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Warrior HQ is always a magical place at FACTOR. It is where our Junior Advisory Board, OsteoWarriors, and siblings of OsteoWarriors and OsteoAngels connect and find community with others who share similar experiences and a common bond. It is the heart of FACTOR and we are honored to have two incredible Lead Agents planning and managing Warrior HQ this year.
Michelle Preston is an Advanced Child Life Specialist in the Cancer Center at Children's Hospital of Philadelphia (CHOP).
Maeve Smart is an OsteoWarrior and a Senior Clinical Research Coordinator in the Janeway Lab at Dana-Farber Cancer Institute.
Maeve, can you share your osteosarcoma story with us? When and how were you diagnosed - what types of surgery and treatment did you have?
Walking the halls of Memorial Sloan Kettering Cancer Center for the first time, I did not realize I was in a cancer hospital. I knew I had the mile test in my sixth-grade gym class. I knew I had volleyball practice on Thursday night. I knew I was having a bone biopsy on Friday. Being so young, I understood things in absolute terms. The nuanced understanding of what was about to become my reality came later in my teens. Sometimes I think I’m still learning to process the experience.
Over time, I learned about the severity of septic shock, the helplessness of relapse, and the isolation of a four-year-long disruption to my schooling and development. My treatment consisted of MAP chemotherapy and a limb-salvage surgery that failed up until the point of local relapse. Next, I was treated with ifosfamide and etoposide and an above-knee amputation. Gratefully, I am now 10-years No Evidence of Disease and preparing to start medical school this July! I am extremely thankful for the healing the MIB Agents community has provided me in survivorship.
How did you know you wanted to pursue a career in medicine?
Academics, medicine, and human relationships were my lifeline during osteosarcoma treatment. Today, these remain my constant beacons. In recognition of the miracle that confines my illness to memory, I am working towards a career in service of children and families crippled by medical crises. I am a survivor, and my recovery will span my lifetime. I will use that time to provide empathetic expertise to those doing the important, messy work of unraveling and coping with illness at all stages. As a physician, I will continue charting a path toward transforming my history into something productive, powerful, and valuable for myself and society.
What are you currently working on in the Janeway Lab?
Since connecting with Dr. Katie Janeway at FACTOR 2020, I have had the privilege of working in her lab at the Dana-Farber Cancer Institute! As a Senior Clinical Research Coordinator, I primarily work on two projects in the lab: RECOVOR and Count Me In. RECOVOR is an institutional study enrolling cancer patients that have recovered from COVID-19 infection. This study aims to describe the clinical manifestations of COVID-19 infection, identify variables associated with severe infection, and evaluate native SARS-CoV-2 antibody development in the pediatric oncology population. Since January 2021, I have managed study enrollment, consent conversations, blood sample requisitions, and electronic medical record data abstraction and analysis. Additionally, Count Me In is a patient-partnered cancer genomics research initiative enrolling patients with all cancer types. Participants are invited to contribute their medical records and/or tissue samples through an online consent process, regardless of where they received cancer treatment, to accelerate the pace of research. In my role, I lead clinical data curation for all patients with a diagnosis of osteosarcoma or leiomyosarcoma. The opportunity to contribute to these projects as a researcher has provided me with a full-circle experience that reaffirms my desire to become a physician-scientist.
Michelle, what inspired you to pursue a career as a Child Life Specialist?
The story is serendipitous, but I believe that if I had learned about the career at any age, I would have been sold! I was an intern at a child development center as a psychology major. One of my college professors noted that I love “being fun” but seem uniquely comfortable talking about hard things (I had just facilitated 4 and 5-year-olds having a vibrant snacktime chat about end of life, quite by accident), and that there is a job where you constantly do both- haha! She was right. I researched the career that very day and applied to be a PICU Child Life volunteer at the hospital down the street from my college. The rest is history.
For those not familiar with Child Life, can you describe what you do and what a day in your life might look like?
Simply put, we meet patients and families “where they are at” and find unique ways to support them psychosocially as they navigate challenging experiences- for me, that’s in the medical setting (Oncology Clinic). I often meet brand-new patients during their first visit. For younger patients, that may be showing them the playroom, and discussing appropriate language with their parents to help educate their kids on what is going on, diagnosis-wise, to help them find a sense of control and resilience. We use stuffed animals to teach central lines, we create custom PowerPoints to teach about amputation and rotationplasty. Most importantly, we show up and follow a patient’s lead. Good day? I want to know how prom was, or celebrate a birthday! Bad scan? I’m just as likely to have a deep chat about it as I am to hang out with my patients and not talk about it, maybe they’re so burnt out of the topic it can be refreshing to do anything else. It can be quite confusing from the outside to see us laughing amidst really challenging news, but relationship-building is key, especially for my older patients. I’m so grateful to know these patients and families and to hop in the passenger seat of their cancer experience.
Tell us about your hobbies and passions, and what you like to do in your free time.
[Michelle] I love seeking the balance between “relaxing” (taking my dog to the dog park, reading, etc) & giving into my extrovert side- trips to Florida to avoid the winter, constant Philly sports (GO BIRDS), going out to eat/cooking with friends or my extended family. I volunteer at a youth grief camp weekend annually through Penn Medicine, as well as attending CHOP’s Parkway event (the Cancer Center walk at the Philadelphia Museum of Art), and both events always land on my favorite weekends of the year.
What are your goals for Warrior HQ at FACTOR 2024?
[Michelle] I think the magic of something like HQ is that the venue itself will manifest the most important thing- connection. Osteosarcoma really is such a unique cancer and some of the attendees may never have connected with anyone who really “gets it” – the letters MAP no longer just spell “map” to them, they all have 3+ (+++) surgical scars- and now suddenly you have 40 people in the same room who get it. How wild is that? Our role is just to facilitate the fun between this amazing crew. Tons of laughter and people feeling seen!
[Maeve] Warrior HQ at FACTOR 2024 will be fun!!! I am so excited to see friendly faces, meet more people in the osteosarcoma community, and make more FACTOR memories :)
What plans do you have in store for Warrior HQ? What can Warrior HQ attendees expect this year?
[Michelle] I think partnering a Child Life Specialist and an amazing OsteoWarrior like Maeve for HQ has been entertaining for the planning team- we just love activities! We have to have some slime, some crafts, some games, some swag. Tons of candy? Therapy bunnies. A scavenger hunt? Anything could happen.
[Maeve] Plus a few surprises!
