Children’s Hospice Week: Time to put families first

This week marks Children’s Hospice Week which this year focuses on how precious family time is and how the wide range of children’s palliative care services across the UK provide vital support to thousands of families and help them treasure their time together.

At ellenor, the fact that we provide care into a child’s home means that families can spend more time together. Fraser Watkins, who recently finished treatment, is an example of how we focus on the importance of family time.

Aged four, back in 2012, Fraser Watkins had just started school – but he spent that first term in the run-up to Christmas with what seemed like a constant cold. Exposed to all the new friends in his class – this wasn’t perhaps too unusual and doctors didn’t seem unduly concerned.

Life changed though on Boxing Day that year. The family – Fraser, along with his Mum Fiona, Dad Colin and Fraser’s brother Ewan - live in Crayford and had enjoyed Christmas Day at home. The following morning, they packed the car for the 12 hour journey to continue the celebrations with Fiona’s family in Scotland.

“When we reached Scotland, Fraser’s glands in his neck were really swollen,” remembers Fiona. “We made an appointment with the local GP and he suggested a viral infection.”

On returning home, various appointments saw Fraser referred to hospital. The swelling had now spread under his chin and he was moved to intensive care in London, where a biopsy revealed that he was suffering from T Cell Non-Hodgkin’s Lymphoma.

Fraser then travelled to The Royal Marsden’s children’s unit in Sutton – where he was started on steroids, which, at last, started to bring down the swelling.

“We were told that Fraser would be beginning chemo and a protocol of treatment that would take nearly 3 1/2 years,” says Fiona. “It was terrifying and unbelievable.”

While at the Marsden, the team there explained that Fraser would receive shared care from his local hospital and from the children’s team at ellenor.

“They described ellenor as a hospice – which was frightening,” says Fiona. “But, when I began to understand more about the services and support they would give us, I felt a little more reassured.”

Mandy, one of ellenor’s children’s nurses, visited Fraser and his family at home on the day he was discharged from hospital.

“She was very friendly and explained to Fraser – and to us – exactly what would be happening,” says Fiona. “Fraser would need bloods taken once a week and sometimes IVchemo four times in a week but, with the help of ellenor, this could be done at home – something which would make the world of difference to us as a family.”

Fraser has an older brother, Ewan – so keeping the family together as much as possible, was important to him too. ellenor also made sure that Ewan had a voice – offering him sessions of play therapy to enable him to share how he was feeling about Fraser’s illness, while Fraser also had play therapy as well as music therapy.

“We’ve also really enjoyed the ellenor holiday drop-ins and parties as a family,” says Fiona. “Ewan has always been very much included, which is important. He was seven when his brother was diagnosed and he has been angry at times about what’s gone on – but, after the sessions of play therapy, he’s been so much better.”

Fiona says that Fraser doesn’t remember much before getting ill.

“Nurses and medical staff have become part of Fraser’s life and, while we’re getting used to returning ‘to normal’ as a family, Fraser’s been asking if he still can see everyone from ellenor. The team has really become part of our family,” says Fiona, who adds that she’s really benefitted from the drop-ins.

She explains: “I’ve been lucky to have the support of lots of friends locally – but the opportunity to chat to other parents in a similar place to us has been invaluable. It isn’t until you’re in this situation that you really understand. It becomes the ‘new normal’.”

To make everyday life a little bit easier for the family, ellenor nurse Mandy would often visit the family at 8.15am in the morning, so Fraser could get on with this day.

Living in Crayford though, getting around during the rush hour can be difficult.

“There have been times when Mandy’s called and says she’s stuck in a jam and we’ve then arranged to meet her at school – meaning that Fraser isn’t late or too disturbed,” says Fiona. “Fraser has always wanted to be at school and doesn’t like missing lessons. His enthusiasm and the support from ellenor, has meant that he’s doing really well at school – which is brilliant considering how ill he’s been.”

Last week, Fraser came to the end of his treatment and had a party to celebrate.