Friday, February 12, 2016

When Harry met Howard

MOTIVATED MENTORS: Weinstein with Harry

Harry Burns, 5, walked into the Pediatric Hematology/Oncology Unit Jan. 27 with a secret. The youngster, clad in a dress shirt and pink bowtie, carried a green gift bag for his running mate, Howard Weinstein, MD, chief of Pediatric Hematology/Oncology.

In the bag was a blue canvas, painted by Harry with the help of his mother, Elizabeth, and brothers, Sammy and Benjamin, with his footprints in yellow and a poem of thanks:

Roses are red
Violets are blue
Thank you for honoring me
by running 26.2
Love, Harry

 

Through the 2016 Boston Marathon “Fighting Kids Cancer ... One Step at a Time” Patient Partner Program, MGH runners are connected with pediatric patients undergoing treatment or those in remission. Harry and Weinstein were paired to provide continuous motivation – Harry through complicated medical treatments and Weinstein from Hopkinton to Boston.

Due to injury, Weinstein was unable to run last year – what would have been his 25th consecutive Boston Marathon – so on April 18, he will run to complete that monumental milestone, also his 19th as captain of the pediatric cancer care team. The team has raised $11 million since it wasestablished in 1998, with Weinstein raising $1.2 million over the years.

“Each year, I find strength, inspiration and courage in my patients like Harry,” says Weinstein.“There is no more meaningful experience than honoring my patients and all pediatric oncology patients while raising funds to support our program.” During their special trip to Yawkey 8B, the shy child initially hugged mom for encouragement, but soon warmed up with a hug and smile for Weinstein.

In April 2015, Harry was diagnosed with acute lymphoblastic leukemia, commonly known as ALL, the most common type of cancer diagnosed in children. Leukemia begins in the bone marrow and interferes with normal blood cell production. The cancer is 10 to 20 times more prevalent in individuals with Down syndrome, like Harry, than those without the genetic condition. However, because leukemia is quite rare, less than 1 percent of those with Down syndrome will develop the cancer.

Elizabeth and her husband, Bryan, brought Harry to MassGeneral Hospital for Children (MGHfC) to receive chemotherapy treatment, which will require weekly visits for the next three years. Throughout his intensive treatment schedule, Harry has received procedural support aimed at reducing anxiety, while his siblings worked closely with Child Life specialists Heather Peach, MS, CCLS, and Caroline Armington, MS, CCLS, to understand and cope with Harry’s illness.

“The team, particularly Dr. Weinstein and Mary Jo Gonzales, CPNP, have been incredibly important in Harry’s treatment. Karen Darocha, RN, has been like his second mom in the clinic furthering our successful visits,” says Elizabeth. “With the Patient Partner Program, they’ve found a special and unique way to extend Harry’s connection with MGHfC beyond the hospital’s walls. While he won’t be physically there on the course, we wanted to show Dr. Weinstein that our family is with him every step.”

For more information about this year’s team, visit www.runformgh.org. 

This is the first in a series of stories that MGH Hotline will publish in advance of the 2016 marathon featuring the “Fighting Kids Cancer ... One Step at a Time” and the “Ready When Seconds Count” team, which supports emergency preparedness and disaster training. In addition, 19 individuals will run and fundraise for the Miles for Mass General program, which supports hospital programs that are close to their hearts – including cystic fibrosis, pediatric palliative care, the MGH Cancer Center, the Lurie Center for Autism and Huntington’s disease research at the MassGeneral Institute for Neurodegenerative Disease. 



Read more articles from the 02/12/16 Hotline issue.

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