Child's Play: Helping Kids Live with Cancer

Lauri Seamark and her dog Dani are like the pied pipers of The Cedars-Sinai Comprehensive Cancer Center: Wherever they go, a gaggle of children follow. A Child-Life specialist devoted to the youngest patients at the Cancer Center, Seamark creates a safe, productive environment for children dealing with the rigors of cancer treatment. Salick Health Care staffer, Heather Pitre, interviewed Seamark and volunteer dog, Dani, in her colorful playroom filled with toys, books, drawings, and tiny furniture where kids feel at home.

Q: I wanted to get some information on what it is exactly that you do. Maybe you could describe a typical day (if there is such a thing).

A: A Child Life Specialist is here to lessen children's anxiety and give them a sense of security while in the Cancer Center, and to create something fun, a diversion, so that the focus isn't entirely on their illness. Sometimes we play just for the sake of having fun, because that's important, and sometimes the play is more directed. It could be medical play, where we're working on the child mastering some medical experience that he or she is going to have.

Almost every weekday we have a pediatric clinic, and during clinic we have a wide variety of kids that come in really fast so the volume is high. During that time, it's more like controlling the chaos, but we do a lot of open play and fun stuff. We have kids that are coming in for an annual checkup and they're just here one day a year because they've completed treatment. We have kids that are right in the middle of treatment. We have kids that are referrals and will be here one time only. We have kids that are infants, all the way through age 18, and they're all here at the same time. It's a time when I utilize my volunteers. During clinic I spend a lot of time in the playroom with the kids, just finding activities for each child that are developmentally appropriate.

Also during clinic we do a lot of procedures and I'll go over and assist the kids with the procedures. I'll be the safe person, the person to encourage them and hold their hand and make sure that the doctors are explaining on the child's level what's going on. I help the child identify coping mechanisms. Some of the kid are attenders and they like to know what's happening to them and they have to watch and know every step of the way what's going on. Other kids are distractors. You want to do your best song and dance to get them to not pay attention to what's going on. We'll read books, we'll blow bubbles, we'll practice breathing, things like that, so that they're not focused on the medical procedure that's taking place.

Q: That ties into another question I had about how this program fits into their overall treatment. Are you with the kids when they go to their appointments?

A: Yes. For example, I have a four-year-old right now being treated for leukemia. Every time he's here he usually gets some sort of chemotherapy, like a shot, or through an IV, and they have to place all that, so he has become my little shot expert. Every day that he's here, we get the dinosaurs out of the cabinet, those are his favorite thing, and the dinosaurs get shots. He has it mastered. He knows that first you clean with the alcohol, and that feels cold, and he can play the role of the doctor and talk the dinosaur through it and then I can be the dinosaur and I can role model appropriate ways for the dinosaur to behave during the shot. And then when we go to the treatment area or the clinic, we'll do the exact same role play there and he'll know all the appropriate responses and things. For him, the same language you use with the dinosaur when you're practicing is exactly how we're going to do it when we're back there, and then he knows what to expect so he's less afraid, more cooperative, and his anxiety is so much less. He can recover and he's back emotionally to where he was before he had the shot. That's the goal-to take the anxiety away as much as possible.

Q: I wanted to ask you also about resources that kids use on the Internet. What kinds of software and CDROMS are available?

A: I'm just starting to get into it. I'm going to the Child Life Conference in June and one of the presentations is specifically on the Internet. There's a site called Convomania that we use here. They have a yearbook and the kids can go online and fill out a questionnaire and we mail in pictures which are scanned in and the next time they get on they can see themselves in the yearbook and other people can see them. Let's say there's a 13-year- old girl that has Hodgkin's Lymphoma. She's done her yearbook page and can go through and search for other people in the yearbook by diagnosis, age, anything, and can find someone to network with and share her experiences. Part of it's just about being a teenager and the other part is what it's like to be a teenager with a serious illness.

Q: What would you say, if you could pick one thing or maybe one area, that you value most about what you do?

A: Every child that comes through the door is here for several months to several years on a fairly regular basis, and because of that I really have a chance to develop a strong rapport with the child and the family. That's probably what I value most. In the setting I worked in previously it was a lot of tonsils and tubes in the ear and you met children and then 24 hours later you never saw them again. Here it's a long-term relationship and really having a chance to feel like you've accomplished something.

Q: What would you say is the most difficult?

A: I would have to say, hands down, it's when a school-age child dies, and they have friends here, and you have to help the other kids process that; watch them struggle with that. They want to know why it happened to their friend and if it's going to happen to them. It's really challenging.

Q: Can you tell me about the special projects that are coming up or that you're working on now?

A: Every year we have Camp Rainbow in the summertime, always the week before Labor Day, and we go up to Camp Max Strauss which is in the mountains of Glendale. This will be the 15th year. The kids stay for 7 days, 6 nights, and we do everything from swimming to horseback riding to archery to arts and crafts. It's exhausting but great fun. It's all kids between 7 and 17 who were patients at one time. Some were patients when they were so young, they don't remember their medical experiences, and now they're healthy and they've hit 7 and they're ready to go to camp. Other kids are in the middle of their treatment and they're up there with their bald heads and their pic lines and having a great time.

Project 9865 is a special project going on in the community. There's this old oil derrick on Olympic Blvd.-the address is 9865-and you see it when you're driving into Century City and it's kind of an eyesore, it's an old run down tower. A local artist named Ed Massie has plans to put panels on it so that it will become the largest public artwork project ever. The children doing the painting are children throughout the State of California who have some sort of life-threatening illness. Our kids did the test run. The TV show Extra! came and did a piece to help him with fundraising. It's a floral design, and each side of the tower is a different season, and he has it set up so the kids will succeed no matter what their painting ability is, which is really great. Our kids that day had a blast working on it. The surface area of the tower is larger than the ceiling of the Cistine Chapel, so it's a big project.

The artist has a special brush-- Nike donated tennis shoes and the brush attaches to the shoes so that the kids that have IVs and can't use their hands can paint with the shoe brush he crafted.

Also, twice a year we're going to take trips up to Neverland Ranch, which is Michael Jackson's ranch. We went for the first time in October and we'll go again in June. The kids loved it. They had the time of their lives. He had a rule that no parents could go, which the kids loved, and they were spoiled the whole day. They went to the zoo and he had fabulous animals. He had a barbeque lunch and a theater with these big reclining chairs and a big candy counter with sodas and ice cream and candy and popcorn. They all got on sugar highs. Then we went to the amusement park. They rode the bumper cars and the zipper and all of those stomach churning things, and there was candy there too, so by the end we had to drive three hours down that mountain, with all the kids on sugar highs, and miraculously no one threw up. They had a blast. The new kids that have joined us since then are so anxious to get to go.

The other special things are individualized child-by-child. We just had a young man recently whose wish was to be an LAPD officer. Bernard Parks, the chief of police, had a swearing in ceremony at the Newton Station in South Central He got to spend time with the K-9 unit and at the police academy shooting guns. He went up in a police helicopter and they located his house. They drove all around town with the sirens flashing in the car and came back here at the end of the day and brought everyone a huge cake. He was in full dress uniform with a badge, and he was just beaming and he wants to do it again.

There are other organizations that work with the kids-Starlight and Make a Wish. We have holiday parties which are big events. We had Brendan Frasier who is George from George of the Jungle who came to our holiday party in the Winter. When Olyvia Newton John re-released the movie Grease she came by-she's a cancer survivor herself-and she brought tickets for all the kids to go the premier at Mann's Chinese Theater.

Q: It sounds like you've had some experience working in other similar settings. Do you have a sense of how this particular organization compares to others?

A: Professionally, for me, this is an ideal setting where I'm a member of two different teams and so I get so much support. I have the pediatric oncology/hematology team and that's who I work most closely with when it comes to the children and the medical aspects. I'm always learning things. On the flipside, I'm also on the psychosocial team, and they're always exceptionally helpful. There are the social workers and nutritionists and all those key players and I'm always learning from them and getting support and direction. When I get confused they're always very supportive. When I think about the fact that I'm tied into those two groups, the kids, when they come through, are tied in too. They have not only me here, but they have the fabulous medical staff and they have the support of the psychosocial team. They have all these supports for themselves and their families, the parents too. It's wonderful.

I think the other thing I like about this place is when I go home at night the kids go home. It's an outpatient center. The places I've been before, where I've worked inpatient, you go home and child has to stay and you can see that they're jealous because they want to go home too. Here we have to put the toys away and pick up the playroom and it's time for everybody to head home. That's really nice.

Q: The dog! I need to know about that.

A: Miss Dani is a registered therapy dog, and she had to go to special school and have extensive screening to be accepted into the therapy dog program. She's registered through two national organizations and she comes every Thursday. She has to have her teeth brushed and a bath within 24 hours of coming and her nails have to be well taken care of and not too long and scratchy. There are all sorts of rules for safety. When she's here mostly what she does is cruise around and get people to smile, which is easy. She also does tricks and the kids will brush her and polish her nails-she has hot pink on right now. They dress her up, she has a wardrobe. She has her Michael Jordan jersey and her Emmett Smith jersey and her leather jacket and doctors scrubs and all sorts of sunglasses. They'll walk her-take her back through radiation so they can all visit the exam site. The kids will even walk her outside so she can take a break.

The most challenging part of having Dani around is that 6 months ago she was diagnosed with cancer. At first this had to be the world's worst thing. I just felt like I'm doing cancer at home, I'm doing cancer at work. It was just like there was no escaping it. When we did tell the kids it turned out to be exceptionally beneficial, which I hadn't seen. They instantly started asking question after question and were very curious what was going on with her; how she felt. It was kind of fun because Dani can't say how she feels so I got to make up the most therapeutic answers that I could think of. Dani really modeled some appropriate feelings for them. She takes Prednizone which is a drug that a lot of our kids take, and it makes her eat. She's gotten very fat. The kids love it. This is the Predizone puppy and they want to know what she's going to eat today while she's here because she's so hungry. So it's turned out to be, in a bizarre roundabout way, a beneficial thing for a lot of the kids. To watch Dani struggle-she doesn't like to swallow pills, and she gets her chemo in a pill and so we tried all the different strategies, hiding it in peanut butter. Now she gets it in a McDonald's cheeseburger. The kids love to hear stories about Dani spitting her medicine out and not cooperating.

Q: How is she doing now?

A: She's doing wonderfully. She had her big surgery and they took the tumor completely out and we're doing the chemo just as a preventative thing. She'll finish at Christmas time, so it will be a full year of chemo. Every couple of weeks she has a day of complete exhaustion, but other than that she's doing really well.

Q: What kind of dog is she?

A: She's a beagle. The smallest size beagle-a 13 inch. She used to weigh 25 pounds when she started and now she's like 29.7. When you only weigh in the 20s and you gain nearly 5 pounds, that's a lot.