We recently connected with Mia Sandino and have shared our conversation below.
Mia, thanks for taking the time to share your stories with us today We’d love to hear the story behind how you got your first job in field that you currently practice in.
Obviously, there are no kindergarteners who say that they want to be an adolescent and young adult cancer patient advocate and podcaster. There are no AP classes or college majors that could ever point you towards the niche group that I fell into. Through my freshman year of college, I was laser focused on a neurobiology major with medical school in my sights. I had ignored nagging knee pain for months, and I was diagnosed with osteosarcoma–a rare form of pediatric bone cancer–a mere three weeks before my sophomore year of college. My beautiful life of pursuing my academic passions and building lifelong friendships with my sorority sisters was ripped away from me in an instant.
My knee pain stemmed from a two and a half inch bone tumor breaking through my right tibia. I started aggressive chemotherapy treatment in October of 2018, and had most of my tibia, all of my knee, and part of my femur replaced in a limb salvage surgery. I lost my desire to keep moving forward. I was stuck in a body that I no longer recognized; I was, for the first time in my ambitious life, stuck.
After two year of suffering through treatment, I realized that building relationships with other adolescent and young adult (AYA) cancer patients provided me with that rush of progress, helpfulness, and connection that I desperately missed.
My mom, who is my sole caretaker and best friend, found MIB Agents through Facebook. I was amazed by their commitment to providing education to families who are dealing with a recent diagnosis, fundraising for research, and building an osteosarcoma community. On a whim, I applied to their junior advisory board. I realized that I could make a difference in the lives of people impacted by this aggressive disease. I was accepted, and every member greeted me with open arms and made me feel seen, heard, and appreciated. I loved helping with fundraising and engaging with researchers to strengthen the osteosarcoma community. I focused my effort into being the best osteosarcoma advocate that I could be, so others could feel as understood as I did. I eventually became the VP of the Junior Advisory Board (JAB), but aged out at 24.
After many months of being a panelist on our research-focused osteoBites podcast and working on the JAB, one of my close friends and fellow osteosarcoma-haver Camille Wahl pitched the idea of a podcast lead by AYA cancer patients, for AYA cancer patients. I was smitten. I could finally communicate how impactful a supportive community can be both during and after treatment. With two of our other JAB members, Kara Skrubis and Vicky Hoy, we started osTEAo: Spilling the Tea on Osteosarcoma.
Due to time constraints and conflicting work schedules, osTEAo is now co-hosted by Camille and I. We regularly bring on other patients, survivors, doctors, siblings, significant others, and parents. Balancing treatment with school proved to be too difficult for me, so osTEAo has given me a beautiful platform to educate others about life with cancer and a limb difference in a less sterile environment. OsTEAo builds friendships and understanding; it breaks down feelings of loneliness during treatment and gives hope to patients and their families. While no one wishes for aggressive cancer, I am beyond happy with where I ended up and where I will continue on from here.
As always, we appreciate you sharing your insights and we’ve got a few more questions for you, but before we get to all of that can you take a minute to introduce yourself and give our readers some of your back background and context?
My name is Mia Sandino and I have treatment-resistant stage 3 metastatic osteosarcoma, a rare pediatric bone cancer. I am 25 years old and live in Los Angeles with my mom and our five cats and two dogs. I attended the University of Washington in Seattle, where I made countless friends in my sorority. However, I had to medically withdraw after my freshman year due to my cancer diagnosis. After being diagnosed with osteosarcoma in September of 2018, I longed for the opportunity to continue learning and connecting with people through treatment. I started working with the osteosarcoma non-profit MIB Agents in 2020, and accepting a position on their junior advisory board (JAB) was one of the best decisions I have ever made.
My job on the JAB included fundraising, making videos for our social media, engaging with other patients and their families, and helping run our programs like OutBidding osteosarcoma (auction) and OutRunning osteosarcoma. I grew extremely fond of being a panelist on our research-oriented osteoBites podcast. Breaking down complex scientific research into language that parents and patients can understand provides hope for future treatments. OsTEAo, our podcast for other adolescent and young adult cancer patients, is my true passion. With mugs of tea in hand, we discuss ways to alleviate “scanxiety”, share our very real and occasionally traumatic stories, and provide silly anecdotes to prove that life goes on even in the “cancerverse”. Building a strong support network for other AYA cancer patients allows for deeper connections and understanding, which directly benefits patients’ mental health.
My work with MIB has recently earned me a congressional acknowledgement of achievement from Congressman Adam Schiff, a guest appearance on Joel Madden’s Artist Friendly podcast, two bikes from the game show Let’s Make a Deal, and a slew of researchers, doctors, patients, family members, and survivors who support this incredible community. Breaking the stigma around youth with cancer and proving that life can be fun and meaningful in the “cancerverse” is our primary goal. I am (thankfully) living proof that social support is crucial for survival in a world full of darkness and chaos. I want people to comprehend the trauma we face as AYA cancer patients with the absence of pity. We are here to Make It Better, as our organization states. We are here to live our lives to the best of our ability. We are here to encourage other osteosarcoma patients to go on that date, to speak up in class, to join that new friend group, to build a supportive community, and to advocate for themselves. I am both honored and proud to be just one person trying to Make It Better for people like me, for their loved ones, for their providers, and maybe even a bit for myself.
Let’s talk about resilience next – do you have a story you can share with us?
October 17th through October 29th of 2021 was the scariest, most traumatizing period of my life for me and my family–and I barely remember any of it. After multiple different chemotherapy treatments, my oncology team decided to put me on a promising new immunotherapy to treat my stage 3 metastatic osteosarcoma. It was a monthly infusion with minimal side effects that actually started to shrink my tumors. I started this drug in February of 2021 with low expectations, as many treatments had let me down before. This immunotherapy gave me hope, and I was starting to take back my life again piece by piece.
However, my liver enzymes (LFTs) which show how well my liver is functioning, started to skyrocket far above normal ranges. Even though the treatment was killing my tumors, it had started to kill my liver as well. My team put me on high doses of steroids to try to stop the attack. Multiple other immunosuppressive drugs were added to my regimen, effectively making my immune system as fragile as my weakest point during chemotherapy.
Around 1:30 am on the morning of October 17th, 2021, I woke up with a heavy, wet cough and could barely walk. My mom rushed me to the ER, where they told her that no visitors were allowed due to a recent COVID-19 spike. I sat alone in the ER as I felt my breathing get harder and my consciousness fade. E. coli from my gut had infiltrated my lungs causing my left lung to collapse, pneumonia, and the beginning of septic shock. The ER told my mom to come right away as they were intubating me and were not positive that I would survive the day. My last memory from that day is trying to tell my mom that I love her through broken gasps and hoping that it wasn’t the last time I would be able to tell her how much I love her.
There were three separate times that doctors told my mom that I was not expected to survive the night due to the severity of my infection. I even spiked a fever of 105.3 degrees and had to be packed in ice. On October 24th, while holding an oxygen mask to my face, I was off the ventilator and sobbing happy tears. Maybe it was the propofol, but I could not have been happier to wake up and see my mom and have my first words be: “I love you.” I spent the next five days with occupational therapy and physical therapy to regain my strength. I felt my lung reinflate at home on October 30th, and I knew it was finally time to hit the ground running again. I had some bumps in the road from ICU delirium that left me spacey and confused at times, but I knew I wasn’t going to stop.
Even though I was in and out of the hospital over the next few months due to my liver issues, I put all of my effort into prioritizing my loved ones and my work as an advocate. I was filming fundraising videos for MIB less than a week post-ventilator and sharing my experiences in real time. I was alive, and I refused to take it for granted.
I could have easily shied away from my work in the “cancerverse” and with MIB due to the vast amounts of trauma I experienced. But, I stayed the course. My mom calls me the “deathbeater” and it’s a badge I wear with honor. I keep revisiting those traumatic moments to emphasize the importance of better treatments, better outcomes, and better education. I emphasize how my support system pulled me through and how I would not be here without them. My resiliency is not necessarily caused by my survival. My resiliency exists because I show up every day knowing that sharing my stories and experiences, no matter how emotionally draining, can Make It Better.
I have lived with stage 3 metastatic osteosarcoma for almost 6 years now, and I have no plans on slowing down soon.
How about pivoting – can you share the story of a time you’ve had to pivot?
I was a headstrong, ambitious, fit, and thriving 19-year-old. My focus never wavered from becoming a great pain management specialist in the field of neurology. I wanted to help people. At 19, we feel invincible. I had intense knee pain throughout my entire freshman year of college, but I pushed through it so I could finish out the year. After all, I probably had hurt it while slipping on wet leaves or dancing on an elevated surface in a fraternity basement. I never expected to be diagnosed with osteosarcoma.
I had to completely uproot my life from Seattle and move back home. I had to watch from a hospital bed as my friends secured internships, went to formal events, travelled together for spring break, and eventually graduate–all without me. I was lost, unsure what my future looked like (if I even had one), and both emotionally and physically exhausted. Even if I could start a new path, I had no certain timeline and my cancer operated on its own schedule and not mine. I knew I had to pivot to a completely different career and life than I had ever expected.
My treatment, guided by my incredible medical team, is done at UCLA. After two major lung surgeries to remove multiple tumors from both lungs, I was introduced to UCLA’s adolescent and young adult (AYA) patient advocate. She was starting a patient advisory group that would give feedback to the higher ups at UCLA with the goal of improving the patient experience. Even though I had tubes sticking out of my chest and was pumped full of enough opioids to knock out a small elephant, I knew that this opportunity could begin my path forward. I had unique experience that could be used to benefit countless others in the future. I finally realized that I could use my experiences, both positive and negative, to actually help people.
After a successful beauty event and multiple meetings with UCLA’s AYA group, I discovered MIB Agents and was able to continue my advocacy efforts there. I have a purpose, a supportive community, and can actually Make It Better for others with osteosarcoma because of my unexpected pivot.
Contact Info:
- Website: https://www.mibagents.org/education/osteao-podcast
- Instagram: @miasandino
- Youtube: https://www.youtube.com/channel/UCalwR0lah-D5EFuqLw7hevg