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Running to Help Pediatric Cancer Patients

Laberta, Valerie

doi: 10.1097/01.COT.0000484157.67419.01
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Howard J. Weinstein, MD
Howard J. Weinstein, MD:
Howard J. Weinstein, MD, and teammates run the last 100 yards of the 2016 Boston Marathon.

Never before had 26 miles and 385 yards seemed so long, so grueling, so exhausting. But despite a braced knee, prior unhealed injuries, and a 69-year-old body qualifying him for senior discounts, Howard J. Weinstein, MD, was hell-bent on crossing the finish line of the 120th Boston Marathon. “There was no way I wasn't going to reach my goal of completing my 25th Boston Marathon,” said Weinstein a week later. “The entire race was like a victory lap for me.”

Chief of Pediatric Hematology/Oncology at MassGeneral Hospital for Children in Boston, Weinstein ran the race with a sense of urgency that went far beyond the scope of personal athletic achievement. He was compelled to run by something more emergent than mid-race blisters—the hopes and needs of his young cancer patients.

After assuming his position in 1996, Weinstein undertook the founding of a running team, not just for the purpose of athletic camaraderie, but more importantly to raise awareness and money—a lot of money—for the hospital's pediatric cancer program. “My other goal has always been to honor my patients,” he noted. It would seem he has succeeded on all counts.

The first year the team undertook the race they were 10 runners strong and raised $45,000, a sum that Weinstein considered none too shabby. “I was really very happy with that,” he commented. Little did he imagine that his team would grow to include 100 runners—hospital staffers, family members of patients and even former patients themselves—who would dash across the 2016 finish line with more than $900,000 in pledges. Thanks to a partnership with John Hancock, the Mass General Marathon Program has raised close to $12 million since 1998 to support pediatric cancer, and more recently, also support emergency preparedness programs. Alone, just this year, Weinstein raised $85,000 and has brought in close to $1.3 million for the children's cancer program.

Figure
Figure:
At mile 20, Howard J. Weinstein, MD, receives support from his 4-year-old patient who has acute lymphoblastic leukemia.

Essential Funding

More good news is found in the fact that 95 cents of every dollar raised actually makes it to the program, thanks to extremely low overhead, “I am incredibly proud of that fact,” said Weinstein, who explained the money supports laboratory research, quality-of-life programs, patient mental health programs, art and music therapy, child life therapy, and some clinical work in oncology. “Several of these areas have no hard funding and are dependent on philanthropy. I can't imagine taking care of kids with cancer without that support. It is really integral to what we do,” he commented.

Weinstein spreads his personal philanthropy beyond the Boston area, and is currently working to help establish a pediatric cancer center in poverty-stricken Uganda. Having been to the African nation via a MassGeneral global initiative, Weinstein realized the hospitals there have no subspecialists at all. “I've visited a Ugandan hospital twice in the last 6 months, working on developing a training program for pediatricians interested in having a career in hematology/oncology. I am really super excited about that. My hope is to develop a program that will be sustainable: Ugandan doctors we train will then go on to train the next generation and so on. Because the country is so poor, this is all dependent on philanthropy.”

Figure
Figure:
Enjoying a post-race reception with fellow runner, Courtney Earle.

Recounting Highlights

But for now, Weinstein is still in stateside post-race afterglow status. “This was my most thrilling, but also my most painful run,” said the oncologist. “I knew it was going to be rough going into it this year; I already had existing pains from earlier injuries that weren't healed. But nothing was going to stop me. My next ‘activity’ will be seeing the sports medicine doctor next week,'” he added.

Knowing this would likely be his last such race, Weinstein was “in the moment” savoring step-by-step realizations. “At about Mile 13 near Wellesley, I heard someone on the sideline screaming, ‘Hi Dr. Weinstein!’ I looked over and I couldn't believe it; there was one of my former patients and her son. I had treated her for acute myeloid leukemia—and she had required a bone marrow transplant—when she was 13 years old. She is now 43 years old and her son is 8. It was simply amazing; seeing them cheering me on gave me a burst of energy that was nothing short of incredible.”

Another highlight was at Mile 20, very close to Weinstein's home, which has become a meeting place for patients, families, and friends who turn out on marathon day to cheer on the hospital's runners. His front yard is typically equipped for celebrants—with food, drinks, and plenty of hospitality.

“This year as I ran up to that point, there were no fewer than 100 people waiting for me—current patients, families, people I had cared for in the past. I was so touched,” said Weinstein. “I stopped there for quite a while—for hugs, photos—before continuing on. It was beyond my wildest dreams. It was overwhelming.”

Continue on he did, and just as he was entering the final, punishing 6.2 miles into the city of Boston, one of Weinstein's children, son Aaron, who came home from college to watch the marathon, jumped into the race to finish it with him and accompany him across the finish line. “It was just spectacular to have that support—I really needed it,” admitted Weinstein. “It had been a very long day.”

Honoring Patients

In reality, that “long day” had really begun months earlier—with group and individual training runs, fundraising efforts, and participation in a unique undertaking called the Patient Partner Program, specific to Weinstein's aforementioned goal of honoring his patients. Through this program, runners are paired with young patients and together they build relationships before the race that continue to expand through race-related activities and extend, in many cases, for years beyond. This year, Weinstein ran in honor of 5-year-old Harry, a child with Down syndrome undergoing treatment for acute lymphoblastic.

Harry, the other patients and their runner partners helped kick off marathon-focused activities the night before the race at a traditional pasta dinner. But there was more than spaghetti on the menu. “The jeweler who makes the medals for the Boston Marathon also made one for each of the pediatric patient partners,” he explained. “After dinner, each child was called up on stage with his runner partner and was presented with a marathon medal. Just to see all those young patients beaming with pride and wearing their medals was so emotional.”

There were a lot of happy tears—and some belonged to Weinstein. He, too, was surprised at the dinner to receive a book, created by members of his staff, detailing highlights of his 25 Boston Marathons captured in pictures and written tributes from patients, staff, family, and friends. “It was very, very special,” said Weinstein.

Recalling Years Past

Thinking back across the years and the miles, Weinstein said there were many great memories, and one distinctly bad one from 2013 when the bombing of the Boston Marathon turned runners' highs into runners' despair. He recalled he was running with former patients who had such joy and anticipation at nearing the finish line. When the bomb blast went off, “we had just one mile to go to the finish line,” recounted Weinstein. “Within seconds police arrived and stopped us... helicopters were flying overhead and SWAT teams were arriving. Within minutes it became all too clear what had happened. People were becoming hysterical, overwhelmed by the thought of injuries and loss of life. If you were a runner that day, you will never forget it or run a race without thinking of it.”

Yet, Weinstein is quick to note security has been ramped, and thanks to local police departments as well as National Guard presence, he has felt entirely safe and secure during subsequent runs.

Asked if he would do it all again, Weinstein answered without hesitation, “... in a heartbeat. If I could roll back time, there's no question that I would do it all again. It is one of the highlights of my life.”

Most people who watched the race on that Monday in mid-April would point to Ethiopia's Lemi Berhanu Hayle—the first runner to break the tape at Boston's Boylston Street finish line and take home the $150,000 prize as the big winner. But if they looked a little closer they would have seen MassGeneral's blue singlets dashing across the finish line with livesaving funds for pediatric cancer research, enhanced care, and expanded dreams. They would have seen the smiles on the faces of sidelined Patient Partners reflecting the urgent hopes of their families and friends. They would have seen a gray-haired hero who came in—proudly—well behind his best time. They would have seen the human face of caring, being carried by tired but steady feet.

Valerie Laberta is a contributing writer.

Wolters Kluwer Health, Inc. All rights reserved.
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