Our daughter, Isla was diagnosed with bilateral heritable Retinoblastoma at 10 weeks of age.
I first mentioned Isla’s eyes to our pediatrician while still in hospital after giving birth. I was worried the way her eyes were tracking seemed irregular and she often looked cross-eyed. I knew it was normal for a newborn to appear cross-eyed, but her eyes seemed to flicker and didn’t track together. I don’t believe the pediatrician actually looked at her eyes at this point, but he reassured me that babies’ eyes are still developing at this stage and it could take some time for them to have more controlled movements and track together, so I didn’t think much more of it.
Not long after returning home from hospital, I started to notice a glow in her right pupil. It was only for a second, only in dim light and at certain angles. To begin with I wasn’t sure if I was seeing things, or if it was just something reflecting on her eye. Her pupil looked a browny-reddish colour and it looked transparent. After a couple of weeks, I started to notice this appearance more often and even in bright daylight.
I mentioned this appearance to our pediatrician, but again was told her eyes were normal. After weeks of googling, I finally found something which mentioned Retinoblastoma. I found pictures that looked exactly like Isla’s eye, pictures that displayed ‘The Glow’. My heart sank.
I made an appointment and saw a GP that day. She saw what I was describing and gave me a referral to a pediatric ophthalmologist. In the meantime, I finally learned about the appearance of the ‘white’ pupil in flash photography. I grabbed our camera and started snapping away with the flash. The pictures taken with a flash looked like even more of the images I had found on Google.
Our pediatrician is very text savvy so I sent him a text to update him on my appointments, along with a photo of Isla’s eye with a flash. As soon as he saw that photo with the glow, everything was fast tracked. We were in his office 1.5 hours later and he arranged an appointment at the Women’s and Children’s Hospital in Adelaide (Australia) the following morning.
That night was our 9th Wedding Anniversary. Our celebrations were quashed by the impending appointment, and diagnosis we knew was coming. We spoiled ourselves with a favourite takeaway after the late pediatrician appointment and tried to enjoy the evening, but I don’t think either of us were thinking much about our wedding anniversary.
We were in the eye clinic at 10am on Friday morning. Isla’s eyes were dilated and examined in the rooms. We then had an ultrasound of her eyes and by midday Isla had been diagnosed with Retinoblastoma. Our baby has cancer.
On Saturday she had an Examination Under Anaesthetic (EUA), MRI, lumbar puncture, bone marrow biopsy and central line insertion. On Monday she received her first round of systemic chemotherapy.
We started our treatment at the Women’s and Children’s Hospital in Adelaide with Dr. Ashwin Mallipatna. We were then transferred to Dr. James Elder at the Royal Children’s Hospital in Melbourne after Ashwin left Adelaide. We have now circled back to the Women’s and Children’s Hospital in Adelaide under the care of Dr. David Sia.
Isla has had a total of
- 57 procedures
- 46 general anaesthetics
- 37 EUAs
- 8 MRIs
- 6 laser treatments
- 4 cryotherapy treatments
- 6 rounds of systemic chemo
- 7 attempts, with 4 successful intra-arterial chemotherapy (IAC) treatments
- 25 flights to Melbourne
She has had a total of 8 tumours and she currently has 0 active tumours.
Isla is now 4 years old and is happy, healthy and thriving. She has no vision in her right eye, but we have managed to keep both of her eyes. She is still undergoing regular surveillance MRI’s and EUA’s at the Women’s and Children’s Hospital. Her eyes have been stable for over two years. Isla attends childcare and preschool and also does swimming lessons. She loves dancing, being outside and playing with her little brother. We definitely count ourselves lucky in that Isla is alive and well, she has great vision in her left eye and she still has the two eyes she was born with.
For more on Isla’s story, feel free to visit my blog at https://alisondavey0.wixsite.com/retinoblastomamum
Thank you to KnowTheGlow for sharing Isla’s story and for all the incredible work that you do!