Our last precious days with brave Sarah
Around 1,400 children in Ireland are living with life-limiting conditions. Three hundred and fifty children die from their illness every year, but just 11pc spend their final days at home.
The Irish Hospice Foundation believes every parent who wishes to care for their seriously ill child at home should be able to do so and has invested €2.5m in setting up its Hospice Home Care for Children programme.
It needs to raise a further €1m to keep the programme going.
The money funds five outreach nurses who are specially trained to support families during this difficult time, by providing care and advice as their child reaches the final stages of their illness.
It also funds Ireland's only consultant paediatrician specialising in palliative care.
But how important is it for a parent to have the choice to bring their child home if they wish? We meet one family who did just that to get their view.
In August 2003 Sarah Webb Parkhill had just turned five. Starting big school was all she could think about. She couldn't wait to join her big sister Ellen there and had proudly dressed up in her new uniform to show her grandparents.
But by the end of that month a devastating diagnosis had turned her family's world upside down.
"Sarah got the flu," remembers her mother Susan, from Baldoyle in Dublin. "It didn't go away. She started vomiting and was very lethargic afterwards. I knew something wasn't right, but cancer didn't enter my head."
A scan in Our Lady's Children's Hospital in Crumlin revealed Sarah had a brain tumour. "It was just a dreadful shock to the system," says Susan. "You could never be prepared for that kind of news."
During a seven-and-a-half hour operation in Beaumont Hospital, surgeons removed a growth the size of a golf ball from the little girl's head. Sarah then began a year of very strong chemotherapy and radiotherapy, but amazed her family by taking it all in her stride.
"She lost her hair the second week after starting chemotherapy," recalls Susan. "She pulled it out and the more we got upset about it, the more she pulled it out. She thought it was hilarious. She was just that type of child."
It was a tough year, but Sarah was brave. "On day one of the chemo she was fine, but she'd take to her bed and wouldn't eat or drink on day two. By day five she'd bounce back again," says Susan.
After a year of hell, her family was jubilant when Sarah got the all-clear. But their relief was to be all too short-lived. Sarah was in remission for ten months and 28 days exactly, when a routine MRI revealed she had two tumours in the front of her brain. These ones were inoperable.
Susan and Sarah's father, Jonathan, were in a daze at the news. "It was like we were living the whole thing over again," remembers Susan. "At this stage Sarah was seven, so she was a lot more aware. She got very upset because she knew what was ahead of her. Her hair was just coming back and she knew it was going to go again. It was devastating."
Sarah went on a trial, which had a 32pc chance of success. Her family tried to stay positive. "We tried to make it as fun as possible for her," says Susan. "She made great friends on St. John's ward in Crumlin. We had wheelchair races," she laughs.
In an effort to keep life as normal as possible, the family planned a party for Sarah's sister Ellen's confirmation. Sarah was in great form and was running around. But before the day of the party, the family received the worst news possible. "I got a phone call from the doctor to say that Sarah's tumours had started to grow and she was off the trial. It was horrendous," says Susan. "We went ahead with the confirmation party because we wanted to have a special day for Ellen and Sarah, but everyone was under strict instructions not to cry."
The family's only hope was that home chemotherapy in tablet form would prolong Sarah's life and possibly give her another year. But it wasn't to be. Sarah deteriorated quickly and within a month of starting the home chemo, it became clear that it wasn't working. Sarah took to her bed and had less energy by the day.
One Sunday she had a fit and Susan and Jonathan rushed her to Crumlin. The little girl rallied, before having another fit and lapsing into a coma. All her parents could think about was getting her home.
But they needed help to do that and are eternally grateful to Áine, a specialist nurse from St Francis Hospice in Raheny, who co-ordinated Sarah's home care.
"There was no way we'd have been able to do it on our own," says Susan. "We didn't know what to do. Our biggest fear was that she was in pain. We needed the nurses there to reassure us that she wasn't. She got bedsores and had to be moved regularly. I wouldn't have known that. It was a scary time."
Although Sarah was in a coma, her parents sensed she was glad to be home. "Her body relaxed once we got her into her own bed. We definitely felt she was much happier," says Susan.
Sarah came home on a Monday but never woke from her coma. She died the following Saturday, July 29, 2006, two weeks short of her eighth birthday.
Her family have special memories of those final days. Sarah was surrounded by her toys and her favourite TV programmes, SpongeBob SquarePants and Angelina Ballerina, were playing on a loop in her room, as people called to say goodbye.
Jonathan's family came from England and Susan had relatives in the States, so it meant a lot for them to be able to visit Sarah at home, rather than in a hospice or hospital.
Sarah's young friends also came to see her. "They all sat on the bed talking to her," says Susan. "It was lovely. They could never have done that in a hospital setting."
Áine and her team supported the family throughout these final days, explaining exactly what was happening at every stage. "I'd never seen anyone die," says Susan. "Aine would tell us very gently that Sarah's breathing has gone down a little and that it was time to get ourselves prepared. We could ask her anything."
The years since Sarah died have been difficult for the family, but Susan and Jonathan had to pull themselves together for the sake of Ellen, who is now 18.
They can now look beyond Sarah's illness and remember a little girl who laughed a lot and loved dancing, swimming and jumping on a trampoline.
Susan affectionately remembers her daughter as a cheeky little thing who knew her own mind and was very strong willed. "If she had made it to her teens she would have given me a right run for my money," she laughs.
Importantly, they have no regrets about Sarah's final days and are certain bringing her home was the right decision. They're grateful to the nurses who made it possible.
"It's amazing what the hospice is doing," says Susan. "If there's any way a parent could have their child at home, they would. But we couldn't have done it without the help we received."
To find out more and to make a donation, email firstname.lastname@example.org, or visit www.hospicefoundation.ie