Motorcyclists to ‘roar for a cure’ of rare disease

By Ed Karvoski Jr., Contributing Writer

Marlborough – Kim Driscoll of Marlborough founded ELYSESTRONG as a legacy to her daughter Elyse, as well as to raise awareness and funds for the Castleman Disease Collaborative Network (CDCN). ELYSESTRONG will host the second annual Roar for a Cure motorcycle ride Saturday, July 23, beginning and ending at the Marlborough Moose Family Center 1129, 67 Fitchburg St. Others can join the motorcyclists afterward for lunch and family-friendly activities.

Elyse passed away at age 13 in February 2014 of Castleman disease (CD), a rare condition that causes too many cells to grow in lymph nodes. She was a seventh-grade honor student at 1Lt. Charles W. Whitcomb Middle School. Driscoll remembers her daughter as “loving life, vibrant, sociable and involved in everything.”

As a CDCN board member, Driscoll hears questions of patients and families affected by CD, which was first described by Dr. Benjamin Castleman in the 1950s.

“There is no quick answer when asked about CD,” she acknowledged. “I usually tell them that it’s a similar disease to lymphoma.”

According to the American Cancer Society website, “CD is not cancer. Instead, it is called a lymphoproliferative disorder. This means there is an abnormal overgrowth of cells of the lymph system that is similar in many ways to lymphoma. Even though CD is not officially a cancer, one form of this disease – known as multicentric Castleman disease – acts very much like lymphoma. … And like lymphoma, CD is often treated with chemotherapy or radiation therapy.”

In May 2013, Elyse experienced pains in her mouth, which the family initially thought was related to her wearing braces for two years. A mouth infection progressed to blistering on her entire body. After several doctor visits, Elyse was admitted into Boston Children’s Hospital, where she was diagnosed with CD.

After the diagnosis, Elyse underwent surgery to remove a tumor. She hemorrhaged during the surgery and had her blood volume replaced multiple times. Her condition was complicated by paraneoplastic pemphigus, an autoimmune blistering skin disease.

In July 2013, Elyse was transferred to Shriners Hospital for Children for wound care. Then she developed septic shock and was transferred to the intensive care unit at Massachusetts General Hospital. Her skin condition never improved, indicating that the tumor was still present.

Driscoll stayed at Elyse’s bedside throughout nine months of extensive treatments including chemotherapy and radiation during three hospitalizations. She decorated her daughter’s room with photos, balloons, cards, and notes from friends and family.

“I packed a suitcase and stayed with Elyse,” she shared. “Even though Elyse was very heavily medicated and couldn’t talk because she had a trach tube and a machine breathing for her, she’d still nod her head ‘yes’ or ‘no’ and occasionally even smile. She was still fighting.”

The hospitalizations began a month after the Boston Marathon bombings. The “Boston Strong” motto inspired the name for ELYSESTRONG. Also at that time, a popular song was Katy Perry’s “Roar,” Driscoll noted.

“Everybody said that Elyse was strong and the song ‘Roar’ symbolized her,” she relayed. “The loudest sound we could think of was the roar of motorcycles – and they get attention. We want everyone to know about CD.”

The self-described “Castleman Warriors” known as ELYSESTRONG are informing people about the rare disease by participating in local fundraisers including their own Roar for a Cure.

Donation for riders is $25 per person, which includes a T-shirt and lunch. Registration begins at 9:30 a.m. The ride starts at 11 a.m. Walk-ins for the smorgasbord lunch featuring pasta and meatballs are welcomed at 12:30 p.m. For more information about the fundraiser, call Kim Driscoll at 508-361-9171.

For more information about ELYSESTRONG and CD, visit elysestrong.com and cdcn.org/elysestrong.