JIMMY FUND - Key Persons
It was nearly 10 p.m. on a Friday, and Bob Mancini knew he had no business being out so late. Weakened from chronic graft-versus-host disease (GVHD), a complication from his blood stem cell transplant, he leaned on a railing for support, his eyes fixed on the doors of the international flight arrival area at Boston's Logan Airport.
The plane had originally been expected to land that afternoon, and now it was taking more than an hour for his guests to get through customs. Still Mancini waited, a smile on his face.
Since 1953, generations of owners and players have participated in making the Red Sox/Jimmy Fund partnership the longest and most successful relationship between a team and a charity in the history of professional sports.
Life was full of uncertainty for 27-year-old Christina Crespi as she battled what seemed to be a never-ending, unknown illness. As extreme fatigue and weakness persisted, and her independence dwindled, she started to feel as if she was losing a grip on her life. Finally, after a year and a half of doctor's appointments, Christina finally got her answer: She had colon cancer. While this news would be a shock to most, Christina immediately felt a weight lifted off her shoulders.
John Cain's sole focus was always work. Even when he began experiencing crippling pain out of nowhere in 2003, he remained focused on his computer software services company, not accepting that things were progressively getting worse. After almost a year, John finally went to see his doctor.
The visit revealed that his pain was a sign of something more serious than expected: John had stage III colorectal cancer.
"It was a shock, just an absolute shock. I was numb," he said. "Everything just runs through your mind: your wife, your family, your children, your life."
John's doctor recommended immediate surgery to remove his tumor. Worried about making such a drastic decision, John sought a second opinion at Dana-Farber Cancer Institute.
After a thorough examination, Dana-Farber doctors concluded it was too early to operate and that John would benefit from radiation therapy to shrink the tumor and prepare him for a properly timed surgery. Thanks to extensive radiation, the tumor size reduced by 50 percent.
"It was a blessing for me to have had that second opinion and to have had the opportunity to meet some wonderful people at Dana-Farber," John said. "It was like a family. Everyone was thinking positively and giving us candor, but encouragement."
The encouragement from John's team continued, especially when he was diagnosed with stage IV lymphoma four years ago. While no one knew the cause of this secondary cancer, he and his care team were determined to conquer it.
"I was scheduled to have an eight-week chemotherapy cycle, and in five weeks it was gone," John said. "I am in my fourth year of remission now."
Influenced by the positive experience he had at Dana-Farber and the constant support of his family and friends, John was inspired to give back to his community and began spending time teaching technology to youth and senior citizens.
"If I can do something for someone every day, that's what I am going to do," he said. "And that was brought about because of the kindness that I received from my neighbors, my wife, my family, and Dana-Farber."
Now John is focused on what matters most - spending time with his wife, Kathleen, their adult children and grandchildren, and growing the impact of his technology education program in his home city of Quincy, Mass.
"I am having fun and it is all a result of my treatment from Dana-Farber," said John. "I am grateful."
Karen Lee Sobol is an artist, author, and advocate for research and education in Waldenström's macroglobulinemia.
At 15, Kayla Brown was a normal teenager with normal priorities: friends, high school, and extra-curricular activities, especially soccer. She trained year-round and never let anything get in the way of her athletic performance. So when she started to spend more time on the sidelines recovering from leg pain than playing on the field, her family and friends knew something was off.
After weeks of increasing discomfort, Kayla and her parents visited an orthopedic surgeon, who ultimately revealed the root of her pain: a cancerous tumor. Kayla's doctor referred her to Dana-Farber Cancer Institute, where she received treatment in Dana-Farber's Jimmy Fund Clinic. Though the road was tough, Kayla was constantly amazed by the compassion of her care team.
Lindsay Roache, RN, a Dana-Farber/Boston Children's pediatric oncology nurse on 6 North, describes a similar passion for nursing that Callahan describes. Although Roache has been off treatment for ALL for 12 years, she says her diagnosis in October 1998 doesn't seem that long ago.
"I was 15 - involved with dancing, boys, and homework," Roache says. "Then my life changed overnight. Having cancer made me grow up. It was a blessing and a curse - but more of a blessing."
Roache remembers deciding at age 17 that she wanted to attend nursing school. She, too, reminisces about the influence her nurses at Dana-Farber/Boston Children's had on her career path.
"I don't know who I would be today if I didn't have cancer," Roache says. "I have seen first-hand how it can make or break a family. For me, it made everything better." Yet, Roache says even the smell of soap on 6 North can sometimes trigger memories of being a patient. "In the beginning of my training, I couldn't be in a treatment room without breaking down during patient lumbar punctures," she says. "I remembered the pain of my own treatment like it was yesterday."
I graduated from high school on time, and went on to Harvard. I don't know where my future will take me but I know I owe a large part of it to the people at Dana-Farber. The feeling you get when some treats you as Maria who happens to have cancer instead of the poor girl with cancer whose name is Maria is indescribable. My love for the people here goes beyond words. They are my family and I will never forget them.
When Michael Selsman came home from his morning jog, he noticed a lump on his chest. It was strange, because he'd never seen it before, but he figured it was probably just an irritation. A couple of weeks passed, and the lump grew larger. So Michael made an appointment with his doctor. The results were surprising - stage IV breast cancer.
"I was shocked. I'd never heard of men getting breast cancer. It took me a while to even drag myself to the doctor, because I didn't suspect that I had cancer."
It was 2011, and life was busy. Selsman and his wife Kara were working full-time, and their two teenage boys were thriving at school in their hometown of Sharon, Massachusetts. Selsman was unsure of how to tell his kids, but he decided the direct approach was best. Adam and Jacob were courageous when they heard about the diagnosis, and have been very supportive of their dad.
"The toughest thing was that I was diagnosed pretty late," he says. "If I'd been a woman, I'd have been more aware of the risk factors and family history, and that I was a candidate for breast cancer."
Selsman turned for treatment to the Male Breast Cancer Program at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC). Since only about 1,600 American men are diagnosed with breast cancer each year, it was important for
Selsman to be able to rely on DF/BWCC's strong experience with male breast cancer. His DF/BWCC team of breast cancer specialists is a leader in providing care and support for men with breast cancer - before, during, and after treatment. Selsman says DF/BWCC was an easy choice: "I spoke to family and friends who'd had experiences at Dana-Farber - everybody raved about the care," he says. "The doctors have been great. The people are so nice and helpful ... there's a lot of opportunity to consult with different people on different treatment options. I couldn't have asked for better care."
You wouldn't be able to tell just by meeting them, but high-school student Molly Callahan and Dana-Farber/Boston Children's Cancer and Blood Disorders Center nurse Lindsay Roache, RN, have a few things in common: They've survived cancer, and they're committed to helping others.
Roache's journey has come full circle from patient to caregiver, while Callahan is just embarking on her goal to become an oncology nurse.
Callahan, 16, completed her cancer treatment four years ago. But she still recalls the day she was diagnosed with acute lymphoblastic leukemia (ALL). "I remembered how leukemia was described in The Sisterhood of the Traveling Pants, where someone died - that freaked me out," she says. "But they explained to me that I would get chemo, and that ALL was treatable."
She was just starting middle school and in the midst of meeting new friends. "All I could think about was not doing sports again or having to stay back a year. I worried most about losing my hair. I was afraid I wouldn't be a normal kid again."
After her discharge from the hospital, Callahan returned when she started getting persistent fevers. It was her nurses who inspired her. "My nurses were the best thing in a horrible situation," she says.
Even though Callahan's cancer journey is now complete, its effect lives on.
"Cancer has made me a better person and become a part of who I am. I want to be a nurse in the Jimmy Fund Clinic or on 6 North (the inpatient cancer unit at Dana-Farber/Boston Children's)."
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Rebecca Byrne had waited years for a doctor to tell her: "You are pregnant." She never imagined that just a few months after she first heard those words, she would hear four more: "You have breast cancer."
Byrne still tears up when telling the story, but then smiles when her daughter, Emelia, leaps into her lap. Emelia is the happy outcome of a painful period of Byrne's life, when the joys of pending and early motherhood were shadowed by chemotherapy treatments, hair loss, radiation, and uncertainty.
When visitors first see the colorful, stringed beads that line the walls of Sophie Pettengill's bedroom, their significance beyond décor is not immediately apparent. In fact, they represent the most challenging time of the 5-year-old's young life.
The images depicted on the sparkling stones represent different milestones in Sophie's care at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, where she was treated as a toddler for acute lymphoblastic leukemia. Each blood draw (red circle), anesthesia administration (penguin), and other clinical event is recorded, along with fun moments like a trip to summer camp (flip-flops). Multiple stones denote repeat procedures.
All together, they form a diary of Sophie's cancer experience. Although her active treatment ended in July 2012, she and her family still look at the beads often as a reminder of how far she's come. They helped her get through 25 months of chemotherapy, steroids, lumbar punctures, and other regimens, and are now helping answer the questions that emerge as she matures.
As a physician who spent years treating blood cancer patients, Steven Weinreb, MD, knows the important role that stem cell transplants play in long-term survival. He never anticipated, however, he'd undergo one himself - or experience the near-lethal side effects.
First treated near his Hartford, Conn., home in 2007 for chronic lymphocytic leukemia, Weinreb came to Dana-Farber after a recurrence. On September 25, 2011, he underwent an allogeneic stem cell transplant at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC), in which, as he later wrote in a New York Times article, "...my wise, 52-year-old white blood cells were replaced by bewildered, low-functioning cells from an anonymous European donor."
Weinreb's immune system accepted the donated stem cells, but he later developed graft versus host disease, a common complication of stem cell transplants. A combination of infection, blood clots in his lungs, and a reaction to his medication led to anemia and necessitated the removal of part of his right lung.
"My surgeon in Hartford was in touch almost daily with Dr. Ted Alyea, my DF/BWCC oncologist. Bacteria that usually live benignly in healthy peoples' mouths caused the infection," says Weinreb, who took a leave of absence from his practice. "I couldn't travel to Boston for two or three months, I couldn't eat, and I lost about 30 pounds. I thought I was going to die."
Weinreb credits his wife, Cynthia Heller, their three children, his extended family, his patients, and the clinical care teams at Hartford Hospital and DF/BWCC for his recovery. Further motivation came when Frantz Berthaud, clinical administrator for DF/BWCC's Division of Hematologic Malignancies, asked Weinreb to participate in the 2013 Boston Marathon® Jimmy Fund Walk presented by Hyundai, as a member of the "Heme Team" - a fundraising group of physicians, nurses, and other staff from Hematologic Malignancies, along with patients and their families.
"The first day I was able to go outside, my wife drove me to the local college track," recalls Weinreb, a longtime runner. "She helped me walk one quarter-mile lap, and I was completely exhausted. I went right home to bed, but the next day I went back and did two laps, then three and four."
The Walk was two years to the month after his transplant, and Weinreb trekked 13.1 miles alongside his wife, Frantz, and nearly 100 other Heme Team members. Along the way, he developed an appreciation for how patients overcome obstacles.
"The lessons I've learned through this whole experience are numerous," says Weinreb. "The importance of community, of course; the importance of having the opportunity to [recover and walk]; and the importance of bringing what I've learned back to my practice. I really don't want to preach to my patients about the need to persevere in times of trouble, but I do want to set an example that things are possible."
Susan Ryan (front right), her sister (front second from left), mother (front middle), and father (top right) all battled cancer
Following appointments at another medical institution in Boston, Lynch syndrome patient Susan Ryan described herself as "scared, isolated, and alone." But after her first meeting at Dana-Farber with Matthew Yurgelun, MD, she not only found answers to questions she had been asking her entire life, but also the supportive and collaborative medical environment for which she had long been searching.
"My family had a running joke that we have good brains but bad genes," said Susan. It seemed that every member of her family was fated to get cancer-many battled more than one cancer in their lifetimes and nearly all died from the disease. Susan is a three-time cancer survivor herself. Yet, until she arrived at Dana-Farber, no doctor could explain the prevalence of cancer in her family or had thought to recommend her for genetic testing.
In 2016, more than 25 years after her first cancer diagnosis and only months after the first of two surgeries to remove tumors from her colon, Susan was referred to Dr. Yurgelun following irregular pathology on a rare skin tumor during what was supposed to be a routine basal cell removal. At this appointment, Dr. Yurgelun diagnosed Susan with Lynch syndrome and she has seen him on a six-month basis ever since
Susan finds comfort in her regular check-ups, knowing that any signs of cancer growth will be caught early and that Dr. Yurgelun will answer her questions with patience, understanding, facts, figures, and suggestions. For the first time in her life, Susan feels like a partner in her care.
At Dana-Farber's annual LYNKED IN Lynch syndrome patient conference, Susan found that she was not alone. She is now dedicated to spreading awareness about this genetic syndrome so other families will not wonder if they are "jinxed," but instead will take the proactive steps to prevent cancer, or find it in the earliest stages when treatment is most effective.
Initially overwhelmed by her diagnosis, Susan now feels empowered. She knows she is not in this fight alone.