When the door of their isolated rural home knocked late at night, Nicky and Stephen Fuller knew instantly that something must be wrong.
Their GP had called in person to deliver the devastating news that hospital tests carried out earlier that day showed that their beautiful four-year-old daughter Sascha had leukaemia.
The overwhelming shock as they packed their bags and left for a month long stay in hospital was so consuming that it was over a year before Nicky, (42) could recall any of the details of that terrible night.
“Our lives just stopped that day,” she says.
“I’m a nurse so you would think I would be able to cope but I knew things that frightened me.
“I was like a robot; I just knew that I had to be strong and not show Sascha how upset I was. It was so painful that I couldn’t recall the memories of that night for a long time afterwards.”
Little Sascha was being treated for tonsillitis from November 2010 until her diagnosis in February 2011, 12 days after her fourth birthday.
In that period she had received 11 courses of antibiotics but was losing weight and had no energy.
When her temperature shot up to 40 at the end of January and all her mum’s best efforts failed to get it down, she was sent to the Ulster Hospital for blood tests.
It was later that night that her parents received that frightening knock at their front door which put the whole family on a traumatic journey.
Sascha was diagnosed with acute lymphoblastic leukaemia and has been receiving chemotherapy ever since.
She still managed to start school and is now in Primary Two at Kircubbin Integrated Primary and will continue to receive chemo until April of next year.
Her lovely long blonde hair has fallen out twice and little Sascha longs for the day when it will grow back.
Nicky says the family could not have coped with the last two years if it hadn’t been for the support of leading children and young person’s cancer charity CLIC Sargent. “Our lives changed forever the day Sascha was |diagnosed with leukaemia. We have had to find strength and coping skills we never knew we had to face each challenge.
“We could not have done this without the help and support of the CLIC Sargent social worker Bridget and play specialist Naomi.
“They have had a major impact on our lives helping us to develop strategies to cope with each stage. I don’t know how we could have managed without them. It was like having an extended family there to support you.”
Working at home with Sascha, the charity’s play specialist Naomi used toys, rhymes and stories to prepare the bewildered and frightened child for her hospital visits.
“Naomi was a breath of fresh air during a very difficult time,” says Nicky.
“She helped Sascha to deal with what she was going through and helped to make her less afraid about her treatment.
“Naomi used toys to help explain all of the hospital equipment. She helped Sascha to talk through play and really lightened the atmosphere for all of us.”
Nicky had to take time off her nursing job at the Ulster Hospital while Stephen (43) also needed extended leave from his job as a Royal Mail manager.
Having a child so ill leads to unexpected extra bills which put another pressure on the couple at a time when they were already crippled with worry about their daughter.
Again CLIC Sargent stepped in to relieve this pressure. Nicky says: “There are a lot of sleepless nights during that first few weeks and you start to worry about how you are going to cope with the practical things like paying your bills and mortgage. You definitely start to worry about money and the financial impact of a diagnosis like leukaemia.
“That’s when Bridget our CLIC Sargent social worker came to see us. She just seemed to know exactly what we needed. She advised us about financial grants and all of the help that was available to us.
“It was such a massive relief. Even just to talk to someone about those practical things was a big help. People don’t think about all of those practicalities. My mobile phone bill in that first month was more than £150 because I needed to keep in touch with people from Sascha’s bedside.
“Sascha also gained lots of weight due to her treatment so we needed to buy her an entire new wardrobe. We were also spending a lot of money on food; the only place close to us was very expensive so simple things like lunch and dinner really started to add up.
“The CLIC Sargent financial grant was brilliant; it helped us to take care of some of those
practical things. Just to be able to talk about these things was a big help as we couldn’t talk to doctors and consultants about the practicalities.”
The couple faced a 90-minute journey daily to hospital from their home in Portaferry in those first months, usually leaving for home at 11pm at night when little Sascha was feeling sick and exhausted after her treatment.
Nicky said a Home from Home would have been invaluable to the family: “It would have been fantastic for our family.
“We could have relocated to Belfast instead of having to travel constantly with a sick bowl in the car.
“We were leaving early in the morning and returning late at night. Parking was also a big problem, so we were physically exhausted at the end of every day.
“We could have restored some normality with a Home from Home. Even just to have dinner together or go and do some proper food shopping. It would be somewhere we could go together to relax, away from the hospital environment.”
Here’s how you can help raise cash ...
The Belfast Telegraph has teamed up with CLIC Sargent to raise £50,000 before Christmas towards the charity’s appeal to build two Homes from Home in Belfast for families of children with cancer.
We want our readers to get behind us and help us raise the money to fund this vital service.
So why not make a huge difference this Christmas and get involved in the Belfast Telegraph Christmas Appeal for CLIC Sargent.
Whether it’s at work, at school or at home here are some ideas to inspire you to get fundraising:
- Instead of sending Christmas cards to your colleagues, teacher or friends, why not send CLIC Sargent cards or donate the amount you would have spent on Christmas cards?
- Ask your boss to make a donation to CLIC Sargent instead of buying gifts for customers;
- Hold a Christmas coffee morning at home with friends and relatives;
- Take part in a CLIC Sargent festive sweepstake. What will be the first Christmas song at your Christmas party?
- Make a Christmas cake and ask your colleagues to guess how much it weighs in return for a donation. The closest guess wins the pudding!
- Hold a Christmas party and sell tickets to colleagues to raise money, or organise a Christmas themed pub quiz. Pay to enter a team and test your seasonal general knowledge! Make sure you include some carol-oke…
- Have a Christmas dress down day — make a donation to come to work or school in festive fancy dress! Why not have a prize for the best costume?
- Hold a CLIC Sargent Secret Santa in your workplace — as well as a gift, participants make a £5 donation to CLIC Sargent;
- Hold a Christmas bake sale and sell mince pies and mulled wine.
Whatever you decide to do, you can contact CLIC Sargent on 028 9072 5780 for advice and support to help you spread the Christmas cheer.
Donate online at virginmoneygiving.com/Belfast-TelegraphChristmasAppeal.
Text CLIC04£ followed by the amount to 70070. Or post cheques, payable to CLIC Sargent, to CLIC Sargent Belfast Telegraph Christmas Appeal, 3rd Floor, 31 Bruce Street, Belfast BT2 7JD.