How Wonders & Worries began helping Austin kids with parent’s illness

Two Austin child life specialists realized children with sick parents needed help, too

Meredith Cooper still remembers being called to the ninth floor of Brackenridge Hospital from the basement of the children’s hospital next door, where she worked as a child life specialist from 1991 to 1995.

A young mother in the final stages of cancer needed answers. She needed to know what to say to her child about her disease and what would happen after she was gone. Her child needed to hear those answers and be able to talk to someone about the illness.

On the spot, Cooper had to come up with some of those answers.

“It was devastating to me,” Cooper says. She, a mother to three children herself, saw this mother’s need, but there were no resources for her. Child life specialists typically work with children who are sick, not children who are going through a parent’s illness.

Almost a decade later, in 2001, Cooper and fellow child life specialist Melissa Hicks started Wonders & Worries to fulfill this unmet need.

“We realized that what’s out there for all these children is nothing,” Cooper says. “There was hospice if the parent died, but nothing for diagnosis until bereavement.”

For the sick parents, life becomes about how they are going to get through treatment. They don’t know how to explain what is happening to their children. For their children, it can become, “It’s my fault,” or, “Did I cause Mom to be sick? Will she die?” Cooper explains.

“Children want to protect their parents, too,” Hicks says. Often, kids are afraid to talk to their parents about what they are feeling for fear that they will make their parents cry.

Wonders & Worries, which now serves more than 250 families a year, started with just Hicks and Cooper leading one support group of about a half-dozen kids. Wonders & Worries got a grant from what became the Livestrong Foundation to do it.

Over the course of six sessions, children learned about their parents’ illnesses and how to cope with their feelings about the changes in their family. They began to feel less alone. “Kids can see that they are not the only ones,” Hicks says. “We can tell them all day long what other kids have said, but the second they hear it from someone else, it’s true.”

Now Wonders & Worries has three locations and offers support at schools through 10 school districts the organization serves. Wonders & Worries provides classes to parents as well as individualized support for children — all of it at no cost to the parents.

Most of the parents have cancer, but some have other life-threatening diseases such as Lou Gehrig’s disease and multiple sclerosis.

Wonders & Worries has grown from just Hicks and Cooper to 16 employees, mostly child life specialists. A strategic plan has Wonders & Worries looking to how its services could be offered or replicated for families outside the Austin area.

When Hicks met Cooper

Meredith Cooper, 61, grew up in Alameda, California, but went to Arizona State University in 1972 to study child development and family life. There, she met her future husband, Duane Cooper, who was a senior and moving to Austin after graduation. She followed him and finished her undergraduate degree at the University of Texas and later a graduate degree to become a child life specialist.

She was the first non-nursing student to do a research project at Brackenridge Hospital, where she worked on the pediatric floor. Child life specialists in a hospital environment had very different jobs in the late 1970s and early 1980s, and most of the kids who had cancer went to MD Anderson in Houston.

After getting her master’s degree, Cooper became a mom and stayed at home with her three children. She got involved in the Junior League, which helped start the Ronald McDonald House in Austin in 1985. One of the league’s projects was to start a child life program.

In 1991, when Cooper’s children were in kindergarten, second and fourth grades, Cooper went back to work at Brackenridge as its first pediatric oncology child life specialist. By this time, children with cancer were being treated in Austin and the pediatric oncology wing was where Cooper did most of her work.

That’s when she had the memorable meeting with that mom with cancer.

Cooper left Brackenridge in 1995 to go to St. Edward’s University to become a licensed professional counselor and started a private practice in 1999.

Melissa Hicks, 49, had experiences similar to Cooper’s. In her 20s and 30s, she was working in hospitals and getting more education.

Hicks grew up in Pennsylvania and went to college at the University of Delaware for a degree in individual and family studies. Her career as a child life specialist took her first to Johns Hopkins Hospital in Baltimore and then Children’s Healthcare of Atlanta. While in Georgia, she got a master’s in community counseling from Georgia State University.

In 2000, her husband got a job at Dell and the couple landed in Austin. This time, Hicks did not want to look for a child life specialist job in a hospital setting. She found Cooper through the Child Life Council’s directory. They connected and agreed to share an office, with each of them counseling children who were sick and sometimes children whose parents were sick.

“We started talking around this issue of children of adult patients,” Hicks says. They kept telling each other, “I still think there is a void in that arena.”

Starting Wonders & Worries

Cooper and Hicks knew they wanted to start an organization that offered both group and individual counseling for children who had a parent with cancer, but they faced the same dilemma many beginning nonprofits faced: They needed money to start the organization and provide services to clients, but they needed to be able to show there was a demand with actual clients to get that funding. “It’s a weird Catch 22,” Hicks says.

They approached what was then the Lance Armstrong Foundation, which gave them a grant that was enough money for one, maybe two groups and some individualized support if they stretched it.

Kathryn Parker and her brother James were in that first group. Parker was 12 and James 9 when their dad Gene was diagnosed with throat cancer. “I remember thinking that my dad was going to be fine,” Parker says. After all, throat cancer at the time had an 85 percent cure rate, she says.

She could not predict that her dad would have a recurrence, and, while treatment was eventually successful, it was not as easy as they initially thought.

Parker remembers being in middle school, a particularly difficult time in life. None of her friends knew what to say to her. “You feel so different and so isolated from everyone around you. It was therapy just to be sitting in the same room with someone else going through it. I wasn’t alone in this. I did have a support system.”

Wonders & Worries also gave Parker’s parents the language they needed to talk to her and James. “They were so overwhelmed in doing treatments and trying to figure out how to work and get us to school and all that stuff. We did talk about it, but the most communication was through the program.”

The program had a big impact on her brother, Parker says. James was really quiet and didn’t talk about what was going on, yet Wonders & Worries found a way for him to communicate his feelings. Group participants made a flower garden, and each paper flower had different emotions they could put in the pot they decorated to represent how they were feeling. James put in every emotion, which let the family know just how overwhelmed he was.

Once a family becomes a Wonders & Worries family, they become one for life, Hicks says. When Parker needed additional help when her father had a relapse, Hicks came to her house to counsel her individually. If her father had died, Wonders & Worries also would have offered bereavement counseling rather than sending her to a different organization. “It would be one more loss for the child,” Hicks says. “They are connected to us.”

Today, Parker is 27 and an accountant. She regularly volunteers with Wonders & Worries. “As I grew up, I saw people my age who had similar tragedies and they didn’t have help,” she says. “I am better off in my life because of Wonders & Worries.”

Coming of age

Wonders & Worries quickly figured out it had to do two things: First, it had to secure funding; second, it had to get the word out to find participants.

Initially, most of the referrals came through doctors’ offices, but that is often a challenge. Doctors have very little time to download all the information they need a new patient to have. Often, they forget to ask a patient if they have children or don’t know to point them toward family counseling resources.

Wonders & Worries soon found that schools could be a valuable partner in finding families, though Wonders & Worries continues to work with doctors’ offices and other organizations that might be helping the parent as well.

It also quickly created a board and came up with creative ways to raise money. Mike Reynolds, who was old friends with Duane Cooper, found out about what Meredith Cooper was doing about a year after Wonders & Worries began. He became involved and joined the board as well as brought money from the foundation his family started after his mom died of cancer.

Wonders & Worries “struck a nerve,” Reynolds says. “I know what (having a parent diagnosed with cancer) did to us in our 30s; I can’t know what it does to you at 6 and 12. I listen to stories and a get a little bit of terror, and the helplessness returns.”

Reynolds created the No Worries Classic, a sporting clay shoot out, to help raise money. Wonders & Worries also holds a gala. Last year, it created a Millennium Society that members can join after they pledge a gift of $1,000 or more a year for three years.

Cooper says Wonders & Worries is also looking at how to go back to the families it has served to ask for their support in continuing to make the services free to families.

One of the biggest changes in the way Wonders & Worries works came in 2003, when Hicks had an opportunity to return to Atlanta to work on a program that would provide more year-round support for kids with cancer through an organization she had worked with there.

Wonders & Worries needed to restructure so that it was not based on Hicks and Cooper doing everything. Cooper hired Kim Fryar, a fellow child life specialist who had had similar experiences working in Dallas hospitals. Fryar says she also was sometimes called to adult areas of the hospital to work with parents with an illness. “It was not budgeted, but you can’t really say no. There was a need.”

As Hicks was leaving, Wonders & Worries also hired a bilingual child life specialist and has continued to grow that offering.

Now, while Hicks, who has since moved to Raleigh, North Carolina, serves as more of an adviser, Cooper runs the day-to-day business as executive director and builds the vision.

Keeping Wonders & Worries evolving

Reynolds says one of the things that Wonders & Worries is particularly good at is having a diverse board that is not stagnant. Board members are encouraged to find their replacements — to help cultivate fresh ideas and new support.

Reynolds says Cooper always is monitoring the progress at Wonders & Worries. “She constantly questions how Wonders & Worries works and what it does,” he says.

Early on, Cooper asked Greenlights, now Mission Capital, to evaluate Wonders & Worries to give suggestions on what it could be doing better. “That’s why it stays so healthy,” Reynolds says.

Cooper’s quick to remind board members that what they are doing is not depressing; it’s enabling, Reynolds says. She always starts board meetings with an ice breaker to get members to think outside the box and to relate to one another on a human level. And she’s quick to say thank you in person and by letter to everyone who helps in some small way.

“The neat part about Meredith is that she is such a human being in everything she does,” Reynolds says. “And she’s so professional while she does it.”

Cooper’s vision for Wonders & Worries is that it spread its reach outside of Austin. It has had some starts and stops in that pursuit. Hicks helped oversee two pilot sites in North Carolina, and a program in Ottawa, Ontario, which contracted with Wonders & Worries to create the program there. It became clear that trying to fit Wonders & Worries into existing programs didn’t work.

One of the first steps in expanding is researching the impact Wonders & Worries has made. A University of Texas survey of 156 people who attended six-week support groups at Wonders & Worries between 2009 to 2014 found that 87 percent reported improved communication between parent and child, 84 percent reported a child’s reduced anxiety, 90 percent said their kids felt more secure at home and 73 percent reported improved school performance. The survey, which was conducted by former Wonders & Worries program director Farya Phillips and researcher Elizabeth Prezio, will be published in Psycho-Oncology this year.

“We were looking at what is the secret ingredient to having a positive outcome,” Phillips says.

Wonders & Worries will take this research to help others realize that every child needs this kind of support to be able to adjust to a parent’s illness.

“We thought if we built it, they will come,” Cooper says. “We had to let the community know that there was a place for the family … for parents to know they need to get this kind of support for their children.”

Hicks says she remains proud of how much it has grown. “I’m so proud of the concept and how it all relates to the integrity of who we are. I’m so proud and thrilled of what she has done since I moved. I could be the advisory person, but she really took it. I love that. It warms my heart all the time.”

Reader Comments ...

Next Up in Lifestyle

Too broke for a trainer? Try these free classes by Dancers Shape
Too broke for a trainer? Try these free classes by Dancers Shape

Dancers Shape will host a free four-week fitness series. Photo courtesy Dancers Shape   I say it all the time: You don’t have to pay a lot of money to get in shape. Every Monday for the next four weeks, Dancers Shape will offer free outdoor workouts at Bee Cave Central Park, 13742 Bee Cave Parkway in Bee Cave. The free four-week fitness...
Beautiful spring weekend for enjoying these family events in Austin, April 27-29
Beautiful spring weekend for enjoying these family events in Austin, April 27-29

If ever there was a beautiful weekend to head outdoors with the kids this would be one. Try your hand at the City nature Challenge at local parks, or try out a new playground with our guide of the best in Austin. Find more events for the family with our list: City Nature Challenge. Find things in nature and record and...
Austin360 recreation list, April 27-May 3

Markets Barton Creek Farmers Markets. 9 a.m. to 1 p.m. Saturdays. Parking lot of Barton Creek Square, intersection of South MoPac Boulevard (Loop 1) and South Capital of Texas Highway (Loop 360). 11 a.m. to 3 p.m. Sundays at 2323 S. Lamar Blvd. 512-443-0143, Bastrop Producers Market. Indoor farmers market. 11 a.m. to 7...
Fit City: Don’t miss these four upcoming sweat-inducing events
Fit City: Don’t miss these four upcoming sweat-inducing events

Award-winning climber Maya Madere, 17, boulders in the cave at Crux Climbing Center in 2016. Tom McCarthy Jr. for AMERICAN-STATESMAN Looking for some cool, fitness-oriented events in the comings weeks? These caught our eye: Crux Climbing Center, an indoor climbing center, celebrates its second anniversary with Come and Send It Fest from 9:30 a.m.-10...
Al Gore picks up Lady Bird Award from LBJ Foundation
Al Gore picks up Lady Bird Award from LBJ Foundation

On April 24, the Luci Baines Johnson and  Lynda Johnson Robb handed over a blue globe resting in bronze hands to former Vice-President  Al Gore as part of the 2018  Lady Bird Johnson Environmental Award ceremony in New York City. Lynda Johnson Robb and Luci Baines Johnson...
More Stories