YAKIMA, Wash. -- Almost exactly a year ago, Cristina was sure her daughter was going to die.
Francisca, then a 12-year-old looking forward to seventh grade, seemed perfectly healthy. She'd been fatigued recently and was bruising easily, but that must've been from all the time she'd spent preparing for exams and practicing karate.
Then one June afternoon, Francisca collapsed on her kitchen floor, and fainted again a few minutes later as she reached for her father, just outside the tidy blue house he'd painted himself. Doctors at a local emergency room didn't like the look of her blood tests. The three hours it would take to drive to Seattle Children's Hospital was too long to wait -- Francisca and Cristina were sent via helicopter.
Later at Seattle Children's, the doctors told them Francisca had cancer -- specifically, acute myeloid leukemia, which starts in the bone marrow and can quickly move into the blood.
"The first thing you think of when you hear cancer is death," Cristina says, speaking Spanish at home in Sunnyside in July. "The world shuts down. ... At that moment, everything changes, and the only thing that matters is the life of your daughter."
When a child has cancer, being in the United States -- particularly in Seattle -- can improve the odds of survival. Seattle Children's Hospital treats some of the most complex cancers and blood disorders in the region, and participates in many clinical trials to treat patients with new cutting-edge therapies.
But those advantages only matter if families can access them in time to save their children, and if they can maintain access to care and services in the grueling months and years of active treatment and, if they're lucky, countless follow-up appointments, blood work and lab tests that become a regular part of life for childhood cancer survivors and their families.
Francisca turned 13 in March, just a few weeks after returning home from about six months of treatment in Seattle, in remission and feeling healthy. Her most recent scans show no sign of cancer recurrence. She's eager for her hair to grow back out, and will start eighth grade soon.
For English-speaking parents with a stable home, income, education and health insurance, almost any symptom may prompt a trip to the doctor -- and maybe many doctors if they're not satisfied with their child's care. But for the Yakima Valley's predominantly Latino migrant farmworkers, getting a child the care they need may seem as difficult as if they were still in their native countries. Any delay could affect a child's chances of survival.
"I just can't imagine the devastation of knowing that your kid needs to be in one place for a significant amount of time -- that close follow-up with the doctors, having the team right there -- and just not being able to manage that," says Dr. Tumaini Coker, research director for the Center for Diversity and Health Equity at Seattle Children's.
The Obstacles Migrant Families Face
The region's farmworkers often labor from sunrise to sunset and are paid by the day. They may move from state to state as crops are ready to harvest and may not speak more than a few words of English. Many, like Cristina and her husband, have lived in the Yakima Valley for years and have children who are U.S. citizens, but do not have legal residency themselves. U.S. News has changed their names to protect their anonymity.
If their children get sick, the jobs of farmworkers who work in the fields aren't protected under the federal Family and Medical Leave Act. Their closest family members may be in Mexico or another country, and they may live in shoddy housing near the fields. They may rely more on ERs than primary care clinics, and often don't have reliable transportation to Seattle Children's Hospital -- about 150 miles from Yakima, the area's largest city.
Listen to 12-year-old Abby describe her battle with cancer:
In October of 2018, Abby Gonzalez had a 16-hour surgery to remove her spleen and part of her stomach, to fight a desmoplastic small round cell tumor, an extremely rare form of cancer.
Those issues can make a cancer diagnosis particularly overwhelming for these families, even if their child's treatment plan is exactly the same as any other patient's.
"In addition to having a seriously ill child and having to uproot and trying to cope in a tough setting ... the combination of not speaking English and not having any money is heartbreaking," says Dianna Finnerty, who directs the Ronald McDonald House in Seattle, which houses out-of-town families for free while their kids are receiving treatment at Seattle Children's.
"It's really hard for families, no matter what situation or what kind of work they do. If you're already on the edge, it just makes it that much harder," she says.
Cristina, for example, gave up her job picking fruit to move with Francisca into the Ronald McDonald House. Her husband stayed behind to look after their two younger children and work in the expansive agricultural fields that pepper Washington's Yakima Valley and produce apples, cherries, asparagus and more than 30 other fruits and vegetables.
Without her income while Francisca was receiving treatment -- and even after receiving some money from friends and family -- Cristina filed for bankruptcy, afraid to lose the family's car and house.
"I had some debt that I was paying off and because I stopped working, there was no way to pay for it," Cristina says.
Coordination Key to Providing Treatment
Treatments for most childhood cancers are largely coordinated and standardized across hospitals in the U.S., due in part to the widespread adoption of clinical trials through a partnership called the Children's Oncology Group, which has drastically improved outcomes for children with cancer in the past few decades.
"Pediatric oncology has really developed this amazing, cooperative group approach," says Dr. Kira Bona, a pediatric oncologist and researcher at the Dana-Farber Cancer Institute, a partner of Harvard Medical School. "All the centers across the country and the world banded together and said, 'We're going to treat children on the same protocols and pool our data, and we're going to test interventions together to figure out what the right answers are.'"
And unlike for adults in most parts of the U.S., a lack of health insurance doesn't often play into care decisions for children with cancer in Washington.
Yet the two phases sandwiching active treatment -- before children are diagnosed with cancer and after they've finished onsite treatment and returned home -- are when the children of migrant farmworker families may be more likely to slip through the cracks.
"When you think of migratory farmworkers that may ... follow the crop, you're talking about traveling three to four different states in a season, perhaps, so that becomes very complex for any continuity of care," says Sylvia Partida, CEO of the National Center for Farmworker Health.
Two key players are working to bridge those gaps for child cancer patients from the Yakima Valley: the patient navigation program at Seattle Children's -- which seeks to help parents manage their child's care -- and community-based efforts led by the Yakima Valley Farm Worker's Clinic -- a safety net health center with locations across Washington and Oregon -- to bring as much care to these patients as possible.
These efforts are unrelated, but when coupled, they appear to be making the biggest difference for the Yakima Valley's cancer families, particularly those from farmworker backgrounds. And their goals are aligned: Once a child is in the treatment room, nothing else should affect their ability to have excellent care and outcomes.
"There's so many barriers for these children to even get the appropriate care, the recommended care that they should be getting," says Blanca Fields, who leads Seattle Children's patient navigation program. "Life continues (and) it becomes very, very complicated."
Her team of five navigators works closely with non-English speaking families with low health literacy to ensure they have access to the resources they need, and teaches them how to navigate the U.S. medical system independently. The program launched at Seattle Children's about 11 years ago, born of the realization that language was not the only or most pressing challenge these families faced to ensure their children's treatment went as smoothly as possible.
"Even when they were provided quality interpretation, (families) still had a lot of difficulty understanding what the diagnosis was, what the treatment entailed and what it is that they needed to do once they left the hospital," Fields says. "They were just so lost in the system."
Now, if a nurse, doctor or another member of the child's care team notices parents are struggling, they'll refer the family to Fields. Her team breaks down the diagnosis -- in some cases explaining the basic functions of the heart and lungs -- and helps parents understand their treatment options, if they have them. They attend meetings with doctors and serve as medical interpreters, and can also connect families with the Ronald McDonald House, child care, transportation or other social services.
"Once I come, I share culture and I share language" with Spanish-speaking families, Fields says. They're often more likely to open up to her than to a social worker because they may associate social work with immigration or child protective services.
Tracking Long-Term Outcomes a Challenge
The major component of the patient navigation program is teaching families how to advocate for themselves and their children, Fields says, which can be especially challenging for families from cultures where patients don't typically question their doctors. The goal is that by the time patients finish treatment and go home, their families know how to manage their follow-up care, and who to ask for help when they need it.
"I make sure that the family is understanding what they are asked to do -- but not only that," Fields says. "I also ask those hard questions: Is this possible for them? Are they going to be able to do this once they get home? And if not, then I get the people on board to help fill whatever those barriers are."
When Fernando Sandoval's daughter Nayeli was diagnosed with leukemia as a toddler in 2012, the hospital's trained medical interpreters ensured Sandoval and his wife, who only speak Spanish, understood her diagnosis and treatment. Nayeli, now 8 years old, is in remission and looking forward to starting third grade.
"The hardest thing I've ever felt was when I was notified that my daughter had cancer," says Sandoval, who worked at a corn processing plant near the family's home in Pasco. "We're very grateful, we were treated really well. ... They loved her a lot, all the doctors and nurses and everybody."
Ideally, Fields says the patient navigation team would work with families for six to nine months, but parents often need support for a year or longer before they're fully equipped to manage on their own. The five navigators each often have caseloads of 40 to 50 families at a time.
"The need is so great, but we don't have enough resources to have more navigators," Fields says. They also don't have the capacity to continue working with families during their transition back home, or to keep tabs on patients who leave Seattle Children's for good.
A farmworker family whose child was in the middle of cancer treatment in Seattle, for example, once told Fields they were moving to California because the season was ending and they needed to find work in the fields farther south. Fields had a week to connect them with another hospital, and didn't hear from them for years.
It's not uncommon for these families to fall off the radar of the people trying to help them, making it nearly impossible to track their children's health outcomes over time -- or to ensure they fare as well as other kids in the long term.
"They're a notoriously difficult population to reach, in part because they are moving around, and then because they're potentially undocumented, they attempt to minimize their contact with the system," says Dr. Lena Winestone, a childhood cancer researcher and pediatric oncologist at University of California San Francisco's Benioff Children's Hospital.
"Coming up with a solution without fully understanding the problem is quite difficult," she says.
Support From Community Helps Fill Gaps
Community support is often a lifeline for families suffering with a sick child, especially for those who don't qualify for public benefits such as Medicaid or the Supplemental Nutrition Assistance Program. When Martha Ruiz's toddler, Sergio Jr. was diagnosed with a rare bone marrow failure disorder -- which later became acute myeloid leukemia -- in March 2017, she gave up her job as a certified nursing assistant at a hospice to stay with him in Seattle.
Her husband stayed in Sunnyside to keep working at a dairy farm before joining the family two months later, and his boss continued to pay him part of his wages -- about $1,000 per month -- while a local coffee shop held a fundraiser that collected about $3,000 to help keep them afloat.
"It was a huge relief for us, that money, because we didn't have anything," Ruiz says.
In October 2017, a month before his second birthday and about a year after Ruiz first noticed his symptoms, Sergio Jr. died.
Recently, Ruiz bought the burial plots on either side of her son, so she and her husband can join him someday. The family has sent gift cards for groceries to the cancer unit at Seattle Children's, to ease the burden on the families who have taken their place. The Christmas after Sergio Jr. died, they sent toys and a miniature red race car, just like the one he used to ride around the hospital hallways.
"Now that this has happened to us, we have tried to help other families," Ruiz says. "It's hard. Sometimes we just had one meal, because we would just be there with our son 24/7. We weren't going to go away from him."
'Sharing the Patient' in the Yakima Valley
Efforts to reach these children in their communities often fall to the Yakima Valley Farm Worker's Clinic, which sees many of the area's low-income families and charges fees on a sliding scale. Many of the clinic's pediatricians speak Spanish, and the clinic hosts health promotion events in the community.
Encouraging these families to seek regular primary care -- which they may not have had access to in other countries -- helps introduce them to the U.S. health care system, and could lead to them seeking care earlier if they notice something abnormal about their children, says Dr. Aaron Grigg, a pediatrician at the clinic's Toppenish location.
That could help doctors detect cancer as early as possible, before treatment options are more limited.
"I've seen kids come in and it really looks like a common illness, and then over time that develops into cancer, so (if they come in early) you catch it right in the very beginning," Grigg says.
In the Yakima Valley, hospital doctors can call pediatricians from the farmworker's clinic -- someone is on-call at all times -- for advice and recommendations on their care. If doctors suspect cancer or another serious illness, the pediatrician will go to the hospital and work with the team there to get the family over to Seattle Children's immediately.
"It's basically just to be a consultant for them, to make sure that they're doing everything that they can for the kids before they refer them out," Grigg says.
Sometimes, the clinic also plays a key role once a child returns home from inpatient treatment, saving families from the three-hour trek to Seattle for standard follow-up appointments. One of Grigg's patients, for example, recently went into remission and only goes to Seattle Children's every three or four months. The rest of her monthly exams are done at the farmworker's clinic.
"We share the patient, basically," Grigg says. Soon, Seattle Children's will begin using the same electronic medical records system as the farmworker's clinic, and "their notes would actually show up right alongside our notes, so that makes it really easy."
Tackling Social Barriers
That level of patient information sharing, if not direct care coordination, would perhaps be the strongest way to ensure sick kids aren't lost to the health care system before, during or after a cancer diagnosis -- for both the children of migrant farmworkers and underserved families of all backgrounds.
It also may be key to improving their long-term outcomes. Most childhood cancer research focuses on improving treatments, but a growing body of data indicates a child cancer patient's socioeconomic status may also affect their survivorship, long-term health and quality of life.
Research co-authored by Harvard's Bona in 2017, for example, found that roughly a third of pediatric cancer families experienced food, energy or housing insecurity in the first six months of chemotherapy and in early survivorship.
Another study found that among patients treated for acute lymphoblastic leukemia, the most common childhood cancer, at the Dana-Farber Cancer Institute in Boston between 2000 and 2010, kids from poorer communities were more likely to relapse sooner despite receiving the same treatments -- potentially affecting their overall survival rates, which were slightly lower than children from wealthier areas.
Bona is currently researching whether specific social factors -- like a family's ability to pay for prescriptions and stick to an oral chemotherapy regimen, or to quickly make it to the ER if a child with a compromised immune system has a fever -- affect child cancer outcomes.
Sandoval, for example, says his wife had to give Nayeli two medications per day the first year after she returned to Pasco. One chemotherapy pill required her mother to wear a mask and gloves, and to follow a "very strict" schedule. It was doable, he says, because the hospital made sure they were well-equipped and informed before they got home.
Bona, for her part, is an optimist. If the inability to keep up with their treatment is what's hurting kids' outcomes, she views it as a chance to intervene -- and potentially save the lives and improve the health of child cancer patients from underserved communities, including the Yakima Valley's farmworker families.
"We have these vulnerable populations for whom our care systems have not been designed," Bona says. "The opportunities to improve (cancer) outcomes, by targeting the mechanisms by which poverty is associated with outcomes, are really low-hanging fruit for our field."
Jessica Pons contributed reporting.
Childhood Cancer: Seeking a Better Global Solution
This story has been supported by the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems, http://solutionsjournalism.org.