A mother pleaded with doctors to give her toddler a check-up after they said the three-year-old was simply constipated.
Claire Tudor had been sent home from the emergency room two days earlier with her toddler Gracie.
The mother took Gracie back because her toddler still had a fever of 104 degrees and was feeling worryingly unwell – but doctors still wanted to send her home with laxatives.
Claire, 34, from Dudley, West Midlands, pleaded for Gracie to have a scan at Russells Hall Hospital’s Dudley Urgent Care Center in March 2023 – which revealed an 8cm mass on her liver.
Two weeks later she was diagnosed with a rare stage four neuroblastoma, which affects around 100 children in the UK each year Cancer Research UK.
Claire said: “Hearing those words from the doctor was heartbreaking – no parent wants to find out their child has cancer.
Gracie now faces grueling treatment as her family raises £300,000 for “life-saving” therapy in the US that is not available in the UK.
“It’s been an excruciating six months and we’re still not over it,” the mother said.
“To see Gracie pull through Such grueling treatment was incredibly hard. She is such a resilient little girl and she keeps fighting.
“I had to literally hold my two-year-old while doctors inserted a catheter and cannulas into her tiny body. It was horrible watching her do all these tests while she was wide awake.
“It broke my heart holding her while these things happened.
“At one point Gracie only weighed 11kg, she was absolutely tiny and was just skin and bones.”
Even though Gracie is declared disease-free, mother Claire said she was told to keep fighting to get the child 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 keen to get this for Gracie.”
“She just wasn’t herself.”
When Gracie refused to eat and went to the toilet for two weeks in March this year, Claire was unable to get an emergency appointment with the GP and took her then two-year-old daughter to the Dudley Urgent Care Center at Russells Hall Hospital.
She claims it took 12 hours for a doctor to see her and nurses thought Gracie was constipated. But when Gracie became really lethargic, Claire raised the alarm.
Gracie was hospitalized and given two days of antibiotics to treat a water infection before being sent home on March 15. No further tests or scans were performed.
When Gracie began crying in pain two days later on March 18, Claire rushed her back to the emergency department at Russells Hall Hospital because she feared she might have appendicitis.
Claire asked 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 and sore, her temperature was 40°C and I didn’t leave without an examination.
“I asked for an X-ray or ultrasound and finally an X-ray was taken after 10 hours.
“They thought it might be appendicitis, but then they did an ultrasound on her back. The doctor didn’t speak to me, he sat in silence before running out of the room.
“He scanned further below her ribcage, then I noticed she was slightly swollen on one side.”
An hour later, Claire was told Gracie had an 8cm mass in her liver that was possibly cancerous – and an ambulance took her to Birmingham Children’s Hospital that same night.
A shock diagnosis
An MRI, CT scans and two biopsies followed over a two-week period, and Gracie’s condition worsened.
A scan revealed that the tumor on her right adrenal gland had grown to 15cm within a week and she had to start chemotherapy.
Gracie, who loves all things Disney, was diagnosed with high-risk stage 4 MYCN amplification neuroblastoma that had spread to her bone marrow and back.
Neuroblastomas begin in a type of nerve cell called a neuroblast, usually in the adrenal glands or nerve tissue in the abdomen.
In about half of children who become ill, the disease also spreads to other sites such as the bones, liver, skin and bone marrow. Cancer Research UK said.
Claire remembered 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 on an oncology chart.
“Above thatWeek Gracie went downhill quickly and was thought to have internal bleeding, but they found that the tumor on her adrenal gland had grown to 15cm within a week.
“We were in the dark for two weeks before we received the diagnosis that she had stage 4 high-risk MYCN amplification neuroblastoma.
“The tumor had grown from seven or 8 cm to 15 cm in a day or two.”
Claire, who works for Number 7 in Boots, stayed in hospital to be by Gracie’s side while husband Stephen – who suffers from leukemia and recently had a melanoma removed from his head – was back and forth.
Gracie underwent eight cycles of induction chemotherapy and a nine-hour surgery in July that removed 95 percent of the tumor without removing her kidney.
Gracie is the first child in Birmingham to be randomized to two double high-dose chemotherapy regimens and stem cell transplants. She completed her first project in August.
Gracie will now receive radiotherapy while she is euthanized every day for three weeks, followed by immunotherapy for five months.
Claire said: “For neuroblastoma patients in the UK, you will be randomized to induction chemotherapy, stem cell therapy, high-dose therapy and radiotherapy.
“Gracie smashed all that and shrunk her tumor from 15cm to 6cm. But unfortunately, Gracie has a MYKN gene that makes her more aggressive.
“We harvested stem cells at the end of June and the doctors took 11 million in one day and said Gracie was remarkable.”
After Gracie’s second high-dose chemotherapy treatment in October, she will remain in the hospital for six weeks before taking a 60-day break.
Then she receives radiation therapy before immunotherapy. The family was told that if Gracie no longer had any signs of illness, there was a high chance that the cancer would return due to a genetic mutation.
The relapse rate is 60 percent with a low survival rate.
Constant fear of the cancer returning
The family is now raising £300,000 GoFundMe to help treat the genetic mutation so Gracie can live without fear of the cancer returning.
Claire said: “You must try any cancer treatment for this cancer as the relapse rate is 60 per cent.”
“We now need £300,000 for a life-saving vaccine in America that will train Gracie’s body to use its own immunity to kill and attack cancer cells; it is an antibody.
“We are trying to raise funds to support the treatment of this genetic mutation once Gracie is well so that she can live a long and happy life without the constant fear of the cancer coming back.
“If it came back, her chances of survival would be slim to none, so we can’t let that happen.”
The family is eager to travel to the US in July 2024 to receive a life-saving antibody shot – a so-called 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 considered a trial.
If she doesn’t qualify, she will receive DFMO treatment – a drug that has shown promise as a treatment option for high-risk neuroblastoma and is said to stop the food that feeds the cancer.
Claire said Gracie was 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 one is suffering from, the mother added.
“More awareness needs to be created about childhood neuroblastoma. If county hospitals conducted urine tests when children show symptoms, they could get a quicker diagnosis because neuroblastoma secretes a specific protein.
“In many cases, these tests are not performed on children for months, delaying diagnosis. In Gracie’s case, having stage four cancer at the age of two is just not right.”
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Claire described her daughter as a “brave and remarkable” little girl.
Claire added: “There are bad days where I have a tear in the shower but I carry on because I know it won’t always be like this.