New pain for cancer baby and family

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Both Saoirse Fitzgerald and her mother, Kezia, have battled cancer this year.A family faces new setbacks as both mom, baby have struggled with cancerFamily relies on food stamps after dad loses job and health insuranceMedical events are leading cause of bankruptcies, 2009 study says

(CNN) -- 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.

Saoirse Fitzgerald has spent the last six months of her life getting chemotherapy and staying in hospitals.

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."

The family's blog

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.

Mike Fitzgerald and his daughter play in the hospital in August. "I should be the one going through this, not her," he says.

"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."

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'Living Fossils' Just A Branch On Cycad Family Tree

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Enlarge Maggie Starbard/NPR

A cycad stands at the United States Botanic Garden in Washington, D.C., on Oct. 19. The 300 "modern" cycad species burst onto the scene about 12 million years ago, though the lineage of cycads extends back 300 million years.

Maggie Starbard/NPR

A cycad stands at the United States Botanic Garden in Washington, D.C., on Oct. 19. The 300 "modern" cycad species burst onto the scene about 12 million years ago, though the lineage of cycads extends back 300 million years.

Although dinosaurs died out 65 million years ago, there are still thought to be a few species left over from those days. Plants called cycads are among these rare "living fossils" — they have remained pretty much unchanged for more than 300 million years, but a study in Science magazine suggests that glamorous title may not be deserved.

Enlarge Maggie Starbard/NPR

Sarah Mathews, a botanist at Harvard University, says a changing climate on the planet about 12 million years ago led to a burst of new plant species, including cacti and agave.

Maggie Starbard/NPR

Sarah Mathews, a botanist at Harvard University, says a changing climate on the planet about 12 million years ago led to a burst of new plant species, including cacti and agave.

There's no time machine in Washington, D.C., but Harvard botanist Sarah Mathews leads me to what's arguably the next best thing — a room made of glass in the U.S. Botanic Garden, just downhill from the U.S. Capitol.

The sign says "The Garden Primeval — The First Land Plants."

Right away we see something that looks like a fern growing out of the top of a palm trunk. But it's not a fern or a palm. In fact, it's more closely related to a pine tree. Cycads produce seeds but not flowers. They evolved along with dinosaurs, which presumably munched them for lunch. So they've earned the title "living fossil."

But "that assumption began to break down as we began sequencing DNA," Mathews says.

What's the difference between old, older and very old, and very, very old? I mean, they're all still very old.

- Bart Schutzman, editor of the Cycad Society's journal

She and her colleagues — notably Nathalie Nagalingum from the Royal Botanic Gardens in Sydney — have used that DNA to reconstruct the "family tree" of cycads. They find that the "trunk" of the family tree may reach back 300 million years, but the "branches," today's 300 species, actually burst onto the scene about 12 million years ago.

"And then it looks like around the world on multiple continents, cycads became more species-rich," Mathews says.

What caused that sudden burst of new species?

"That's the really fun puzzle, of course," she says.

Enlarge Maggie Starbard/NPR

A giant dioon, seen at the United States Botanic Garden, is part of the cycad family and can be found growing in Mexico and Central America.

Maggie Starbard/NPR

A giant dioon, seen at the United States Botanic Garden, is part of the cycad family and can be found growing in Mexico and Central America.

It's probably not a coincidence that other plants also put forth a burst of new species around that time, including cacti, ice plants and agave. Mathews suspects climate change played a role.

"There was drying out and cooling going on, globally," she says.

This research is part of a broader effort to understand how all plants — most notably flowering plants — evolved. That story is gradually taking shape as scientists study more and more of the DNA from plants.

Of course, you might argue that this research has some broader philosophical repercussions as well. By finding that these species of cycads are just 12 million years old — and so were not survivors from the days of the dinosaurs — has Mathew's team demoted these species from their lofty status as living fossils?

Enlarge Maggie Starbard/NPR

A natal grass cycad grows in the greenhouse at the United States Botanic Garden.

Maggie Starbard/NPR

A natal grass cycad grows in the greenhouse at the United States Botanic Garden.

She says no.

"I think that we've actually found some interesting patterns for people who didn't think much about cycads before," she says.

What about people who think a lot about cycads? Bart Schutzman edits the Cycad Society's journal (global circulation: 500 copies). He's attracted to these plants because he feels a primal bond with this ancient species. And he says the news does not rock his world. Today's cycads still predate human species, and by a lot.

"What's the difference between old, older and very old, and very, very old? I mean, they're all still very old," he says with a chuckle.

As for the "living fossil" moniker?

"It won't stop people from glamorizing the cycads as the living fossils because their lineage extends so far back," Schutzman says.

So here's a little good news from Washington: A walk through the "Garden Primeval" greenhouse still offers a reasonable glimpse of foliage from the days of the dinosaurs, though the species themselves don't have quite the same bragging rights.

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HEALTH MANAGEMEN.. Cancer testing lags in Latinos with family history

NEW YORK | Thu Sep 15, 2011 5:14pm EDT
NEW YORK (Reuters Health) - Latinos were less likely than whites to get screened for colon cancer in a new study from California -- and much less likely when both groups had a family history of the disease.
However, results from a telephone survey didn't show an ethnic difference in which women had recently been screened for breast cancer, whether or not it was in their families.
Researchers didn't know why each person in the study had or hadn't gotten screened. But they proposed a few reasons why Latinos might not get their regular colon cancer check-ups, including communication problems with doctors and fear and anxiety about being screened.
"It seems very plausible that this is not happening for Latinos because of access barriers and language barriers," said Heather Orom, who studies racial disparities in cancer at the University at Buffalo and wasn't involved in the new study.
In addition, she added, "we don't know if those messages about family history and risk are resonating culturally with Latinos."
The data came from a 2005 telephone survey of more than 30,000 adults under 65 in California. They were asked how recently they had been screened for breast cancer (with mammography) and colon cancer (with a stool test, sigmoidoscopy or colonoscopy), as well as whether anyone in their family had ever had those cancers -- which would put them at higher risk.
The researchers, led by Ninez Ponce of the University of California, Los Angeles, used U.S. Preventive Services Task Force guidelines at the time to determine if participants were getting screened according to recommendations.
That meant mammograms every two years for women starting at age 40, and colon cancer screening every one, five or ten years, depending on the method, for men and women 50 and older. (USPSTF guidelines now say breast cancer screening can be delayed until age 50 for average-risk women.)
In total, about 76 percent of women with no family history of breast cancer and 84 percent with a family history had been screened for the disease within the recommended window. Latinas with or without a family history of breast cancer were just as likely as white women to report recent screening.
But for colon cancer, it was a different story. Fifty-one percent of all adults with no family history were screened according to guidelines, versus 71 percent who had a relative with colon cancer.
Compared with average-risk whites, Latinos with no family history of colon cancer were 26 percent less likely to say they had been screened. And those with a family history were 72 percent less likely than whites with a family history to get recommended screening.
In the U.S., Hispanics are no more likely than whites to be diagnosed with colon cancer or to die from it. The disease kills about 50,000 people each year nationwide.
"Our troubling finding was that knowledge of their family history of (colon cancer) did not close the Latino-white gap in (colon cancer) screening, but actually widened the disparity," the researchers report in Cancer.
That points to a need for better communication between doctors and Latin patients about family history and cancer risk, they say.
While language and cultural barriers may be keeping screening messages from getting across, Ponce and colleagues explain that some people may also postpone screening because of fear or denial, or underestimate their risk of cancer, even when a family member has been ill.
"There's a gap among people who have a known family history. We believe there's also a gap due to lack of knowledge about family history," Orom added in an interview with Reuters Health.
She said more research is needed to determine what's really behind lower rates of screening in Latinos before any changes can be made to address the disparity.

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