Sebastián’s Story
Since he was a baby, our beautiful son Sebastián, who we affectionately call Sebas, has lived his life with fearless determination.
His big, bright smile is contagious, and his passionate spirit is always looking for adventure. Sebas loves to make people laugh, play chess, kick a soccer ball, explore outside, and do anything with his big brother, Santiago, who he adores with his whole heart.
His self-proclaimed superpower is “Happiness.”
In August 2021, when Sebas was just two years old, we discovered a lump on the palm of his left hand that seemed to appear overnight. An x-ray and ultrasound showed an unusual solid mass, and a pediatric orthopedic surgeon recommended removal. Two weeks later, on September 8, 2021, Sebastián underwent surgery. He came home with twenty stitches and a full-arm cast.
For four long weeks we waited for a diagnosis. On October 6, we got the dreaded call that confirmed our greatest fear: Sebastián had Myoepithelial Carcinoma (MEC), an extremely rare and aggressive cancer that is known to recur. Later that same day, he was admitted to the University of New Mexico Hospital (UNMH), where scans revealed at least 11 nodules in his lungs. Meaning his cancer was already Stage IV metastatic disease. His doctors told us his prognosis was poor. Chemotherapy had to begin immediately. Within 48 hours, Sebas had a port implanted and began a chemotherapy regimen based on a 2013 Italian research study.
After two rounds of chemotherapy at UNMH, we made the difficult decision to transfer his treatment to Lucile Packard Children’s Hospital at Stanford under the care of Dr. Sheri Spunt, a leading expert in pediatric soft tissue sarcomas. With the help of dear friends and strangers, we moved our family to Palo Alto, California. Early scans there showed a glimmer of hope: the nodules in his lungs appeared to be shrinking or at least not growing, a sign the treatment might be working.
In May 2022, Sebastián bravely completed his tenth and final round of frontline chemotherapy. Each round became harder on his little body — blood and platelet transfusions, hospitalizations for fevers and infections, and endless side effects became the norm. Through it all, Sebas never lost his joy, his spirit, or his smile.
But just three months later, at his first post-treatment scan, devastating news came: the cancer had returned. A lung surgery was performed to remove a malignant nodule. Only three months after that, scans revealed five more nodules. Sebastián then endured a major double-lung surgery to remove multiple tumors. Because no proven treatments for MEC exist, surgery has been our only option. Each procedure brings physical trauma and emotional scars no child should have to bear — and yet our little warrior faces them with courage beyond his years. After his last surgery, he pleaded with us: “Mommy, Daddy, tell the doctor a lot of times, 100 times, to never do that to me again. Okay? Tell him 1,000 times to never do that to me again."
In June 2024, after both our oncologist and surgeon left their positions at Stanford, we transferred Sebastián’s care to Dr. Theodore Laetsch at the Children’s Hospital of Philadelphia. Dr. Laetsch had been following Sebas’s case since his initial diagnosis, offering invaluable second opinions along the way. We feel incredibly grateful to now have him as Sebas’s primary oncologist — his compassion and unmatched expertise in pediatric rare solid tumors give us comfort and confidence as we navigate the challenges and uncertainty of this diagnosis.
As of September 2025, doctors are monitoring four nodules in Sebastián’s lungs that, thankfully, have remained stable for over a year. He continues to undergo chest CT scans every three months, along with hand MRIs every six months to check the original tumor site. We are deeply grateful that the cancer has not returned to his hand.
They say your children are your greatest teachers and certainly that has been true of ours. Every day, our Sebas teaches us about resilience and strength and inexhaustible grace. He shows us what it means to be fiercely present, to not take anything for granted, and to look at every moment we are alive as the miracle that it is.
Every day, we watch Sebastián fighting for his life — and every day, we fight alongside him. There are moments of deep grief, but also moments of profound hope. We believe in miracles, and we are committed to doing everything possible to advance research, so that a cure can be found not only for Sebas, but for every person battling this devastating disease.
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