Author: Jim Valavanis

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…

Sam came into this world on Friday 30^th August 2002 after a very difficult delivery. It all started when the Nurse manually broke Lisa’s waters and gave her Oxytocin to speed up the labour. The pain for her was extremely intense from the outset and she had to endure this for the next 12 hours or so.

He got stuck in the birth canal and the Obstetrician had to intervene and assist the process using forceps and vacuum extraction, which looked barbaric to a first time father…and so unnatural! We were told afterwards that his heart rate had slowed down and they were concerned at the time, so wanted to get him out before there were any complications.

When Sam was eventually delivered, we were so relieved and thankful to have a baby boy in our lives. We didn’t want to know the sex of our first child prior to then but had chosen a name either way. He let out a cry, was cleaned up by the medical team and handed to Lisa all black and blue from the ordeal. He had a cut and big bruise on his forehead from the forceps but was alive and well.

I was given the opportunity to cut the umbilical cord, which would separate him from Lisa and give him his own identity. He was so tiny and resting comfortably, for the time being.

We were all taken back to Lisa’s private room at the hospital and left alone together as a family for the very first time. It was such a special moment and I couldn’t help but think ahead to all the times that we would share together, such as going to the park, riding bikes, kicking balls and generally having fun. I had looked forward to becoming a father for a very long time and it was now a reality.

Lisa stayed in hospital for six days, which allowed her to bond with Sam and also get some advice from the Nursing staff as a first time mum. They showed her how to breastfeed, change nappies, wrap him up tightly for sleeping and bathe him. Little did we know at the time, but he would have been in pain and had a thumping headache from being wrenched out during the delivery. Looking back now, he would only sleep on one side and has a flat head to prove it! His spine would have been out of alignment and thus uncomfortable for him to turn his neck the other way.

The Paediatrician would come around for their daily check-up and answer any questions that we might have. Being a private hospital we had a double bed in the room and I was fortunate enough to stay there for the whole time to experience it all. He said that everything was normal according to their standard testing procedures and was happy to discharge us. We took their word and were on our way.

We couldn’t wait to get home with our new bundle of joy. Our lives would never be the same, in a good way, because we had a new addition to the family that we could create many memorable moments with and have a positive influence over in some way. The nursery had been ready and waiting for months for Sam to arrive and it felt so good to finally have him in there.

I remember back to that time and how we would listen out for any little sound or movement and rush into his room like a flash to see if he was alright. As first time parents you tend to overdo it, but once you have a second or third child you lighten up! We would watch him sleeping so peacefully, in amongst the crying, pooing and vomiting, and would be thankful that he came into our lives.

Lisa joined a mother’s group at the local Maternal & Child Health Centre when Sam was just 13 days old. It was a pivotal moment in his life because we were able to see how the other babies were progressing. Everybody tells you not to compare your baby with others because they can all develop and hit their milestones at different times, but we were noticing that the other babies in the group were more settled and making eye contact with their mothers. We never had this with Sam. We noticed that he would not look at us directly, but rather be drawn towards light. His eyes would also dart back and forth as if he couldn’t focus on anything.

At six weeks of age we realised that things hadn’t improved. When Sam was eight weeks old it was time for his post-natal check up with the Paediatrician. He was very unsettled at the appointment, as it was bottle time. The Paediatrician didn’t seem to do a completely thorough check and when we brought up our concerns regarding his vision, he replied with, “It can take babies up to twelve weeks to focus”.

The alarm bells really started to ring when the Maternal & Child Health Nurse showed some concern with Sam’s sight whilst performing visual tests on him. We told her what the Paediatrician had said to us and she questioned his assessment. She said that she pays attention when parents have a gut feeling that something is not quite right, because nobody knows their baby like a mother or a father. She immediately jumped on the phone and called our Paediatrician, who gave her the number of a Paediatric Ophthalmologist. An appointment was made then and there…