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My son's story... and a hospital haven that gives hope to families in despair
This story begins one Sunday morning in March 2006, when my son, Alex, then 8, wandered into the dining room, holding back his hair.
"Mum, look, I've got a lump on my neck."
Sure enough, there it was, under his left ear, a circular lump, like half a golf ball under the skin.
So began a chain of GP visits, blood tests and antibiotics.
Apart from the lump, Alex was well. It was a mystery – "weird", our GP said. Then, late one night a month later, there was a soft thud from his room and I found him flopped on his bed, on his knees, face down.
My husband, Donald, and I took him to Harrogate A&E, where he lay unwakeable for an hour during X-rays and tests that brought no answers. And then he woke, perfectly well, surprised to be in hospital. We went home.
Two days later, Alex began to lose consciousness again, outside the room of the ENT consultant we were there to see. He revived within the hour, but was admitted to York District Hospital where, four days later, we had a diagnosis: Alex had lymphoma and he needed to
go to St James's Hospital in Leeds. Cancer.
More drama was to come. Arriving at Jimmy's, Alex collapsed near the car park and we ran, Donald carrying him up to the children's cancer ward where, pre-warned, a medical team was waiting in the treatment room. Alex lay motionless, hooked up to monitors and oxygen, while
they tried to bring him round. They did and he was fine again. Chirpy, actually – enjoying the attention and the CT scan that quickly followed.
We, his parents, were not fine. We had already had weeks of increasingly frantic concern, researching on the internet for hours after Alex and Sally, our daughter, then 11, had gone to bed. The shock of the diagnosis, then hospital, scans, lumbar punctures, and the waiting for answers, for hope, all the while trying to listen and smile, to pretend to Alex that there was nothing to worry about.
I suspect if you look closely at the window panes in any children's ward parents' room, you'll find circular misty patches, three or four centimetres in diameter, where mums and dads have rested their foreheads for a moment in silent despair. I added mine.
On that first day, we hadn't even considered where we would spend the night. Only one parent can sleep on a pull-down bed next to their child on the ward. "We'll get you into Eckersley," said a nurse,
directing us to a large, bright house with family bedrooms, bathrooms, laundry, well-equipped kitchens and peaceful sitting areas, with TVs, books and games. A home from home, in the hospital grounds, minutes from the ward.
We had been given extraordinary kindness and support from doctors and nursing staff, but still, realising that Eckersley House existed, that we lived in a world where others cared enough to provide the families of sick children with a comfortable refuge, I felt blessed.
This was our home entirely for the next month and for much
of the following two months. I slept on the ward, and Donald stayed with us all day until late and then slept at Eckersley.
My parents came over from Kendal to stay with Sally, who
was taking SATs – once they were finished, she stayed at Eckersley, too, Donald ferrying her to school and back.
We began to look forward to our daily Eckersley breaks,
making meals in the kitchen, doing the laundry, talking with staff and other parents, exchanging treatment and prognosis news.
In this way, for the past 16 years, Eckersley House has looked after the families of seriously ill children across Yorkshire, as part of The Sick Children's Trust. Now the relocation of children's health services to Leeds General Infirmary means it will have to move there, too, in 2010. The new Eckersley House development will have an extra six bedrooms, a total of 22 family rooms, but more funding is needed for it
to happen.
"We estimate that The Big Move project will cost 1,879,206 in total," said house manager Jane McHale. "We've already had 250,000 donated from Leeds University Hospital NHS Trust and The Sick Children's Trust has pledged 500,000 from our reserves. However, the target we need to achieve is still in excess of 1.1m."
The Big Move campaign aims to raise funds for the move, with events taking place across Yorkshire this autumn, including The Great Yorkshire Dinner Party, when anyone, from private home to restaurant, can serve up their own charity meal.
It's impossible, really, to explain how important Eckersley House was to us when Alex was ill.
Home can be anywhere, as long as your family is with you. Alex failed to come round properly after an operation to place in his chest the line he needed to start chemotherapy, so he was in the paediatric intensive care unit for two days, unconscious, surrounded by monitors. It was indescribably awful, unreal, but I remember looking down
on to Eckersley's rooftop, just below, and wondering who was in the kitchen, feeling comforted, simply because it was there.
It was in the intensive care unit that doctors told us tests
had shown the cancer had not entered Alex's brain and spine, as they had feared. A week later, we had a firm diagnosis of non Hodgkin's lymphoma (NHL) and he began chemotherapy. He suffered nasty, painful
infections and lost his hair and became upset and thin and distressingly ill, but the prognosis was now good, he got excellent medical care, he responded well, was astonishingly brave, and we were lucky.
Three years on, Alex is 11 and soon to start secondary school. He has six-monthly checks and, touch wood, he's stayed well. We are so grateful, first to his doctors and nurses, but also to The Sick Children's Trust.
Sometimes, when he calls "Mum", I still feel a stab of fear,
in case it's another lump, though his doctors say not to worry, he'll be fine, and I believe them. But it is a comfort to know that, should anything happen, there's a home-from-home waiting at Eckersley House.
To help Eckersley House, to donate or take part in The Big Move campaign, contact Andy on 020 7791 2266 or email andy@sickchildrenstrust.org, or check out www.sickchildrenstrust.org
'IT MEANT WE COULD BE TOGETHER WITH OUR OTHER CHILDREN'
At four weeks old, twins Zara and Kea Jerome were taken into St James's Hospital in March this year suffering from bronchiolitis.
While Zara recovered well, Kea became increasingly ill and was rushed into intensive care. "I remember having to sign forms to say that we gave our permission for her to have blood transfusions. It was all such a shock," said mum, Vanessa, 31, an administrator, from Roundhay in Leeds.
While husband, Mark, 34, a builder, was looking after the couple's other daughters, Shemaiah, eight, and Mea, two, Vanessa was breast-feeding. "Although Zara was doing well, I still needed to be close to Kea. Unfortunately, Zara wasn't allowed on to Kea's ward,"
she said.
"The kids were quite upset and separated, at my mum's, and it was lot of to-ing and fro-ing."
Nurses on the ward suggested Eckersley House might help,
even though they lived close by (priority usually goes to families outside Leeds).
"It meant that Mark could sit on the ward with Kea while I went to Eckersley to breastfeed Zara. It also meant that we could be together as a family with our other two children.
"We met other families who were going through similar or worse traumas than us and it really is at times like that you realise how lucky you are."
Kea recovered and she and Zara are now healthy and almost five months old. Mark Jerome plans a skydive in August to raise funds for The Big Move. To support him, contact the Sick Children's Trust as detailed on the right.
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