Rare cancer drives family to work, and pray

Rare cancer drives family to work, and pray [size=9:62bb5622b9]By Amanda McGregor / Staff Writer Wednesday, January 28, 2004

It is a parent's worst fear.

When Isabelle Dodd was only 19 months old, she was diagnosed with neuroblastoma, a rare pediatric cancer of the sympathetic nervous system. After extensive and aggressive treatment that included the removal of the large neuroblastoma tumor from Isabelle's abdomen, five weeks of in-patient chemotherapy, local and whole-body radiation, and a stem cell transplant, she thankfully went into remission.


Today, Isabelle is an energetic, playful and beautiful 4-year-old. But for
Denyse and Michael Dodd, the fight is not over. Neuroblastoma often relapses, and with no regimen of treatment for relapse, it is one of the most lethal of all childhood cancers. The Dodds are thankful for Isabelle's remission, but anxiously hope each day that she remains healthy.

We live in fear," said Denyse Dodd, tears creeping into her eyes as she stood in the kitchen of her South Street home on Friday morning. Isabelle frolicked in a pink tutu in the background, her brown curls bouncing around her face, as she asked her mom to pour her some juice.

"I pray. I pray every day that Isabelle and all the kids we've met along the way stay healthy," said her mother.

What most deeply struck the Dodds during Isabelle's illness were the other children with neuroblastoma and their families, among them those whose children did not survive the disease.


The Dodds have turned their experience, their concern and their grieving for the lost children into action. They have established Friends for Life, an organization to raise money for the Jimmy Fund that would endow a full-time research position devoted to finding a cure for neuroblastoma at the Dana-Farber Cancer Institute.

"Funding [for research] is all based on numbers, and of the 12,000
children that get diagnosed with cancer each year, only 600 have
neuroblastoma," said Denyse Dodd. "From a parent's perspective, that
obviously doesn't make sense for us. ... And what we're doing is
advocating for those who can't, since the disease usually affects children under the age of 2."

The Dodds set a goal to raise $1 million over five years, and nearly two
years into its inception, Friends for Life has already raised $500,000
through the hard work of the Dodds and their many friends and supporters.

"The endowment at the Jimmy Fund will make the money available to hire
a researcher in perpetuity," said Denyse Dodd, "and Dana-Farber is well-
positioned to make this discovery" to cure neuroblastoma.

The appropriately named Friends for Life has drawn much of its strength
and momentum from the many people and local businesses who have stood in support of the Dodds, who have lived in Needham for seven years.

"What touches us so much is the tremendous support people have given us," said Denyse Dodd. The Dodds are moved by the support they receive, but the relationship is clearly reciprocal, as their supporters receive much inspiration from the family.

"I think they are absolutely amazing people," said Gabrielle Gelinas,
a K-1 teacher at Newman Elementary School who had Isabelle's brother,
Oliver, in her class at the time of Isabelle's diagnosis. "To have gone
through what they've been through, and to have come out of it with a
purpose and a way to make a difference, concretely, is
incredible."

Nearly choking up, she continued, "You can't imagine how you would even deal with [their situation], and that you could handle it and be
so graceful and positive about it all."

During Isabelle's long months of treatment, Oliver's teachers at Newman put together a schedule for families to cook near-gourmet meals twice a week for the Dodds that were delivered to their house.

Gifts for the children, as well as meals placed in a cooler in the garage, were delivered to the Dodds' home, when Isabelle's post-chemotherapy treatment required a six-month isolation period when no one other than the four family members could enter the house. Needham families and friends helped care for Oliver when Denyse and Michael had to spend countless hours at the hospital during Isabelle's treatment, and many people donated blood when Isabelle needed transfusions.

"All these things went above and beyond my expectations," said a grateful Denyse Dodd. "The community has been by our side in sickness and in health."

Isabelle's brother, 9-year-old magician extraordinaire Oliver, performed a few of his card tricks on Friday morning as the house bustled with some of the Dodds' "friends for life" who are involved in supporting the cause. Oliver and many of his friends and other young counterparts have also taken up the charge of raising money for Jimmy Fund events to get involved in eradicating the disease that has now touched Needham.

"This is also teaching the children about the things that are happening in life around them and how they can contribute," said Jodi Block, who has become friends with the Dodds through Friends for Life and is a coordinator for Saturday's Dance for Jimmy at the VFW. "It is a hard and important lesson to teach young children that they can make a difference in this world. My kids see this and they now know they can make things better by doing something. All the kids take a lot of pride and ownership in raising money" for Friends for Life.

Upon meeting the Dodd family, one would not assume they have lived through such a harrowing ordeal. They appear to be a strong family unit of support, love and compassion, and a family whose strength and selflessness fuels them each day to accomplish the goal of Friends for Life.

"They are such inspirations, and they have found such therapeutic and productive ways to handle the grief," said Glens Colman, a Friends for Life volunteer who used to teach at Newman and whose son is friends with Oliver. "I just smile to see that bundle of energy [Isabelle] and to think about how sick she was at one point."

Michael Dodd, who is a psychologist, is writing a children's book along with Oliver, from Oliver's perspective, of what it is like to have a sibling with cancer.

"It's difficult when you have one sick child who requires so much of your attention, and you don't want to leave the other one out," said Denyse Dodd. "It just breaks your heart."

Denyse Dodd's employer, Computer Associates in Framingham, allowed Denyse to begin working from home since Isabelle's illness, and also supported Denyse when she rode her bike for Friends for Life in the Pan Mass Challenge.

"I was in the hospital constantly during Isabelle's treatment, but I needed
my job because I needed this insurance," said Denyse Dodd.

From Jimmy Fund walks, to the Pan Mass Challenge, to the Boston Athletic Association's half-marathon, Friends for Life teams have been raising money with fervor and are determined to continue to do so until the goal is met.

All of the money raised goes directly to the Jimmy Fund's Friends for Life fund, said Denyse Dodd.

"We will make it before five years," she said. "I'm hoping, but I'm pretty sure. We will do it.

For more information or to make a donation to Friends for Life,
visit www.myFRIENDSforLIFE.com, or contact Denyse Dodd at 617-872-6020 or email her at denysed@myfriendsforlife.com.


Amanda McGregor can be reached at amcgregor@cnc.com.
Published in the Needham Times January 29th , 2004