Life with leukaemia
when seven-year-old Caitlin Godden was diagnosed with leukaemia two years and three months ago, normal life for the youngster and her family came to a shuddering halt.
Life changed from the ordinary to one filled with fear of the unknown, unbridled hope that she would recover and faith in the medical team caring for her at Crumlin Children's Hospital.
This Friday (November 6), Caitlin, now aged 10, is due to have her final clinic at Crumlin - she is free of cancer and will no longer need the weekly trips to Dublin for chemotherapy which have dominated her young life for so long.
'I can't believe we've got through it,' said her mother Nicki, 'it's still scary though, the hospital have told us to forget everything we have been told to do for the past two years, to let Caitlin lead a normal life.'
'We have been one of the lucky ones. Along the line we have met parents with children with far worse conditions. Even after the first few days, we felt we had a light at the end of the tunnel because we knew there was a chance that she would be OK with the treatment.'
Nicki said after such an intense and difficult time, the thought of not having the hospital 'on call' 24/7 was scary in itself - after many months when every cold and sniffle was communicated to the medical team for fear they could spell a potentially fatal infection, the new order is going to take some getting used to.
'She seems to have come through it, not unscathed, but she has done extremely well,' said Nicki.
For the past 18 months, Caitlin's daily regime has meant a monthly visit to Crumlin for intravenous chemotherapy, chemo tablets every day, extra tablets on Saturdays and Sundays to stop her getting chest infections and extra chemo drugs every Tuesday, with a steroid course from Tuesdays to Saturdays.
Nicki said that after the initial shock and very intensive first weeks and months of chemotherapy, the first indications that life could get better came through Barretstown, which was set up by Paul Newman and which runs camps for children with cancer and other serious illnesses at Ballymore Eustace, in County Kildare.
'It's geared towards children having fun and forgetting their illnesses. For us it was a lifesaver,' she said.
'When the children went there, they were free to be children. Barretstown gave us back our children back.'
'For first six months (after the diagnosis of cancer) you are kind of cocooned in your house, afraid to let them go to parties or other children's houses, especially those with dogs, because of the risk of infection, but when Caitlin was at Barretstown, she was able to do things like horse riding and canoeing, activities I had said "No" to on the form'.
The fact that her siblings with there and sometimes all of the family was an added bonus, as Nicki said ' it was a lifesaver'.
Nicki said camp changed the way the family thought and dealt with Caitlin's illness and at the same time provided an opportunity for her other children to become more positive and to relate to other youngsters in a new and stimulating environment.
Caitlin attends Kilmore National School and despite everything has managed to keep up her attendance.
'She enjoys school and has been in school a lot more than I anticipated,' she said, 'I was terrified letting her go to school because of the risk of infection, but Crumlin said let her have as normal a life as possible.'
Nicki said she had joined a parents forum at Crumlin to help those parents and families suffering at various stages of cancer.
'It is scary to see just how many are being diagnosed each week,' she said.
Having gone through it, Nicki empathises with those at the start of their long and difficult journeys.
Talking about when Caitlin was first diagnosed, she said 'my lasting memory of that month is some pictures I have of Caitlin on the beach one day. Just one of those carefree summer days that you think your children are going to have throughout their life. And then the following month it sort of hit us like a sledgehammer.'
August came round and Caitlin started feeling ill. She woke up every morning with a temperature. Small bruises started to show on Caitlin's skin. Her parents were concerned that she had picked up something viral, so they took her to Wexford General Hospital, where doctors ran blood tests.
Nothing could have prepared Nicki and her husband for what the doctor told them.
'We sat down and that's when the doctor said to me, "there's no easy way to say this, but I'm afraid Caitlin has leukaemia". I couldn't even look at Ken. I went numb.
'I can just remember lying with Caitlin in her hospital room that night, just hoping they'd got it wrong, thinking they were going to come back the next morning and say "look I'm really sorry, we've made a huge mistake".'
But there was no mistake. Seven-year-old Caitlin was sent to Crumlin to begin treatment. She and her family had a two-year fight to save her life ahead of them.
The first six months of Caitlin's treatment were the hardest for Caitlin, and the whole family. In many ways, life had stopped for all of them. Family days out didn't happen. And holidays were put on hold, at least until Caitlin finished her treatment.
Everyday colds and bugs that children easily pick up, can result in a trip to the hospital for a child during cancer treatment. Their carefree day at the beach the previous summer had become a distant memory for all of them.
'One day I'd gone into Caitlin and she just handed me a handful of hair. I had to leave the room because I got really upset. We knew it was going to happen. You think you're prepared for it, but you're not.'
Nicki and Ken heard about Barretstown while they were in Crumlin, so when they felt Caitlin was strong enough, the entire family attended a Family Weekend Camp. It helped change their lives.
At Barretstown, families don't have to worry about the next hospital appointment. They don't have to worry about the next round of medication. Or about their children's safety. They take all the worry away for families.
'If people didn't support Barretstown, this place wouldn't exist. Barretstown gives families like mine a light at the end of the tunnel,' said Nicki.
• For more information on Barretstown visit www.barretstown.org. Text LAUGHTER to 50300 to donate just €4.