Meg McQuarrie, Founder and Executive Director of the nonprofit organization the Elixir Fund, wanted to find a way to provide patients with cancer the kinds of love and support that her brother Kevin received during his treatment for testicular cancer. Borrowing the name from Kevin’s insistence that his treatments should not be called chemotherapy, the organization was created to carry forth his vision. CONQUER: the patient voice magazine spoke with Meg to learn about her brother, the work of the Elixir Fund, and how it benefits patients and their caregivers.
Please share with us some background information about the Elixir Fund. Our readers would love to hear the story of how it came about, and a bit more about the mission and vision of the organization.
The Elixir Fund is inspired by my brother, Kevin McQuarrie, and his life-affirming approach to cancer treatment. Kevin was diagnosed at the age of 36 with advanced testicular cancer. By the time he was diagnosed, the cancer had spread to his bones and his liver. He was given less than a month to live.
Kevin was a massage therapist, and he had clients who had been through cancer treatment. In his experience, they were sick and suffering. He had decided that if he ever had cancer, he would let fate decide his course rather than suffer through treatment. However, when he was diagnosed and family and friends rallied around him, Kevin realized that although he was okay with the idea of dying, no one was going with him. So, he decided to try treatment.
Although Kevin chose to move forward with chemotherapy, it still carried a negative connotation for him. To give it a more positive spin, he decided to think of it as his “elixir”—a magical potion to cure all illnesses. To further support this approach, he insisted that everyone around him—family, friends, doctors, and nurses—refer to it that way as well. Before his first elixir treatment, Kevin’s best friend sent 2 dozen t-shirts with the words life, love, light, and healing wrapped around the word elixir. Kevin wore the t-shirt on the first day of treatment, and so did his family, friends, and his doctor. When the nurses came in to say, “we have your chemotherapy,” he would gently say, “you mean my elixir.” That was the beginning.
As it turned out, Kevin did not suffer as he had expected. Kevin was rarely sick. He maintained an incredibly positive outlook and lived a full and rich life, despite almost 2 years of treatment that included multiple rounds of chemotherapy, stem-cell treatment, gamma-knife radiation, and radiation on his pelvis, spine, and head. He attributed this to the family and friends who supported his positive outlook and provided so many comfort items, such as pictures for his hospital room, a comfortable blanket, a folding reclining chair that he could take to the hospital with him, a portable DVD player and funny movies, a Netflix subscription, food from his favorite restaurants, countless hours of foot massages, wonderful cards, and the list goes on.
Kevin received treatments at a hospital in downtown Los Angeles, California, where the paint was peeling off the walls, and at City of Hope, a premier research hospital that he referred to as the “Disneyland of Cancer” because of its fountain and beautiful gardens. Despite the contrast of amenities between the 2 hospitals, Kevin only needed to look around to see how lucky he was to have a strong support network. Not everyone had that. Kevin firmly believed that his network mirrored his positive approach and provided him many creature comforts that made a big difference in his outlook. It allowed him to go out dancing between treatments, and even after a bone marrow biopsy. He wanted to find a way to pay forward all the kindness that he received and to ease the cancer treatment experience for others. We often sat in waiting rooms talking about creating the Elixir Fund to do just that.
Unfortunately, although Kevin’s cancer was very responsive to treatment, it kept coming back. It was apparent that he was not going to get through it. We, his family and friends, were so grateful for all the quality time that we had with him in his last years. We decided to follow through with the creation of the Elixir Fund.
The mission of the Elixir Fund is to provide comfort and support to patients with cancer and their caregivers so that they may live a full and rich life during treatment and beyond. Our hope is that by giving people a break from thinking about cancer, whether for 5 minutes of meditation, 2 hours of a funny movie, or a multi-week support program, they will have an easier time with treatment, as well as with transitioning to life after treatment.
How does the Elixir Fund work with hospitals and treatment centers?
Over the years, we have worked with hospitals and treatment centers in a variety of ways. Typically, a hospital or treatment center has a wish list of items or services, and we work with them to make their list a reality. An example of the programs we have helped to develop and fund includes “Movies and Music,” to which we donated DVD players, DVDs, and CDs. We also sponsored musicians to play in the hospital. “High Tea” allowed the staff to bring afternoon tea and snacks to patients in their rooms. “Mini Makeover Days” included hand and foot massages, makeup, and manicures for patients and caregivers. We also funded activity kits for children who might face unexpected delays when joining their parents for radiation treatment.
Does the Elixir Fund have patient navigators within the organization who help patients and caregivers navigate through the complex cancer care system?
The Elixir Fund is a small organization with 1 full-time staff member, which is me, and a very active board of directors. I am certified as a patient navigator, and I help patients and caregivers nationwide to identify and access support services in their local areas.
What steps do you take to connect patients and their caregivers with cancer programs and/or cancer support services?
Typically, I receive an e-mail or a phone call from a patient or a caregiver who has found our organization online. Sometimes I receive a referral from a colleague. I do the legwork and the research for support services that may be available.
Sometimes we receive a request for something that may be difficult to locate through another source, but that our organization can fulfill. So, I also utilize our network for support. For example, we received a request from a woman whose husband was at home on hospice. She was looking for a baby monitor so she could hear him if he needed help. We were able to get one to her that same day, thanks to our network.
Can you discuss the Elixir Fund Registry and explain how CONQUER magazine readers may benefit from this service?
The Elixir Fund Registry is a way for those impacted by cancer, or really anyone with a care need, to empower their support network. Like a bridal or gift registry, the registrant creates a list of their support needs, including meals, transportation, housekeeping services, childcare, pet care, and massage. The sky is the limit. What they receive are gift certificates that help to fulfill those needs. Our initial vision for this service was that the gift certificates would be purchased directly through our site. However, when the COVID-19 pandemic hit, and businesses had to shut down or change how they operated, we realized that the way our system was designed was not going to be as effective. So, like many non-profit organizations today, we are in the process of shifting and redesigning the service. Our new design will offer a way for patients and caregivers to register for gift certificates, as well as for the delivery of specific products. We do not have a firm rollout date at this time, but we are hopeful that we will be up and running by the fall.
Is there a way for CONQUER magazine readers can help?
Once we are up and running, we would like to get the word out about our services. CONQUER magazine readers can help by utilizing the service and sharing it with others.
How has the COVID-19 pandemic impacted your organization?
The COVID-19 pandemic has affected our organization in that we need to rethink how we deliver programs and the best way to do so. We were already in the process of developing a survivorship series. That now needs to be designed so that it can be delivered in person as well as virtually. We are also working cooperatively with hospitals to help them move some of their programs online as well. We participated in the recent #GivingTuesday movement and held a fundraiser to provide small emergency grants to patients and caregivers who may have unexpected financial needs because of the COVID-19 crisis. We have been able to help 21 families through these grants.
If you or someone you know would like to help with the work of the Elixir Fund, or if you know someone who would benefit from its services, reach out to the organization on its website, ElixirFund.org.