Catastrophic losses

On his 10th birthday, Nicholas Jensen of Plymouth rode through Boston in a limousine with his best friend, picked out a remote-control airplane from FAO Schwarz, and graciously accepted the customary gift of clothing from his parents.

It was an exhausting excursion for even the most energetic adolescent. But rather than going home to bask in his day and eat cake, Nick was wheeled back to his room at Children's Hospital, where his family, at his bedside, sang ''Happy Birthday." Then he closed his eyes, and never woke up.

On Aug. 4, 2002, the day after his birthday, Nick lost his fight with rhabdomyosarcoma, a rare form of cancer that attacks muscles and soft tissue.

Nick had been diagnosed at age 6 and, in the four years that followed, the Jensen family was consumed by cancer. Nick's parents, Rosemary and Charlie, spent months at a time in the hospital with their son, giving up their jobs to dedicate every second to him.

After Nick died, Rosemary and Charlie returned to their home in Plymouth to face, along with the emotional strain, years of medical expenses and unpaid household bills. ''It's all still haunting us," Rosemary said.

''We had bill collector after bill collector call us," she said, remembering the years when Nick was sick. ''We'd tell them our situation and that we couldn't do anything about it."

The only thing the Jensens could do was watch their two new cars get repossessed and beg and borrow to hold on to the house. ''We'd tell them, 'You can take whatever else you want, but leave the house alone. This is where Nick needs to be,' " Rosemary said.

Every year 450 new pediatric patients enter Dana-Farber/Children's Hospital Cancer Care. Treatment often lasts two years or more, and most of the families require financial help.

Dana-Farber has two resource specialists for the pediatrics program, Joe Chabot and Stacey Gulick, who counsel families on their eligibility for federal programs and secondary insurance. They also provide minor assistance in the form of prepaid gift cards for groceries, gas, and parking. But there is not much of a support system when it comes to out-of-pocket expenses.

''There is a lot of fund-raising for cancer research and treatment, but the one thing often not realized is the financial burden on the families," Chabot said. ''In most cases, a parent has to stop working, and it's unpaid leave. All of a sudden it's hard to meet day-to-day expenses."

Because they understand the financial hardship of becoming unemployed to care for a child, Rosemary and Charlie established the Nicholas Jensen Foundation in October 2003. The foundation will help families pay a utility bill, the mortgage, baby-sitting expenses, a car payment, or purchase a much-needed appliance. The foundation's working guideline is $1,000 per month to one family.

''I'd like to help five or 10 families a month if we could, but we don't have the money," Charlie said.

The Nicholas Jensen Foundation is one of only a handful of organizations in Massachusetts -- three of which are located south of Boston -- that donate money to Dana-Farber earmarked as a supplement to personal income. But the need for what it provides far outpaces available resources.

There are few corporate sponsors and limits to what can be raised with events such as the Jensens' dinner dance held this month and the Walk of Hope on May 6, sponsored by Angel's Hope Inc., a Cape Cod nonprofit established in the memory of 3-year-old Michael Knapp, who died of cancer in 1995.

''Our fund-raiser last year was down, but family referrals were up," explained Martha Knapp, Angel's Hope founder and executive director. Over the years, Angel's Hope has helped 450 families across New England, including 50 on the South Shore and 35 on the Cape.

''There are a lot of great organizations that are trying to find a cure," Knapp said. ''I'm not trying to find a cure. I'm trying to help families survive when a child is diagnosed."

The few programs that do exist are helping people like Nestor Grullon and his wife, who for the last few years have been in and out of work in order to be with their daughter, a cancer survivor.

''It doesn't matter if you have a low or moderate income, your life changes, no matter what," Grullon said. ''You are missing time from work. You have no income coming into the house. And you lose the balance, because you are trying to save someone's life, my daughter's life."

The Jensens know that Nick had some wonderful moments while he was alive, thanks to organizations like the Weymouth Elks Dream Come True Fund that sent them to Disney World. But those moments, which should be savored, were not without worries.

''When we went to Disney, the only thing on my mind was, am I going to have a house when I get back? And where am I going to get the mortgage money?" Charlie recalled. ''Those trips were great. We really needed them. But who is going to help pay your bills?"

That's a question the Jensens hope to help answer.