When Matthew walked in the door of the Fred Hutchinson Cancer Center - Proton Therapy three months after he finished treatment, the welcome from staff was overwhelming. Months earlier, the eight-year-old had been diagnosed with craniopharyngioma — a rare type of noncancerous brain tumor that usually develops near the pituitary gland and optic nerves.
Matthew’s diagnosis took his family by surprise. The tumor was discovered when he was having an MRI in Spokane to find out what was causing his vision changes. After the MRI, he was immediately admitted to the hospital and stayed there an entire month.
“I felt surprised and confused about how the tumor got there,” says Matthew of that time.
Matthew’s mom, Noemi, his dad, Hugo, and the entire family were devastated. “Our lives changed immediately,” says Hugo, snapping his fingers. But the family lived up to their motto — “never give up” — and persevered through several surgeries to remove the tumor.
After the surgeries, Matthew’s doctors in Spokane recommended that he receive proton therapy next. The treatment was only available in Seattle, hours away from their home in Prosser, Washington. But since it was their best shot, Hugo and Noemi never hesitated. They knew they would do whatever it took to get Matthew well again.
However, by the time Matthew had his initial consultation for proton therapy, he was having further vision changes. His doctor, Dr. Stephanie Schaub, who specializes in childhood cancers and sarcoma, was hesitant to begin proton therapy, and another MRI showed that Matthew’s tumor had grown back. He would need another surgery, in the hope of restoring his vision, before he could start radiation.
This surgery was done at Seattle Children’s, where the team included Dr. Manuel Ferreira. Spanish is the primary language used in Matthew’s family, and they were grateful to have a doctor who spoke fluent Spanish, which helped Hugo and Noemi feel much more in control. At the Center, Layne Chapple, the Center’s nurse practitioner, was also able to speak with them in Spanish about their care.
After the surgery, Matthew was able to start proton therapy last October.
“He had the best attitude toward treatment,” says Dr. Schaub. “When we set him up for proton therapy, he took off his mask, looked at it and said, ‘This mask might just save my life.’ He also provided comfort to every patient in the waiting room.” Throughout his treatment, Matthew remained his upbeat, positive and charismatic self.
His radiation therapist, Trang, painted his mask to look like a Minion. The mask sits on a shelf Noemi created that holds all of Matthew’s “trophies” — items he earned by going through this lengthy process. It also includes his Beads of Courage and a stethoscope given to him by a doctor.
“I thank the Lord for our special kids. It’s hard, but it makes you stronger,” says Noemi. “They are your teachers for becoming a stronger mom. Now I can help other moms in similar situations, because I have been through it.” Noemi painted mandalas and used art as a type of therapy to get through the hard times. At the end of Matthew’s treatment, she gave a mandala to every clinical staff member at the proton therapy facility. Dr. Schaub looks at her mandala as a daily reminder of Matthew and his family’s strength and trust, and of the distance — both physically and emotionally — that each family travels to trust our team with their care.
Hugo and Noemi have received an overwhelming amount of support from their family, care teams, church and community. Matthew’s two brothers, Husai and Jacob, came to Seattle every weekend to support him. In their hometown, people organized yard sales to raise funds for Matthew’s travel expenses, and his school even organized a surprise parade with police and firefighters for his eighth birthday!
Today, Matthew is back in school and hanging out with his friends. He can’t yet do many of the sports he used to enjoy, in case he bumps his head, but he can get back to playing Minecraft and walking on the treadmill.
His advice to other kids is, “God will be there for you.”
“Never…” prompts Hugo.
“…give up,” finishes Matthew.