Diagnosis: Retinoblastoma
On Saturday, the 30th of March, little did we know our world would be turned upside down. After Eli’s favorite time of the week on Saturday when he takes swimming lessons he was so eager to race out the door. We set off as we typically do just like a normal day. After Eli’s swimming lesson, we phoned his daddy to update him on how well it went and then it was time to go get daddy’s big boy a check up on his eyes, because over the past few months we had noticed a change in his left eye. After being told by the GP when it was mentioned only a few weeks prior that it was not a worry and that everything was normal with his eyes we weren’t overly concerned but as a few weeks passed my motherly instincts still said something wasn’t right. Eli’s Aunty Mor Mor booked us an appointment at her special picture optometry shop and he waited ever so patiently for his turn. The optometrist had a look into Eli’s eye & noticed straight away how abnormal it was. Within minutes of looking into Eli’s eye the doctor had called Lady Queensland Children’s Hospital in Brisbane to send us straight there as he had fears that there was a tumour in his eye. We raced home, packed a bag and headed down to the hospital. Within a few hours Eli had intense eye checks to try to figure out this crazy thing! We were told to stay the night as the doctors had to run far more intense scans the next day, Sunday, our fears started to kick in as we were starting to learn more about what it could potentially be. Sunday comes quickly and little E doesn’t know any difference about what’s actually going on and is still his happy bubbly self even after roughly 18 hours of fasting. It was time for the big test and for him to be put to sleep. I’d never had to experience something as heart wrenching.
Hours went by which felt like days waiting in the room for the phone call in recovery. When the phone call finally came we got to go see our boy again. The relief we felt is indescribable, but the world of the unknown was still lingering. We soon were allowed to go back to our room where we were met by a specialist team of Oncologists & ophthalmologists there waiting for us. We were hoping to hear the words that everything was going to be okay…. but it wasn’t. They had found a large cancerous tumour behind/in Eli’s left eye and we were told that Eli has a rare Cancer called Retinoblastoma. These are words no parent ever wants to hear. The only cure for our little man was to have his Left eye removed & to possibly pursue chemotherapy after his surgery. Feeling so overwhelmed with emotions and questions thinking why him? Why not us?
Our next step was to find out when the surgery was going to be. Eli’s specialist team Oncologist Dr Wayne Nicholls & ophthalmologists Professor Glen Gole, Dr Jayne Camuglia and Dr Jaclyn White said that within the next 48 hours he would need to have his eye removed as they feared that each 48 hours the tumour could double in size. And then after that our next steps would begin.
The big scary day arrived just two days later on April 1st when our precious little boy would have his left eye taken out to remove the tumour so it couldn’t spread. 9:30 am that morning came quickly and it was time for him to go to the operating theatre. I took him in as Tom & mum (Nanny) waited in the waiting room. Little E wasn’t sure what was going on until it was just us in the room then he wanted daddy to take him for a walk. I watched his tiny body slowly come to rest after being put under anesthetic, the most heartbreaking sight to ever see. Then began the waiting game for Eli to be out of surgery… seconds went by that felt like hours. Four hours waiting by my phone. Tom, mum and I were pacing around like lunatics until I finally get the call E’s in recovery and we could go see him. Ohh the feeling I got when I got to hold my baby after his big operation. Fast forward off to his ward/room and as we went in he was so restless and on lots of pain medication but daddy was right there and quickly snuggled up in bed comforting E. Tom and I never left his side.
The very next day Eli was ready to have his bandages removed. This was one of the most confronting situations that we never dreamed that we would encounter. We weren’t really sure what to expect. Our little hero managed through it all like a champion and much to our surprise it wasn’t as bad as we had feared. Back to the room we go with Eli all snuggled up to nanny hiding beside her with his blanket.
A few hours passed and then little E was back on his feet and wanting to go down to the playground. Off we went where shockingly he was going absolutely crazy dragging Nanny and Daddy all through the playground! Like seriously, who would’ve thought that he just had major surgery and had his eye removed!
One day later we found ourselves on Discharge Day! As we waited all day for Eli’s team of many specialist doctors to give him the all clear to go home we were able to be discharged and left around 4 o’clock that afternoon to head home. We did not expect to be coming home this soon but Eli‘s was doing very well with his recovery and the doctors were happy for us to go home and settle in with our new journey.
Eli did very well at home taking his medication every few hours. We had several upcoming appointments and we waited for other results to come back that would guide our next steps.
We knew that regardless of the test results we knew E would be up for tackling any challenges that tried to get in his way! During this traumatic time, I (Erin) was also 38 weeks pregnant with our daughter (Willow), who entered the world just one week after Eli’s diagnosis. Eli has been so in-love finally having his baby sister here it was a wonderful gift to see him so joyful to meet her.
Four years have passed since his cancer diagnosis and Eli has just celebrated his 6th Birthday! Checked often, Eli is currently doing very well and he is about to receive his 4th prosthetic eye. He loves riding his little motorbike alongside his baby sister and loves being outdoors. Eli continues to be monitored at Queensland Children’s Hospital (QCH) and has shown such strength and resilience with every challenge that has come his way.
We are so very proud of how far he has come and know that the future is bright for our amazing boy.
~Erin Harth
Mother of Eli
