Nemours researchers examine cancer's effect on siblings
Every now and then, Ali McDonough wakes from a nightmare about her brother.
There's the one where she relives the last moments of Andrew's life. He died in July 2007 in his hospital bed while Ali was holding him.
Or the one where Andrew dies from cancer, but in a different way. Or the one where she has to tell Andrew his leukemia has come back, a moment that never actually happened.
"I’m not over it and I never will be,” said Ali, now 27. "If we could have switched spots... I would have."
She is one of the estimated 5 to 8 percent of people who will experience the death of their sibling as a child. Yet these children and their health often are overlooked: A 2010 study in the Journal of Paediatrics & Child Health found that only 48 percent of 109 major pediatric hospitals in the United States and Canada provide support for siblings.
Clinical psychologists at A.I. Dupont/Nemours Hospital for Children are studying how siblings of children with cancer are affected during and after treatment, a subject that researchers say is rarely explored or talked about.
The Wilmington-based Andrew McDonough B+ (Be Positive) Foundation, which was created by Ali's parents in honor of her brother, gave Nemours $100,000 for the study. The nonprofit is currently reviewing a follow-up proposal from the hospital for additional funding.
Early research indicates that about 60 percent of these siblings can suffer from cancer-related post-traumatic stress symptoms, and for some, it can lead to long-term emotional and behavioral problems. In the Nemours study, researchers hope to determine factors that will better predict which siblings will struggle and which will be more resilient.
Since starting the study two years ago, researchers have recruited 100 families from all over the country, said Melissa Alderfer, a senior research scientist at Nemours. They hope to enroll another 100 families in the next year.
Through a survey, researchers check in with siblings, between the ages of 8 to 17, and their parents every six months during the first two years after their brother or sister's cancer diagnosis.
Alderfer said the siblings are asked if they have intrusive thoughts about cancer, if they avoid thinking or talking about cancer and if their brother's or sister's diagnosis makes them feel guilty, sad or angry.
Researchers are also looking into demographics and other factors that could predict a child's adjustment over a period of time, such as parental distress, the child-parent relationship and the kind of support they've received from extended family and their community.
Alderfer said children's emotions can range from jealousy to guilt, no matter their age.
Some teenagers go into a "you only live once mode" while others become "very mature" during this period. A young child once told Alderfer that they "understood that a part of their parents' heart for them had to go to the child with cancer."
"That still gives me goosebumps, even now," she said.
Seemingly small details can have an impact as well: Alderfer recalls talking to one child about how when his parents were at the hospital with his sick sibling, he was left at home with his older brother. They were on their own for dinner. So they had macaroni and cheese for weeks.
Maggie Anderson, of Pike Creek, was only 8 years old when her sister Molly was diagnosed with leukemia at age 5. She remembered eating a lot of casseroles and missing her parents, who were sometimes at Nemours with her sister for days at a time.
It took her awhile to grasp what a cancer diagnosis meant and what her sister would go through. At first, she thought Molly getting sick was her fault.
She described those years as a “blur,” mixed with memories of playing with her sister and other sick children in the hospital and those when she wasn't sure if her sister would survive.
During the two years of Molly’s treatment, Maggie said she often felt isolated.
"At the time, there were a lot of moments where I felt like I didn't connect with kids my age because I was going through so much more than what they had ever gone through," she said.
Joe McDonough, Ali's dad and president of the B+ Foundation, said his daughter felt immense guilt during the time Andrew was sick. Ali was protective of Andrew and viewed herself as his second mother.
Andrew was diagnosed with Acute myeloid leukemia in January 2007 and was in the hospital for 167 days before dying that July. Ali frequently slept at the hospital and was almost always present when decisions about Andrew's treatment were made, which neither she nor her parents regret.
The week before Andrew was diagnosed, Ali got her driver's license. McDonough, a self-described protective father, had this "grand plan" of easing her into driving.
But plans quickly changed.
Ali drove herself to school and often went grocery shopping for the family, an errand McDonough usually did himself. Despite her brother's grave condition, she maintained her grades and studied for the SATs.
"I knew that we were going to have to neglect her for that time and it made me feel horrible," he said.
This Nemours study is the first time the B+ Foundation has helped fund research for siblings of children with cancer. To McDonough, identifying ways to help siblings in these situations are "just as valuable as an injection of chemotherapy."
Families are diagnosed with cancer, not just the child, he said.
"I don't want any sibling to feel like they have to live for the other child," he said.
Both McDonough and Ali agree that losing Andrew has altered her perspective on life. The small things — such as a test grade — are no longer the end of the world. She'll be running a half marathon with the B+ foundation in the coming months, not because Ali loves to run, but because she feels that since she is healthy she should do it.
Andrew's death also made her realize she wants her future children to have the close relationship she had with her brother.
"For half my life, he played a huge role," Ali said. "He still does."
Ali will earn her Ph.D. in psychology from Widener University in May. Originally, she planned to help siblings who went through a similar experience. When she was 16, she searched for support groups but could only find ones for those who lost a spouse or a parent.
As she meets children with cancer and their families through the B+ foundation, she views many as her little brothers and sisters. While she loves celebrating the happy moments and milestones, the difficult times hit her — hard.
“I’m brought right back to where we were,” she said. “It’s a reminder to me and it’s still very real. I still feel it a lot."
Now, her focus is on psychological assessments for prisons and she spent the last year working at a residential drug and alcohol treatment center. While she sees herself one day working with these siblings in a professional capacity, Ali currently serves as a mentor to the siblings she meets through her family’s foundation.
A freshman at the University of Delaware, Maggie Anderson wrote a research paper last semester about the effect childhood cancer has on siblings. While she hasn’t been diagnosed with PTSD, she said she experiences anxiety and depression.
And if she’s in a hospital for too long, she struggles with panic attacks and vivid flashbacks to being in the hospital with Molly.
But now, a decade later, Maggie is a college student and Molly is a freshman at Charter School of Wilmington. After graduation, Maggie hopes to work with kids in a therapeutic field, maybe occupational therapy.
The sisters are both experiencing clean slates, she said, in which they’re not known as the “girl with cancer” or the “sister of the girl with cancer.”
Though that doesn’t mean life has gone back to the way it once was.
“I don’t know if my family will be normal again,” she said.
Contact Meredith Newman at (302) 324-2386 or at firstname.lastname@example.org. Follow her on Twitter at @merenewman.