It was during the August of 1999 that I discovered that I was pregnant, and was unable to believe it at first. It had taken David and I eight months of trying for a baby, and I was beginning to think I’d never get pregnant.

The previous week I had been for a job interview and been accepted for position of “Independence Tutor” at a nearby college for young people with learning difficulties. My training week was the following week, and I had to notify my manager, on my first day, of the pregnancy!!!
My employers were great, and I started my training and began working in the residential accommodation that supports the college. I thoroughly enjoyed the job.

Jamie was born in April 2000, a millennium baby - my pregnancy passed trouble free, and my labour started 2 weeks early one morning.
A family member drove me to the hospital, where David came from work to support me.
Soon after David arrived at the maternity hospital the room become a flurry of activity, nurses and doctors in and out, with machinery. No-one really telling us what was going on, but I could see that the baby was struggling, as his heartbeat was dropping, and then a resuscitation machine was brought in.

Jamie was bluish purple and motionless, on arrival. He was whisked away to be resuscitated.
The next few moments were the longest couple of minutes I can remember, waiting to hear a sound from Jamie, some sign of life as they worked to resuscitate him. All I can see were their backs, and David and I looked at each other in desperation until we heard the golden sound of Jamie’s weak cry.

We could hardly call it a cry, Jamie didn’t exactly cry ever, he made a quiet pathetic noise. We’d often tease him, and say, “Call that a cry? You can do much better!”
Jamie was the cutest little chap, who always smiled, and rarely cried. Everyone always told me how lucky I was to have such a good baby and we called him an angel child.

Jamie was 2 ½ when I started choosing a school for him to attend. He was very clever and advanced for his age, a beautiful child that people always commented about, that he was so well behaved. I had bought lots of parenting books in anticipation of problems and terrible twos, but never needed to refer to any of them, and actually wondered what all the fuss was about!

We then found out that I was expecting again!!! I hoped for a girl, but was expecting a boy. I wasn’t too disappointed; at least Jamie would have a brother to play with.

Jamie’s health had always been perfect, he was never ill, but as my pregnancy progressed Jamie complained of leg pain at night, and would wake up screaming in agony. I took him to the doctors to be told it was growing pains.

In June 2003 Charlie was born. And during the 5 weeks that followed, Jamie’s health deteriorated.
It started with stomach pains, which the doctor tried to say was attention seeking behaviour.
Then high temperatures and vomiting, which the doctor said was a tail end of a virus.
Jamie’s poor health continued for the 1st 5 weeks of Charlie’s life, until one doctor sent us to the hospital for tests.

Christmas Day Jamie managed to perk up for a while and slowly improved over the next week or so – we never discovered the cause of his bad turn, but Jamie was very uncomfortable vomiting often because his digestive system was still trying to recover from the surgery.

In January 2004 Jamie went to bone marrow transplant unit where he had high dose chemo - Busulfan as an oral chemo. It was given every 6 hours for 4 days.
This posed potential problems, as Jamie was vomiting regularly so was in danger of causing himself injury to his throat and mouth with vomiting chemo...
 Then Melphalan was given thru IV, by his central line.

The on 28th January Jamie was given his stem cells back – and the room smelled of sweet corn!!!
During the days that followed Jamie developed Mucositis, suspected Septicaemia or graft verses host, Busulphan rash. We  thought at many times that Jamie was going to die, because despite him being dosed with loads of different antibiotics, his fevers were not subsiding, and his temperature stayed dangerously high – Doctors still to this day cannot explain what was wrong with him, but he pulled through like the star he is, only to have some idiot nurse stand on his central line and split it!

Mid February Jamie was fitted with a Gastrostomy which didn’t improve his digestion and feeding very much, so a month or so later it was changed to a Jejunostomy.
After that Jamie changed and we started to see the old Jamie coming back... he seemed a lot happier without the regular indigestion and vomiting.

On 1st May 2004 we were allowed to take Jamie home to recover from his 5 ½ month stay in hospital.
Once at home Jamie’s digestion improved and he actually began to eat and keep foods down!
In July Jamie started nursery school at Our Lady St Patrick’s just less than 500 metres from the house.
In July Jamie’s kidney function was found to be at a safe level to begin retinoic acid for 6 months.
This caused Jamie to get dry skin and cracked lips

On September 23rd 2004 Jamie’s Jejunostomy line was removed, as he had been eating enough for us to reduce the feeds and was back to normal.
On October 7th 2004 we were told that Jamie was cancer free.

The oral chemo was stopped and Jamie required blood transfusions daily. He lost most of his hair, and looked so skinny and pale; it was so painful to watch him waste away before our eyes.
The time came to tell Jamie that he was going to die, and it was me that broke it to him one day in the car, driving to the hospital. He was telling me about how he looked forward to returning to school and being able to go swimming.
Jamie was unable to go swimming because he had a central line for his blood tests, transfusions and medication.
He’d assumed that because his treatment had stopped, that he was better, so I gently explained to him that he wasn’t better, the medicine hadn’t worked.
Jamie asked me the question, “am I going to die?” and I didn’t know what to say, so told him he might, as the doctors can’t always make people better.
He’d experienced his cancer buddy die just a few months before, but seemed determined that he wasn’t going to die himself.
We talked at length with Jamie about death, and that his grandfather was in heaven to look after him. It terrified us to think of Jamie being alone on the other side, missing us, and tried to make him not be scared.

One of the worse things, apart from seeing the physical deterioration of Jamie, was watching his personality also deteriorate, and as each day passed we were loosing the Jamie we knew and loved.
In the end I kept thinking how Jamie wasn’t even there anymore; his spirit had slowly ebbed away before his death.

On the last day at home Jamie told us he had had enough – he was being taken daily to the local hospital for blood and platelets and it had become a painful journey for him, as he was thin and very frail, and people stared which was awful.. We wished the nurses would bring the blood and platelets to us, but the hospital and doctors refused to do this.
Hospice care couldn’t give blood transfusion either so things were dire.

So we let Jamie say goodbye to his grandparents, who knew that they may not see Jamie again after he was admitted to hospital and put on a Morphine drip.
The next night Jamie finally gave up fighting on 31st August 2005, he was in hospital, with David and me by his side. It was traumatic by all accounts, and I wouldn’t wish the experience on my worst enemy.
The next few weeks blurred past, with a beautiful funeral, a horse drawn carriage, and convoy of motorbikes. We buried Jamie with favourite toys, and his granddad’s ring as a link to the other world we hoped.