The "new normal"
When a family member is undergoing cancer treatment, life takes on a "new normal" as routines become organized around therapy sessions, fevers, germs, and blood cell counts. "It is amazing how resilient these families are as they handle multiple challenges, such as the needs of siblings, work responsibilities, and financial concerns," says Hogen.
Giving Isabelle daily shots of a substance to strengthen her immune system was a family affair. Her big brother, Oliver, would round up the alcohol and other supplies, her mom would hold her, and her dad would deliver the shot.
Isabelle underwent a 12-hour surgery to remove the tumor, local radiation therapy, and five rounds of chemotherapy. Stem cells were taken from her body in the summer, frozen, and re-infused in the winter. She spent one month in isolation in the hospital, and five more months at home, protected from the many normal germs of childhood.
Extended family members moved in occasionally to help them out. Michael's brother and sister-in-law developed an interactive website so that information about Isabelle's journey could reach additional family members and friends. The Dodds were fortunate not to encounter financial hardship, as many families do. Michael maintained his practice as a psychologist, and Denyse continued her computer support work out of their home.
Mike Fiacco, by contrast, had just begun his own Internet business when his son, Michael Jr., was diagnosed at age 3 with a very rare form of cancer known as pleuropulmonary blastoma. The family moved from New York to stay with relatives in the Boston area so that Michael could receive treatment at Dana-Farber and Children's. Because he had to focus more attention on his son, Fiacco's company failed. "I once walked out of a board meeting because my wife called to say that our son couldn't breathe," he recalls. Their temporary living arrangements became permanent, and the Fiaccos are now struggling to avoid bankruptcy.
"I would lose everything I have just to see my boy playing T-ball. It's a different way of winning."
— Mike Fiacco
When an adult has cancer, the illness can place significant burdens on a spouse. The husband, wife, or partner may hesitate to seek support from someone who is ill. Physical changes such as fatigue, baldness, hormonal changes, or erectile dysfunction can bring stress to a partnership. If the couple is not close, or there is abuse, these problems may worsen. For those with troubles, DFCI offers many sources of support.
On the other hand, cancer may bring a couple closer. Karen Wittbold says the year between her husband Bill's diagnosis and his death was the most special one of their lives (see sidebar). "Bill was always a workaholic, so between his job and the needs of our children, we had very little time together over the years. While he was sick, we did the dating we had never done. We talked openly about finances and how I'd handle the kids when he was gone."
As the cancer patient's treatment progresses and the boat begins to travel through unknown waters, family members often fall into predictable roles. "With couples, one partner is often the cancer information junkie, while the other plays a more passive role," says Rosenblatt. This is true for parents of children with cancer as well, adds Hogen. "Most couples know their roles, and part of our work is to help them accept each other's coping styles and get help when needed."
During the treatment phase, Moczynski encourages families to find time and space to heal together. Those comfortable with prayer may discover that it offers them a common denominator, especially when each member is in a different emotional place. "When I give a blessing before a bone marrow transplant," he notes, "I inquire if any family member would like to share something. Sure enough, someone will have a poem in his pocket, or someone else will sing a hymn, and the family comes together."
When patients who come to Dana-Farber for care have no immediate relatives, Moczynski assures them there are many ways to form family. "Some patients who enter the cancer experience alone find family here," he says. "If they have been living an isolated life, the illness may offer a way to connect. One patient was thrilled when the staff remembered his birthday."
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