With only 40 days left to raise £100,000 for her cancer-stricken toddler, Eileidh, Gail Paterson shares her story of an emotional road to Hell with Susan Welsh
Like a lot of other three-year-old girls, Eileidh Paterson loves dressing up like Princess Elsa from the Disney movie, Frozen. Having pulled on her princess-style dress she sings along to her favourite songs, all the time playing with the long blonde hair which gently tumbles over her wee shoulders.
Except it’s not her hair, it’s an Elsa wig. The wispy blonde curls Eileidh used to have are long gone, thanks to the huge doses of chemotherapy which have been blasted into her body, a body which is only now big enough to fit into clothes designed to fit a child aged 18-24 months.
What this teeny toddler does have is a heart the size of a lion, and the courage to match it. She’s been to Hell and back – a journey that isn’t over yet – while for the past year, her mum Gail has been living every parent’s worst nightmare.
She is in a desperate race against time as she has only around 40 days to raise £100,000, money needed to send Eileidh to America for pioneering cancer treatment. The youngster, who Gail calls her “little warrior” has an aggressive form of cancer, high risk neuroblastoma, which causes tumours to spread throughout her body.
She’s spent much of the last year in and out of hospital, undergoing the sort of intensive surgeries and treatments that would cause most adults to weep, but for most of the time, she’s bravely endured these with a smile.
A NORMAL WEE GIRL
Gail, 39, who is also mum to Callum, 17, Ciaran, 12, and Cerys, 11, said: “I had a normal pregnancy with Eileidh but had a C-section when her heart rate started dipping, but other than that everything was fine when she was born in March, 2012, weighing six pounds, one ounce.
“She was just a normal wee girl then one day I noticed her breathing was very laboured – she couldn’t catch her breath.
“One of her brothers has asthma and was prone to chest infections so I suspected that was what was wrong with her. She’d also a bit of a swollen tummy but a lot of kids have pot bellies so I wasn’t hugely concerned about that.”
What happened next was to change the family’s life.
They visited their GP and suspecting trapped wind, were sent home with medication but advised to come back the following day if there was no change.
“She was still the same and very quiet, which is not like her, so we went back the next day. This time the doctor told us to go straight to A&E in Aberdeen.
“At this point I still wasn’t overly concerned as I’d had some experience of childhood illness before, as Callum had been seriously ill when he was six weeks old and Cerys had appendicitis and has IBS.”
Doctors at the Royal Aberdeen Children’s Hospital spent the night carrying out scans and tests on Eileidh and the following day revealed she had a rare and deadly tumour raging through her body.
“They took us into a small room to break the news. It was the last thing I expected to hear. I couldn’t take it in as I was in shock and felt like I was on auto-pilot,” said Gail.
“A couple of days later we were told it was a high risk neuroblastoma and that the main tumour was on her adrenal gland but wrapped around the artery to her right kidney, which had ruptured it. Her stomach, right lung and chest were filled with blood – they took five litres of blood out of her chest alone.
“Eileidh was brilliant, she never complained once. Four days later it had spread to her bone marrow, lymph nodes, lower left jaw and pancreas but looking at her, you wouldn’t have known anything was wrong with her.
“The only sign was her swollen belly, the pot had almost doubled in size since she’d been admitted to the hospital. It was so big that when she was lying down, it looked like she was pregnant; her stomach just kept growing.
“By this point Eileidh kept crying and asking to go home, but it came to the stage where we spent so much time at the hospital, that she thought it was her home.”
To make it feel like home, hospital staff worked tirelessly to make Eileidh feel special, giving her her own box of toys, while Gail slept on a bed next to her the whole time. Since then Eileidh has undergone intensive surgeries and treatments, spending much of the past year in a variety of hospitals across the country.
“When she first started the treatment it was horrible. She didn’t move, she just cried and moaned and would look right through you as though you weren’t there.
“As a parent that was awful to see as she just wasn’t interacting with anyone. We had no idea what to expect but it was just awful seeing her like that,” said Gail.
The brave wee girl has shown immense strength and courage while undergoing procedures including 31 blood transfusions, 32 anaesthetics and six bone marrow aspirates – which is where they stick a needle into the back of her pelvis; 11 radiotherapy treatments, 42 bouts of chemotherapy, 17 of which have been high dosage which has meant spending 20 days in isolation.
Eileidh’s parents separated before she took ill and the impact of having an ill child has taken a huge toll on the family, who originally lived in Aberchirder. Callum, a pupil of Gordon Schools, Huntly has had to forgo the normal temptations of teenage life to help look after his siblings.
Because their Aberchirder home was too far away from a hospital, Eileidh wasn’t allowed to return home until they found a closer one.
“The council were fantastic and arranged for us to have a house in Forres which is closer to Dr Gray’s Hospital,” said Gail.
“Her reaction to being in the new house was strange as she thought the hospital was her home and kept asking when she was going back home.”
While her home life is currently more settled, life is far from normal for Eileidh as her immune system is so weak she can’t mix with other young children – the risk from everyday childhood diseases such as mumps and measles could kill her.
Instead she spends hours with her family and a few selected friends, playing in a back garden transformed into a mini playground for her, running up and down the chute and tiring herself out on her bouncy castle.
She is still undergoing procedures and is one of 2,300 children in Europe selected to receive immunothrapy treatment which can leave her in extreme pain but could lower the 80% risk of the disease returning. It finishes soon and it’s hoped the final scans will show no evidence of the disease.
“Eileidh has one of the most aggressive types of cancers and it has a very high relapse rate and there’s no cure for it. If you relapse it’s harder to get rid of a second time and there’s no treatment available in this country to prevent a relapse,” said Gail.
“Through research, the oncologist and charity NCCA (The Neuroblastoma Children’s Cancer Alliance UK) charity, I heard about a clinical trial of drugs which is available in America but not available in the UK until next year. But next year is too far away for Eileidh.
“I have been told the treatment is very encouraging in reducing relapses, and British oncologists recommend it – our oncologist said it’s definitely worth trying.
“If we don’t get her the treatment in America and the cancer comes back then I will feel that I haven’t done everything I can for her.”
The family needs to raise £100,000 for the treatment which she’ll receive at the Helen DeVos Children’s Hospital in Michigan, US in June. It’s a two-year trial period which will involve visiting America for a week at a time for at least eight weeks.
“If we don’t do this, as a family we will never be able to sit back and relax, that danger will always be there. It could be weeks, months or years,” said Gail.
“If we don’t get the money and Eileidh relapses then I’ll feel I just haven’t done enough for her. She needs every chance she gets, even if that’s a slim one.
“It has already taken her chance of being a mum. That’s the only definite thing we have for the future that if she does survive, she’ll never be able to be a mum herself.”
DOING THEIR BIT
As for Eileidh, who is still mostly fed via a tube, she has no idea about how much effort is going on, on her behalf. Across the country hundreds of people are doing their bit to help raise the £100,000 needed for the specialist treatment.
“To keep family and friends up to speed with what was happening, I set up the Facebook page, Eileidh’s Journey which now has 4,000 followers. Some of these people have taken her into their lives and everyone has been hugely supportive.
“I can’t thank them enough for what they are doing but I only have until the start of June to find the funds needed. Even if people donated £1 each it would make a huge difference.”
The charity NCCA UK helps children access potentially life-saving treatment, whilst supporting research that not only aims to introduce new treatments but also bring existing internationally available options to the UK.
It supports parents by sharing the most current resources available for neuroblastoma treatments and providing access to other parents who want to share their knowledge and experiences.
Chief executive of the charity, Bettina Bungay-Balwah, said: “Two children a week are diagnosed with neuroblastoma in the UK. It’s a dangerous and deadly disease affecting more under fives than any other form of childhood cancer.
“It is also a very hard disease to diagnose and when parents finally do hear the devastating news that their child has neuroblastoma, it will often have spread throughout the child’s body.
“What they need is information about the disease, and about access to treatments and we’re here to help them. We’re also here to fund and facilitate international research to make more treatments available, particularly here in the UK.”
Contact: www.ncca-uk.org