‘Big, black ball of fear stopped me breathing’, says mum of girl ‘riddled’ with cancer after bringing Christmas forward

EVERY family wishes for a healthy and happy Christmas with all the family.

But for the Smiths, from Bristol, they tried to put on brave faces knowing their four-year-old daughter Apple was “riddled with cancer”. 

SuppliedApple Smith at Christmas in 2021, which the family brought forward so she could have her chemotherapy on Christmas Day[/caption]

Apple is fronting Neuroblastoma UK’s Big Give Christmas ChallengeSupplied

Apple, six, began suffering symptoms of tummy and leg pains in the summer of 2021 just before her fourth birthday.

She was normally the “happiest, healthiest little girl”, so her parents – Anthea, 46, and gardener Uriah, 45, never imagined a nightmare stage 4 cancer diagnosis.

Anthea, a senior manager at BT, also mum to Tallulah, three, said: “Uriah and I made several trips to see our GP, and then visit A&E, but got nowhere.

“Finally, on August 9, 2021, we took her back to the Bristol Children’s Hospital with hip pain, and the doctors decided to do an X-ray.

“They told us they’d spotted something and wanted to keep her in overnight for further tests.”

Two days later, Anthea was at home taking care of Tallulah, who was one at the time, when she got the news that her eldest daughter had stage-4 high risk neuroblastoma.

The cancer affects around 100 children in the UK every year.

Anthea said: “Uriah put me on speaker phone from the hospital so I could hear it straight from the doctors. I was in total shock.

“I felt like there was a big black ball of fear inside me stopping me from breathing or crying. 

“At that moment I wanted to know if IT was days or weeks we had left with our gorgeous girl.

“She had cancer spots all over her body, including her skull and her spine.

“The cancer was in her lymph nodes, blood and bones – hence the hip and leg pains – and there was a massive tumour in her abdomen.

“When I finally managed to get some words out, I asked, ‘How long will she live?’.

“SI remember very clearly the doctors saying, ‘We aim to cure her’, which was like a lifeline for us, something to hold onto when we genuinely felt all hope was gone.

“It was so hard to see this as one tumour – it was simply everywhere, in every single part of her body, and we’d need a miracle for her to survive.”

Apple – who named the tumour in her tummy ‘Monster Teddy’ – began six rounds of chemotherapy through a Hickman line, and Anthea was given time off work to be by her side.

She said: “It [the chemo] was so toxic, it would burn her if injected normally. 

“I was given six weeks off work by my boss, which was incredible, giving me the time to be there for her and also Tallulah, who had no idea where her older sister had gone, why mummy and daddy kept going away.”

What is neuroblastoma?

Neuroblastoma is a type of cancer that develops in nerve cells that have been left behind from their development in the womb.

It usually develops in the adrenal glands next to the kidneys but can also form in the spinal cord, neck, chest, pelvis or abdomen and is able to spread to other organs.

It is unknown what causes the cancer but it affects around 100 children in the UK every year with many of them under five.

The outlook for children diagnosed with the condition varies and mainly depends on if the cancer has spread.

The early signs and symptoms of neuroblastoma can be very hard to spot, especially in young babies as they can be mistaken for other common conditions.

However, according to NHS Choices, signs and symptoms of neuroblastoma include:

A swollen painful tummy
Constipation
Breathlessness
Difficulty swallowing
A lump in the neck
Blue lumps on the skin and bruising
Fatigue, weakness and bone pain
Jerky eye and muscle movements

Apple’s hair fell out suddenly. Anthea said: “I lifted a T-shirt off her head and it fell into her eyes and then onto the floor. 

“Straight away I rushed us to the local hairdresser where I said we were both getting grade-2 cuts, and had mine first so she could see it was fine.”

The chemotherapy was weakening Apple’s body at a time when she should have been starting school.

Anthea said: “It felt like the moment she was almost recovered from one round of chemo, she’d get hit with the next one.

“High on morphine and tramadol, she couldn’t eat at all, so relied on a TPN line into her stomach for all her nutrition, and at one stage got such bad headaches she was screaming and screaming.

“It was simply horrible to watch, but we knew it was her only chance of survival.

“Apple’s weakened immune system meant we were going into our own personal lockdown all over again. 

“She just kept saying she wanted the ‘Monster Teddy’ to go, and to see her friends again.”

‘We needed a miracle’

By the end of October, scans showed Apple had responded well to chemo – the 14 cancer ‘hot spots’ had been reduced to seven, but the tumour in her abdomen had stayed the same size. 

Surgery to remove it was risky and complicated and took ten hours instead of the six hours predicted.

Anthea said: “We were told there was a real risk of cutting one of her arteries, resulting in severe blood loss and death, so we had to prepare for the worst.

“Seeing her recovering in hospital with a simply huge rainbow scar from hip to hip where they’d opened her up, we’d never seen her so weak and poorly.”

Apple still had a way to go, and began more chemotherapy a few weeks later, on Christmas Day, followed by stem cell harvesting, a blood transfusion and radiotherapy. 

Anthea said: “In December 2021, we brought Christmas forward a week as Apple needed chemotherapy on Christmas Day.

“We just about managed to enjoy some time together over Christmas, but knowing the new year held more in store.”

Talking of her chemotherapy, Anthea said: “She was vomiting constantly, she couldn’t even watch TV she was so sick, and had to be fed through a TPN line for six weeks.

“She didn’t even cry, she was so beaten and exhausted.

“By mid-April, for the first time since her diagnosis, we started to see the old Apple coming back.

“I remember sitting at our kitchen table and seeing an eyelash coming back and rushing to tell Uriah to come and look. I’ve never been so excited in my life!”

Apple started going back to nursery for the occasional hour, and started her immunotherapy – five rounds of 35-day courses in which her body is injected with drugs which encourage her body to fight the cancer by itself.

Apple, six, with her sister Tallulah, three, mum Anthea, 46, and dad Uriah, 45Supplied

The high doses of chemo weakened Apple’s bodySupplied

Finally, last November, the family got the news they’d prayed for – Apple was in remission, with no signs of cancer in her body.

“But while that was amazing news, we knew only too well how high the relapse rates are for neuroblastoma,” Anthea said. 

The family had a very muted, small Christmas in 2022.

“That first year after going into remission you really can’t relax at all,” Anthea said.

“Apple was still simply exhausted from her treatment, needing regular naps and really not back to her old self at all.”

But month by month Apple grew in strength, and each scan showed the cancer hadn’t returned, and she started primary school in September of this year, aged six.

Anthea said: “This year we’ve celebrated her one year in remission, and we’re celebrating Christmas in style. We’re basically making up for lost time. 

“She’s a normal kid now, and with her younger sister in tow, the excitement levels are going to be stratospheric.

“But not all children are as lucky as Apple. Too many children die from neuroblastoma.

“More research is desperately needed to improve treatment and give children like Apple the future they deserve.”

Apple is fronting Neuroblastoma UK’s first matched-funding campaign with the Big Give Christmas Challenge, and stars alongside the charity’s celebrity Patrons Alan Carr and Scott Mills in a promotional video.

Apple’s family have raised over £13,000 for Neuroblastoma UK.

Nicki Gillard, fundraising manager, said: “Children with neuroblastoma desperately need our help.

“High risk neuroblastoma has one of the lowest survival rates of all childhood cancers but despite our best efforts, research into neuroblastoma remains critically under-funded in the UK.”

Apple in hospital on Christmas Day 2021Supplied

SuppliedMum Anthea had her hair cut off as soon as she saw little Apple’s coming out[/caption]

Supplied Apple and her family had a small Christmas in 2022 after the news that Apple was in remission[/caption]

Supplied Anthea said the family are ‘making up for lost time’[/caption]   

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