Thomas Stuenzi is a research coordinator in the Center for Cancer and Blood Disorders, but his passion for helping others led him to be involved in a much bigger way. Tomorrow he will be the 500th person to shave his head in the history of the Trinity Hall St. Baldrick’s Foundation event – just one example of his desire to make a difference. Read this Q&A about his work with our oncology and hematology patients and what he is most looking forward to with a newly shaved head.
Heather: What is your role at Children’s and how long have you worked here?
Thomas: For the past four years I have worked in the Center for Cancer and Blood Disorders (CCBD) as a research coordinator. The majority of that time I coordinated a research study working with Dr. Patrick Leavey (oncology attending) and Julie Germann, Ph.D. (oncology psychologist) looking at the prevalence of anxiety and depression in the oncology population. We enrolled newly diagnosed patients (ages 8 to 17) and had them and a parent or guardian complete psychometric assessments (validated questionnaires) to establish a baseline of depression, anxiety, quality of life and hope. We then repeated these measures every three months for one year in order for us to track the progression, or lack thereof, of these outcomes. More recently, I have taken on additional duties to help maintain our research studies and enroll patients in a registry study through the Children’s Oncology Group.
Heather: How did you get involved with St. Baldrick’s?
Thomas: Just after a year of working in the CCBD is when I first heard about St. Baldrick’s. Each year, there are usually a few representatives from our department who get their heads shaved, usually by one of their patients. At first, I thought it was pretty cool. In March 2011, our psychologist, Dr. Germann, decided to have her head shaved for St. Baldrick’s. I remember all I could think of when I first found out that her long thick hair would be gone was ‘Wow!’ It was not until that time that I truly realized what this event meant. I pondered what conversations between Dr. Germann and her patients were like in regards to them losing their hair because of chemotherapy and the potential identity struggle thereafter. As we all know, our hair partly defines who we are in our youth (and for some in adulthood) and for someone, especially a female with long thick hair such as Dr. Germann to have it shaved off to in order to demonstrate that our hair does not define us and that it will grow back is remarkable. This one act of shaving one’s head had the potential to instill strength, courage, confidence and self-esteem in those patients she interacted with on a daily basis, especially the female ones.
Last year I thought about participating, but I didn’t. I did, however, attend the event for the first time, and I loved it. This year, the time came to sign up and I again thought about it but had not made a decision. About two months ago, I was talking with one of our third year fellows, Dr. Wil File, and he mentioned that he was shaving his head for St. Baldrick’s and stated that I should too. That was all the encouragement that I needed! Two months later and I am about to go bald…
Heather: Are you shaving in honor of anyone?
Thomas: Seeing what our patients and their families have to go through is heartbreaking but inspiring. I am not shaving in honor of any one person, but rather, all the kiddos past, present and future who come through the CCBD. I have decided to shave for three main reasons – to spread awareness of this disease, to stand side by side with these children with cancer (with our bald heads) and to help psychosocially.
Heather: Tell me about your volunteer experience with other CCBD activities.
Thomas: Since working within the CCBD, I have tried to give back as much as I can. Being able to spend more time with these kiddos outside of the hospital is inspiring. Not only are they trying to be an infant, child, adolescent or teenager which is hard enough, but they are also fighting for their lives. I have been blessed my whole life in that I haven’t had to deal with anything of the sort and want to do what I can to help.
For the past two years, I have volunteered with Camp Esperanza, which is a weeklong camp for oncology patients ages 6 to 15. Being at camp with these patients reminds me of what being a kid is all about – having fun! If you did not know any better, you would not know that these kids have cancer besides the fact that some have morning, afternoon and evening medications. They are running around, swimming, zip lining and doing other activities that you would not think that they should be doing. They are back to their “normal” life. Prior to the past two years, I have helped with Pee Wee day, which is when we take the even younger kiddos to camp for that Wednesday of the weeklong Esperanza camp. Teen retreat, which I have done for the past three years, is very similar to Camp Esperanza, but it is a lot less physically exhausting and it gives us a chance to really talk to the teenagers. Last year, one of my patients and I discussed a variety of life topics until about three in the morning.
Another camp that I volunteer with is Camp Sol, a bereavement camp for those families who have lost a child due to a medical illness and who still have a child under the age of 18. During the past six camps that I have been a facilitator, a few of our families from the CCBD have attended. This weekend camp is a much-needed break from daily life for these families. It is a place where they can be around others who have gone through the same tragedy that they have which enables them to let down their guard and allows for a deeper process of their emotions.
A variety of other events that I have volunteered with through the CCBD are the CCBD Prom, oncology holiday party, a fiesta at Ronald McDonald House and the Children’s Cancer Fund fashion show.
Heather: How do you feel to be the 500th person to get shaved in the history of the event?
Thomas: When I was told that I would be the 500th person to have my head shaved at this event, I felt honored. I have not told the patient who is shaving my head, but I am sure he is going to be even more excited that he is going to be part of the 500th shavee. It is amazing that 499 individuals before me have taken the fight to pediatric cancer by raising funds and awareness and have provided hope to children fighting cancer. I hope that the next 500 participants occur in half the time.
Heather: What is the most rewarding part of participating in events like this?
Thomas: The most rewarding part of participating in events like this is being able to share these moments with others, especially with our patients. Being able to experience these moments with them outside of the hospital is very important in helping them through their diagnosis and treatment as well as helping them developmentally. Creating positive memories will go a long way for all!
Seeing families come closer together and witnessing the resiliency of these children is amazing. Knowing that I am blessed that my family has not had to endure what I see on a daily basis, I want to do as much as I can to help, whether that is completing my work to the best of my ability, volunteering or raising awareness and/or money for pediatric oncology.
Heather: What are you most looking forward to with your newly shaved head on Saturday?
Thomas: Right now, my hair is pretty thick, so I am excited that it is going to be gone. Once it is all gone, I will definitely need a tan on the top of my head. I am also looking forward to not having to do my hair in the morning (the five minutes or so that it takes). That’s five more minutes I can sleep!