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First Person

Andrew MacKinlay: A young patient's story

A photograph of Andrew MacKinlay

Cancer-free since October 2000, Andrew MacKinlay has reason to smile these days.

Hi, my name is Andrew MacKinlay, and I am 8 years old. I am in second grade, and I live in Norwell with my mom and dad and younger sister and brother. I am really happy to be here and tell you that last October I finished two years of chemotherapy for acute lymphoblastic leukemia. When I spoke here last year, I had a year of chemo to go, but now I AM DONE! I was diagnosed when I was 5, and it seems like a long time ago.

As I ended my treatment, my family and I had fun as we celebrated my last pill, my last round of chemo and steroids, and the big one: removal of my port. My port sat inside my chest for over two years and was how I got my chemo. We called it my "de-portation" day. After the surgery to remove my port was over, I woke up in the recovery room, and my mom said, "Andrew, you did it ... it's all over."

I was happy when I felt where my port used to be and it was gone. Now, when I play Little League [baseball] this year, I will not need to wear a chest protector under my shirt. I saved my port, and we strung red and green beads on it and hung it on our Christmas tree. It was hung under a button that reads, I'M LIVING PROOF! I am very thankful for my Jimmy Fund Clinic doctors and nurses who helped me get healthy.

Two years is a long time for a kid to have chemo. It was hard to go back to school at first without my hair, but no one said anything, except one kid on my bus who called me "baldie." But he's mean to everyone. Chemo made my legs feel stiff, and sometimes when I was playing at recess, I would fall a lot. I really couldn't run very fast either.

A photograph of Andrew MacKinlay and his mother

Andrew MacKinlay and his mother, Cyndi MacKinlay, have both made their mark at Dana-Farber.

But I played Little League last year, and for one game I came right from Dana-Farber after starting my chemo. My mom was worried about my doing that, and she asked my nurse if it was okay; she said it was. I told my mom that morning that I was going to play, and I did. I am playing again this year, too.

Sometimes at school, I felt sick and tired and just wanted to put my head on my desk. It was hard for me to finish all my work on time, too. I spent a lot of time in the nurse's office, but she is so nice and always helped me out. She helped a boy who had leukemia a long time ago. He is in high school now and is our town's quarterback [in football].

At my end-of-treatment appointment, I asked my doctor two important questions: When will my legs be fast again (I used to run really fast), and when can I have vitamins? She told me it will take some time for the chemo to come out of my body, and then I should feel really good. She also said I could take vitamins any time. My mom brought some with her, and she gave me the first vitamin I have had in two years — right at the Jimmy Fund Clinic.

One of the medications I am glad I don't have to take anymore is called 6-MP. I had to take it right before bed and couldn't eat or drink anything for an hour before. I always wanted a glass of milk. The night after my last dose of 6-MP, I stayed up late and ate ice cream and popcorn, and drank lots and lots of milk while watching "Monday Night Football" with my dad. It was pretty cool.

"Two years is a long time for a kid to have chemo. It was hard to go back to school at first without my hair, but no one in my school said anything, except one kid on my bus who called me 'baldie.' But he's mean to everyone."

— Andrew MacKinlay

I have a few friends who have just ended their treatment. One girl was in high school when she got leukemia and was diagnosed a month after me. She has a nice family and lives near me. I saw her a lot at the hospital and at the clinic. She has been accepted into four colleges; I went to her end-of-treatment party and gave her roses. She had to work so hard in school when she felt sick, and to me that is awesome courage.

I know another girl who has a really mean leukemia. I remember telling her something that a kid at the clinic told me when I was having a hard time. He said, "It will get easier."

It has been so hard for this girl, and my family and I think of her a lot. I told her it will get easier, but it really hasn't for her. After I stopped getting those wicked painful shots in my leg, and I didn't need IVs or CAT scans anymore, and I wasn't in the hospital as much, it was a little better. For some kids, it just stays really, really hard the whole time.

I am happy that my hair came back. It's a little different than it was before, but that's okay. I am eating some of the foods I liked before I got sick, and they taste good again. Each day I am getting stronger, and I swim to help my feet and ankles get better. I always take my vitamin.

I really want to go to college and play basketball like my dad. One day maybe I will tell my college basketball teammates that I had leukemia, and that it was the hardest thing I have ever done. Maybe then chemo will be easier for kids, and they won't have to feel so sick for so long. Maybe by then all the kids will be cured. I like to think about that.

Then I will lace up my sneakers, go out and sink the winning three-point shot to win the NCAA championship. I like to think about that, too.

Paths of Progress, Winter/Spring 2002
Paths of Progress Archive

Andrew MacKinlay

In many ways, 9-year-old Andrew MacKinlay provides a perfect example of how programs for pediatric patients and their families at Dana-Farber can help make the challenges of cancer more bearable.

Treated for acute lymphoblastic leukemia in the Jimmy Fund Clinic and at Children's Hospital Boston, MacKinlay took advantage of their joint Back to School program when he first returned to his Norwell, Mass., kindergarten class in May 1999. Using a puppet show and other tools, Back to School staff members explained to Andrew's classmates why he needed an intravenous port embedded in his chest for chemotherapy and was allowed to wear a baseball cap in class. By the end of the session, kids fearful of "catching" cancer a few minutes earlier were running their fingers through Andrew's still-thin hair.

That September, MacKinlay donned a baseball cap again when he stepped to the plate at Fenway as part of John Hancock Fantasy Day. John Hancock Financial Services makes contributions to DFCI for each hit collected by adult teams and Jimmy Fund Clinic patients during this annual event, and Andrew did his part with several solid singles for the cause.

Among the family members watching Andrew that day was his mother, Cyndi MacKinlay, who has made her own mark at Dana-Farber as an active member of its Pediatric Patient and Family Advisory Council. After voicing concern about Andrew's being at risk for infection while waiting in the emergency room at Children's, she and the council helped bring about a new system in which patients weakened by chemotherapy can go directly to a private room in the Emergency Department. The system also provides valet services for families, especially helpful in those cases when a child can't walk into the hospital.

Engaging and mature beyond his years, Andrew MacKinlay — now cancer-free — has spoken several times to Dana-Farber staff and friends about his experiences.

The following is a talk he gave at the Institute last year.