Sebas waiting for Santi to “come back to him” from school. 8/11/2021
Sebastián’s Story
We have always called Sebastián our miracle baby. It took us three years to get pregnant with our first child, Santiago. Six months after he was born, without even trying, we got pregnant with Sebastián. We barely made it to the hospital, where in less than 8 minutes from arriving, he was born.
Since he was a baby, Sebas (pronounced “SEH-bas,” our nickname for him) has been a dreamer, either with his head in the clouds and chasing his shadow or laying with his cheek to the ground so he can be eye to eye with the wheels on his trains. His big bright smile is contagious and his passionate spirit is always looking for adventure. Fearless and independent, he lives for riding his bike, hiking outside, playing with cars, and doing anything with his older brother, Santiago, who he adores with his whole big heart.
Warrior Sebas in his new blue cast, 2 days after his surgery. 9/10/2021
In August of 2021, when Sebas was two years old, we discovered a lump on the palm of his left hand, which seemingly came out of nowhere. We took him to the doctor who ordered an x-ray and ultrasound that showed an unusual solid mass. The next day we met with a pediatric hand surgeon, who recommended the mass be removed and biopsied. Two weeks later, on September 8, 2021, Sebas underwent surgery to remove the mass. He went home with twenty stitches and a full-arm cast.
For four long weeks we waited for a diagnosis. It is impossible to describe what waiting like that feels like. On October 6, 2021, we finally got the dreaded call that confirmed our greatest fear. Sebas was diagnosed with Myoepithelial Carcinoma, an extremely rare and aggressive cancer that is known to recur. In an instant, our lives were turned upside down.
Our doctor told us to come to the hospital immediately. We picked up Santiago early from preschool and took the boys to a local park, not knowing if this might be the last time they would have this time together free of these burdens. We took pictures and video of them playing in the playground, sliding down the slide, laughing and being carefree brothers. As you can imagine, for us that moment was as beautiful as it was painful but every memory together is a treasure we are endlessly grateful for.
Later that same day, Sebastián was admitted to University of New Mexico Hospital and a chest CT scan, full body PET-CT, and MRI of his hand were performed. The results were devastating: at least 11 nodules were found in both lungs, meaning the cancer was metastatic: Stage IV. Our oncologist told us that it was as scary as it could be and that the prognosis was poor. Chemotherapy would need to start immediately. Within two days he underwent surgery for a port implant and started a chemotherapy regimen modeled from a 2013 Italian research study.
An unexpected admission. 12/23/2021
Right after the diagnosis, Naomi was forced to resign from her new job because chemotherapy treatment requires a full-time caregiver. Michael also had to take a three-month leave of absence from his job and is still only working part-time.
After two rounds of chemo at UNMH, in mid-November 2021, we decided to transfer Sebastián’s treatment to Lucile Packard Children’s Hospital-Stanford, under the care of Dr. Sheri Spunt, a leading expert in pediatric soft tissue sarcomas. So we picked up our lives, took Santiago out of preschool, and with the help of dear friends and strangers, we moved to Palo Alto, CA.
Shortly after arriving at Stanford, another round of scans (CT, PET, MRI) were performed on his hand, lungs, and full body to see if the cancer was responding to the chemotherapy. Those scans showed that the cancer nodules in his lungs appeared to be either shrinking or not growing, indicating that the chemotherapy was possibly working.
Sebas having his vitals taken during chemo. 1/15/2022
Deciding how to treat Sebastián’s hand, where the tumor first appeared, has been challenging. As of March 2022, MRI and CT scans of his hand have not shown any signs of cancer, but the team of doctors at Stanford remain concerned that there are cancer cells still there that are too small to be detected. These cells can cause the tumor to grow back. Radiation would normally be used in combination with the chemotherapy to kill those microscopic cells, but the radiation would effectively stop his hand from ever growing again. As a result, our options are to do nothing and wait and see if the tumor comes back; or amputate the hand, which would eliminate the threat of it coming back in that specific location.
This is obviously a heart-wrenching decision either way. But at this point, because the immediate threat is from the cancer in his lungs, we have agreed with our doctor’s recommendation to “wait and see.” If the tumor comes back in his hand, we will have to make a decision at that time.
Our Sebas preparing himself to have his port de-accessed so we can leave the hospital. 1/18/2022
Some days, Sebas plays with his older brother Santiago, just like other kids do. Other days, he is in the emergency room because a simple fever can be potentially fatal. But almost every day, Sebas wakes up saying he doesn’t want to go to the hospital, or get “poked.” For a two-year-old, processing that amount of fear and anxiety is excruciating. For a parent, watching a needle be put in your child’s port, be put under anesthesia, be given countless blood and platelet transfusions, and injected with poison, is pure torture.
Chemo sucks. It is horrific. Anyone who has suffered through it or watched someone they love suffer through it knows that. For children, chemo carries a heavier burden. It can cause permanent damage to a growing body and long-term side effects. Will my child lose their hearing, become sterile, or develop heart failure, liver failure, or kidney failure? Will my child develop another cancer or disease because of this treatment? These are all questions parents ask themselves as they choose to fight one evil with another. And sadly, for many rare pediatric cancers like MEC, it rarely works. Yet we try it anyway. We have no other options.
Sebas and Santi reuniting after Sebas came home from the hospital. 11/14/2021
In May of 2022, Sebastián finished his 10th and final round of chemotherapy in his frontline treatment. Each subsequent round became harder and harder on his little body. Multiple blood and platelet transfusions sadly became the norm and we had to be admitted after each new round for fevers, sores and infections due to his immunocompromised system. In spite of all of that, Sebas has never lost his spirit or his smile or his ability to find joy.
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.
It is important to share that throughout this journey, the amount of kindness that has been showered upon us from family, friends, colleagues, and strangers has brought us to tears and left us speechless on so many occasions. On the days when the fear and grief of what we are experiencing has felt unbearable, it is this kindness, and sense of being held by a community, that provides us with so much strength and hope and we are eternally grateful.
Below is our one-year update on how Sebas is doing now. For additional updates please check our blog. This is where we will continue to share news about Sebas and our work to find a cure.
Update: March 10, 2022
One-year update:
Sebas playing at the beach. 2/13/2022
On August 23, 2022, we traveled back to Stanford Children’s Hospital in CA for Sebas’ 3-month scans. The MRI of his hand, where the tumor first presented itself, looked normal and did not show any signs of cancer. The CT scan of his chest, though, showed signs of concern. One of the two nodules still remaining in his lungs had grown slightly since May. The CT also showed a lesion that the doctor’s believed to be cancer on his sternum, which would mean the cancer had spread to his bones. A couple of days later, they did a full body PET/MRI scan, which showed that the lesion was a recent fracture that was healing. This likely happened in June when Sebas had a hard fall playing. So it was good news that the cancer hadn’t spread to his bones, which would have been devastating. Never had we been so happy to learn that Sebas had a fractured sternum!
After consulting with our oncologist and surgeon, we decided to try to remove the lung nodule that had grown. On August 29th, Sebas underwent surgery, and thankfully the nodule was successfully removed. A week later we got the diagnosis and, sadly, it was malignant Myoepithelial Carcinoma.
When Sebas was first diagnosed with MEC last October, the CT scan showed 11 nodules in his lungs. We were told he had metastatic disease. But because they didn't biopsy any of the nodules, we were never 100% positive that was the case. We prayed they were something else. Now we know the reality that we, and he, are facing. Sebas has Stage IV cancer. And at this time there is a nodule that is still in his lung that is too small to be removed.
So what does this mean? It means we never stop praying for a miracle because that is what we need. Sebas will be rescanned every three months and if at any time the surgeon thinks he can get the other nodule, or any new ones that might grow, he will. This is a cancer with a high likelihood of recurrence when it is metastatic. As parents, trying to live with that feels unbearable. At this point there are no other treatment options but to wait and see if it comes back. And to plan to the extent we can for what might lie ahead. This is why we are putting everything we can into the research. That is our only hope. That Sebas can battle this long enough for the scientists to find a treatment or a cure for MEC. And unfortunately, this takes money, lots of it.
Our beautiful baby is a warrior but going to the hospital and having to be put under anesthesia and scanned and go through surgery is really hard for him. It brings up a lot of trauma that he doesn't have the language to express, so it comes out in other ways. After this last surgery he begged each of 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." Our sweet sweet baby.
