Jiovani Cunanan says there are two key reasons why his 8-year-old daughter, Lucia, is still alive and fighting after being stricken with a deadly blood cancer.
One is the skill of doctors at Children’s Hospital of Philadelphia, a leader in treating her specific illness, juvenile myelomonocytic leukemia.
The other is his wife, Lizbeth, trained as a nurse in the family’s native Philippines, who has devoted herself to their daughter’s care.
While Jiovani works to support the family, Lizbeth manages Lucia’s medications, physicians’ appointments, and delicate nutritional needs. She lives constantly on alert for signs of fever, which for Lucia can be a life-threatening emergency. When a bone-marrow transplant landed her in seven months’ quarantine, Lizbeth lived in quarantine, too.
The government had recognized the precarious state of Lucia’s health, granting deferments from deportation that allowed the family to remain in the United States for treatment.
But now the Trump administration says that while Lucia, her father, and her younger brother can stay, her mother must go.
That has thrust the parents into crisis, terrified that Lucia’s health will crash without her mother’s constant attention. But returning as a family to the Philippines, with its limited access to cancer care and low survival rates, could be a death sentence for their daughter.
“I am just trying to be strong,” said Lizbeth, 43. “I told myself, if I will get sick, who will take care of my daughter?”
Asked why Lizbeth was denied a deferment, a spokesperson for U.S. Citizenship and Immigration Services said the agency does not comment on individual cases.
Philadelphia immigration attorney Ricky Palladino, who represents the family, said he was “absolutely shocked” that Lizbeth alone was denied. His review found that she has never been arrested or accused of a crime.
He repeatedly asked USCIS for an explanation, he said, hoping for a chance to address any concerns the agency might have. Pennsylvania Sen. Bob Casey also inquired, he said, but no answers were forthcoming.
“It just doesn’t make any sense,” Palladino said. “Our government, which allowed them to come to the United States to save their daughter’s life, is turning its back on her.”
Consistent, quality care has kept Lucia in remission for five years, enabling her to go to school. But her health remains uncertain.
Complications from her 2014 bone-marrow transplant caused numerous hospitalizations, and continue to require attention and treatment, according to CHOP documents and other records shared by the family.
Last month, Lucia was seen three times at CHOP, including for a 104-degree fever that sent her to the emergency room. She undergoes blood and platelet transfusions, and continues to be examined by oncologists, endocrinologists, and dermatologists.
Palladino thinks the mother’s denial could stem from the Trump administration’s attempt to eliminate the deferral program last summer, wondering if USCIS created a tougher internal standard for relief.
In mid-August, with no public notice, USCIS stopped accepting applications for deferred action, ending a small humanitarian program that the government has run for decades. It allows undocumented families to live and work in this country while fighting serious illnesses including cancer, leukemia, and cystic fibrosis.
Families were told to leave or face deportation — sparking an uproar from medical professionals, elected officials, and advocates. Deporting desperately sick children to nations with mediocre health-care systems, they argued, amounted to signing their death warrants.
The government gets about 1,000 requests a year for deferred action, which grants no immigration status but shields families from removal.
After a month’s barrage of criticism, USCIS restored the program.
In deferment cases, typically at least one family member crossed into the U.S. without proper authorization. That’s not true for the Cunanans. The family obeyed federal immigration regulations, never entering or staying in America without official permission. They declared up-front that they sought medical treatment for their child.
“All I want is to have my daughter live her full life,” said Jiovani Cunanan, 45, a nurse by profession who now works as a dialysis technician.
Lucia loves to draw and paint, and to spend time with her 6-year-old brother, John, at the family’s Northeast Philadelphia apartment.
When a classroom assignment asked students to name something for which they’re grateful, Lucia wrote she was thankful for God, because he “gave me a second chance to survive.”
Surgeons had to remove Lucia’s spleen because it was damaged by cancer, and the loss of that blood-filtering organ increases her risk of infection. All her baby teeth were surgically extracted after the roots were wrecked by chemotherapy. She’ll need to take antibiotics for the rest of her life. She also has a lifetime requirement to report to a hospital within an hour of developing a fever.
CHOP pays Lucia’s medical bills.
The saga began in 2006, when Jiovani was offered a nursing job in the Persian Gulf nation of Qatar. Lizbeth followed a year later, both of them drawn by the higher pay and benefits offered in a country that’s short of nurses.
They stayed close to family in the Philippines, where Lucia was born in May 2011. After returning to Qatar, the couple realized their baby was sick.
At 9 months old, Lucia was diagnosed with leukemia.
She underwent two cycles of high-dose chemotherapy in Qatar. Doctors said she would soon need a bone-marrow transplant. But that procedure was not available in Qatar, nor for children in the Philippines.
In July 2012, the parents brought Lucia to the U.S. on legal visas, directed by a friend to the Hackensack University Medical Center in New Jersey. Doctors immediately admitted Lucia to the intensive-care unit for sepsis, a dangerous condition caused by the body’s response to an infection.
When physicians performed a marrow aspiration, taking a sample of the liquid portion of the soft tissue inside Lucia’s bones, they found no cancer cells. She was in remission.
The family returned to Qatar hoping Lucia was cured.
But the child relapsed in August 2013.
The National Bone Marrow Registry found three matching donors in the United States.
The couple handed off then-4-month-old John to Lucia’s mother, and came to America on visas in April 2014. At that point, Lucia was dying. CHOP performed the bone-marrow transplant in August.
Lucia’s recovery was tormenting. She had one tube in her nose, another in her stomach, and a central line in her chest. She was plagued by diarrhea, and vomited 20 times a day.
Still, her mother said, when doctors asked how she was feeling, Lucia would offer a resolute thumbs-up.
After a month in the hospital, she was discharged to quarantine at the Ronald McDonald House in Camden, where the family was staying. Her compromised immune system could not risk exposure to the outside world.
The family’s visas, valid for six months, were twice extended, and while still legally in the country, they were granted deferred action.
Their trouble began in February 2019, when USCIS unexpectedly denied a renewal for Lizbeth.
Palladino filed a detailed request for reconsideration in June, noting that “Lucia’s life and well-being continue to critically depend on CHOP, and her mother’s presence continues to be critical for Lucia’s daily care.”
In August, USCIS again denied Lizbeth, saying it no longer processed deferments.
Once the agency reversed course and again began accepting applications, Palladino asked for a new assessment.
The answer was the same — a third denial in November.
The family has little legal recourse, because deferment is granted by an executive-branch agency, not by a court.
They’ve asked for help from Pennsylvania Sen. Pat Toomey. A spokesperson said Toomey is working with the family’s lawyer and USCIS to try to find a solution for all involved.
And they’ve tried not to dwell on their fears for Lucia.
“One time she saw Daddy crying,” Lizbeth said. “She will tell Daddy: ‘Daddy, don’t worry. I’m OK. Just pray.’ That’s why we are not giving up on her, because she herself is so positive. She’s giving the strength and courage to us.”