I mentioned from the previous post.-S
Friday March 16, 2007
Family Life Lived with a Challenge
By Annemarie Donkin
Signal Staff Writer
Cystic fibrosis. The name alone is too difficult for many of its youngest patients to pronounce, many of whom lisp it as "64 Roses." Primarily hitting children of Northern European ancestry, the condition is popularly known as the "pale, blonde, blue-eyed," disease. According to the Cystic Fibrosis Foundation, cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States.
A defective gene causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb nutrients.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Symptoms, some of which are present at birth or develop shortly thereafter are very salty-tasting skin, persistent coughing, sometimes with phlegm, frequent lung infections, wheezing or shortness of breath, poor growth and weight gain.
But the Cystic Fibrosis Foundation reports that due to advances in research and medical treatments, many people with the disease now expect to live into their 30s, 40s and beyond. In 2005, the median age of survival was nearly 37 years.
In the Santa Clarita Valley, Julie and Scott Malchus and Mike and Sue McCarthy are two such families who are stepping up to the challenges of having a child with cystic fibrosis.
Both are active families, with bright and active children, and all participate in school and community events.
Both mothers opted to stay home to attend to twice-daily nebulizer and therapy vest treatments (a device used to help keep airways clear), regular doctor visits and frequent hospitalizations.
The families have also created a strong network of support to help, and, most notably, both families have a great outlook for the future.
The Malchus Family
Diagnosed with cystic fibrosis when he was 1 month old, Jacob Malchus has been taking nebulizer treatments since he was 2 months and therapy vest treatments since he was 2. A bright, active child who loves his trucks and action figures, he is just like any other 5-year-old.
"Jacob likes to ride his scooter, bike, and playing with his superhero action figures," said his mother, Julie Malchus, "He calls it 'playing guys.' He has full-on scenarios that go on and on."
Cystic fibrosis, like most chronic diseases, often involves the entire family, not just the child afflicted with the disease.
Sophie Malchus is a second-grader at Tesoro and helps with Jacob's care.
"She takes on more responsibility than an 8-year-old should," Scott Malchus said. "She is a very sweet and caring girl and goes out of her way and helps with his respiratory therapy. She is a happy little girl who plays handball and dolls and likes to ride her scooter. She monitors him from the other room and tells us if something is wrong."
Scott, 36, works as a production coordinator in Burbank at the Cartoon Network on "Squirrel Boy," one of his children's favorite shows.
"They take such pride that daddy works on it and love finding his name in the credits," Julie said.-
Julie studied child development at California State University, Northridge.
"I worked in a resource and referrals service for child and elder care in Valencia, but now I work part-time at Dream Dinners," she said. "The plan was for me to continue working, but I knew it was not going to work out for the first five years, but I love being at home. It was something I always wanted to do, and this kind of pushed me in that direction. I think it is a blessing being able to do this, a blessing to do this for my kids."
She said Jacob must put on his therapy vest twice a day for about 30 minutes each session.
"We have an older one like a big boom box, but bigger," she said. "It vibrates really fast and sometimes he complains it makes him itch. His cousins and sister tried it on; it is funny for a while but quickly loses its charm."
Then, Jacob uses a nebulizer - mixing two liquid medications into a vapor, Scott said.
"His breathing treatments include albuterol, pulmicort, pulmozime, for a total of 11 different medications. He takes medicine a lot. Every time he eats, he takes Pancreacarb and needs a high fat, high calorie diet to keep weight on," he said.
"If he doesn't take the treatment daily, his breathing will suffer," Julie added. "There has been research about different medications. Now there are new medications to alleviate a lot of the symptoms cystic fibrosis has. It is progressive, he will not necessarily get better, but they bring it more under control."
This year, Jacob entered preschool at Tesoro, into the "Fun for 4" programs.
"When Jacob was a baby, it was so overwhelming that I was scared to take him out of the house, but he is doing really well, because he takes his medications at snack time," Julie said. "One of the proudest moments for Jacob was right after he started classes in September and the other children asked Jacob why he had to go to the nurse's office every day. He got up in front of the class and, with the help of the teacher, explained that he had to get treatments. Jacob calmly told the class, 'If I don't take it, I will have a tummy ache,'"
In June, the Malchus family will participate in the "Great Strides for a Cure," walk in Valencia to be held June 2. Scott ran the full marathons in 2004 and 2005 and a partial in 2006. With help from family and friends around the county, he has raised more then $33,000 for cystic fibrosis research.
"He already thinks the big walk is his walk," Julie said. "This will be our sixth year. We will have about 25 in our team of family, friends, neighbors. We actually have different teams, people who represent Team Jacob all over the country."
But Scott and Julie realize it can't be all Jacob, all the time.
"We try to include Sophie," Julie said. "Of course we felt guilty, because we are doing treatments with him when she wants to hear a story. For us, we try to do things separate with both kids. Jacob likes to go to the comic book store. Then I will do something special with Sophie. She likes to get her nails done, have Chinese food - her favorite - or go to a tea party."
But generally, they are just like any other family who gets into the routine of their children.
"I remember when he was born, I had this overwhelming feeling we would never feel normal again, but normal always changes, and just like any child, we must incorporate it into our life, just have to do it," Julie said.
The McCarthy Family
A sweet, quiet, yet ferociously active little girl, 11-year-old Katie McCarthy, a sixth-grader at Mountain View Elementary, doesn't know the meaning of "can't."
Katie is active in school and participates in just about any activity she sets her mind to. Now she is talking about becoming a doctor.
In fact, after she was released March 3 from Children's Hospital in Los Angeles she was back in her beloved dance classes at the Rage in Northridge.
That night, she had extra practice to prepare for a competition, where she takes modern, hip-hop and jazz dance classes with her friends and cousin.
Her mother, Sue McCarthy, said, at 4 feet 2 inches and 58 pounds, Katie is still small but mighty, never stopping for long.
"She has been dancing and tumbling since she was 4. She used to be at the Dance Experience, but she wanted to try something new this year. Last year her team won the National Championships," Sue said.
One concession Katie makes to her condition is the dedicated IV line she wears in her arm for her daily dose of antibiotics administered for three weeks at school during lunch.
"That is so she can stay out of the hospital and try to return to her normal life as a regular 'tween," said Sue.
"I am excited to be back in school," Katie said. "I like math and want to be a dancer or either a doctor or teacher."
Her father, Mike McCarthy, said Katie was in the hospital because she was getting weak.
"Her lung function was not where it should be," he said. "She was having difficulty catching her breath."
A trade show manager for JBL Professional, Mike, 36, will once again be off to Orlando, Vegas and Germany in the next two weeks.
He said he has been with his company for 16 years and has terrific health benefits, but still it costs them more than $200 a month for medicine and $250 a month for co-pays.
"Katie takes about 15 to 20 different medications a day; stuff for her digestive and pulmonary systems, nebulizer treatments and vest treatments twice a day," Mike said. "It is our day-to-day life."
When Katie does spend a week or more in the hospital, Sue stays with her the entire time. Their 7-year-old son, Michael, also attends Mountain View Elementary and loves to play baseball.
"Michael is still too young to understand all of Katie's disease and often gets stressed when she is not home. It affects him a lot (when Katie is in the hospital.) Everyday he cries and asks 'When is my sissy coming home?'" Sue said.
A former director with the YMCA, Sue tried to work but with two young children and Katie's treatments, she found it easier to do medical transcription from home, where she can keep a more flexible schedule.
"Usually I work when they are in school until I pick them up at 2 p.m., then the fun day begins with driving kids all over the place to baseball, piano, bowling and dance," she said.
Katie was born in Simi Valley and diagnosed with cystic fibrosis at age 2 when she failed to grow and thrive.
"It was really difficult in the beginning. I didn't know what it was, and I didn't know anybody with it," Sue said. "After we moved to the Santa Clarita Valley, we became active with the Cystic Fibrosis Foundation."
Like the Malchus family, Sue said the entire family is planning to participate in the "Great Strides for A Cure Walk."
They are excited to participate again this year and plan to have family and friends raise money for support around the country.
In order to create a support network close to home, the McCarthys moved to Saugus seven years ago and bought a large house so Sue's parents, George and Judy Foertsch, could live with them and help take care of Michael when Mike is on the road and Sue is at Children's Hospital with Katie.
"We have a pretty big support team," Mike said. "Sue has two sisters and a brother living within a mile of us."
He also has a sister in Simi Valley. As a result, the McCarthy house is the place for Thanksgiving and Christmas. During the summer, they fly to Chicago and drive to Wisconsin to visit family.
"It gets a little challenging when I bring her (therapy) vest on the airplane," Mike said. "At 49 pounds, it is one of the older models and cost $16,000. Katie uses it twice a day, and we won't check it because we don't want to lose or damage it on the airplane."
Mike said last July they were flying one of the smaller United Airlines jets from Los Angeles to Chicago and had already gone through luggage check and security.
"I carried in on the plane and was told it was too large for the overhead compartment or under the seat. They wanted me to go out and check it with luggage. But the pilot happened to overhear me, took the machine and put it in the cockpit for us," Mike said.
Overall, the McCarthys feel they are very lucky to have the wonderful family they have.
"We take it one day at a time," Sue said. "From the day she was diagnosed, the average life expectancy is now up to more than 30 years old. For us, it is just normal, everyday life."
The Great Strides for A Cure Walk will be held 8:30 a.m. Saturday, June 2 at Westfield Valencia Town Center. For more information visit www.cff.org/great_strides.