Saturday 27 December 2014

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.

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.

Irish Independent

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