"It allows both of us, especially her, to take her all the bad things that happened to her and channel it in very positive way. The big thing ASK does for kids is that it really helps support you all the way through. You always feel like someone's there if you need it."
-Peggy Andrews

Even though more are surviving, the number of children diagnosed with cancer has increased during the past few years. The Association for the Support of Kids with cancer in Richmond has for 30 years sought to help both the children and parents with emotional and financial support as well as specific programs to keep kids doing what they normally couldn't.

Parent and board member Peggy Andrews knows first hand the heartache of learning her child had cancer. Her daughter, Tiffany, was 13 when she diagnosed with a malignant brain tumor, but after surgery and more than a year or rehabilitation, her daughter survived and is now a student at Virginia Commonwealth University. Andrews said ASK was an incredible resource for both of them and both she and her daughter continue to volunteer with the organization.

Executive Director Anne Cuomo worked with chronically ill children at MCV before getting involved with ASK. Both women are hoping to raise awareness of the organization, especially as it prepares to kick off one of its biggest fundraisers this Saturday -- the third annual Fun Walk & 5K. For more information on ASK and the fundraiser, visit www.askweb.org.

Peggy Andrews

How did you get involved with ASK?
I first became aware after my daughter was diagnosed with a brain tumor. When she started chemotherapy, I became aware of the organization through the nurses in the clinic and so forth. Then when my daughter was undergoing therapy at Children's Hospital, Ms. Cuomo was there full time in the education department so she knew and she was affiliated with ASK and knew I was bringing Tiffany over for therapy. So she'd let me come over and talk to her. She started telling me about the organization and what they do for kids.

One of the first things we did is a family picnic ... my daughter was either in the hospital or housebound, and ASK was kind of an outlet to get her out in public even though she was in wheelchair at the time. It gave her some socializing with other kids and, for us, contact with other parents.

How did you find out your daughter had cancer?
She was diagnosed at 13. She's now 20 years ago and a sophomore in the School of Arts and Graphic design at VCU. She had a malignant brain tumor, a medullo blastoma. We had been on vacation in August in South Carolina, where we always go, and she was acting a bit lethargic and not really invested in doing much, which is unusual for her because she loves the beach.

She said she had really bad headache and wanted to lie down. To make a long story short, she spent all day in bed for a few days of the vacation. She was just kind of lethargic and not showing too much energy. We called the pediatrician, Dr. John Andrako, when got back. We knew something was up. After he examined her, he said, "Let's figure out what's causing these headaches." He scheduled a CAT scan at St. Mary's. A few days later, we had that and when we got the results back, immediately the radiologist came out and showed me on film that there was a tumor sitting just above the base of her spine. We immediately rushed down to Dr. John Ward, a pediatric neurosurgeon at MCV who's another really great guy. She was scheduled for surgery within a few days.

What happened next?
The surgery was successful, but (the tumor) was in the fourth ventricle, near the brain stem. What happened was she unable to speak. She said one word afterward and then didn't speak for three weeks again. When she did speak, we couldn't understand her at all. She couldn't walk or use her hands, so within about a week, we left MCV to go to Children's Hospital as an inpatient. They discovered internal bleeding, and gastritis from the steroids they'd had to give her before and after the surgery. She went back to the hospital. There were lots of things that happened to her along the way. Within 30 days of surgery, she started oral chemotherapy and radiation. It got to the point where she couldn't keep anything down in her stomach. She wound up back in the hospital at Thanksgiving.

She had to go on IV feeding for the next 14 months. I learned how to do part of the nursing aspect at home because she would be hooked up at night, and gradually weaned off. She was doing well, and trying rehabilitation.

How is she doing now?
She worked really hard to rehabilitate. Now her speech is fine, but she spent about 14 months in speech therapy and physical and occupational therapy. Whatever limitations she has, she has adapted very well. She's a little unsteady on feet, especially when she's tired, but most people wouldn't notice.

As the years progressed and she started feeling better and doing better, she began attending St. Gertrude's High School. She's a graduate. But when she first started, she could only go half a day because she was still in the middle of chemo. Everything was really fragile, and they took a chance on her. They said, "We'll make this work, whatever it takes." She started slow with a half day at first. Everybody worked so hard to make it successful.

She's very much interested in computers, and is thinking about something maybe in Web design. She's just learning, but loves being on a computer, and when she was recovering, as she felt better, she would do that because she was not able to socialize with friends. Her dad has background in architecture and teaches computer design, and he'd always let her play on programs as a little kid. I think she grew up with a natural leaning that way.

How did ASK help you and your daughter?
Just being able to sit down and have someone you could talk to. She (Anne) was there for hour or two. She gave me place to go. Anne is the type of person who's very easy to talk to. She probably helped me more than Tiffany initially.

As Tiffany started to feel better, she would go to more and more of the events, and I'd attend with her. We just found that it was like being surrounded by a very loving network. At the hospital, and they'd have a child life specialist at clinic. The new clinic is bright, and full of things kids would love to be around, and it takes their mind off of things.

What kinds of programs does ASK offer and how has Tiffany gotten involved?
One of the things we're sponsoring is one that's part art therapy and part group sessions with graduate psychology students at VCU, and it included family participation. The art project you do at the beginning of the evening and the kids would go into little sessions and parents would too. It was one of the first things we did.

The other things she enjoyed was doing the video, and we have another program we do is called "Girls Day Out" at a spa and she loves that. One of the board members owns Gali's Salon in Carytown. It's called "girls just want to have fun." She loved it because Allison (the salon owner) would close the shop down; the employees would come in, and they'd get massages, get their nails done and haircuts. They would just be treated like royalty. Then at Christmas, we'd do the tacky lights tour. And we'd also have family picnics.

A couple of years ago, we started a youth advisory board, and one of the things we sponsor is a retreat for young adult survivors, which starts at age 19. Tiffany has started participating in that. It's been really good because it gives them a base of like individuals to be with, and kind of a support group without being a support group.

Tiffany has done the Fun Walk the past three years and each year, she has had friends come out and walk with her. She also went out and raised a lot of money through St. Edwards' Epiphany and St. Gertrude's. This year, her group is called Tiaras for Tiffany. She's raised about $900 this year. I'm really proud of her.

She's learning how important volunteering and giving back is. I know it's kind of cliché, but it really and truly is. We also do it (volunteer) for those with pediatric brain tumors. It allows both of us, especially her, to take her all the bad things that happened to her and channel it in very positive way. The big thing ASK does for kids is that it really helps support you all the way through. You always feel like someone's there if you need it.

Why is ASK important?
It goes back to the support thing. A lot of times when kids are diagnosed with cancer, one parent, if they're undergoing chemo and radiation, one parent has to be there available to do the clinic visits because it's not just once a week. So one of the things ASK does, which is especially helpful for those who are single mothers or fathers, is that if they need financial help, we will help them with the mortgage or utility bills or buy groceries.

We also do a program, it's like a "park and feed." We give them meal tickets to use and this is for caregivers to be able to have a meal every day and pay for parking at MCV hospital. Those are some of the ways ASK supports some of the people. They have a child life therapist there to divert kids' attention and make them feel like kids. They're there to play with them and provide needs. We do a lot of things.

In 2004, I came onto the board. I had been asked before, but I had said to Anne (only) when Tiffany was in a better place and I have the time. I'm also the board secretary. It's been a really rewarding thing for me and gave me a way to channel my energy back in a very positive way. Unless you walk the walk, you can't understand it. Everybody wants to support you and understand, but unless you've been there, you don't understand. The kind of board we have is made up of parents and business community, that blend of the two I think is what's really important because when we go out and talk to families in the community ... it's helpful to them because they have someone who has been through it and sometimes your example if you have a positive outlook on things, sometimes you can help people transition from a negative place and help them see there's light at the end of the tunnel.

What are your goals for the future with ASK?
For me, I've been doing this for four years and I'm just about to step down off the board and not because I'm bored by what I'm doing. I think it's healthy to have transition on the board to keep us fresh and new faces and new people and new ideas, but I will continue to volunteer.

How can people help?
You can always volunteer your time. We have, over the course of a year, pretty much every month, have something going on. We always need volunteers. You can go to our Web site, www.askweb.org. You can call Ms. Cuomo. A lot of times we get our volunteers through family members of patients that are going through treatment and want to help do something, including several board members. We're very much a working board. All the board, we don't get out to everything, but we all try to get out to as many events as we can. We're always looking for volunteers. We're always looking for monetary donations. That's another big way you can help.

Is there anything else you would want people to know?
This is a great organization. It supports people not only financial and spiritually and emotionally. It tries to give you an organization that really extends their hand and does whatever they can to help you through that whole period. And not just that period. With the late effects (of treatment) and the youth advisory board, because more survive childhood cancer now, we're always looking at ways to help families even after they finish treatment.

Anne Cuomo

What does ASK stand for?
The Association for the Support of Kids with cancer.

How was ASK created?
It was created back in mid-'70s by group of parents who had children who were diagnosed with cancer and came together for support, mainly out of bereavement, because then most of the kids didn't survive. Then ASK continued growing for past 30 years. It was a volunteer organization till three years ago when it hired its first part-time director and part-time development director.

The ASK board continues to be made up of concerned citizens, volunteers and parents of children who've been through treatment. We have 17 (people) on the regular board and 14 on the advisory board. We also have a youth advisory board made up of 20- and 30-year-old childhood cancer survivors. There are 14 people on that board.

How has it changed?
Through fundraising, we're able to do a lot more for the kids. There are more efforts on survivorship since kids are surviving, and with survival, also comes concerns for lasting effects of treatment. We try to address these needs as they finish their treatment and go on to go to college and into jobs.

With survivorship, we work closely with hospital staff to create long term survival clinic and advisory board to address a lot of the needs of kids as they get older. We developed a young adult retreat, which is now an annual event, and we also biannually have a conference on long term survivorship that's open to both patients and family members.

How did you get involved?
I was an educational consultant at MCV for many years and worked with chronically ill children. One child in particular touched me and I became very involved with him and his family. Unfortunately, he passed away. After that, I was asked to serve on board of directors.

What are your responsibilities as executive director?
My responsibilities are to cultivate donors and supports of ASK, to support our children and families and enlarging and increasing our programs.

What's the most challenging part of your job?
Fundraising and awareness are the most challenging. There are a lot of worthy nonprofits in the community and it's just incumbent upon us.

What are your goals for the future of ASK?
We're looking to increase programs for survivorship and develop family care council to help us understand the needs of parents as kids go through treatment. Right now, we continue to reach to families and children by creating programs. One example is in cooperation with USA Baby where we make over a child, usually someone who's been isolated by treatment and needs a little lift in their life. Another example, we also have a pre-school program, in partnership with First Baptist Church on Monument Avenue for kids ages 2 through 5. The kids are isolated from going to (regular) pre-school, so we provide a safe environment. It's called First Step: socialization through enriched play.

How many volunteers do you have?
We have 100 volunteers just for next Saturday alone (at the third annual Fun Walk and 5K). We have many others through the year, with other events, like social events as well for families and children.

Tell me about the Fun Walk and 5K happening on Saturday 
It's our third year for the walk, and the mission is to celebrate and commemorate the lives of children with cancer. It's Saturday, April 26 at Short Pump Town Center. Last year, we added a 5K component and we're continuing with that this year. Roadrunners of Richmond is helping us set up. We're expecting 1,000 people this year to raise awareness and funds. We had about 800 last year. We're hoping for 1,200 this year.

What do you want people to know about ASK?
We want people to know that the numbers of kids receiving cancer diagnoses has increased in the past two years. Therefore, their needs and ASK needs have increased. One of the areas important to us and families, in addition to support, is financial aid.

We do not pay for medical care, but we do try to help with every day expenses to alleviate some of the stress caused by the financial devastation. Many families have two-family incomes and one parent has to quit working so the other can stay and take care of the child. That can last up to two years for treatment. There are a lot of single moms and dads who are solely responsible and need a lot of support from us to do their jobs.

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