To get to this point, Tiago had to go through two stem cell transplants, six rounds of chemotherapy, 12 rounds of radiation, and dozens of blood transfusions and scans.
Tiago Viernes was less than 2 years old when he woke up one morning and started limping.
His parents, Wapato residents Conan and Geomara Viernes, watched without alarm. Their son was bright and rambunctious. They figured he had strained a muscle or slept on it wrong. After a couple of hours, the limp straightened itself out, and life went on as normal.
One day the couple’s day care provider called. Tiago had awakened from a nap and could barely walk. The Vierneses took Tiago to their pediatrician at the Yakima Valley Farm Workers Clinic, who did an X-ray, said it could be an infection, and told them to watch it. The next day, Tiago started limping on his opposite side. The doctor asked the family to bring him in for a blood test.
“When the doctor came out, she said, ‘I think your son has cancer,’ ” Conan said. “And when you hear that, it’s like this red buzzes all over you.”
The clinic immediately connected the family to Seattle Children’s. By that time, Tiago had “yellowed,” Geo said; the whites of his eyes were discolored and his skin turned sallow. After a day of tests, doctors diagnosed Tiago with Stage 4, high-risk neuroblastoma, a pediatric cancer where the five-year survival rate hovers around 45 percent.
“When they said Stage 4,” Geo said, “I thought he was going to die.”
But Tiago fought. This year, on Sept. 11, an ecstatic Conan posted a picture of Geo, hugging Tiago, on his Facebook page with an emoji-laden message: “Scans are clear!!”
The day marked two years that Tiago has been cancer-free. He’s a bubbly 5-year-old who likes playing video games, listening to pop and rap music, and playing croquet and kickball with other kids in the neighborhood.
But for the family to get to this point, Tiago had to go through two stem cell transplants, six rounds of chemotherapy, 12 rounds of radiation, and dozens of blood transfusions and scans. And the Vierneses spent almost three years wondering, every day, whether he would survive.
When Tiago was born on Dec. 2, 2013, “he was very precious, very alert,” Geo said. “He met all his milestones.“
Dr. Navin Pinto, one of Tiago’s main physicians during his treatment at Seattle Children’s, said neuroblastoma is one of the rarest types of childhood cancer. While there are about 12,000 new cases of pediatric cancer nationwide each year, only about 300 or 400 of those children have neuroblastoma.
Tiago had an aggressive form of the cancer that — with a 50-50 chance of survival — mandated one of the hospital’s boldest treatment regimens. Doctors told the family that Tiago would require 18 months of intense treatment. During that time, the family was not allowed to be more than an hour away from the hospital, as any complications could prove life-threatening.
Geo quit her job as a dental hygienist at the Yakima Valley Farm Workers Clinic. Conan, who works for the University of Washington, requested a transfer to Seattle.
“They don’t treat pediatric cancer in Yakima,” Conan said. “So if your child gets a cancer diagnosis, you’re moving.”
In September, a report by Gabby Galvin and Jessica Pons in U.S. News and World Report noted that Lower Yakima Valley families have to drive more than 150 miles to get to Seattle Children’s, the nearest children’s hospital for treatment of pediatric cancer, and that the numerous follow-up appointments, often over several years, can pose formidable barriers to families with limited incomes or transportation.
Seattle’s Ronald McDonald House, which provides free temporary housing to children from out of town, serves families from a five-state area — Washington, Wyoming, Alaska, Montana, and Idaho — and it’s not uncommon for the waiting list to be 40 families long, Pinto said.
The hospital has an uncompensated care fund to help families with expenses, including transportation and housing, Pinto said.
“We do ask a lot of families to go through this therapy,” he said. “And it is hard for families with limited income to uproot their livelihoods for this long. But they know we’re working toward a cure.”
The Viernes family moved into the Ronald McDonald House. Each day the family was hit with new terms, new procedures, new things to research.
There were counts to learn: ANC, or absolute neutrophil count, the count of the white blood cells able to fight the disease. And the hematocrit level, or the red blood cell count, which, if it fell too low, would require a blood transfusion.
There also was the nasogastric tube, or NG tube, that went through Tiago’s nose and down into his stomach that allowed doctors to pump “feeds” of liquid food into his belly, and the double central line for blood draws and blood infusions.
“You’re thrown into a foreign world, and it makes you feel helpless,” Geo said. “But you can’t show kids that. One of the most important things for me is that I didn’t want him to be afraid.”
Several more rounds of chemotherapy and a six-hour surgery later, doctors told the Vierneses they wanted to try an innovative technique called an autologous stem cell transplant. They would extract some of Tiago’s stem cells, store them in liquid nitrogen, then inject the cells into his blood after a six-day regimen of high-dose chemotherapy called thiotepa that otherwise would wipe out his bone marrow and immune system. The Vierneses agreed.
The thiotepa, a liquid treatment injected via IV, seeped from Tiago’s skin on a regular basis, requiring “baths” with wipes every two hours for four days. The toxicity of the treatment was so intense that the Vierneses were not allowed to touch or hold their son without gloves.
The treatment affected Tiago’s mouth and throat, causing swelling, and made his small body itch. When he scratched his skin, open sores formed. He had a fever of 104 degrees for four days and a morphine drip for the constant pain.
What the Vierneses felt, watching their tiny son fight for his life, was indescribable. But words from Tiago’s Grandpa Stan, who visited Tiago in the hospital, came close. On the family’s blog, #TiagoStrong, Stan remembered entering the hospital room and being shocked by the appearance of his grandson, frail and immobile in the hospital bed sheets.
Stan sang Tiago an “I love you” song. And the child raised an arm.
“All of my helplessness evaporated when I saw his little arm came up,” Stan wrote. “That arm meant he wanted to give me a hug. Despite his apparent discomfort, Tiago was projecting his love to me.”
The day before Tiago’s third birthday, he went through his second and final stem cell transplant. Then came 12 rounds of radiation, requiring anesthesia each time. More shots. More medicine. Six months of immunotherapy. Then it was time for another set of restaging scans, a process doctors use to find the amount or spread of cancer in the body following treatment.
The scans were clear.
The couple wrote in #TiagoStrong that they wanted “to proclaim absolute victory.” But there were still three more rounds of immunotherapy and more scans to go.
In the midst of the maelstrom, the Vierneses focused on the hope, love and support they were experiencing for their son. They stayed in the moment.
“Today we are celebrating,” they posted, the day Tiago’s restaging scans came back clear. “Today Tiago is in great health and spending his day at the park having fun.”
The final post in #TiagoStrong titled “Big, huge post!!” is from Geo. The exclamation point-studded entry announced that Tiago had participated in a clinical study at the Memorial Sloan Kettering Cancer Center for Children in New York, his one-year scans were clear, he was starting preschool, he rode the bus home, and she had her job back as a dental hygienist at the Yakima Valley Farm Workers Clinic.
“We are beyond blessed to be able to live this life we are living. It feels unreal, but we will take it!!!” she exclaimed. “All of it!!!!”
Tiago finished his treatment at Seattle Children’s in August 2017. His final scan is scheduled for September 2020. Because he’s a survivor, Tiago also has to go through yearly organ checkups for the rest of his life.
Pinto said passing the two-years-cancer-free mark means Tiago’s odds of staying that way are now very high, with a 90 percent chance that he’ll stay cancer-free.
“Tiago had lots of hard days,” Pinto said. “But you wouldn’t have known it from looking at him, because he always had a smile on his face.”