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What about me? Growing up with a seriously sick sibling

MARLBORO, N.J. — From Sydney Sherwood's perspective, the tumor that threatened her baby brother's life was also a parent snatcher. When she was 6, her mom and dad took her baby brother, Billy, to the doctor. They didn't come back for 32 days — the first time.

Five years later, Billy is mostly home and doing better. Right now, there's no sign of cancer. But nearly 11 years old, Sydney is still anxious and paces the house at least once a night, checking to see that everyone's where they belong. She sometimes settles at the foot of Dena and Billy Sherwood Sr.'s bed, so they'll have to wake her if they must disappear in the night for yet another in what has been a years-long series of trips to the hospital.

Serious illness seldom settles only on one child. It engulfs and changes brothers and sisters, too. Experts say if the "other" children are not handled with care, results can be as devastating as the disease that started it all.

There's no way to count all the children with life-altering diseases and injuries, much less how many siblings they have. There are ways, though, to get a sense of the magnitude. Consider, for instance, that more than 175 hospitals nationwide only treat children, and that children also are seen daily at hundreds of other hospitals.

Or you can translate disease-specific numbers into something familiar that offers clues. Kids and classrooms go together; think of the nation's average, 25-child classroom. The 13,400 new cases of cancer diagnosed in kids this year would fill 536 classrooms that size. You could fill 54 a year with children who won't survive cancer, often after years of illness; more than 200 classrooms with kids born with serious heart defects; and 20,000 classrooms with babies born prematurely. Those are just a few of the health categories that send families scrambling.

Now try to imagine how many brothers and sisters all those children have.

Jumbled households

When Sara Flash was diagnosed with non-Hodgkin lymphoma days before her 12th birthday, the lives of her two little brothers changed dramatically, too. Their grandparents moved in and mom and Sara moved out for weeks at a time. Dad needed to work and spend time at the hospital, too, so he was gone more.

The same thing happened to Jason and Wendy Magera's Helena, Mont., household when their Sarah, now 13, was diagnosed with leukemia a year ago. Mom and Sarah headed to Salt Lake City, leaving Pyper, now 3, and Heather, 9, home with dad and grandparents who moved in to help. One of the "grands" often stays in Salt Lake with Wendy and Sarah, who has been at Primary Children's Medical Center off and on; they once rented a Utah apartment for 10 months. Sarah needs a bone marrow transplant.

Allison Flash went with Sara to the children's hospital; the grandparents, retired but living elsewhere, packed up their lives and pitched in, moving in with Ed Flash and Sara's brothers: Adam in fourth grade, Daniel in kindergarten.


Children naturally see things in terms of how it affects them, says Susan Bartell, New York psychologist and author of "The Top 50 Questions Kids Ask." When a sibling ails, they worry about what will happen and if it could happen to them, too.

"Kids are very focused on fairness," says Rachelle Krolle, child life specialist at Primary Children's Medical Center. "An adult sees a child with extra medical needs; the other children may see a child who gets more time with parents. Probably the biggest thing we see is jealousy, feeling left out."

Sick children often receive gifts to cheer them up; siblings can feel left out there, too. Their lives are heavily impacted, though they may not recognize the physical suffering of the child who's sick. Some siblings miss activities because stressed parents can't get them there. Older kids may be asked to tend younger kids more. Or children might not be able to have friends over or go play for fear of catching something that could harm the sick child.

That's periodically the story for the children of David and Lu Simonsen of Olympia, Wash. Their youngest, Sophia, 2, has leukemia. The other five kids, ages 5 to 14, sometimes must skip activities because chemotherapy makes Sophia vulnerable. David Simonsen reminds them it's only for a few months, but says their reactions vary. One daughter wants to hang out with friends but would rather stay home than wear a face mask; his son dons one without fuss.

Plus, everywhere healthy siblings go or each time they answer the telephone, it's "'How's your brother doing?'" says Krolle. "They wish someone'd ask about them."

David Simonsen, a therapist, was struck recently by a conversation with children in the family of a gravely ill teen. Two little sisters, 8 and 10, sometimes think their older sister should die, though it's not clear they understand what that means. They want their parents back.

Other children become protective — even over-protective — of a sick sibling. Heather Magera is like that. "She's had a harder time because she is the sweetest, most giving child," Wendy Magera says. At 9, she wants to take care of everyone and anger no one. "The 3-year-old demands attention there. Sarah gets attention here. It's hard for the middle kid, trying to be strong for everybody."

Jason Magera says Heather's grandparents do special things with her, and when they visit Salt Lake, child life specialists talk to her about Sarah and answer her questions.

Other resources for the siblings may be harder to come by, depending on where one lives. Gilda's Club, for example, has chapters scattered around the country that offer support to family members of someone who has cancer. Salt Lake's Cancer Wellness House is one of many in the country offering support or discussion groups for "caregivers/family/friends." Some are more targeted to youngsters than others. But there are wide geographic gaps where there's nothing nearby for the brothers and sisters when a child is ill, or families may be hard-pressed to get the siblings into a support program given the demands made by getting the sick child to treatment.

Other groups offer activities for both the sick child and siblings in different health categories. "Camps" for kids, based on diagnosis, and their siblings have proliferated. You can find them for children with kidney or bone disease, burns and heart problems, among others. Flying Horse Farms, for example, in Columbus, Ohio, offered a sibling camp last summer related to arthritis, asthma, sickle cell anemia, hemophilia, cancer, gastrointestinal disorders, and kidney and heart diseases. Those tend to be a one-shot boost lasting a few days, and they also usually hinge on the sibling who has the illness being well enough to attend. So while they're helpful and fun, they don't help the siblings — who some refer to as "shadow children" — get through day to day.

Honest discussion

Kristine Kevorkian, a trained end-of-life expert known as a thanatologist, in Seattle, says families need to discuss what is happening with the siblings. With a child, it should be age-appropriate and as specific as possible.

"It's not, 'Grandma went to sleep and she died.' That makes sleep scary," she said. "Explain in detail. Ask children and adults to repeat it to make sure it was understood."

If you don't tell children what's happening, they will fill in blanks, and they usually get it wrong, she says.

Krolle says to be hopeful and honest, even when the news is bad. "We don't know what is going to happen, but the doctors are doing everything they can and will continue to."

Children need some control. Doctors tend to "speak around" patients who are young or old. Siblings get overlooked. It's important that youngsters get a chance to speak up, to ask, to relate. Otherwise, it can ramp up the resentment or fear or loneliness a child feels.

No matter how serious the illness is, Bartell says, do not let it be the only thing happening in the siblings' lives. Parents need to ask what's going on with them and talk about other things.

A child who feels left behind may become angry, Bartell says, and instead of viewing his brother as sick might see him as privileged. It kicks off "a crazy cycle of the parent mad at the kid for being mad at the other kid who is sick." Parents who always excuse an ill child from doing tasks like clearing the table fuel resentment. It's not good for the sick child, either.

"It's better, sick or not, if you make them do what they should if they can," Bartell said.

Being angry isn't the same as being mean or insensitive. An angry child struggles and someone needs to notice, says Bartell, who tells parents not to make well children give up everything because a sick child had to. "Acknowledge that it's hard for them and give them opportunities to do things a bit differently in other places."


Some families go to great lengths to see that the children who aren't sick get time with mom and dad. Allison Flash would stay with Sara, then race on Tuesdays to do her volunteer shift in her sons' classes, same as always.

It's a lot harder if you don't have family and friends nearby. Technologies have opened doors that didn't exist not long ago. Wendy Magera Skypes with her husband and children in Montana every other night from Sarah's hospital room.

Couples often split time between their children and, though they seldom see each other, they meet the need to be with the sick child while keeping some normalcy at home. That's what Liz and Jay Scott did after their baby daughter, Alex, was diagnosed with neuroblastoma. The Wynnewood, Penn., couple spent seven years juggling hospital and home, someone always with their young boys. Often, they ate as family in the hospital cafeteria.

Alex died when she was 8. She is well-remembered as the tiny founder of Alex's Lemonade Stand. She raised money for childhood cancer research, and the tradition continues through a foundation by that name.

Krolle knows families that "assign people — an uncle, aunt, friend, etc. — specifically to pay attention to the siblings."

No two families cope the same. When Anne Hamming's son Lee was fighting an autoimmune disease and needed a bone marrow transplant at age 4, Hamming, who was divorced, sent daughter Katie, 7, to live with grandparents an hour from their Grand Rapids, Mich., home and 400 miles from the hospital. It was the only solution she had. They'd been told Lee would be in or near the hospital for at least six months. The separation lasted 15 months, though they visited. They attended her 8th birthday party by Skype.

Extended family doted on Katie to the point Hamming worried she wouldn't want to come home: "She actually got a little spoiled." Hamming, who wrote "Saving Lee, Finding Grace," worried it would be hard to bring the two kids back together. It was. Post-illness, they were three greatly changed people who needed new ways to do things.

Lee, 9, is still catching up with peers. Katie, 11, is adapting to a brother who is more rough-and-tumble than she is used to.

Offering help

Outsiders and sometimes even those close to a family struggle with how best to provide the help they yearn to offer. The families themselves are equally befuddled on how to ask for what they need. Kevorkian suggests parents ask someone to be their voice and round up the troops as needed. If you want to help, offer to do specific tasks.

Teachers and others who interact with siblings can be very useful, providing ears and eyes in school to be sure that a sibling isn't lost when a child ails. Grief counseling can help, Kevorkian said. Dreams and goals might have to be revised.

One of the best helps is not overstepping, families who've gone through crisis say. Don't, for example, assume that parents have had the same conversations you'd have with your kids. The Flash family has an online page for updates and support. One friend posted, "I know you'll survive this." That was how Sara learned she might die. The family had been focusing on treatment.

"It is scary enough to go through cancer treatment without having to fear dying at age 12. I never, ever lie to my children," said Allison Flash. "But I believe there's a line between a responsible and irresponsible amount of information."

If communication is open, patients and siblings get support. If they can talk about love and fears and what they're going through, Kevorkian says families do OK. "This is the launching pad for how the healthy children end up coping with loss, probably for the rest of their lives."

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