Grateful family urge others to support vital Cancer Research UK fundraising through TK Maxx initiative

Now, the sassy two-year-old who was successfully treated last year, is joining her mum in backing a charity drive to encourage the public to have a good clear out for a worthy cause.

Little Ella Rose Smart and mum Nicola are giving their support to TK Maxx’s Give Up Clothes for Good campaign, in support of Cancer Research UK for Children & Young People.

They are encouraging the public to donate any pre-loved quality fashion and homeware they no longer need to their nearest TK Maxx store.

Ella’s family – from Crumlin – understand all too well the importance of new scientific breakthroughs and are now determined to help raise vital awareness and funds for life-saving research. There are 130 new cases of cancer in children and young adults aged 0-24 in Northern Ireland each year.

Mum Nicola was preparing to return to work in January 2023, following maternity leave, she was totally unaware of the disaster that was to befall her beautiful one-year-old daughter.

"Ella’s stomach was swollen and her stools were light, “ Nicola explained. “Obviously this concerned me so I visited my GP who queried a dietary problem, perhaps a milk allergy.”

Changing her diet did not help and this led to the possibility of constipation being queried.

“Unfortunately, at this stage we were struggling to get Ella to drink fluids,” continued Nicola, “ and as the medication prescribed consisted of up to eight sachets per day dissolved in water, that was not possible.”

Ella’s parents’ concern was heightened by the fact that they had reached September, without any clear diagnosis as to what was making their little girl so ill.

When Nicola noticed a lump in the right side of Ella's lower abdomen, she decided to send a photo to her sister-in-law – a pharmacist – for her opinion. Fortunately she happened to be having coffee with a friend who is a paediatric pharmacist who, when she saw the photo, suggested a visit to A&E.

" then sent the photo to the out-of-hours doctor who advised me to contact our GP and ask for a rapid referral,” said Nicola, “but as there was going to be a delay in arranging this, we decided to go straight to A&E ourselves.”

X-rays and an ultrasound were taken and at this stage Nicola became very worried.

"I just knew it was not good as they hadn't taken the cannula out of her hand, so I went outside to call my mum.” she said.

During her absence, an oncologist came to speak with them so Ella’s dad Niall said “just tell me and I can tell her” to which the doctor replied “no I need you both here.” That was when they received the devastating news little Ella had hepatoblastoma, a very rare type of liver cancer that usually affects young children, mostly diagnosed in those under two. Her tumour was 15cms long and 10cms wide.

Ella was admitted Immediately and as it was Children’s Cancer Awareness Month, Nicola saw that sign when they entered the ward.

"That was when I broke down completely,” she said. “Seeing the word cancer, we began to fear the worst and were too scared to even consider what lay ahead for our baby girl.”

The liver produces a protein and a tumour marker called AFP checks the level of this. The level should normally be under 50 but Ella’s at that stage was showing 450,000 plus. Although the oncologist was 99 per cent certain it was Hepatoblastoma, a biopsy was needed in order to confirm. Sadly this was the case and two days later Ella was brought into theatre to have a central line fitted so she could begin treatment.

However, there was an added complication in that the tumour was near the aorta (the largest artery in the body) and the vena cava (the largest vein in the body) so in order to be able to perform surgery, it was necessary to try and shrink it so it would move away from these blood vessels. Ella was treated with a combination of chemotherapy drugs, one of which was Cisplatin – a drug Cancer Research UK played a significant role in the development and testing of.

Thankfully, following seven cycles of chemo, the tumour shrunk enough to allow surgery. “We were so relieved,” said Nicola, “had the tumour not shrunk the next option was transplant.

"It was devastating to watch Ella endure so much, yet through it all she smiled. In fact, she was frequently sick due to the amount of chemo she had, but she just laughed, said ‘haha mummy I boke’ and carried on.”

Ella’s brother Daire, aged three, found this really tough as his mum and dad were away at hospital a lot .

“Around two months into Ella's treatment Dáire began to become very emotional and tantrums became more frequent,” Nicola said, “ and he got very upset when he knew we had to take her to hospital. Even to this day he still gets upset when he knows we need to take Ella to hospital, even when it is just for check-ups. I think he is scared she won’t come back again.

"Due to this, we were unsure how we would explain to Daire about Ella’s loss of hair, as we didn’t want to frighten him” continued Nicola, “ but as he had just had a haircut Niall said that Ella had also had one and he seemed to accept that. It was actually quite funny as Ella, having been born with a mop of black hair, used to twirl it when going to sleep. But she found an alternative and just twirled mine!

"However, In the run-up to Ella's surgery she was required to take a three-week chemo break so her body had a chance to recover before surgery. As this fell over Christmas it gave us the opportunity to spend quality time at home as a family – all four of us together - which seemed to really help and reassure him.”

Ella was then flown to Birmingham by air ambulance where she had surgery to remove half her liver and gall bladder. When she was one week post-op, she flew back to Belfast to have her remaining three cycles of chemo, finishing her last round on the March 13 – five days before her second birthday.

The good news is, exactly one year from diagnosis, Ella is now in remission and the AFP number which was so alarmingly high (450,000 plus) is now sitting at 3. She will have scans and bloods checked every three months until she is signed off for sixth monthly, then 12 monthly. This is important as she has had so much chemo it could affect her hearing, kidneys and heart.

Her mum said: “We would like to extend our sincere thanks to the staff at the Royal, especially to those in the Oncology ward and clinic, as well as Ella's consultant, Dr. McCarthy. We are also incredibly grateful to Mr. Shariff and his team in Birmingham for their expertise and care in performing Ella's life-saving surgery.

"We would also like to acknowledge the invaluable support of the charities who stood by us during this difficult time, including Cancer Research UK for their ongoing research in developing treatments for children like Ella. Research has given us many more precious moments with her - it’s the reason she’s still here today. That’s why raising money for Cancer Research UK for Children & Young People is so vital.

"We want to help families like ours have more moments too, so Ella and Daire will be helping me have a good clear out at home to find clothes and things to donate. We hope our experience will inspire others to do the same. Their unwanted items really could save lives.

"Our family has been through so much devastation and trauma, but Ella battled through it all with a smile on her face and a huge amount of sass. No words can ever begin to describe how proud we are of her. Dáire has been the best big brother through everything and we are so grateful that we get to watch the two of them grow up together as we heal our little family that cancer tore apart.”

Cancer Research UK has helped to more than double children’s cancer survival in the UK since the 1970s. Today, more than eight in 10 children and young people diagnosed with cancer will survive for at least 10 years, but there’s still much further to go.

Cancer Research UK spokesperson for Northern Ireland, Jean Walsh said: “We’re grateful to Ella and her mum Nicola for helping to shine a light on some of the challenges faced by children like Ella that our scientists are working to tackle. Cancer is different in children and young people from the types of cancer that affect this age group to the long-term effects of treatment, such as hearing loss and infertility. So, it needs different and dedicated research which campaigns like Give Up Clothes for Good help to fund.

"It’s thanks to the generosity of our supporters, we are beating cancer. Step by step, day by day. More than nine in 10 children and young people with cancer who receive cancer drugs on the NHS receive a drug linked to our work. And we’re unlocking discoveries about these cancers and translating them into new and less toxic ways to treat them.

"Many of the world's most successful trials of children's cancer treatments have been funded by Cancer Research UK. These trials have led to better treatments that have helped more children and young people with cancer live longer, better lives. The Royal Hospital for Sick Children in Belfast is one of the many centres across the UK taking part in ground-breaking clinical trials coordinated by Cancer Research UK’s Children's Cancer Trials Team. These trials make innovative new treatments available to children with cancer in Belfast.             

"But, despite huge progress, too many young lives are still lost to this devastating disease. By donating any quality clothes or goods to their local TK Maxx store, people across Northern Ireland can help ensure more young people can live longer, better lives free from the fear of cancer.”