This month is National Childhood Cancer Awareness Month. Here, one Kent family shares their story...

There are times when a mother’s instinct really can be a lifesaver. As a mum of three, Carrie Wilson knew her baby daughter Grace was suffering from something way beyond the usual illnesses.

She said: “My older boys, Henry, 12, and George, five, both had croup when they were tiny. Though I was told croup was probably what was the matter with Grace, croup clears up and this raspy cough of Grace’s didn’t. Plus, George has asthma – and I knew Grace’s worrying breathing was totally different to that.”

Because of Carrie’s tenacious push for answers, Grace was diagnosed at just nine months old, in December 2019, with rhabdomyosarcoma, a soft-tissue cancer in her oesophagus.

While obviously an incredible shock to Carrie and Grace’s dad, Sam Caddock, at least diagnosis meant treatment-planning could begin.

Grace went home for a week at the start of January 2020, until, as Carrie recalls, “her blood cells went berserk.”

A spell in Great Ormond Street Hospital then followed, with a tumour removed in early February 2020.

Towards the end of that month and once her condition had stabilised, Grace was finally able to return home. Through it all, Grace’s

energy has amazed everyone.

“There’s bouncing back and then there’s Grace!” laughed Carrie. “Soon after her operation, the staff at Great Ormond Street couldn’t believe it – she was basically sitting up on all fours, trying to pull out her tubes. She’s kept us all on our toes!”

The team at ellenor hospice, based in Gravesend , was brought in at the end of February to make life easier for Carrie and the family by treating Grace at home. They have continued to support her regular treatment regime throughout the pandemic.

“Nurses Sian and Mandy come in to check Grace’s blood count on Mondays and to change her dressing every Friday,” said Carrie. “This saves us from trekking into Queen Elizabeth Hospital in Woolwich, which we’d otherwise have to do – something that’s disruptive to family life, and which would be an additional worry, now that we all have to be especially careful because of Covid.

"With or without the pandemic, the hospital is a 10-minute drive away and the care itself only takes around quarter of an hour, so for several reasons it’s so much more convenient to have it at home.

"This way, I know when the nurses are coming, too: just after the school run. By about 10.30am, we’re done and dusted and can just get on with the rest of our day.”

Meanwhile, Grace continues to have maintenance chemo at Great Ormond Street three Mondays out of four, which sees Carrie driving up to London and expecting to spend half a day there. “Sam has been back at work because his job as a fibre engineer means he’s an essential worker.

"We feel fortunate that my mum and sister have stepped up brilliantly to help us – they’ve been a lifeline in looking after the boys while Grace is having her treatment.

"Our regular visits to Great Ormond Street make me even more appreciative of the days when Grace is able to have care at home.”

Has the support Grace and the family received from ellenor changed her perception of how the charity works?

"I had no idea of the level and depth of support it also gives to children and their families"

“I’d heard of ellenor, but thought it worked more with adults – I had no idea of the level and depth of support it also gives to children and their families. Now I know that, beyond treatment itself, they offer additional services, from counselling and music therapy, to support groups and trips away.

"As far as our ellenor team is concerned, Sian and Mandy don’t just do Grace’s day-to-day at-home nursing, they are completely on top of Grace’s care plan and know exactly what’s going on with Great Ormond Street, too – it’s clear the two organisations work very much as a team. And they take the hassle out of things like ordering prescriptions, making sure we’ve got everything we need, so all I have to do is pop into the chemist and pick up Grace’s medication when it’s ready.

"It makes such a difference not to have to worry about these sorts of issues ourselves. Ellenor’s involvement has helped us to get on with our lives as much as we can – and, from her ability to bounce back, it’s clear just how keen Grace is to get on with hers!”

Carrie and her family, who live in Welling, decided to share their story as part of National Childhood Cancer Awareness Month, to raise awareness of hospice support and why funds are so vital.

National Childhood Cancer Awareness Month is an annual health campaign organised by major childhood cancer organisations, to increase awareness of cancer in children, as well as the work charities do to support children with cancer and their families.

Ellenor is the only hospice providing support to families in Bexley and north-west Kent, enabling children with cancer to spend more time at home while undergoing treatment that may include chemotherapy. It provides its extensive range of support throughout the community. Around a third of the children ellenor supports are cancer patients, with between half to two thirds making a full recovery.

The number of children living with life-limiting conditions in England has increased by more than 260% since the start of the millennium. This is partly due to advances in medicine which means children are able to live longer with their condition.

With just 2% of children with life-limiting conditions dying each year, making sure the remaining 98% of children facing this situation can get the best out of their life is essential.

Helping these children to live their life is a priority for ellenor’s Children’s Services Team headed up by Rebecca Scalzo. However, for many children with life-threatening and life-limiting conditions, and their parents, hearing the words "palliative care" doesn’t sound like a positive step.

Rebecca said: “If there’s one thing I want, it’s for people not to be afraid of the words children’s palliative care. It doesn’t mean death and dying but living as well as possible with the time you have available. Palliative care is all about improving quality of life.”

To find out more about the services ellenor offers and how families can live life to the full in the time they have together, visit ellenor.org/

You can also contact 01474 320007 and ask for the children’s team, or email TELH.Ellenor-Childrens-team@nhs.net

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