Diagnosis: Retinoblastoma
We at Know theGlow feel that one of the best gifts to come from TikTok is the opportunity for wonderful Glow families to bravely share their journeys while simultaneously building awareness about what to watch for in flash photography. The fact that TikTok is providing an avenue not only for awareness but for beautifully presenting these precious children and their amazing families is the epitome of what KTG is all about…children helping to reach out to find other children…all through sharing their beautiful faces and glowing eyes alongside a few words that tell the story so uniquely and perfectly.
Recently, KTG had the chance to catch up with the Koch family from Illinois who have done just this. They have been posting about the journey of their daughter Freya who is still in the midst of her Glow journey surrounded by an amazing support team guiding her through!
The family’s journey started one evening back in March of 2022. Excited new parents, Emily and Wally Koch, had purchased an infant monitor that has night vision which ironically should show both eyes glowing if she was awake but in a dark setting. One night they noticed that though she was awake one of their daughter Freya’s eyes was “not” glowing white in the reflection of the infant camera monitor. They thought this was odd as the other eye glowed clearly but they knew she was scheduled for her two month checkup in a few days and planned to bring it up to the pediatrician then. At the checkup, before the anxious new parents could even bring up their concern, the doctor took a look in her eyes using the ophthalmoscope and pulled immediately back. Before Emily and Wally could even share about what they’d seen the doctor said “I think there’s something going on here…let’s refer you to a pediatric ophthalmologist nearby.”
The pediatrician referred them to the ophthalmologist who dilated Freya’s eye. After examination the doctor believed he was seeing a cataract and referred her for surgery. However, something didn’t feel right about this diagnosis to Emily and Wally. That evening, when laying Freya into her crib, Emily could see something shining in the pupil! The dim light allowed her to visually see something inside Freya’s eye. She contacted the doctor saying that she thought something more was wrong and asked to get a referral for a second opinion.
Fortunately Emily reached out directly to Lurie Children’s Hospital, a division of Northwestern Medicine in Chicago. After sharing with the intake team at Lurie’s what she and her husband were seeing, Emily was impressed with how responsive they were. The intake nurse contacted their chief ophthalmologist who requested that the family come in immediately!
Emily and Wally drove the three hours to Lurie’s for their first appointment. An ultrasound of the eye was performed. Afterward, the doctor met with Wally and Emily and started off by telling them that this was likely going to be a different conversation than what they might be expecting. The results of the ultrasound showed a large mass in Freya’s eye which they believed to be retinoblastoma. Never having heard of retinoblastoma, but knowing that blastoma often meant cancer, the young parents were alert and alarmed. Dr. Bohnsack went on to say that she was referring them immediately to the care of Dr. Hawke Yoon, an ocular oncologist working at Lurie’s to discuss next steps.
Dr. Yoon would soon become a lifeline and an amazingly attentive and available resource for the family. He explained that the Stage E tumor in Freya’s eye was occupying most of the globe of her eye. It was doubtful that she had ever had any vision in that eye therefore retaining the eye would be purely for cosmetic reasons. This comment made sense to Emily who had noticed when nursing Freya that it was as if her one eye would look “right through her”! Wally and Emily were grateful to hear the various options for Freya’s care, but it took only a second for them to make the decision to remove the eye, a process known as enucleation. Saving Freya’s life was the top priority…saving her eye or her vision in that eye were distant concerns. They completed an MRI and EUA to confirm that Freya had unilateral RB with a Stage E tumor that was growing quickly.
On March 15th…just a week after Freya’s two month checkup…her eye was removed. Freya managed through the surgery beautifully. While she had been a bit of a cranky infant prior to the enucleation, Freya had a different demeanor after. She was content and happy and bounced back beautifully post enucleation!
Freya was checked monthly and it was only a few months later when Dr. Yoon discovered another small mass in her remaining eye. Small but concerning, the mass was consistent with retinoblastoma so laser therapy began in May of that year and continued for five months with her last laser taking place in October of 2022. Thankfully, a repeat MRI performed in March of 2023 showed that the tumor had responded perfectly and had not changed in size. Freya will receive an MRI every six months to watch her pineal gland. Having a team of doctors watching her so closely is a huge comfort to the Koch family. Each month the Koch family makes the trek 3 hours to Chicago and back after completing their EUA. Freya has been an incredibly happy little one through it all and keeps them smiling through it all! As a way to document their journey and to share awareness about the glow and how it can be missed or misdiagnosed, Emily began creating video slideshows for TikTok! Emily’s first TikTok had more than 500,000 views! Beautiful Freya captured the hearts and attention of so many and Emily’s captions shared quick bits of information about watching for the Glow and other potential symptoms of childhood blindness!
KTG Co-founder, Megan Webber, was delighted to see how brilliantly Emily captured the essence of the KTG mission in her videos. She is able to build awareness about Freya’s battle with RB, educate others about leukocoria “the Glow” and also deliver the importance of following your parent’s intuition and advocating for your child. Emily’s videos can be viewed on her TikTok channel @emilyseegers36 (https://www.tiktok.com/@emilyseegers36/video/7107086345377615150)!
In addition to the team at Lurie’s Children’s Hospital, the family and friends surrounding them in Illinois, we at KTG hope you will help us keep Freya’s family in your thoughts as they travel down this road of recovery! While she has been through quite a lot already in her first sixteen months, Freya is delightfully bubbly and cheerfully active! Watching the strength,determination and the love this family has for each other is heartwarming. Support for the family can be provided through their gofundme here (https://www.gofundme.com/f/eye-support-freya)!
Through TikTok, Freya’s story is shining a light on awareness and Emily and Wally are most anxious to find more ways to inform the world about the importance of watching for the glow. Seeing how the family is already using their videos to help educate parents and knowing that their videos will help find and save other children in time is truly inspirational. Freya was aptly named as Freya means “a noble lady” and this little lady is already wearing the name well!
