Iron Boy: Surviving Beta Thalassaemia Major - Arthur Bozikas

A Biography Of Courage And Survival

Iron Boy: Surviving Beta Thalassaemia Major by Arthur Bozikas

Book Excerpt

My brother Nick, older by almost two years, was often puzzled by and envious of the attention I received as a baby. Initially, he was the model big brother, but after two years of watching me receive an inordinate amount of attention, his patience ran out. From then on, he did his best to alert everyone that he was also part of the family. He demanded to be noticed.

Before my brother’s reign of mayhem began, I caused some havoc of my own when I developed an appetite for nappy pins. This frightened the wits out of my parents, especially Mum. As if I hadn’t given them enough to worry about already!

While the rest of the family prepared to go to church one day, my mother was entertaining an unexpected visitor, a friend of the family. From the lounge room, she heard my panicked cries and quickly ran to check on me. Upon entering my room, she swiftly plucked me out of my cot with one hand. She then held me over the cot and balanced me against her body with my head pointing downwards. As I twisted and turned against her, I vomited profusely. She slipped her finger down my throat and felt a sharp pinprick. Then she examined the clothes she had placed on my bed, which she had planned for me to wear to church. The nappy pin was missing!

Mum’s panic turned into sheer terror. She yelled out in Greek, ‘My babe has swallowed a nappy pin! Help me, help me! My babe has swallowed a nappy pin!’

The friend’s car was outside, and Dad quickly loaded all of us into it and made him drive us to the children’s hospital. I passed out during the ride and, upon arrival in the emergency section, they rushed me to get an X-ray. The X-ray clearly showed the open nappy pin lodged in my throat, facing upwards.

Horrified at what she saw on the X-ray, Mum almost passed out. But the doctors calmly explained that there didn’t appear to be any damage done and it was a simple procedure to remove it. Before she knew it, they had removed the nappy pin and we were all on our way home, relieved and intact but a little worse for wear. Not surprisingly, we didn’t see that poor visitor again for quite a while.

It was after that incident that Nick really kicked into action with many horrific antics. A particularly memorable and perilous episode occurred after he discovered the top-secret location of the family’s fireworks stash. Back then, money was scarce, but each year, just in time for cracker night, Mum and Dad brought home a small plastic bag with an assortment of fireworks. To Nick and me, the bag looked huge, and it was always hidden for safekeeping.

Because Mum worked nightshifts, cleaning trains, and Dad worked during the day now as a plasterer and bricklayer, it was difficult for our family to attend any of the bigger fireworks displays in the area. Consequently, our parents made an effort to put together a small display for our family.

On the eve of cracker night, Dad arrived home in plenty of time to see Mum off to work at four p.m. He told us Nick was the babysitter and took off with a man we called Uncle to the nearby club like he has done many times before. Now, Nick had a talent for uncovering secret hiding places, so locating the bag full of fireworks was a walk in the park for him. Determined to get a head start on the cracker night activities, he retrieved a single skyrocket firecracker from the bag.

Still in broad daylight, Nick placed the pilfered skyrocket on top of the bedcovers on our parents’ bed. He opened the bedroom window and aimed the rocket outside. With me and the newest addition to the family, one-year-old Con, standing by his side, he ignited the rocket.

But things didn’t go quite as planned. The skyrocket sat there in full thrust, belching flames. It didn’t move an inch. Instead, the bedcovers ignited. Then the rocket exploded with a huge blast and an abundance of coloured flares. The curtains went up in flames too.

I was terrified and found myself quickly out of breath due to inhaling smoke from the burning bedcovers and curtains which were now engulfed in flames. Both Con and I collapsed on the floor, struggling to breathe.

In a panic, my idiot brother had another bright idea. An almighty tug brought the curtains down and he quickly rolled them up in the bedcovers. He gathered up the bundle, shoved it in the wardrobe and slammed the door shut, somehow managing to avoid getting burnt.

As the smoke started to dissipate, fearing for my life, I rolled under the bed. How was I to know that was the worst possible place to be in this particular situation?

Barely seven years old, Nick stood there proud of himself for not only putting out the fire but also cleverly hiding the evidence of his misdeeds. Then a huge cloud of smoke poured out of the wardrobe. It was thicker and more sinister now and rapidly filled the bedroom. Spellbound by its sheer intensity, Nick collapsed as his panic turned to exhaustion.

Fortunately, a distressed neighbour called the fire brigade. When they dragged us out of the house, barely breathing, we looked like three drowned kittens. But Mum was furious at Dad for weeks after discovering he left us with Nick and there was no babysitter.

Since that day, I can’t recall anyone mentioning fireworks again. But perhaps that’s where my fascination with explosions came from, a fascination which would result in me getting third-degree burns on over seventy-five percent of my body many years later when I was in my early teens. But I’m getting ahead of myself.

***

I was about four and a half when the doctors informed my parents that my spleen had to be removed. At the time, we were living in Burwood Road, Concord, a suburb on the outskirts of the city, and I was on one of my regular hospital stopovers. My spleen was terribly enlarged due to my condition, resulting in a distended abdomen. My stomach had also blown up like a balloon, which further complicated things, not only for the doctors but for me as well. My doctors decreed that my spleen needed to be removed immediately.

‘The spleen is an organ located below the heart. In an adult, it’s a little larger than a tennis ball. It is one of the lymphoid organs, that is, organs where the components of the immune system are produced or stored. The spleen serves as a repository for lymphocytes, the white blood cells that produce antibodies to foreign substances (‘antigens’), such as bacteria and viruses, to eliminate these threats.’ My doctor explained to my parents’ deafened ears.

‘The area of the spleen which houses the white blood cells is called the ‘white pulp’. After circulating through the lymph vessels throughout the body to patrol for invaders, the white blood cells congregate in the spleen.’

My doctors then turned and tried to explain to my Uncle Tony with my parents eagerly looking on, ‘I would put it simply to you, many types of lymphoid cells congregate there, including B lymphocytes, T lymphocytes, and the macrophages that present antigens to them. New red blood cells and other types of blood cells are constantly being produced in the bone marrow, and the spleen also contains ‘red pulp’, where retired blood cells are broken down. Despite not being necessary for survival, the removal of Arthur’s spleen could make him prone to infections. All Thals end up getting their spleen removed sooner or later, but for Arthur, it would be much sooner than later.’

My Thal specialist at the time estimated a short stay in hospital after my surgery, and also said to the three of them that I should be well again in four to six weeks. My mother organised as much time off work as she could, and I was immediately admitted into the children’s hospital for splenectomy surgery.

Getting admitted for surgery was like a usual hospital stopover but with more toys. Before my parents could grasp the details of a routine splenectomy, which was anything but routine to them, I was in out of surgery and in the recovery room, minus one poor excuse for a spleen.

‘Your son’s stomach is large because of the spleen, and it needs removing.” The youngest doctor of the group hopelessly failed to explain to my distraught mum and agree to my surgery.

At the time my mum misunderstood this young doctor trying hard to explain the importance of not delaying my surgery in anyway but the more he tried, the more mum believed he was saying that I was dying. It wasn’t until an interpreter was located who put my mum at rest, and she agreed to go ahead with the surgery without any further delay.

My recovery time in intensive care stretched from days, into weeks and then months due to complications. The drainage tube which extended from the left side of my stomach to allow excess fluid to drain from the operation site kept leaking fluid well past the estimated timeframe. Mum and Dad were devastated, their fear turning to exhaustion as the days and weeks went by. Yet, despite the circumstances, they were determined to fight for me, and a sense of hope was always found in their eyes.

During this trying period, my mum had a desperate need to do something before time run out for me. The doctors were doing all they could, and she couldn’t watch me slip away without doing something herself. Her faith needed to be rekindled. The burden she had placed on herself was so overwhelming and she needed forgiveness for the ‘curse’.

Seeking divine compassion, she visited the Greek church in Abbacoby Street, Redfern, where she and Dad had got married. On this day, which coincided with my Greek name day, she went to the church to gather her thoughts and confess her imperfections. She believed she was responsible for our family’s curse. Upon her arrival that day, her heart full of despair, she collapsed on her knees under the heavy weight of grief she carried for me.

She prayed that I would survive the complications of my operation. But even if I did pull through on this occasion, the burden of her belief that she had given Thal to me, resulting in a devastatingly short lifespan, was too much for her to accept. Aside from the dire prognosis of my life being cut short, the thought of me repeatedly enduring regular blood transfusions and other complications was beyond comprehension.

With tears streaming down her cheeks and her hands clutched together, on her knees in the middle of this spectacular church, she prayed for absolution. Then she vowed to light a candle in that church on the anniversary of that day for the rest of her life if I was spared from being taken from her at that time. She also vowed she would take me to the cathedral of Our Lady of Tinos, that church’s patron saint, on the Island of Tinos in Greece, if I was spared.

After spending the entire afternoon rendered powerless in her desolation, she picked herself up and made her way back to the hospital. She was filled with a sense of relief and a strong anticipation that her prayers would be answered.

It was about three months before I was discharged from hospital and this prolonged crisis took a toll on Mum. After the first month of being by my side almost twenty-four hours a day, she had to return home and juggle her job and home responsibilities, all the while in fear of losing me. After working nightshifts and fulfilling her family commitments at home, she rushed back to my side at the hospital as often as possible. This level of commitment couldn’t be sustained and almost put her into a state of insanity.

Meanwhile, Nick was in kindergarten with an enormous attitude emerging, and Dad was doing his best at home managing it all.

When I was released from hospital, Mum was stricken with total exhaustion and ordered to have lots of rest at home or she would need to be admitted to hospital herself. Taking this much deserved rest wasn’t too difficult after what I had put her through. Being proud parents was, and still is, the driving force behind their determination, but Mum also knew deep in her heart that her prayer had been answered. I had been spared and she was determined to keep her vow.

Book Details

AUTHOR NAME: Arthur Bozikas

BOOK TITLE: Iron Boy: Surviving Beta Thalassaemia Major

GENRE: Biography

SUBGENRE: Medical Biography

PAGE COUNT: 302