I can't believe that so much has changed so fast. Two years ago I didn't expect to be here, the smell of carnations and roses flowing through the air. I am surrounded by friends. Everybody dressed in dreary black. It's not a great feeling, I don't want to say goodbye to somebody that I love so much. I keep looking at people around the room and old memories pop into my mind. Vic is really finding it hard. It's difficult acting as her shoulder to lean on when really, I need someone holding me together too. This is really all too hard to comprehend.
I've always felt as though my son, Tom missed out on his teenage years, it wasn't fair. While his mates were out playing footy and going to parties, he was put to bed, too unwell to risk living through the hazards of life. We tried to let him live the teenage life that fate didn't want him to have.
We never knew, for years I thought everything in my life was so perfect. I had the perfect wife, and a son that every parent wanted. We were a family.
Tom was in high-school when we found out. At the time the biggest issue we had with that boy was him getting a D on his history exam. It started with fevers. We ended up having to keep him home half the time. They almost didn't let him graduate year 10. As time progressed these fevers got worse and worse. He started losing incredible amounts of weight, and complained about waking up with cold sweat running down his forehead during the night.
We started bringing him to doctors all over the place. They were all stumped. These doctors all studied medicine for years, you'd be be surprised how many of them didn't know how to take care of a patient. Most of them just ordered urine samples. They kept telling him to just get plenty of rest and to stay hydrated. They had no clue. I started sending out letters to hospitals and doctors all over Australia telling them about Tom's symptoms.
I got letters back all the time, but none of them giving us the answers we wanted. Vic and I were getting worried, we kept giving him dinners twice the size a normal boy could eat and we would watch him eat the whole thing, but still he stayed severely underweight. His metabolism getting too fast for him to keep up with. Some days he managed to get to school, but he wasn't keeping up academically with the other children.
It wasn't until July 7th, around 3 months after Tom started getting these symptoms, that we heard from a doctor who knew what he was talking about. He told us that if there were no signs of improvement, it was unlikely to be an infection or virus. He told Vic and I that the symptoms were very similar to a patients he had been working with who had contracted Pericarditis. He asked us to come to the hospital. We travelled 200km north and found ourselves in the office with doctor James Dent.
The doctor ran blood tests on Tom. He had to get six needles that day, poor kid. They kept Tom in a hospital bed overnight and studied his symptoms further. Four days after I received the letter from the doctor suggesting Tom might have contracted Pericarditis, he asked Vic and I into the hallway out side Tom's hospital bed. He told us that the news was not good. I felt cold. He explained that Tom did in fact not have Pericarditis, and the words that came out of his mouth at that point have scarred me to this day “I'm very sorry to have to tell you, Tom has Leukaemia”.
I remember Vic falling into my arms. The doctor tried to explain that Leukaemia can often be treated with certain medication. However it was hard to take information in over the internal sobbing I heard in my heart. Nothing ever seemed so unfair. I knew I had to stay strong, for Vic and Tom. I looked through the blinds into Tom's hospital room. He was asleep, and nobody in the world had ever looked so innocent.
From that day on I was on a mission. I wanted Tom to experience life. It brought tears to my eyes to think that his existence could be stolen from him at any moment. Vic and I stopped pressuring Tom to do well at school, we wanted him to live and experience what everybody deserved to live. We had asked the Doctor not to tell Tom, we didn't want him giving up. We weren’t sure how long our beautiful boy had left, but we knew that from the day we found out, every moment had to be precious.
Dr Dent prescribed numerous different medications for Tom. We worked out a plan with the doctor, we told Tom that he had Pericarditis, the disease that the doctor first thought Tom had. I was desperate to protect him from the truth. I couldn't imagine seeing the hope leave his eyes. It was essential that he always saw the light at the end of the tunnel. Tom's symptoms got a lot better, he started going back to school and his friends were pretty happy to see him around town more often. He was back playing sport, and he played Puck in the school play “A Midsummer Night's Dream”. For a while everything seemed like it was going well. He had hope.
We went away for Christmas. We went camping in a lean-to. We wanted Tom to have a great holiday, we had to, we weren't sure if it would be his last. While some of the other families that went away seemed to be getting caught up in the artificial aspects of the holiday, we tried to connect with nature. We didn't want Tom to get all caught up in that hype. It was a chance for Tom to get away from all the medicated aspects of his life. We told our friends Jim and Gwen about Tom's cancer and that really seemed to remind them of what was important in life. Something happened on that holiday that seemed to bring everyone back to reality. It really was a great holiday. Tom seemed to always have a smile on his face, and seeing Tom happy meant Vic was happy too.
A month or two passed and Tom started to get really sick again, his body was adjusting to the treatments so the doctor prescribed heavier and heavier dosages. It came to the point that if we increased the quantity of medication any further he would overdose. All we could do was wait. The doctor told us that there was very little he could do. We had to keep him in the hospital. Nothing seemed to get better.
Tom seemed to lose his appetite, he seemed calm. He started getting extreme shots of pain up his spine and the doctor explained that his nerve endings were dying. He gave Tom as much pain medication as he legally could and Tom went into a state of relaxation. We stayed at his side for days, the nurses rolled in an extra hospital bed so that Vic and I could get some sleep. One night I was awoken, not by anything in particular, but I felt as though I needed to be awake. I sat there for hours listening to the beeping of Tom's heart monitor. Vic noticed that I wasn't in bed and came and sat with me. A few minutes later, we heard a flat-line. His heart had stopped. The sound seemed to echo throughout the hospital. After a two year fight with with Leukaemia, Tom died.
Nurses were rushing all around us in panic, trying to revive our son. Vic and I were sobbing. I think we both knew that, that was the end. Tom had died in the most peaceful way possible. He was in God's hands now. Friends came by our home paying their respect, and a funeral was arranged.
It is so hard to believe that I am at my own son's funeral. No mother or father should have to go through the pain of outliving their son. All morning people have been telling stories of Tom. He was a real hero, and there wasn't any lack of evidence. I remember Meg stood to read a poem.
A treasured soul, living in a body of hope,
Chasing wonder, bright lights, and a dream to elope.
Never giving into darkness, or limping dark miles,
dealing, happiness, laughter, and foot-long smiles.
He provided a medium, he showed us his level,
he provided a contrast between the God and the Devil.
He helped us to change, pointed us in the right direction,
nothing was stronger than his love and affection.
He was an advocate of transition and wonder,
we provided the lightning, he showed us the thunder.
Trying not to get caught up in the stress or the strife,
He helped us move forward, and showed us the meanings to life.
He may have lost the fight but his spirit won't decease,
Please my friend Tom, Rest In Peace.
It feels lovely to hear such great things about my son, but he is gone and I will never get him back. I loved him so much, he was so loving and I am reminded throughout the rest of the funeral about how much he meant to me and that he had so much left to show the world. As his coffin is lowered into the ground, people start dropping flowers into the grave, and as I feel tears running down my face I am forced to say the two words that I never wanted to have to say...