Diagnosis: Retinoblastoma
At age 19, Katie Peller is creating the kind of platform on her instagram page (@katies_rb) that she wished she had growing up as a Retinoblastoma (RB) survivor. She is driven to build awareness about RB and the importance of eye health and highlight what life is like for a young person with a prosthetic eye. Her page is refreshing, inspiring and informative. It is unique in its approach to sharing resources, factual details and life with monocular vision. The page focuses on educational awareness while being engaging and interactive. This interactive element not only benefits the follower but also provides learning opportunities for Katie. Focusing on her follower’s feedback helps direct her in content development, showing a page of growth and reflection. Katie is on a mission to change the platform of how social media is used to help others and Know the Glow (KTG) couldn’t be more excited to share her story and vision!
Katie’s inspiration was her own unique experience as an RB survivor. When Katie was eight years old, she said a strange floater appeared disturbing the vision in her right eye. She described it as a dark spot that floated aimlessly and didn’t go away. Her parents luckily reacted quickly by making an appointment at the local hospital. During Katie’s appointment, it was clear that they needed further investigation and verification of what was causing Katie’s present vision problem. She was referred to Royal London Hospital and endured a series of procedures while Doctors attempted to seek answers for Katie and her family. One week later, doctors confirmed with Katie’s family that she had Retinoblastoma (RB), retina cancer.
What makes Katie’s case of RB unique is that, statically, RB is typically diagnosed before the age of five and the fact that she was eight makes her case rather rare according to the medical community. Additionally baffling is that the only sign she had of RB was from the strange spot in her vision. They believed that the floater identified by Katie resulted from a broken blood vessel likely caused by the tumor. Upon further investigation, the medical team revealed that the tumor was so large it was impossible to save her eye. When discussing this part of the story with Megan and Jo-Anne from KTG, Katie said that this outcome was a blessing in disguise. Knowing that medical intervention could not save her eye made it easier for her family to make the difficult decision to enucleate. Katie believes knowing this was the only option for her has helped her accept life with a prosthetic eye.
Just one week after her RB confirmation Katie went to Royal London Hospital for enucleation. The day is still remembered vividly by Katie, who said, “I wasn’t afraid of removing my eye; I was more afraid that I wouldn’t wake up from surgery.” She reflects on that fear now, saying how irrational it was but understanding how her eight-year-old self would have dealt with this huge medical situation. She credits her parents during this time with helping her adjust to her diagnosis and surgery with empowerment. They shifted her perspective from a lack of control to a sense of autonomy, reflecting, “I knew that I couldn’t have changed the outcome, and I had to face my diagnoses and surgery and move forward with life”. Katie says this perspective has been the cement that anchors her against any challenge life presents, and this resilience helped her adjust to her new circumstances and continues to motivate her today.
Adjusting back to life after surgery was more manageable than initially anticipated. She had complications with the eye drops, but life resumed once this was identified and resolved. Her classroom teacher, at the time, made extra attempts to ensure that she flowed back into school without a hiccup. Everyone was very supportive and made a difference in her recovery. The only problem that little Katie faced at the time was not being able to continue swimming, which was a big part of her life. When the doctors finally gave her the “ok” to return to swimming, Katie remembered how ecstatic she was. Her family captured the moment in a photograph, preserving forever as a reminder that life was moving forward.
In the years that have passed, Katie has developed into an intelligent young person determined to make a difference in the world. As a younger teen, she became involved in the organization CHECT in the UK. This charity supports those affected by RB through research funding, awareness, family support, community events and policy. Being a part of this organization has instilled in Katie the value of community and connection with others who share similar challenges and experiences. Her volunteer involvement with CheckUk eventually led to her help manage the teenager account CHECT TYA (@chect_tya), a new website for teens and young adults with RB. Katie discovered that she enjoyed the creativity and educational value of this involvement. Inspired, she created her own account to educate the public and share her perspective through a youth’s experience, something she says is lacking on many platforms (@katies_rb). Katie also hopes to create a community of followers that fosters connection, awareness and growth. She is trying to shift the paradigm for a young RB survivor and a prosthetic eye wearer to that of empowerment. We can’t wait to see how her vision will unfold as she continues to explore new and creative ways of sharing her experiences.
When Katie isn’t creating content for her social media pages, she is having fun with friends, baking and practicing her violin, her true passion. So what is next for Katie? She excitedly shared with KTG that she has received acceptance letters from the universities she recently applied to. When asked what she plans to study, she quickly and shyly replied, “I think I may go into medicine, perhaps ophthalmology.” What a fitting occupation for this brave and talented young lady. We couldn’t be more excited for the bright future that awaits her and we know that with her determined personality, nothing will get in her way!
