World Retinoblastoma Awareness Week 12 – 18 May.

Retinoblastoma is a rare childhood cancer that usually affects young children under the age of 3 years.

Unfortunately, it is terminal if not detected early enough as the cancer doubles in size every 48 hours and spreads from one eye to the other eye (or sometimes it’s present in both eyes) then down the optical nerve and into the brain.

Removal of the eye (or both) is required to stop the spread and Chemotherapy also may be required.

MPAQ and Women's Plumbing Alliance member, Sonya Hughes shares her families, and specifically her grandson Eli's, experience with Retinoblastoma: 

Eli's Story

We noticed over a few months every now and again, usually of a night time and standing on a particular angle, we could see what looked like a light or tunnel in Eli’s left pupil.

Over a period of a few months when we would take a photo of Eli with our phones and at night time, we would see that his left eye had a white reflect from the pupil and the right eye would have a red reflect from the pupil. We would think these silly phones and their photos showing this stupid glow in one of his eyes and never did we give it a second thought.

Then we started to notice that his left eye always had a little tear that never seemed to roll down his cheek.

Eli had his 18-month-old needles at 21 months as he seemed to be a little sick or under the weather most of the time. He was sleeping a fair bit and just seemed to want cuddles a lot but nothing over the top to indicate there was a serious condition underlying. So, at the GPs visit, it was raised about the glow in Eli’s left eye and the glow we would see at night and after the GP looked in Eli’s eyes (around 10 weeks ago) the GP said all was fine and ticked his baby medical book that his eyes were fine.

Eli’s mum had a gut instinct that something was not right and took Eli for an eye check-up at our local SpecSavers. It was here that two Optometrists noticed the abnormality of Eli’s left eye and urgently sent Eli to Lady Cilento Brisbane Children’s Hospital for an urgent Ophthalmology appointment.

The next 48 hours

Eli had a team of Oncologists, Two Ophthalmologists / Surgeons, Pathology team, Tissue Bank personnel and Paediatrics specialists plus many more wonderful medical professionals that were involved with Eli’s care.

Saturday 30/04/19

Eli was suspected to have Retinoblastoma in his left eye and admitted straight into hospital.

Sunday 31/04/19

Eli had a serious of blood tests, MRI’s and a lot of poking and probing whilst under antiesthetic. It was confirmed that Eli had Retinoblastoma in his left eye.

As this is so rare, there are only 5 eye surgeons in the world (2 that are here in Australia) that perform this operation and when a patient presents with Retinoblastoma these 5 Surgeons have an online discussion about what they would do or what treatment is best for the patient.

So, it was unanimously agreed that the best chance for survival for Eli was the drastic and quick remove of his left eye before the cancer spreads.

As Eli’s MRI showed that the Retinoblastoma was only present in his left eye and had not spread as yet.

Monday 01/04/19

Eli was taken into theatre where they would perform his Left eye extraction and an exploration of surrounding tissues and areas.

A donor white part of the eye was also put into Eli’s left eye to attach the connective tissues. This will help when the New prosthetic eye will be put in.

Post-Surgery

Eli had not had vision in his left eye for around a year of his life but had managed to meet all his milestones, balances, co-ordination and motor skills with his right eye. He is still the sweet loving little boy that also turned into a big brother on the 13^th April.

We still wait for all the blood and tissue tests to come back which can take up to 6 months. We hope it’s not genetic as we would never want any child to go through this let alone Eli’s little sister.

Eli is scheduled to have another MRI next week and to meet his Prosthesis and measure up for his new special eye that will be made for him.

Eli’s journey will be exhausting for the rest of his life with follow up MRI’s, blood test, New Prosthetic eyes plus many more hospital visits that I have forgotten to mention.

Our advocacy for Eli

As we, like most average people, were totally unaware of any such Cancer or eye cancers let alone it ever happening in our family we want to encourage every parent, grand parent, Aunty, uncle and loved ones to take a photo a few times a week with your Smart phones of your young children.

Please look at their eyes and look for a white reflect. If you see red – that’s good but if you see white – act immediately and get it looked at by medical professionals.

Retinoblastoma – Know the glow.