Terry Tacka (left) and Nancy Lund help coordinate the Casey Cares Birthday Blast program, which gives toys, stuffed animals, tickets and gift cards to critically ill children on their birthday. Baltimore-based Casey Cares works to brighten the days of young patients throughout the mid-Atlantic region. Photo by Christopher Myers

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When a child is critically ill, the entire family is affected, as Debi Katzenberger knows all too well. Her granddaughter, Kamryn, was diagnosed with leukemia in 2004 and passed away three years later when she was just 8 years old.

As Kamryn endured treatments and innumerable hospital stays, her days were brightened by tickets to shows, birthday presents and other gifts from the Casey Cares Foundation — a Baltimore nonprofit that provides uplifting activities and support to children affected by cancer and their families.

“The organization made such a difference for our whole family during such a difficult time. They would say, ‘What do you need? What can we do?’” said Katzenberger, who lives in Glen Burnie.

After her granddaughter died, Katzenberger felt adrift after the all-consuming years of caring for Kamryn, so she decided to volunteer for Casey Cares. She started out helping with data entry.

But then Katzenberger thought about how a high point for her granddaughter was getting a new pair of pajamas so she didn’t have to wear a flimsy hospital gown.

So she developed and spearheaded a new project for the organization to provide pajamas to young hospital patients in Maryland, Washington, D.C., Virginia and Pennsylvania. Called Kami’s Jammies, the program collected and distributed more than 6,000 pairs of pajamas last year. Each pair includes a tag about the program with a photo of Kamryn.

“When you’re 8 years old and pass away, you don’t really have time to build a legacy or to do something that helps people remember you were here. This [project] is something that definitely has done that” for Kamryn, Katzenberger said.

“When you lose a child, a parent’s greatest fear is that their child will be forgotten, and this assures she will not. So it helps them and it helps me, and it helps those kids in the hospital.”

Founding the foundation

Started in 2002 by Casey Baynes, the Casey Cares Foundation provides ongoing programs for critically ill children and their families.

While learning was always a challenge for Baynes due to her dyslexia, she nonetheless received her A.A. degree before graduating high school, graduated from Salisbury State in 1996 with a B.A. degree in Liberal Arts, and continued on to become the youngest master’s degree recipient at Towson State University in 1998 at age 20.

After graduating, Baynes worked in the nonprofit sector for several years, but then went on to help run her family’s 125-year-old trucking and warehousing business.

In 2000, after missing the sense of fulfillment she got from charity work, Baynes created the foundation. Under her leadership, it grew from serving a few families in Baltimore to now helping approximately 700 families in six states.

Most of the children are being treated for leukemia, brain tumors, cystic fibrosis, blood disorders, lymphoma, sarcoma and other childhood cancers.

The foundation arranges for a variety of outings — from a day at the zoo or a night at a concert, to a variety of art, entertainment and cultural activities. Since, due to weakened immune systems, many children can’t attend events in the community when they first return from the hospital, the organization sends the family pizza and a movie they can enjoy together in the comfort of their own home.

In addition, families may be provided sky box seats at baseball games, concert tickets, tickets to plays, and passes to museums and local attractions. Always included are special touches like parking passes, vouchers for meals, and souvenirs that add to the outing, all meant to avoid additional costs that the family might not be able to afford.

Special birthday gifts, themed pajama parties for children who are hospitalized, group parties, gift cards for families and more are also part of the services Casey provides to families. Activities and events are provided frequently during the period of a child’s illness.

Casey Cares serves children and their families throughout the Mid-Atlantic region in hospitals such as Johns Hopkins, Children’s National, Georgetown University, University of Maryland Hospital for Children, Children’s Hospital at Sinai, Medical College of Virginia and Hershey Medical Center.

One such child is Kevin Buck. Seven years ago he went from being a healthy, active 5-year-old to developing a bump on his head that led to being diagnosed with a very rare blood disorder.

“Within 48 hours he was in surgery, and within days of that he was receiving chemotherapy,” said his father David Buck.

That first year, Buck recalled, he and his wife were “frantic,” caring for Kevin who was sick with anxiety before his chemo treatments and sick afterwards from them. They helped him cope with the teasing from classmates who didn’t understand that his treatments caused him to gain weight, and also made sure their daughter wasn’t being ignored.

While Kevin was being treated at Sinai Hospital, Casey Cares offered opportunities to forget about Kevin’s illness for a while, enabling him and family members to attend Orioles games, movies, special events at the Baltimore Arena and more.

“You don’t know such an organization exists until you need it,” Buck said.

Bolstered by volunteers

While the organization employs professional staff members, the volunteers — many of whom have been involved from the Foundation’s inception — are the heart and soul of Casey Cares, said Baynes.

“There is no way we could continue to operate all of our programs and engage as many children and their families without our volunteers,” she said. “They don’t just stop in for an hour and leave. This is truly a regular, active group, and we are so lucky to have them.”

Katzenberger works full time for insurance company CareFirst, but finds eight to 10 hours a week in her busy schedule to work on Kami’s Jammies.

Patricia Scheitlin is another volunteer. The 64-year-old Linthicum resident has been involved with Casey Cares for 13 years. For Scheitlin, Casey Cares is a family endeavor. Her husband also volunteers, and her daughter Kim Meyers runs the Family Festivities Program.

Scheitlin volunteers every Monday and Wednesday for four to five hours a day, “and whenever Kim calls,” she laughed.

Both Scheitlin and her husband have had their own personal experiences with cancer, which makes their volunteering even more meaningful. “We understand what it means to be where these families are,” she said.

Nancy Lund and Terry Tacka are also long-time volunteers. Lund, who lives in Ellicott City, started out seven years ago after retiring from a career as a paralegal, and Tacka, four years ago after retiring as a human resources manager.

The two work on the Birthday Blast Program, making sure every child receives a birthday gift — from toys for the younger ones to gift cards for older kids — as well as flowers, cards, cookies, etc.

“It’s nice for them to have a special surprise on their birthday,” said Lund, with Tacka adding that people sometimes overlook how important a birthday is to a sick child. “It’s a milestone,” she said. “It means they’ve made it another year.”

Besides helping the children and their families, Tacka and Lund also appreciate the genial atmosphere and camaraderie the volunteers and staff enjoy. “It’s a real team effort here,” said Tacka.

For Kevin Buck and his family, the volunteers and what they provided made a tremendous difference. “Because of Casey Cares, you feel less alone when you’re going through something like this,” said Kevin’s father. “We couldn’t be more grateful and appreciative.”

To find out more about the Casey Cares Foundation or to volunteer, call (443) 568-0064 or visit www.caseycares.org.

Additional reporting by Barbara Ruben.