A family faces new setbacks as both mom, baby have struggled with cancer
Family relies on food stamps after dad loses job and health insurance
Medical events are leading cause of bankruptcies, 2009 study says
Since Kezia Fitzgerald and her 1-year-old daughter, Saiorse, started cancer treatments this year, the disease has upended nearly every aspect of their lives.
CNNHealth.com told the family’s story in September after both mother and daughter received cancer diagnoses. A little more than a month later, the family has faced more setbacks: uncertainty over Saiorse’s health, a father’s lost job, no income and food stamps.
After Saiorse’s seventh round of chemotherapy, doctors found cancer in her bone marrow this month. An earlier test had not shown any signs of cancer.
“That was a huge blow to us,” said her dad, Mike Fitzgerald. “That’s bad news for neuroblastoma in stage 4.”
Neuroblastoma develops in young kids when their immature nerve cells turn into tumors instead of cells and fibers. Cancer is “staged” to indicate its spread; stage 4 is the furthest the disease can progress.
Saoirse went through her eighth round of chemotherapy using a potent drug last week. This drug is highly toxic since it has to reach Saiorse’s bone marrow. It’s also much stronger than the drugs her mother has taken for Hodgkin’s lymphoma.
The treatments have taken a toll on the toddler.
Both her adrenal glands have been removed because they were cancerous. Saiorse also has partial hearing loss and will not be able to have children when she’s older due to the effects of chemotherapy, her father said.
Saoirse, who is usually bubbly and curious, petting the family dog and scampering around the house, now weakly clings to her mom and dad. With three anti-nausea drugs making her sleepy, she’s quiet and listless, her parents said. Many mornings, she wakes up vomiting.
“For me to see that, it breaks my heart,” her dad said. “I want to take it all away. I should be the one going through this, not her.”
Whenever she has to take another medication, Saiorse looks deeply at her daddy.
“I watch her eyes,” Mike Fitzgerald said. “They speak so much. We’re giving her three to four different medications. I can see in her eyes – ‘Why? Please let this end.’ She’s so stressed about it.”
The doctors don’t know if Saoirse’s neuroblastoma is the type resistant to chemotherapy. In two weeks, she returns to Memorial Sloan-Kettering Cancer Center in New York to get another bone marrow biopsy to see if the samples are cancer-free.
Saoirse’s mom has had better news. After her diagnosis with stage 3 Hodgkin’s lymphoma in January, her cancer is in remission as of September.
“I don’t have 100% of my energy back, but I’m getting there,” Kezia Fitzgerald said.
The additional strain is that Saoirse’s dad lost his job at the end of October. The sole breadwinner for the family, he had taken a long leave of absence from his job at a car dealership to take care of his wife and child.
“It hasn’t been a very good couple of weeks,” Mike Fitzgerald said.
His employer allowed him to retain his health insurance during a three-month leave after Saoirse’s diagnosis in May. The dealership also extended his health insurance for two extra months when he was shuttling in and out of hospitals. Fitzgerald remains grateful and said his former employer went out of its way to accommodate his family.
“I don’t want to be out of work now,” Fitzgerald said. “I have no choice. It doesn’t do my family any good. I hope to get back to work and get a routine going.”
Although Fitzgerald lost his health insurance with the job termination, the family lives in Massachusetts and is able to receive coverage through MassHealth, the public health insurance program in the state for low- or middle-income residents.
Components of the Massachusetts health care overhaul passed in 2006 are similar to the Affordable Care Act, a nationwide health reform that will require individuals to have health insurance.
For the Fitzgeralds, MassHealth pays for COBRA, which gives workers who have lost their health benefits the right to continue coverage for a limited period. The family is responsible for deductibles and co-payments for medication and treatment.
With no income, the family now relies on food stamps. Mike Fitzgerald said he worries about making car and house payments with mounting health bills.
A 2009 study found that 62% of bankruptcies were medically related and that on average, these families had nearly $18,000 in out-of-pocket expenses. A majority of the people with these medically related bankruptcies had health insurance.
Saiorse’s mom said she considers her family pretty fortunate.
“We’re lucky that we do have good health insurance,” she said. “It makes a big difference in the cost. But at the same time, it’s too bad that a lot of people get in a situation where if they want to have a treatment, they … have to sell everything they own and they never actually can afford it.”
The family travels to New York for five to seven days for Saiorse’s intensive cancer treatments. They decided to take her to Sloan-Kettering because they thought the treatment available there would be less invasive. The treatment is not available locally.
Saoirse’s antibody treatment uses her own immune system to target and kill neuroblastoma cells. She needs a cancer-free bone marrow biopsy before beginning that treatment.
“You have to be optimistic,” Kezia Fitzgerald said. “You wouldn’t be able to get through it. We have moments where we get upset. We just have to figure it out. It’s a challenge in problem-solving. We have to do everything to help her get better.”