Andrew Walker is helping to create much-needed accommodation for families of children with cancer - inspired by his own son’s fight against leukaemia. Chris Burn reports.
It had been a memorable day on holiday for the Walker family as they made the most of March snow to go sledging in the North Yorkshire countryside. But as eight-year-old Robert began to develop pains in his back and legs, within hours they were plunged into a nightmare that every parent fears.
His mother and father Andrew and Jane took Robert to hospital in Northallerton and saw a doctor who was alarmed by his symptoms. From there they were immediately referred back to Leeds, travelling back to West Yorkshire with Robert’s younger sister Georgia. Shortly afterwards, the terrible news that Robert had Acute lymphoblastic leukaemia, a form of blood cancer, was confirmed.
That day in 2008 was the beginning of a long, difficult journey for the family that would see Robert undergo unsuccessful chemotherapy treatment before his six-year-old sister helped save his life through a bone marrow transplant.
Now almost a decade later, Robert has recovered and the 18-year-old hopes to attend university next year to study Biomedical Sciences and Human Physiology - while his father has just volunteered to play a key role in a major new project designed to help other Yorkshire families who go through the trauma of their child fighting cancer.
The building surveyor and project manager is helping to lead a £500,000 scheme to open new accommodation close to Leeds Children’s Hospital for the use of parents and siblings of young cancer patients. A nearby cottage has been purchased by the children’s cancer charity Candlelighters and with planning permission granted earlier this month, it is hoped work can soon begin on transforming the empty property into a new space with room for four families per night to stay there.
The Kentown Wizard Foundation, which assists children with terminal illnesses and life-limiting conditions, has agreed to match-fund the project with up to £250,000, while Candlelighters’ own fundraising efforts have collected £30,000 so far.
Andrew says bringing his own technical expertise to the project is an opportunity to say thank you to the charity for their support while Robert was in hospital. “Obviously there were long periods of treatment, bed Isolation and many ups and downs over a 12 month period,” he says.
“During this time the support Candlelights gave to Georgia, Jane and I and Robert along with everyone on the children’s cancer ward was fantastic. The pastoral care demonstrated by the playroom assistants, teaching staff and other support workers brought to us a kind of stability in very difficult circumstances. Candlelights supported our whole family unit and not just Robert who was going through some very difficult treatment at the time.”
The family live in the village of Birkenshaw near Leeds and Robert says they were fortunate to be so close to Robert’s cancer unit for the months he was in hospital. But with the specialist oncology unit providing care to children from vast swathes of Yorkshire, he says many families were not so fortunate to live close by, with some coming from hours away.
Rules on the ward mean only one parent can stay overnight at a time on a fold-out bed, while the current home from home provision at Leeds Children’s Hospital is oversubscribed by approximately 10 families per night, meaning a parent is either away from the child with cancer or away from their siblings for extended periods of time.
Andrew says the new cottage offers a priceless opportunity to allow families to be close by in the evenings, provide an important sense of normality, allow some rest and recuperation and also reduce some of the massive financial impact that comes with dealing with the costs of travel and accommodation.
“The difference it will make is it will help keep a family unit together. When you have got a sick child in hospital you are basically living as separate parents for quite a while and do things in shifts. As well as looking after your child, you have got to make money and pay the bills. The cottage will give families a place to stay outside the hospital environment yet within walking distance which is critical for any family with a sick child that has long periods of time on the ward.”
He says that it is difficult for both children and parents to process the initial shock of a cancer diagnosis. “It is a shocking impact straight away of walking on to a kid’s cancer ward with a child that looks normal and healthy but at eight years old, they see the other kids on the ward who have lost their hair and have tubes coming out of them left, right and centre. The first thing they say is, ‘Am I going to lose my hair?’
“It is a strange environment to be in. You have got long periods of time where you have nothing to do. At the beginning he was probably in hospital for a good three months with lots of infections and various bugs he couldn’t shake off. He got down to a very low weight, about four-and-a-half stone. It was horrible to see. You are trying to keep some kind of normality even though it is an absolutely dreadful disease.”
In his family’s case, Robert started chemotherapy but it soon became apparent that the treatment was not working and the only realistic alternative was a bone marrow transplant. His sister Georgia was found to be a match and the transplant went ahead around six months after his initial diagnosis.
“Georgia was 18 months behind Robert and followed him everywhere. She just wanted him to get better. The transplant is tough; on the donor it is tough as it is a needle in the back and harvesting bone marrow. For Robert, he had to have full body radiotherapy where they basically get everything out of your system so they can start again. But within 12 months, we were relatively comfortable that it had worked.”
Lucy Brown, a spokeswoman for Candlelighters, says that Andrew volunteering as project manager will help save a huge amount of money and ensure the right building standards are met so work can be completed safely. She adds the new cottage has the potential to make a major difference to the lives of affected families.
“Our families tell us that staying in hospital can be a traumatic and scary experience for a child and having their loved ones there to comfort them and to add a sense of normality to their lives is invaluable. Our newly purchased cottage is just a stone’s throw away from Leeds Children’s Hospital and will provide family rooms to ensure that children with cancer can have both their mum and dad with them and their siblings too. The cottage will provide a family with their own private bedroom that is a quiet and calm place to get a good night’s sleep in a comfortable bed. A well-rested parent is an asset to a child’s care as it puts them in a much better position to support their child, comfort and entertain them during the day.”
Lord Mayor’s Appeal supporting fundraising
The Lord Mayor of Leeds is backing the £250,000 fundraising appeal for the Candlelighters’ Cottage.
Councillor Jane Dowson has selected the campaign as her chosen charity for the Lord Mayor’s Appeal this year.
The money is needed to help cover the costs of purchasing and refurbishing the property.
She says: “I am really looking forward to raising lots of money to support the very special work that Candlelighters do and would encourage business, groups and schools across Leeds to join us in making a difference for families facing childhood cancer.
For more information, visit www.candlelighters.org.uk/howyoucanhelp/the-candlelighters-cottage.