Cancer does not have to be a solo journey. Every diagnosis involves doctors, nurses, family members and friends. Sometimes, support from these people can give that extra push to get you through a chemo infusion, or another radiation treatment.
We recently asked our Facebook followers about the best support they’ve received as a patient, or provided as a caregiver. Thanks to everyone for sharing their stories. Here is a sample of they had to say:
Last month, the American Cancer Society (ACS) released “Cancer Statistics, 2014,” their annual estimate of new cancers diagnoses and deaths for the year ahead. The report was heavily focused on adult malignancies—not surprisingly, given that the number of adult cancer patients in the nation is orders of magnitudes greater than that of childhood patients—but did hold a few insights into childhood cancers.
Joanne Wolfe, MD, MPH, founded the Pediatric Advanced Care Team (PACT) in 1997 to help ensure children who are living with life-threatening diseases like cancer, and their families, enjoy the best quality of life. The program, a part of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and the Department of Psychosocial Oncology and Palliative Care, and Wolfe, were featured recently in The New Yorker. We spoke with her about the benefits of pain and symptom management, and palliative care for pediatric patients.
Q. What is PACT?
A. PACT is a group of physicians, social workers, and nurse practitioners. We provide an extra layer of support to children with serious illness and their families throughout treatment, ensuring that the child’s quality of life is a top priority for families and medical teams making difficult care decisions.
We make sure we bring attention to the whole patient and family as children are undergoing treatment for their illnesses.
By Jordan Leandre
I don’t remember a lot about my treatment process – after all, I was only about 2 1/2. Here is some stuff that I do remember.
As 2013 comes to a close, we’re looking back at some of our favorite Insight posts from the last year. From inspiring patient stories to important research, here is our top 10 list:
Stem cell transplantation (sometimes called bone marrow transplants) is a treatment for certain forms of cancer, such as leukemia, lymphoma, and multiple myeloma, as well as other diseases. But before a patient can receive a transplant, stem cells must be collected from a donor (an allogeneic donation) or from the patient (an autologous transplant).
Each year, Dana-Farber patients join clinicians, staff, and the Boston Red Sox to share their stories of inspiration and their belief in the research advances at Dana-Farber during the WEEI/NESN Jimmy Fund Radio-Telethon at Fenway Park.
This year, nearly 100 patients, including Rayquan Fregeau, who used art and resources from the Betty Ann Blum and Marjorie Blum Pediatric Resource Room to cope with his diagnosis; Debbie Whitmore, a mother of five who hopes for a cure for future generations; and Jack Robinson, who compiled a joke book to help other children during their treatment, shared their experiences battling cancer. Stephen Hodi, MD, Ursula Matulonis, MD, and other clinicians discussed the research and treatment strides donors help make possible.
Watch this video of highlights from the 36-hour event, which raised more than $3.5 million to support adult and pediatric patient care and cancer research at Dana-Farber:
“Why is this coming up now?”
“It’s been 10 years. I should be over this already.”
“Why is this happening to me? All of the other survivors I know seem fine.”
These thoughts preoccupied me during the transition from high school to college. It had been 10 years since my successful bone marrow transplant for aplastic anemia and my health was excellent.
September is Childhood Cancer Awareness Month. We asked Lisa Diller, MD, chief medical officer at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, to answer these important questions.
What signs might lead a child’s pediatrician to suspect cancer?
Cancer is very diverse, and diagnosis is further complicated because many signs and symptoms—like fever, bruising and headaches—are normal in healthy children.
Jack Robinson is a special kid.
Diagnosed with bone cancer at the age of 11, he tackled treatment if not with a smile on his face, then with a joke on his lips… or more accurately, on paper. The Massachusetts resident compiled and edited a joke book called, “Make ‘em Laugh” to help himself, and other kids who were sick. It was drafted from hundreds of jokes, riddles, and drawings submitted by Robinson and other kids cared for in the Jimmy Fund Clinic and the inpatient oncology floors at Boston Children’s Hospital.
Rayquan “Ray” Fregeau’s smile lights up a room, even after five days of chemotherapy. His upbeat personality infuses his poetry, but until recently the 17-year-old patient at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center had trouble putting into words what he’s gone through since his February cancer diagnosis, especially when it came to telling friends about his experience.
Although the terms are often used interchangeably, palliative care and hospice care differ in several important ways for cancer patients – most notably, the stage of treatment at which they are given. Both types of care focus on relieving patients’ pain and discomfort, whether caused by the cancer itself or the side effects of treatment. … Read more
As the baseball world gathers at Citi Field in New York City for tonight’s All-Star Game, here’s a look back at 60 years of all-star partnership between the Boston Red Sox and the Jimmy Fund – which supports cancer research and care at Boston’s Dana-Farber Cancer Institute.
During a child’s cancer therapy and recovery process, insomnia can often be viewed as only a side effect in the scope of treatment-related symptoms.
However, there are many physical and psychological implications that develop when a child does not sleep well, says Eric Zhou, PhD, a clinical psychology fellow in Dana-Farber’s David B. Perini, Jr. Quality of Life Clinic.
Zhou, who is also a research fellow at Harvard Medical School, has spent the last year studying treatments for insomnia in adolescent and young adult cancer survivors through Dana-Farber’s Swim Across America Fellowship.
By Lori Buswell, RN
I recently returned from a three-month rotation as a nurse fellow at a comprehensive cancer center at Butaro Hospital in Rwanda, a tiny African country known as the “land of a thousand hills.” The hospital, built and operated by the Ministry of Health and Partners In Health, is located in a rural, mountainous area where most residents are farmers. Because most homes do not have running water, people fill up 5-gallon jugs at the local water spigot.
Palliative care is often misunderstood. People may associate it with end-of-life care or “giving up” – especially when facing a serious health challenge like cancer. But palliative care may not be what you think, and you shouldn’t be afraid to ask for it. Here’s a closer look at what palliative care is – and isn’t.
Dana-Farber celebrates cancer survivorship in June with Living Proof, an annual series of events that includes workshops and programs as well as a keynote reception on June 20.
The end of treatment is an important milestone for any cancer patient, but it can also be a time of anxiety. In fact, some new cancer survivors say leaving the routine of regular visits with their health care team can be downright scary. That’s why Dana-Farber and other leading cancer centers offer programs to help survivors transition from active treatment to living well beyond cancer.
Human papillomavirus, or HPV, vaccinations were originally advised only for girls. The Centers for Disease Control and Prevention (CDC) and the American College of Pediatrics now recommend that both girls and boys be vaccinated. The recommendations are well founded: HPV infection is the number one cause of oropharyngeal cancer, which occurs in the middle part of the throat and is diagnosed in about 14,000 Americans each year. Men are three times more likely than women to develop oropharyngeal cancers linked to HPV.
By Caroline Rider
For many families with children, summer is a time for vacations, outings, and fun. However, a summer vacation when your child has cancer can seem out of the question. But sometimes, a summer getaway is just what the doctor ordered.
Actress Angelina Jolie is no stranger to the headlines, but she stunned the world with her Op-Ed in The New York Times, in which she shared her very private decision to have a preventive double mastectomy after testing positive for the BRCA1 gene mutation. “I hope that other women can benefit from my experience,” wrote Jolie. … Read more