Diagnosis: Retinoblastoma
My name is Jonathan Smith. My family and I live in Brisbane, Australia. I am the proud father of a Retinoblastoma warrior – Theadora. I am honored to be invited by “Know the Glow” to share our story, especially because the information provided by Know the Glow is what led me to push to get what I saw addressed and quite possibly saved Thea’s life!
It was dusk and my daughter and I were playing a game of pat-a-cake. As Thea turned her head, I caught the glimpse of something in her right eye. I only saw it for a split second and at first I thought it was just a reflection of the light that was behind me. I was curious and took a closer look. It was quite difficult to see but when the light and angle was just right, I saw it once again. To me, it looked like a white bubble-shaped mass inside her pupil. After a little coaching on the right angle, I managed to show my wife (Maree). We both thought it was strange but were not aware of the Glow and didn’t think much more about it.
Later that night, I couldn’t shake the feeling that something wasn’t right. I got on Google and searched the phrase “white mass inside pupil.” This one phrase would quickly change all of our lives. I was led to the “Know the Glow” website. This site was full of very helpful information about the Glow (leukocoria). It listed all of the conditions that could present with the Glow. When I saw that this Glow could mean cancer, my heart sank. My intuition was telling me that my family and I were in for a rollercoaster ride.
Out came the phone again and this time the flash was on. That’s when I saw it, the Glow. I was in shock. I was terrified. I was determined to find answers.
My happy, healthy (or so I thought) little girl was living her best life. She wasn’t sick, complaining about anything, and as far as we know she was 100% healthy. But after seeing this Glow, I knew she wasn’t. We called her pediatrician and made the first available appointment for the following day.
At the appointment we explained what we were noticing. Honestly, I felt embarrassed to say “I Googled my daughter’s symptoms and I think she may have Retinoblastoma”, but I am so glad I did! The doctor did the red eye reflex test, and said “I can see a red eye in that eye, it’s faint but it’s there.” She was looking laterally (towards the outside of her eye). I was not comfortable with this assessment and asked the doctor to look again. I told her how I noticed the Glow inside the eye. I described the certain angle and asked her to have another look just to be safe. The doctor rolled her eyes but accommodated me. As soon as she looked at the angle I suggested, I saw her face drop. She saw it. A clear, white Glow.
Concerned, she called a pediatric ophthalmologist in Brisbane City and explained her findings. We were told to go immediately there to see this specialist.
At the ophthalmologist appointment, I spoke with the doctor and I explained everything. The ophthalmologist decided to have some images taken of her retina. They did her left eye, everything looked normal. They then did her right eye. I knew right away without a doubt that I was looking at Retinoblastoma. My daughter had cancer.
We we told that they could see a growth on Thea’s retina. She told me that her suspicion was Retinoblastoma (RB). Even though I already knew, these words were heavy. She asked me to wait while she organized our next steps with the local children’s hospital.
The pediatric ophthalmologist explained that we needed to go immediately to the emergency department (ED) at the children’s hospital. She had arranged for the ophthalmology and oncology teams to be waiting for our arrival. And as soon as we arrived, we were taken straight out the back, fast tracked up to the ophthalmology ward. The doctors were all amazing. They did many tests and assessments. But due to the late hour, we were asked to return the next morning for an exam under anesthesia (EUA) to finalize Thea’s diagnosis.
This EUA confirmed the RB diagnosis and afterwards everything moved very fast. The medical team shared Thea’s results with the Australian Retinoblastoma Fellowship for consultation. Because RB is so rare, all of Australia’s specialists share information and get involved to come up with the best treatment plan for each case. Thea’s case was complex in that the tumor was blocking the optic nerve. They couldn’t tell with certainty if it had spread to the optic nerve and, because of its size and location, were unable to see the whole tumor. Removing the tumor was not possible at that time.
After deliberation, the Foundation presented us with two options.
1 – IAC (intra-arterial chemotherapy) With IAC they would go through the artery in her groin up to her eye and inject chemo directly into the tumor. The hope was that it would shrink the tumor enough that they could then safely extract it.
2 – Enucleation (surgical removal of the eye)
This decision was the hardest we ever had to make. After much discussion, Maree and I decided on Enucleation. We felt there were too many risks involved with IAC, with no guarantee the procedure would be successful in shrinking or even stopping the growth. We were both of the mind set to ‘preserve life over sight’. When faced with the possibility of losing our child, losing one part seemed not so difficult.
Thea’s cancer was removed the following Thursday. This was just a week and 1/2 since we first noticed her Glow.
After Thea’s eye was removed, we still were not out of the woods. The tumor was gone, but the cancer may have spread through her body into her blood stream or into her brain through the optic nerve. After about 4 months all the tests came back that Thea was free and clear, no chemo required. We were thrilled to learn that her RB was spontaneous and unilateral.
Thea will have an EUA every 3 months for the next couple of years to make sure that her left eye doesn’t develop any signs of RB. During these exams they will also check her implant and eye socket to make sure everything is healing properly. Eventually they will take molds when new prostheses are required.
We will forever be grateful for the wonderful care Thea has received at Queensland Childrens Hospital. Both her Ophthalmology team lead by Dr. Jaclyn White and her oncology team lead by Dr. Tim Hassall have been amazing. We have complete trust in their abilities, advice and expertise.
Theadora is adjusting better than we ever could have imagined! Throughout this whole process she has been and absolute warrior, handling everything better than anyone around her! Her strength gave us the strength we needed to get through the long, scary days.
Thea is back to living her best life! She loves to sing and dance with her sisters. She just started Kindergarten and is loving every minute. She was always outgoing and confident, a saucy little sausage! Today, she continues to amaze us with her vibrant spirit and cheeky personality.
Maree and I found ourselves going back through old pictures, blaming ourselves almost for missing the Glow. This was not the case. No pictures showed any evidence of the Glow. We know very well that the Glow I noticed just looking at Thea that one night playing pat-a-cake unquestionably saved her life.
Please look at your photos and the photos of your friend’s children for any signs of the Glow. Pay attention to any other sign that something may be wrong with their vision. Trusting your instincts and having the courage to speak up if something doesn’t feel right could save a child’s vision and possibly their life!
