Like any teenager, Andrew MacKinlay has challenging days - days when he misses a key shot on the basketball court or has mountains of homework. Rather than let things get him down, however, he's devised a way to cheer himself up. Lying in bed at night, he remembers the challenges he faced as a 5-year-old with cancer, and the wise words another young Jimmy Fund Clinic patient offered:
"It will get better."
That simple message helped Andrew through two years of treatment for acute lymphoblastic leukemia (ALL) at Dana-Farber and partnering Children's Hospital Boston, and now he's passing the advice on to others. In remission at age 13, he has become a passionate advocate at the Institute, sharing his story of struggle and survival with other kids - and adults - who are battling all types of cancer.
The seventh-grader's partner in this mission is his mother, Cyndi MacKinlay. When Andrew speaks to patient and donor groups about his experiences, his mom often precedes him on the podium to share the story from a parent's perspective.
"We're a good team," Andrew says of the arrangement, which has included speeches before Dana-Farber's Leadership Council, Board of Trustees, and at various fundraising events, including the Boston Marathon® Jimmy Fund Walk and the Evening with Champions ice-skating exhibition. "I try and let people know that if I can get through it, they can too, and my mom talks about the things a parent can do to help. The audiences often get very emotional, so I think we're reaching them."
Their message is twofold. In addition to sharing details of what patients and families must endure during treatment, they discuss what Andrew is up to now. Like all survivors should be, he is monitored regularly for secondary cancers and other late effects of therapy, in his case at Dana-Farber's David B. Perini Quality of Life Clinic. But he's also an honor-roll student playing basketball, football, and baseball, and dreaming of a college hoops career like his dad enjoyed.
"Andrew is competing where he should be these days: in his classroom and on the ball field, not from a hospital bed," Cyndi MacKinlay told the crowd at a celebration of survivorship at Dana-Farber, where the duo spoke last summer. "Whenever we return to the clinic or hospital, he appreciates the journey, and understands why our family is deeply committed to helping those facing cancer's peaks and valleys."
Like many young cancer survivors, Andrew is mature beyond his years. He was just starting kindergarten back in 1998 when he had acute stomach pains that prompted Cyndi and her husband, Glenn, to make the 25-mile drive from Norwell, Mass., to Children's Hospital. An ALL diagnosis came the next day, and Andrew started treatment at Children's and Dana-Farber immediately.
Between blood and platelet transfusions, a combined protocol of chemotherapy and cranial radiation, and assorted complications, he spent much of the next six months as an inpatient. His lack of complaining earned him the nickname "our small soldier," and even on his chemotherapy days he found the strength to play T-ball.
To guard the implanted catheter on his chest from harm, his mother cut a catcher's chest protector down to his size. When the port finally came out after two years, Andrew enjoys telling audiences, he called it "my de-portation day."
In addition to caring for Andrew and his baby sister Meredith, Cyndi helped establish the Pediatric Patient and Family Advisory Council in the spring of 1999. Among other advances, the council has worked with medical leadership at Dana-Farber and Children's to ease emergency admittance for pediatric patients and formalize the process from active treatment to "off treatment."
"Cyndi personified an issue we have in Pediatrics: the anxiety associated with elective cessation of chemotherapy in our successfully treated patients," says Dana-Farber Chief of Staff Stephen E. Sallan, MD.
"The impending loss of that safety net of chemotherapy, as well as its desired loss, creates a terrible dilemma for families. She went after that issue in a way that resulted in a handbook that is now given to all our families making the transition to off treatment. It's Andrew and his family's contribution to all families that follow them."
Cyndi speaks about Andrew's ability to "not just survive, but to thrive," and he shares her pride. She has ridden in the Pan-Mass Challenge to benefit Dana-Farber with a picture of Andrew taped to her handlebars, and he plans on joining her for the ride when he's 15. For those who have heard them speak, such goals are no surprise.
"For me, their heartfelt message shows the transition that has happened over time," says Jimmy Fund Chairman Mike Andrews. "Forty or 50 years ago, when pediatric cancer was essentially fatal, Dr. [Sidney] Farber wouldn't use patient names. Now we have kids and families and adult patients who want to come out and tell their stories. When they get up to speak, that's the most powerful testimony we have that we are making a difference."
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