Goals and milestone recognitions may help children with cancer get through treatment a little easier.
Devon Davis has developed a notable sense of style with an array of baseball cap and sneaker combinations in red, white, black, orange and grey. He has more than a dozen colorful matching sets.
Add to that mix a new pair of gleaming white Nikes, which the 15-year-old purchased with a gift card from his family on July 25, the day he underwent a stem cell transplantation to combat acute myeloid leukemia (AML). On that day, clinicians at MD Anderson Cancer Center in Houston brought in bone marrow—donated by Devon’s twin brother. To mark the occasion, a hospital chaplain administered a blessing and then everyone joined in to sing a round of “Happy Birthday.”
“They say it’s a rebirth—the day that you’re reborn,” Devon says, describing the scene from his hospital room a month later.
The ceremony and hoopla surrounding a stem cell transplantation is one of the more high-profile ways to commemorate a treatment milestone. But for children and teens with cancer, it’s also important to mark more incremental goals, whether it’s completing a chemotherapy session or a scary lab test, mental health clinicians say. To a young child especially, a year can seem more like infinity. “Children definitely respond favorably to short-term incentives and prizes,” says Yvette Drake McLin, an assistant clinical professor of psychiatry at City of Hope in Los Angeles.
At the same time, parents should stay clued in to their own child’s personality and coping style, says Regina Melchor-Beaupre, a licensed clinical psychologist practicing in Miami. Whether a child wants to be feted, or even to acknowledge their cancer, might shift significantly as the months and years pass. “We have this assumption that cancer is a static diagnosis, and it is not,” says Melchor-Beaupre, who completed a psycho-oncology clinical fellowship at Memorial Sloan-Kettering Cancer Center.
“With children, it’s even more complicated because the children themselves are moving targets,” she says. “They continue to develop cognitively, psychologically, physically, spiritually, morally.”
As children navigate a life-threatening diagnosis, the objects they bring along or the gifts they receive can become emotional touchstones, accruing value or power over time. A cozy “blankie,” a calming force for any child, can transform into a protective shield during unsettling experiences, such as an MRI test, Melchor-Beaupre says.
The child psychologist recalls one young girl, about six years old, who had always dreamed of a dollhouse. It became a family project, something they all embraced and looked forward to creating after chemotherapy ended. The girl’s father built some furniture. The mother sewed little blankets and pillows. The girl helped with painting.
“It’s the whole idea that it’s our cancer, and it’s not just your cancer,” Melchor-Beaupre says. “So the person doesn’t feel alone in this endeavor. This is a dollhouse that she will always have. And it will be that meaning-making transitional object.”
I look at them. I count them. You can see the struggle through the beads. You can see the good through it, too.
MD Anderson is one of the hospitals around the country that participates in the Beads of Courage program, which provides seriously ill children and their families a tactile way to mark their treatment journey. The non-profit organization distributes a myriad of colorfully designed beads, which the child can string together over time. A child can collect a bead for each overnight in the hospital, for each time “poked” during a lab test, for each chemotherapy session and for numerous other large and small steps forward along the cancer path, says Thuy Trinh, a child life specialist at MD Anderson.
The strand accumulated by Devon, who is in the midst of his second bout with leukemia, stretches more than 800 beads long, or roughly four times the teen’s height, estimates his mother, Tervina Hall. During this hospital admission she draped it over her son’s I.V. pole.
Not surprisingly, Devon would prefer to talk about basketball rather than the beads, and sometimes teases his mother about “not forgetting her beads,” she recounts. Perhaps they help her even more, she acknowledges.
“I take them to heart,” she says. “I look at them. I count them. You can see the struggle through the beads. You can see the good through it, too,” she says, like activities that Devon has participated in, such as a trip to the circus.
[Setting goals during treatment can help patients to the finish line.]
Given the length of time involved, the child or adolescent may have traveled a long way in terms of their passions and emotional needs by the time treatment wraps up. Someone once obsessed with SpongeBob might be understandably insulted at even a mention of the cartoon character.
Moreover, the family might not be on the same page. In some instances, the parents would like to mark the end of treatment, or a particular anniversary of diagnosis, while the child wants to move on, Melchor-Beaupre says. Don’t assume, she stresses. Ask the child what he or she would prefer to do or not do.
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On the day of his July transplantation, Devon was not the only star. His twin brother and donor, Dalvin, was also recognized with a new birth date. And he received a gift card, one that he used to purchase a ukulele.
Now the entire family is counting down the days until day 100, considered to be a key marker of transplantation success. Tervina Hall prefers to wait until the longed-for date nears before brainstorming plans. But she’s sure that food will be involved, she laughs, as Devon loves her lasagna and her crispy baked chicken.