By Amber Smith

The holidays‚ like no other time of year‚ bring the family focus to children. But‚ when cancer is in the family‚ that focus is often lost—replaced by uncertainty‚ sadness‚ and‚ perhaps‚ grief. But communicating openly with children in a way that is appropriate for their ages‚ and being flexible around traditions and feelings can help everyone survive—and maybe even find solace.

“Children often help with the holiday to give it a focus for adults‚” says Laura Harting‚ CSW‚ child and adolescent counselor at Hospice of Central New York‚ Syracuse. Harting adds that depending on their ages‚ children should be part of the planning whether they are dealing with a sibling or parent who is ill‚ hospitalized‚ or who has recently died. For those parents with young children‚ the question may be what the parent wants most.

Will you still put up a tree? Will you still hang stockings? People get through the holidays with cancer in their families‚ or having recently claimed a family member‚ and so can you. And‚ while the first year is particularly difficult‚ the presence of children may help.

The Spencers
Several weeks after Michael Spencer’s wife‚ Susan‚ died of cervical cancer in September 1999‚ he faced Thanksgiving alone with their two sons‚ Collin and Ryan.

“I wasn’t very thankful‚ that’s for sure‚” Michael Spencer concedes. At the family gathering that year‚ the tears flowed freely. “That wasn’t a bad thing‚” he says now. “It was probably a necessary thing.”

Spencer and his two sons decided to change the venue for the holidays.

“I really felt strongly that we needed to do something different‚” says Spencer‚ of Camillus‚ New York. “In each case we went someplace that we typically didn’t go. It was really for me. I couldn’t do it. I couldn’t do the typical holiday
festivities.”They celebrated their first Christmas among palm trees at Susan’s brother’s home in Florida.

Ryan Spencer‚ now 24‚ says that was a good decision. “I was still pretty upset‚” he says. “I didn’t really want to open my presents. I just toughed it out‚ I guess. I cried for a bit and then kept going.”

Harting says keeping communication open is critical. “You really want to say‚ ‘This is going to be our first Christmas or our first Thanksgiving without Mom here. We really need to talk about what we want to do.’” She says many hospice programs throughout the nation hold special meetings during the holiday season to help families cope.

Susan Spencer was diagnosed with cervical cancer when her two sons were in high school. “We kind of presented it with kind of a hopeful message‚” Spencer recalls‚ “that your mother has cancer but we think that they got it all.”

When it recurred four years later‚ Collin had just started college; Ryan was finishing high school. Sheila Lemke‚ MD‚ Upstate Medical University‚ Syracuse‚ New York‚ says some families function best if the holidays carry on without disruption. Others prefer changing everything.

Children who are older than 5 or 6 may find comfort in continuity‚ she says‚ but younger children aren’t likely to know if they celebrate Christmas on Dec. 25 or two weeks later. The thing to remember about children is they’re resilient.

The Hills
Lisa Hill couldn’t bring herself to cook the traditional Thanksgiving spread for her family in 1996‚ two months after her son Trevor died at age 5 from a brainstem glioma. So that year‚ the family‚ including Trevor’s siblings ages 6‚ 3‚ and 1‚ started eating out.

“It was a good thing to do‚” she says. “The kids liked it. My husband liked it. And I think Trevor would have liked it.” They now have a new Thanksgiving tradition.

Terri Ades‚ RN‚ director of quality–of–life strategies for the American Cancer Society and contributor to the book Informed Decisions: The Complete Book of Cancer Diagnosis‚ Treatment and Recovery‚ says the holidays are still a time to be joyful‚ despite looming illness. “There are reasons to celebrate. The focus should be on the family.”

When Trevor was diagnosed at age 4‚ Hill was concerned for him‚ and also for his older sister‚ Brooke‚ who was 5.

Hill came home from the hospital that first evening and lay in bed with Brooke. “I explained to her that we had to take him to the hospital‚ that he had cancer‚ and that he was very ill‚” Hill says. She assured her daughter that mom and dad and the doctors were doing everything they could to help Trevor‚ that what he had wasn’t contagious‚ and that he didn’t do anything to make himself sick. “I was very straightforward and honest.”

Though she’d never had reason to consult experts about communicating with children about cancer‚ Hill innately knew what to say and what not to say. She knew the little girl was liable to be fearful if she didn’t tell her what was going on—one of the tenets hospice and cancer experts follow in helping children adjust to cancer in the family.

“Children are good lie detectors‚” Ades writes in Informed Decisions. She says children may believe that their mommy is spending so much time in bed because she no longer loves them‚ or is punishing them. “If they aren’t given an honest explanation‚ they will arrive at their own conclusions‚ which spring from their imaginations and immature intellects.”

Harting agrees that if children don’t have information and don’t understand what’s going on‚ they often believe they did something to cause the cancer.
Today Hill volunteers through hospice’s “Helping Hands‚ Healing Hearts” program for children ages 5 to 12. She talks other families through the difficult terrain she’s already covered: what to say to children when someone they love has cancer.

“It’s a difficult area for adults‚ and I think that’s what makes it hard for children‚” Hill says. In Informed Decisions‚ Ades encourages readers to celebrate not only holidays but family events and milestones as well.

“Celebrations are a way to recall how much you mean to one another‚ to bolster hope and restore energy‚ and to confirm that each person in the family is special‚” she writes. “You’ll see that even if one of you is ill‚ you have a future as a family.

“And memories last forever.”That first year‚ the Hills started a Christmas tradition of purchasing a family gift they can share in Trevor’s memory. Since Trevor loved ice cream‚ an ice cream maker was a gift one year. Another year‚ it was a Green Eggs and Ham game‚ based on one of Trevor’s favorite books. The gift goes beneath the tree with a “To the family‚ From Trevor” tag. “It keeps his memory alive‚” Hill says.Indeed‚ the whole family celebrates his birthday‚ including siblings he never knew. Brooke is 12 now. Then there’s Dustin‚ 9; Cameron‚ 7; Nathaniel‚ 5; Brie‚ 3; and Sayge‚ 4 months.

On Trevor’s July 11 birthday‚ the family bakes a cake‚ purchases a toy to share‚ and visits the cemetery to tie a balloon to his grave and talk about him. “The cemetery is not a sad place. It’s a place where we go to reflect‚” Hill says.Even today‚ six years after his death‚ the children are still processing. Brie‚ the 3–year–old‚ often gazes at the skies on clear days and smiles: “Trevor made it a sunny day‚ Mom.”

The Bennetts
Toni Bennett‚ of Syracuse‚ says the holiday season was a huge blur in 2001‚ while her daughter Caitlin (age 17 at the time) was hospitalized for leukemia treatment. She did manage to put up the Christmas tree‚ and the family did celebrate Caitlin’s sister Natalie’s December birthday a week–and–a–half late.Toni Bennett had been executive director of the Central New York chapter of the Leukemia & Lymphoma Society for five years‚ but she readily admits she really didn’t understand the depth and breadth of that experience until she had a child with cancer.

Caitlin survived an ovarian cancer diagnosis in February 1999 only to be diagnosed with leukemia in September 2001‚ which she has also survived.

“That first time‚ I kept it as simple as possible‚” Bennett says‚ remembering how she told her other daughters‚ who were 11‚ 13‚ and 19 at the time. She explained the cancer and its treatment. “I put a lot of things in the context of‚ ‘This is a major family inconvenience‚ but we’re going to get through this.’”
Caitlin remembers missing the family gathering at her grandmother’s house several days after Dec. 25. She opened gifts with her mom and three sisters in the hospital‚ but then they left to go to her grandmother’s house.

“It bothered me so much‚” says Caitlin. “They called me from the party. You think it would make me happy‚ but it upset me so much. They had to pass the phone around to‚ like‚ 30 people.” In the background she heard the revelry and the pizza delivery‚ and she wished she were there.“The most important thing in their life is that they feel honesty and love from you‚” Dr. Lemke says. “And sometimes honesty is you telling them‚ ‘Christmas isn’t going to be the same this year.’”

She acknowledges celebrating is particularly difficult when a family member is hospitalized‚ but it’s especially important if the family includes other children.

“What works best for a family experiencing cancer is to maintain as much normalcy as possible‚” says Ades. “That makes the family feel stable and secure‚ particularly when there are children involved.”Many younger children like keeping things as close to the same as possible. Many teens may not. If your family consists of both‚ Harting suggests you may be able to enlist the help of older children‚ asking that they help make Christmas special for the younger child.

When Grandparents Die
Rebecca Stephenson’s son Jared Parmenter was 10 years old when his grandmother‚ Ann Gourley‚ was diagnosed with breast cancer.“My mother just adored him‚ and he really adored her‚” says Stephenson‚ who lives in Boston. She told Jared about his grandmother’s health soon after she heard. “Kids are so sensitive‚ and I know that he would have realized that something was wrong‚” she says now‚ 10 years after her mother died.

“I just felt that we shouldn’t have secrets. It’s just too big to have them not included‚ and it diminishes the relationship potential between the child and the grandparent. I don’t like that kind of pretending.”Stephenson was adamant that her son have the facts. She remembers her adoptive mother dying when she was only 3 years old‚ and she was whisked away without explanation.

“What I came to realize is that young children make up stories‚” she says. In her 20s‚ she had a troubling dream that prompted her to question her father and aunt about her mother’s death. “Probably no one ever said‚ ‘This is what happened‚’ which makes a child confused.”

So Stephenson brought Jared along when she helped her mother choose a wig. When grandma was having a bad day‚ Stephenson would warn her son that she wouldn’t be getting out of bed. As it turns out‚ he was at her bedside with the rest of the family when she died in 1992‚ just before snow started falling.Talking about death

No one says conversations with children about cancer are easy‚ but they’re necessary.Dr. Lemke recently cared for a 32–year–old leukemia patient‚ a single mother of a 6–year–old son. Dr. Lemke says the woman told her child that in a certain number of months‚ she would be with God‚ watching him from upstairs.

“That’s not easy‚ but you have to be somewhat honest with them‚” Dr. Lemke advocates.

Sharing grief is OK‚ too. “Even young children should be able to see a parent cry‚ fall apart‚ but then pull themselves together and be OK‚” says Harting‚ the hospice counselor. “That’s the way they learn that tears are a part of life‚ and that you’re not going to cry and not stop. That’s an important part of learning how to handle emotion.”