The day had finally come where we would hopefully get some answers and clear up any concerns we had about Sam’s vision by speaking to a Paediatric Ophthalmologist.
We sat in the waiting room, uneasy with anticipation of what we were about to find out about our 12 week old. Were we overreacting? Were we being overprotective first time parents? The Doctor came out of her consulting room and called our name to go in.
She asked us a number of questions to get a bit of background on Sam and then put some eye drops in to dilate his pupils. After about half an hour, which is the time it took for the drops to work, she had a good look into his eyes and very swiftly and coldly delivered us the terrible news that no parent should have to hear about their newborn, or any child for that matter. She said, “His retinas are detached, there’s only a slight chance that he’ll ever see, and could possibly have cancer. If it is cancer then there’s a chance that both eyes will have to come out.”
BAM! BAM! It was delivered to us like a double barrel shotgun and I couldn’t believe what I was hearing. How could a baby be born with cancer? I’d never heard of such a thing. It was a disease with a long name beginning with ‘R’. It felt surreal and I couldn’t wrap my head around the news. I was speechless and numb.
The Doctor then explained to us the next course of action and how we would be referred to the Royal Children’s Hospital for further testing and diagnosis. The remainder of what she said was all a blur as I tried to come to terms with what we had just been told.
We left that appointment in silence and walked up and down the street with Sam in his pram painting a bleak picture of what lay ahead for our young family. Until we knew any more, we could only think of the negatives. These words kept going around and around in my head…”He’s going to be blind and could have cancer”. It was like a bad dream which I was hoping I would wake up from very soon. But it wasn’t a dream, this was our reality and we had to deal with it head on.
When we got home that afternoon, I was still in shock as was Lisa, and we didn’t know how we were going to tell our family. This was our first child and their first grandchild on both sides, an event which came with so much love and celebration. We drew strength from each other and plucked up the courage to make the call. We told them as much as we knew at the time and said that we would have to wait till we saw the specialists at the Royal Children’s Hospital. We tried to remain as positive as possible around family and friends.
Within 2 days we were at the Children’s Hospital speaking to an Orthoptist and a couple of Ophthalmologists. They told us that they would check Sam’s eyes again under a general anaesthetic and if it was tumours as had been suspected, they would have to do a lumbar puncture to see if the cancer had spread anywhere else. We would know if they had done a lumbar puncture because there would be a Band-Aid on his back.
We had to hand him over to the specialists to put him under and trust that they would look after him. It felt like he was in there for hours and Lisa and I found it very difficult to wait for him to come out. Eventually he was wheeled into the recovery area where he slowly came to.
I remember the first thing I did was lift up his top to see if he had a Band-Aid on his back. As I raised it my heart sank…it was there as clear as day. Lisa recalls the first words from my mouth were, “That’s just killed me”. It had been confirmed that he had cancer and we immediately thought his eyes would have to be removed.
We were taken into a private room of the Level 2 Day Surgery Ward and given time to let it sink in. We both sobbed uncontrollably and held each other tight, doing our best to console each other. This was devastating news and we didn’t know what the future held for him.
We ended up staying at the hospital for most of the day and later that afternoon one of the Ophthalmologists came into the room and spoke to us about the disease and what options were available to us. He said that it was called Retinoblastoma and was a rare childhood cancer that affected the developing retina of the eye in children up to 5 years of age. In most cases it was hereditary and passed down from the parents, but in some instances it was a spontaneous genetic mutation. It was more common in one eye (unilateral), but Sam was affected in both eyes (bilateral).
After we had everything explained to us, it was suggested that we start chemotherapy treatment as soon as possible to give him a fighting chance. We were thrust into a world of hospitals and medical jargon and none the wiser, so we had to go along with the recommendations of the specialists that dealt with this on a daily basis. We were asked to come back within 8 days for a ‘Hickman Line’ to be inserted into his chest for the administration of the chemotherapy drugs. It was all very daunting…