Friday, April 4, 2014

Lily & Dr. Weinstein: A Story of Endurance



At the Mile 20 marker of the Boston Marathon route, Lily Waldeck, 6, waits impatiently. When she finally sees the wiry, silver-haired Howard Weinstein, MD, running towards her in his Mass General Marathon Team uniform, she can barely contain herself, and she leaps into his fatigued arms where the two share beaming smiles amid cheers and clanging cowbells.

Lily’s bear hug propelled Weinstein, chief of Pediatric Hematology-Oncology at MassGeneral Hospital for Children (MGHfC), to finish the marathon in 2012, and her courageous spirit is an ongoing source of inspiration for him as he works to find a cure for childhood cancer. Lily, now 8 years old and a bubbling source of energy and tenacity, embodies the MGHfC Cancer Center’s mission to persevere in the fight against childhood cancer. Thanks to the care she received from Weinstein and the rest of her care team, she now proudly says that she’s “stronger and faster now than when [she] had leukemia.”

At the starting line

It was during the summer of 2011, just before Lily was to begin kindergarten that she began to feel sick. Recurring fever and “wobbly” legs prompted Lily’s parents, Garry and Kathleen of Charlestown, MA, to visit their pediatrician’s office, where they asked for blood work to test for something besides a virus or growing pains.

“We were meeting with Lily’s kindergarten teacher when our pediatrician called and asked us to go to the MassGeneral Hospital for Children Cancer Center,” Kathleen says. “We figured that wasn’t great news.”

Lily and Weinstein at the MGHfC Cancer Center.

At the MGHfC Cancer Center, the family met with Weinstein who explained that Lily had acute lymphoblastic leukemia – the most common form of childhood cancer. Although the family was devastated by the news, they learned Lily’s cancer was treatable thanks to strides made in chemotherapy over the past 30 years. In the 1970’s, children diagnosed with acute lymphoblastic leukemia had about a 40 percent cure rate; now, children have an 80 to 90 percent cure rate with chemotherapy, says Weinstein.

“Chemotherapy involves the use of several drugs called chemotherapeutic agents, and each drug works on leukemia cells in a different way,” Weinstein says. “During the first four to six months, treatment is often intensive and may involve hospitalizations and moderate complications such as hair loss, fevers and fatigue. After the initial months, children for the most part stay out of the hospital and only come into the clinic for frequent blood work, outpatient chemotherapy and check ups.”

Lily’s treatment plan involved two years of chemotherapy at the MGHfC Cancer Center, with nearly 30 to 40 visits per year. Although she and her parents were nervous about the diagnosis, they said they never second guessed their decision to stay at MGHfC.

“Meeting all the doctors and nurses, it felt like a family,” Garry says. “Right off the bat we felt like these were going to be the people who would give us the best care.”

Hitting their stride

Over the first month of treatment, Lily became more accustomed to the clinic and at ease with the staff. She went from hiding under a blanket to doling out her famous hugs and participating in the MGHfC Cancer Center's programs and services for families. Lily says she loved seeking out the Child Life Specialists, playing with the music and art therapists, and participating in the holiday parties. Her parents remember times when Lily would long be done with treatment but wouldn’t leave because she was so engaged in completing an art project or putting on fashion shows with the staff.

“I was never afraid to come to the clinic. I always enjoyed coming to the clinic,” Lily says. “I would always ask, ‘When’s our next clinic visit?’”

Weinstein and the Waldeck family as he prepares for the 2012 Boston Marathon.

Having Weinstein as her doctor made Lily’s visits even easier. The two instantly bonded and grew an energetic and fun-loving connection. During a recent visit to the clinic, the pair scrambled to the waiting room's aquarium – Weinstein widening his eyes above his teddy-bear tie, and Lily curiously pointing out fish. At school, when Lily’s class was asked to do a report on a famous person, she chose Weinstein and boasted about his sense of humor and thoughtful care.

“He’s a doctor that mostly no other doctor can be. He always comes into my room every time I’m here at the clinic and says ‘Hi’ and ‘How ya doin?’” Lily says, smiling. “He always checks in.”

Lily’s admiration of Weinstein was returned when he decided to run the Boston Marathon in her honor as part of the Mass General Marathon Team Fighting Kids’ Cancer...One Step at a Time, which has raised nearly $9 million for childhood cancer care and research since 1998. As the team’s founder and captain, Weinstein chooses one of his patients to run for each year (2014 will be his 24th Boston Marathon). When he met Lily, he said there was no doubt in his mind who his patient partner would be for the 2012 Boston Marathon.

“Lily got to my heart very quickly. I saw her as such an inspiration that I wanted to run in her honor, and I knew that seeing Lily’s bright smile when she came to clinic would be something I would carry with me as I ran the 26.2 miles,” Weinstein says.

Lily and her family were honored to partner with Weinstein for the marathon, help with fundraising and participate in the annual Mass General Marathon Team pasta dinner where Lily and other patient partners were presented with medals of their own. As part of the program, the Waldecks say their experience was not only emotional, but solidified the connection between Lily and Weinstein.

Crossing the finish line

Weinstein and Lily pose at the Mass General Marathon Team Mural.

Having completed her chemotherapy, Lily says she likes "looking forward.” The blonde-haired, outgoing second-grader rambles about space and the solar system while her parents marvel at how much she’s grown – “she’s making up for two years of no growth,” Kathleen says. Lily and her parents have also continued to cheer on Weinstein at Mile 20, where Lily has given him more of her leaping bear hugs.

Although her visits are on a follow up basis now, Lily’s presence is still felt in the clinic. In Weinstein’s office, which overflows with a collection of marathon paraphernalia, a silver picture frame etched with the word “believe” holds a photo of him and Lily at the team's Mile 20 cheering area. The frame reflects a lesson Lily learned about how she persevered during her fight with cancer:

“Believe that you’re gonna get through it,” Lily says. “And even if you’re not strong now, be strong now.”




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