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Personal connection is everything, especially when it comes to keeping up the spirits of the children and their families, bolstering the quality of life during treatment, and keeping parents informed about new developments for potential cures as well as procedures that may make a child more comfortable if a cure is not in sight.
When the cancer journey does have a happy ending, Dr. Jill Ginsberg points out, there are important roads in life for those children and their families to follow to ensure the destination will be a long, successful one. The director of the Cancer Survivorship Program at the Children’s Hospital of Philadelphia, Ginsberg is a leader in her field, researching the late effects of childhood cancer treatment.
She not only guides the young survivors and their families about preserving their general health but also keeps tabs on scientific and medical breakthroughs making the children’s fertility preservation possible.
“The remarkable thing we notice about the pediatric patients and their families is that they are often not challenging to work with,” states Ginsberg. “When I see them in the survivorship phase, they understand what they’ve been through and are so grateful for the care they’ve received that it is very easy to continue caring for them.”
Adds the physician: “There are occasions where I do feel sad about how some patients struggle with the lingering effects from their therapy. Even with that, we are thrilled to see increasing numbers of survivors, and hope there will be fewer struggles they will have to face” as medicine continues evolving.
Ginsberg and her colleagues at CHOP focus on check-up appointments with young cancer survivors and their families to educate them about the specific treatments the child received so the young patients can continue to take care of themselves as they grow older as well as track any late effects of their cancer treatment.
“One of the main purposes of our survivorship program is to help the survivor feel that they are the keeper of their medical history,” explains Ginsberg. “When kids are younger, the parents have ownership of that information. Part of our job, therefore, is to help out with the transfer of that information between parents and patients as they grow into their teen and young adult years so they can take care of themselves moving forward.”
Raquel Baskin, 11, of Lafayette Hill, is a proud member of the CHOP Cancer Survivorship Program. While she and her mother, Susan, say they appreciate the convenience of the program’s follow-up visit scheduling, they both say they will never forget how different members of the CHOP faculty stood by the family through every step of Raquel’s recovery from bone marrow cancer and leukemia.
“The doctors and the other people are and were really nice, and they always did their best for me, and right away,” says Raquel, who has now been in remission for five years. “I loved having a music teacher and an art teacher” — who were sent by her public school through sprecial arrangements with the survivorship program — “and I loved the playroom. I liked the arts and crafts room the best.”
The program’s focus on self-reliance also paid off with this patient: “I also like how they teach us to understand our diagnosis so we can take care of ourselves better in the future and every day.”
Her mother’s effusiveness is somewhat tempered by the discussion of the family’s journey, which started when Raquel was first diagnosed in 2007. Even with a variety of health issues hanging in the balance (one of the side effects of full-body radiation was stunted growth), Baskin says she is particularly grateful for the ongoing presence of Raquel’s endocrinologist, Dr. Robin Perry, who she says treats Raquel “much like her own daughter.”
Dr. Tammy Kang, a neuro-oncologist who is also director of CHOP’s palliative care program, is impressed with the fact that child and teen patients do everything they can to not allow their illnesses stand in the way of their dreams, their social lives and their educational paths. While her patients include a mix of cancer patients and those affected by other illnesses, she is struck by their resilience even as some of them undergo very aggressive therapies.
“Children are hopeful beings,” says Kang. “They’re motivated, and even with a serious cancer diagnosis, the vast majority of them are enthusiastic, willing to participate and be actively involved in their care.”
Kang details CHOP’s interdisciplinary approach, which includes life specialists (like those who helped keep Raquel busy); social workers, nurses, and doctors who all work together to ensure a child’s life remains as normal as possible while he or she is receiving therapy and treatment.
Kang adds that the bonds doctors form with patients and their families are what allow them to keep doing their job every day, even when prognoses are not as certain or optimistic. She insists that if her job only focused on kids who get better, it would do a disservice to others because it is not possible to cure every child with cancer.
While CHOP is widely known for the implementation of various innovative cancer treatments and medical procedures, perhaps one of its most interesting innovations is its “Pediatric Patient Navigator” position, which is financed by the American Cancer Society. Susan Pultman, who has a background as a social worker and the honor of being the first pediatric navigator, has been at CHOP since 2012 and currently serves about 250 patients and their families.
It is fulfilling, she says, “to offer support to families by being an open ear, and know that there is hospital staff here to help them get through the emotional side and lower their stress level so they can focus and be with their child.”
She feels a great sense of accomplishment “when I can pinpoint that foundation that will help a family pay a mortgage, or when I can connect them with transportation to the clinic for treatment, or connect them to a social organization that will help the kids get out and feel normal.”
One of the most moving experiences for Pultman in recent memory was helping a patient within days of the end of his life fulfill a dream of owning a chihuahua. When his family’s social worker reached out to her with the request, she went on a marathon mission to connect with a woman who had a chihuahua for adoption, and got special permission from CHOP’s nursing and security to bring the dog to the child’s bedside.
It ended up being not just the last gift the child was able to receive but also a gift to his own family, which now has this special dog that was their child’s.
Other hospitals and medical offices are staffed with physicians and professionals just as committed to the physical and emotional lives of their patients. Dr. Steve Shapiro, chief of the Pediatric Department at Abington Memorial Hospital and head of Pediatric Medical Associates, with offices in Rydal and East Norriton, Pa., serves a diverse roster of chronically ill children, including some with cancer, and agrees with the CHOP professionals that the doctor’s relationship with the entire family is key to the success for a child’s recovery.
Shapiro insists that good doctors will never lose sight of effectively communicating with families and being there for them in a meaningful way.
There are, for example, situations calling for changes in which the calendar is viewed, where Shapiro may have to advise a family — as time is running out on a youngster — to have their Chanukah celebration in July.
While some doctors hope to boost morale during treatments, Shapiro’s focus is on the here and now: “I don’t so much work with children to give them motivation to fight the disease, as I am wholly there for them, ensuring them and the families that I am giving them the best care possible,” he says.
“As a cancer specialist earlier in my career, with my background being in pediatric hematology and oncology, I can vouch for this. I spent my time showing them they were getting the best care I could give them and make their lives as unrestrictive as possible. I set out to get these kids to the places they wanted to go, to arrange for their blood counts to be at a certain level so they could go to Disney World, birthday parties, school,” he says.
Indeed, most important is they their journey include the area of hope. So, what would Raquel Baskin tell other kids going through cancer? “I advise other kids to stay positive and listen to the doctors,” she says emphatically. “You will be OK.”
Based in California, Elyse Glickman writes on health, wellness and philanthropic topics. This article originally appeared in the special section of"Fighting Cancer."