"The activities that the Children’s Art Project offers are just amazing; all the different things you get to do puts you in another realm. They do everything they possibly can to make sure you still feel like you are not going through as much as you are."
We’re kicking off the summer with products inspired by artwork from Deserare, age 36. When Deserare was a baby, her mother noticed red blood vessels along her gum line as her teeth started to come in. Her parents consulted a pediatrician who referred them to MD Anderson Children's Cancer Hospital. Following multiple tests, Deserare was diagnosed with Arterial Venus Malformation of the left mandible (AVM), an uncommon tumor characterized by irregularly connected arteries and veins that disrupt blood flow and oxygen circulation. While this tumor is typically found in the brain or other areas of the body, Deserare's was located on her lower left jawbone. At the time, MD Anderson was the only institution with the expertise to treat her condition and provide viable options. Deserare did not receive radiation or chemotherapy since these treatments were ineffective for her. Instead, her tumor caused uncontrolled bleeding and infections best managed by drainage procedures.
Despite treatment efforts, Deserare's condition persisted, reaching its peak during her fourth-grade year. Medical professionals had exhausted all possible temporary solutions without finding a permanent one, until a surgeon from Sweden proposed a new procedure. The procedure could not be performed at MD Anderson, so she was scheduled for a morning surgery at Houston Methodist. The surgeon, however, requested that Deserare be transferred the night before the procedure. Unfortunately, she suffered a severe bleeding episode prior to the surgery. Medical experts later noted that if they had postponed the surgery as originally planned, Deserare's prognosis might have been worse due to significant blood loss. After the operation, she spent three days in intensive care before returning to MD Anderson where she remained for two and a half months. Since the procedure, Deserare visits MD Anderson for annual check-ups and has not experienced any further bleeding episodes. As a child, Deserare was unable to participate in activities like contact sports or regular playtime, and even her teachers sometimes prevented her from engaging in recess due to safety concerns. While she recognizes the necessity of these measures in retrospect, the limitations were distressing for a young child. On her 18th visit to the doctor, she was finally given a clean bill of health and can live her life without restrictions. Although her condition will always be present, it is now under control.
During her extended stays in the hospital, Deserare discovered and participated in the Children's Art Project. Although initially uninterested in the art classes, she began participating frequently due to her fondness for drawing and doodling. In hindsight, it was the relationships she formed with staff and volunteers that she most enjoyed. She passed on her artistic passion to her daughter who shares her love of art. Her daughter requests sketchbooks and fancy pens for Christmas and birthdays. Deserare describes the Children's Art Project as providing a remarkable range of activities, creating an immersive experience that helps alleviate some of the challenges of being in the hospital. “The activities that the Children’s Art Project offers are just amazing; all the different things you get to do puts you in another realm. They do everything they possibly can to make sure you still feel like you are not going through as much as you are,” she says.
Deserare lives in Austin, TX where she works at a technology-based company that facilitates clinical trials and sponsors. Her role involves collaborating with various sponsors of clinical trials to link patients with appropriate opportunities. Although not her original career aspiration, she takes pride in her work and believes she is making a meaningful contribution to society. In addition to a rewarding career, she is busy raising her 13-year-old daughter, a volleyball player. Deserare also has a passion for photography. Looking to the future, her ambition is to return to a hospital setting and work with children to provide assistance and support to those in need.
This year marks the 50th anniversary of Children's Art Project. Each month, we’ll provide updates, promote survivorship, and share uplifting stories about what makes Children’s Art Project special.