Being told your child has cancer or, worse, that they could die from the disease is every parent’s worst nightmare.
In the United States, cancer in children is rare. In 2016, among people under age 15, about 10,380 were diagnosed and 1,250 died, according to the American Cancer Society.
Yet for families whose children do get cancer, it’s one of the most difficult challenges they will ever have to face.
For 47-year-old Rosemary Navarrete, of New Milford, Connecticut, the journey started in 2014 when her 4-year-old daughter was diagnosed with acute lymphoblastic leukemia, a cancer of the blood and bone marrow, and doctors told her treatment would last for more than two years.
“I was shocked because she was never really sick as a child. She never went to the doctor [and] I think she had one cold,” Navarrete told Fox News.
Every week for nine months her daughter endured inpatient chemotherapy followed by monthly treatments and a strict regimen of medication at home.
Between the hospital stays, doctor’s appointments and caring for her daughter at home, Navarrete said it’s been an emotional roller coaster. “It’s all adrenaline until you finally get depressed,” she said.
Cancer affects the entire family
When a child is diagnosed with cancer, it’s common for parents to deal with a host of emotions including shock, denial, fear, sadness, anger and guilt.
“Some parents feel guilty [and] they wonder if things would have turned out differently if they would have caught symptoms earlier,” Lynne Kaplan, PhD, a psychologist in the department of child and adolescent psychiatry, and behavioral sciences at the Children's Hospital of Philadelphia (CHOP), told Fox News.
Supporting a child through treatment can also be overwhelming and sometimes lead to posttraumatic stress disorder (PTSD), studies suggest.
“Oftentimes, parents talk about feeling very helpless and vulnerable,” Kaplan said.
It’s no surprise that siblings carry a heavy burden too. Not only are these children trying to understand what the diagnosis means, but they are forced to adapt to changes at school and at home, and receive less time and attention from their parents, while they continue to worry about their siblings.
“There is not one part of their lives that is not altered,” Deborah Berk, a licensed independent clinical social worker at the Dana Farber Cancer Institute in Boston, Massachusetts, told Fox News.
Cancer carries a hefty financial burden
When 47-year-old Keith Murray’s 11-year-old son was diagnosed with Ewings Sarcoma — a rare cancer that affects between 9 and 10 per 1 million children between 10 and 19 years old — the family faced with tough financial decisions.
Their medical bills alone were $750,000, which after deductibles and co-pays through Murray’s wife’s company health insurance, the couple was left with $8,000 in medical bills.
As his son spent an increasing number of days in the hospital and underwent 14 weekly chemo treatments, Murray was forced to quit his job. The decision resulted in a 60 percent loss of family income.
According to a survey by the American Childhood Cancer Organization, more than 75 percent of families have one parent who stops working or cuts back by at least 50 percent. Twenty-four percent have out-of-pocket medical expenses between $5,000 and $10,000, while 18 percent have more than $10,000.
Because treatments are not completely covered by insurance, many families are forced to use their credit cards, savings, or ask family and friends for help. The community might also organize a fundraiser or set up a GoFundMe page.
About one-third of families turn to nonprofits for financial help, “but they’re limited, so you might get a thousand dollars here or a thousand dollars there,” Ruth Hoffman, executive director of the American Childhood Cancer Organization, told Fox News.
To help offset costs, the Murray family shut off the utilities in their home and moved in with Keith’s parents for four months. They also dipped into their retirement savings and used credit cards to meet monthly expenses, but they still carried another $2,000 in debt.
“The emotional toll that it takes from going from a diagnosis that is possibly lethal to your child, and then also having all of the financial burden that piles up on top of you, is a lot,” he said.
The Children's Hospital of Georgia, where Murray’s son was treated, coordinated financial support through two foundations, which helped with partial mortgage payments and travel expenses.
Friends contributed meals, gave the family money for bills, and even organized a concert fundraiser to help cover medical costs for Murray’s son. “The amount of money that they raised was about within 100 dollars of what we owed to the hospital. It was amazing,” Murray said.
Hoffman, whose own daughter was diagnosed with cancer, said: “You find out who your friends really are. People that you wouldn’t have expected to ever support you come out of the woodwork and the people you think will be there for you aren’t there.”
How to cope when a child has cancer
In February, Rosemary Navarrete’s daughter ended her treatments and is in remission, but will have to be followed for three more years because her cancer could relapse.
Although she joined an online support group for moms whose children have cancer, and she has received some community support, she said some people in her life either reach out, “or they just avoid you because they don’t want to feel uncomfortable.”
Although it can be challenging to make time, experts say parents must put their oxygen mask on first by eating well, exercising, and making sleep a priority. Seeking support from family and friends or those going through a similar experience can also help.
True, cancer can turn a family’s life upside down, but it can change their perspective on life in positive ways too. “A lot of people tell us that this has brought their family together,” Kaplan said.
When it comes to supporting other children, parents should try to make as few changes as possible in their lives but keep the lines of communication open that life will change. “Research really shows that the more you support their siblings, the less they feel alone [and] the better they’re going to do,” Berk said.
Although cancer can seem insurmountable, especially for families whose children are newly diagnosed, experts say they eventually adjust. “We try to encourage them to take it one day at a time,” Kaplan said.