I was told my little girl was just constipated – doctors fobbed me off with laxatives and now I need £300k to save her
A MUM pleaded with doctors to give her toddler a scan after they said the three-year-old was just constipated.
Claire Tudor had been sent home from A&E with her toddler Gracie two days earlier.
The mum took Gracie back as her tot still had a 40C temperature and was worryingly unwell – but doctors still wanted to send her home with laxatives.
Claire, 34, from Dudley, West Midlands, pleaded for Gracie to be given a scan at Dudley Urgent Care Centre at Russells Hall Hospital in March 2023 – it revealed an 8cm mass on her liver.
Two weeks later she was diagnosed with rare stage four neuroblastoma cancer, which affects about 100 children a year in Britain, according to Cancer Research UK.
Claire said: “Hearing those words from the doctor was heartbreaking – no parent wants to be told their child has cancer.
Gracie is now undergoing gruelling treatment while her family are fundraising £300,000 for “lifesaving” therapy in the US that isn’t available in the UK.
“It’s been an agonising six months, and we’re still not over it,” the mum said.
“To see Gracie go through such gruelling treatment has been incredibly hard. She’s such a resilient little girl, and she is battling on.
“I’ve literally had to hold my two-year-old down while doctors have put a catheter in her and cannulas in her tiny body. Watching her get all these tests done while she’s wide awake was horrendous.
“It broke my heart to hold her down while these things were happening.
“At one point Gracie was just 11kg, she was absolutely tiny and just skin and bone.”
Even if Gracie is declared free of disease, mum Claire said she’s been told to keeping fighting to get the tot to America for treatment.
She explained: “It’s a vaccine that trains the body to use its immunity to kill cancer cells and we’re desperate to get this for Gracie.”
‘She just wasn’t herself’
In March this year, when Gracie refused her food and hadn’t been to the toilet for two weeks, Claire couldn’t get an emergency GP appointment, so she took her then two-year-old daughter to Dudley Urgent Care Centre at Russells Hall Hospital.
She claims it took 12 hours for a doctor to see them, and nurses thought Gracie was constipated. But when Gracie started to become really lethargic, Claire raised the alarm.
Gracie was admitted to hospital and was given antibiotics for two days to treat a water infection before being sent home on March 15. No further investigations or scans were done.
When Gracie started crying in pain two days later on March 18, Claire rushed her back to the urgent care centre at Russells Hall Hospital, concerned that she could have appendicitis.
Claire pleaded for an ultrasound, and after 10 hours, they were seen.
She said: “She was so lethargic, you could tell she just wasn’t herself. Her cheeks were red raw, her temperature was 40c and I wasn’t leaving without a scan.
“I demanded an X-ray or ultrasound and eventually after 10 hours they did an X-ray.
“They thought it could be appendicitis, but then they ultrasounded her around her back. The doctor didn’t talk to me, he sat in silence before running out of the room.
“He kept scanning below her rib cage then I noticed that she was slightly swollen on one side.”
An hour later, Claire was told Gracie had a 8cm mass on her liver, which might be cancerous – and an ambulance took them to Birmingham Children’s Hospital the same night.
A shock diagnosis
An MRI, CT scans and two biopsies followed over two weeks and Gracie’s condition deteriorated.
A scan found the tumour on the right adrenal gland had grown to 15cm in a week and she needed to start chemotherapy.
Gracie, who loves all things Disney, was diagnosed with stage 4 high risk MYCN amplification neuroblastoma and it had spread to her bone marrow and her back.
Neuroblastoma starts in a type of nerve cell called a neuroblast, commonly in the adrenal glands or nerve tissue in the tummy.
For about half of the children with the disease, it will spread other places like the bones, liver, skin and bone marrow, Cancer Research UK said.
Claire recalled the moment it was confirmed that little Gracie had cancer.
She said: “I didn’t know it was definitely cancer so it was a shock when we arrived and I saw Gracie’s name listed on an oncology whiteboard.
“Over the next week, Gracie went downhill quickly and they thought she was bleeding internally but they found out the tumour on the adrenal gland had grown to 15cm in one week.
“We were in the dark for two weeks before we received the diagnosis that she has stage 4 high risk MYCN amplification neuroblastoma.
“The tumour had gone from seven or 8cm to 15cm in a day or two.”
Claire, who works for Number 7 in Boots, stayed at the hospital to be by Gracie’s side while husband Stephen – who has leukaemia and recently had melanoma removed from his head – was back and forth.
Gracie underwent eight cycles of induction chemotherapy and a nine-hour surgery in July in which 95 per cent of the tumour was removed without taking away her kidney.
Gracie is the first child in Birmingham to be randomised for two double high dose chemotherapy and stem cell transplants. She completed her first one in August.
Gracie will now have radiotherapy while she is put to sleep every day for three weeks followed by immunotherapy for five months.
Claire said: “With neuroblastoma patients in the UK, they randomise you for induction chemotherapy, the stem cell and high dose and radiotherapy.
“Gracie smashed all of those and shrunk her tumour from 15cm to 6cm. But unfortunately Gracie has an MYKN gene which makes it more aggressive.
“We did stem cell harvesting at the end of June and doctors harvested 11 million in one day and said Gracie was remarkable.”
After Gracie’s second high dose chemotherapy in October, she’ll stay in hospital for six weeks before having a 60-day break.
Then, she’ll have radiotherapy before immunotherapy. The family have been told once Gracie has no evidence of disease, there is a high chance the cancer will return due to a genetic mutation.
The relapse rate is 60 per cent with a low survival rate.
Constant fear of cancer returning
The family are now raising £300,000 on GoFundMe to assist with treating the genetic mutation so Gracie can live without fear of cancer returning.
Claire said: “They have to try every cancer treatment with this cancer as the relapse rate is 60 per cent.
“We now need £300,000 for a lifesaving vaccine in America that will train Gracie’s body to use her own immunity to kill and attack cancer cells; it is an antibody.
“We are trying to raise funds to assist with treating this genetic mutation once Gracie is well, so that she can live a long and happy life without the constant fear of the cancer returning.
“If it did return, her chances of survival would be slim to none, so we cannot let this happen.”
The family are desperate to travel to the US in July 2024 for the lifesaving antibody vaccination – called a Bivalent vaccine- that trains the body to use its immunity to kill cancer cells.
It is not available on the NHS, as it is still classed as a trial.
If she’s not eligible, she’ll have DFMO treatment – this is a drug that has shown promise as a treatment option for high-risk neuroblastoma, which is said to stop the food that feeds the the cancer.
Claire said Gracie is already eligible for this second treatment option, which would also take place in New York,
More needs to be known about the cancer her little on is suffering from, the mum added.
“There needs to be more awareness of childhood neuroblastoma. If district hospitals carried out urine tests when children show symptoms, they could receive a quicker diagnosis as neuroblastoma gives out a certain protein.
“In a lot of cases, children are not having these tests done for months and delaying diagnosis. In Gracie’s case, to have stage 4 cancer at the age of two is just not right.”
Claire described her daughter as a “brave and remarkable” little girl.
Claire added: “There’s bad days where I have a tear up in the shower but I crack on because I know it won’t always be like this.