Evie’s Glow Story

Diagnosis: Retinoblastoma

January 11th, 2023 began just like any other day in our home. I was feeding my 11 month old daughter, Evie, lunch while she was watching her favorite presenter, ‘Miss Rachel’.   But soon everything in our world changed.  

I noticed something different in Evie’s right eye.  There was what looked like a haze or a cloudy smear across her pupil. I initially thought that maybe she rubbed food in her eye (she used to always rub her eye). I cleaned around her face and eyelid but the “glaze” wouldn’t go away. I decided to take a photo on my phone with a flash on to see if I could better see what it was.  To my surprise, a clear white glow appeared in the photo, only in her right eye. I thought it was strange and showed my mum who reassured me that it could just be the reflection of my flash.

But inside I felt it was more than that.  I took more photos from different angles, and it was still there. I took a photo in a different room of Evie, with different lighting and it still showed up. I used my mum’s phone as well as I thought it must be my camera but the same thing happened on my mum’s phone. I went straight to Google to search for answers. Here I learned that this glow I was noticing could be a sign of Retinoblastoma, cancer of the eye.  I was shocked and panicked.  

I then calmed myself realizing that a Google search often shows the worst thing it could possibly be. I knew something was wrong, but clung to the hope that the glow was signaling something else.  I rang Evie’s doctor straight away and explained what I was noticing.  They gave me an appointment within the next hour! 

Once in the office, Evie’s doctor performed a red reflex test (shining a light on Evie’s eye). The right eye did not show a red reflex.  Her Doctor was very concerned and sent an urgent referral to the Ophthalmology Department at St. Helier Hospital here in the UK. 

We had to wait two days for this appointment.  I spent the time in tears and endlessly searching to see if there was something else it could be other than cancer to make me feel better.  The worry and waiting was incredibly difficult. 

Once at St Helier Hospital, the consultant put eyedrops in Evie’s eye and performed a thorough eye exam.  They also did an ultrasound on her eye.  The ultrasound immediately showed a mass with calcium deposits. Our hearts sank as this told us what we knew already in our hearts – Evie had Retinoblastoma. 

St. Helier then sent a referral to Royal London Hospital and one week later we were seen.  Here they did an EUA (examination under anesthesia) to have a clear look at the eye and give a proper diagnosis. The consultants, the specialist nurses, the whole Rb team came to our room to confirm the RB diagnosis.  Evie had Unilateral Grade D Retinoblastoma in her right eye. I had my mum and partner (Evie’s Dad) there with me.  We all felt numb. The next days were very difficult.  I couldn’t eat, I couldn’t sleep. I was endlessly searching for information on ways to treat Retinoblastoma, the success rate, the survival rate; everything.

Soon Evie’s team at Royal London Hospital discussed treatment options with us.  Enucleation (removal) of the eye was the first option.  We discussed this together and decided we wanted to do whatever we could to save Evie’s eye.  We were told that chemotherapy could be another path.  After discussing Evie’s diagnosis with Great Ormond Street Hospital (GOSH), we decided to attack Evie’s cancer with intra-arterial chemotherapy (IAC).

Evie was given 3 courses of IAC in January, February and March of 2023. After her first IAC treatment, the tumor reacted positively and shrunk a large amount. After the second IAC her tumor was stable.  She still finished her third course to be sure the cancer was completely inactive. 

Despite the difficult process, Evie was amazing throughout her treatment.  There were ups and downs along the way.  Every time she was given IAC she needed to be put under anesthetic for two hours.  Once the procedure was done, she then had to lay flat for 4 hours applying pressure to her femur artery to keep the catheter wound closed. She was sick the day of each IAC round but recovered quickly by the next day. 

Evie was closely monitored in the following weeks.  Unfortunately, an EUA in May showed Evie had two tumors growing in her affected eye from seeding. Once again, we were presented with the two options from GOSH of enucleation or IAC.  Once again, we decided to administer 3 rounds of IAC.

Evie had rounds of IAC in June, July and August each with a higher dose of chemotherapy drugs than the previous time. Her tumor was again stable after her first course but we decided it would be best to continue the three courses just to make sure it remained that way.  

After completion her tumor was stable and her retina reattached, there were no signs of seeding.  Since then, she has remained stable. We have also learned through genetic testing that Evie does not have the genetic form of RB, her cancer is sporadic and unilateral.  Evie is now checked every 10 – 12 weeks.  

Despite all she has been through this past year, Evie is doing great!  She is happy and very active.  She loves climbing, playing in the sand and especially loves swimming!  Evie is a huge animal lover – the ducks and birds at the park and especially her Grandmother’s dog Duke and cat Laz.  Her favorite TV shows are Peppa Pig, CoCo Melon, and CBeebies. She will turn two in February.  

There are a few, small changes in Evie.  She has become a bit apprehensive of strangers since her ordeal, both adults and children.  We are working on this by taking her out to soft plays or around friends and family who have children. 

Even though this past year has been very difficult and challenging in so many ways, it is not lost on me how blessed we have been.  There is so much to be grateful for.  I am so very grateful that I noticed the glow (leukocoria) in Evie’s eye on that very typical day last January.  I am very grateful I listened to my maternal instinct that this was a sign of something more and searched for answers.  I am extremely grateful for the excellent care Evie received under the entire Retinoblastoma Team at Royal London Hospital, including the medical team , administration, nurses, support, play team and the doctors.   And finally, we have been so blessed to have received the services of Childhood Eye Cancer Trust (CHECT).  Our contact there, Lena, was always there with calls and texts offering support.  I cannot recommend and thank the services offered through CHECT enough.

I am well aware of how important early diagnosis is with any of the conditions that can present with the Glow.  I realize that our outcome could have been much different had we not noticed and acted.  I hope that by sharing my story I will educate others about the Glow and help another family bring their child to the care they need in a more timely manner.