OUR HEALTH EXPERIENCE:Our precious boy was given just seven months to live, writes NEVILLE SEXTON
I WAS just 23 when I found out that I was going to be a father. I still remember the shock and how I cried selfishly, thinking how difficult it would be for me and my partner Barbara. I was never one for babies.
But when Craig was born on July 21st, 2000, it eclipsed everything else in our lives. When I held him, when he opened his eyes and looked into mine, I loved him. He was my passion and he was Barbara’s world.
Over the next six years there would be many twists and turns in our lives as we raced around from one end of the week to the other.
I was commuting from Gorey to Dublin for work and we were struggling to make ends meet. But we were a family, through thick and thin, and the joys far outweighed the negative.
Then, on June 26th, 2006 everything changed. We had noticed that Craig was walking with his head slightly to one side but hadn’t thought about it too much. But on June 25th, Barbara came rushing back from the playground, saying we needed to bring him to hospital straight away.
Craig had become dizzy and wasn’t able to lift himself off the apparatus. I went to get him on the street and when I saw him coming towards me, my heart sank. His head was turned to one side pointing downwards, but his eyes were trying to look forward. I was certain there was something wrong with our little boy.
We went to Tallaght Hospital and a CAT scan was organised for the following morning. I remember feeling worried, but also feeling that we were in the right place and everything would probably be fine. But the next day, when it came to getting the results of the scan, we knew something was seriously wrong.
The nurse sat with Craig and we were directed to another room where we were surrounded by doctors and a nurse. We were terrified.
It was a female doctor who spoke first and said they had found a prominent tumour in Craig’s lower brain area. I remember how my throat froze and Barbara screamed. I watched the doctor’s mouth moving, but I couldn’t take it in. Never had I been gripped by such utter terror.
The tumour was in Craig’s brain stem and because of the location it was inoperable. Our precious boy was dying and nothing could reverse what we had been told.
Craig was moved to Our Lady’s Children’s Hospital Crumlin where we got the worst news of all when we were told he had just seven to nine months to live. We had been hit by blow after blow since we left Gorey, but all hope was lost when we heard this.
An oncologist showed us a scan of his brain and said matter-of-factly that the tumour was the size of an egg. In time Craig would begin a degenerative cycle, she said. He would lose the use of his muscles, culminating in the loss of his ability to swallow, and ultimately, in his death. It was beyond comprehension.
Preparations for radiotherapy treatment to prolong his life began. It made him very sick, but he was unfathomably strong and he remained impossibly good spirited. Nevertheless, his condition deteriorated rapidly. I remember putting him to bed one evening when he looked away from me and said to the wall, “I’m dying, amn’t I?”
I was stunned. What do you do when your child is scared, crying out for your help and you know you can’t make things better? I hugged him tight and stared straight into his eyes, telling him he was not dying. I truly believed that. Craig was so remarkable that I believed he would be the rare exception and would pull through it. The next morning he woke up to fight on and smiled his way through another day of sickness.
But he became weaker and sicker. We reached another horrible milestone when the liaison nurse from Crumlin called to see us with Craig’s palliative care nurse. We were talked through prescriptions for morphine and muscle relaxants for the seizures he would get as the illness progressed. We were left with a horrendous picture of what lay ahead but Craig continued to show such strength in the face of crippling adversity.
Having him at home in those last months and weeks was very important to us. His suffering came to an end on November 2nd, 2006, as he died in our arms, in our bed. We didn’t even get the ridiculously short seven to nine months we’d been promised. We’d had little more than four months with him since that day we heard the news.
Our lives were a mess after Craig died. We went from being a proper family to a couple again. The silence in the house was our greatest enemy and everything seemed meaningless. But not long after his death, we began to feel his presence around us and both of us believe he is still with us.
My background is in applied physics and I’ve always mistrusted anything that’s built on belief alone, but we’ve had a few experiences that convince us that Craig is still here, albeit in some other realm. And from my contacts with other parents who have lost a child, I know that many of them feel the same.
After Craig died, I couldn’t even think about having another child but Barbara brought up the subject. Less than two years after Craig’s passing, we were blessed with a beautiful baby boy.
Dean is two years, four months old now and is a little ball of lightning. Having him has been the most wonderful thing to happen to us and we feel so lucky to have been gifted him.
In conversation with Craig – The Boy Who Livesby Neville Sexton is published by Gill and Macmillan
Anam Cara is a support group for parents who have lost a child and for bereaved siblings, tel: 01-4045378 or see anamcara.ie
In conversation with Alison Healy
BRAIN TUMOURS: A RELATIVELY RARE CANCER
Brain tumours are a relatively rare form of cancer. In the 16-year period up to the end of 2009, some 4,415 people were diagnosed with malignant brain cancer, according to the National Cancer Registry.
The exact cause of brain tumours is unknown but risk factors include increasing age and genetic conditions. There are more than 100 different types of brain tumour. Craig’s tumour was a glioma, which accounts for more than half of all primary brain tumours.
Symptoms vary, depending on the tumour and its location, but they can include personality or behaviour changes, speech difficulties, clumsiness and vision problems.
According to British statistics, the survival rates of children with brain tumours more than doubled between the 1960s and the early 2000s. Some 65 out of every 100 children diagnosed with a brain tumour now live for more than five years after diagnosis.
The Irish Cancer Society’s National Cancer Helpline can be contacted at 1800-200700, cancer.ie
