Mother pays tribute to 'amazing' two-year-old daughter as she battles rare type of cance

Mother pays tribute to 'amazing' two-year-old daughter as she battles rare type of cance

Mother pays tribute to 'amazing' two-year-old daughter as she battles rare type of cancer


Clare Jones from Kingswinford has said her daughter Gracie Tudor continues to fight as she undergoes chemotherapy for neuroblastoma, a rare type of cancer that mostly affects babies and young children.


It develops from specialised nerve cells left behind from a baby's development in the womb and can spread to other organs, such as the bone marrow, bone, lymph nodes, liver and skin.

Ms Jones said the two-year-old had been diagnosed with a tumour on March 18 at Russell's Hall Hospital and had been officially diagnosed with neuroblastoma two weeks ago, with the cancer having spread to her bones recently.


She said that despite everything she had been through, including a tumour growing inside her, Gracie was strong and fun loving and amazing everyone around her with her family dealing with it as best as they could.

She said: "We found out about the tumour on Mother's Day and the only reason she had started chemo was because the tumour had grown from seven by seven centimetres to 15 by 10 in five days, so that was a shock.


"As a family, we are so positive and while it is so upsetting and heartbreaking, we know that she is still here, so we have hope.

"She's been amazing, running around and playing and the nurses just idolise her as she is such a funny character and so strong, even with things like the feeding tube and the nurses giving her her medication."

Ms Jones said she and her husband Stephen had had to give up work for the time being, Clare at Number 7 in Boots in Merry Hill and Stephen as a Steel salesman, and both were being supported by their parents while they cared for Gracie, although Ms Jones said she was hoping to go back to work soon.

There has also been a widespread reaction to Gracie's plight, with a Just Giving page set up to raise funds to send her to New York for specialist treatment not available in the UK.

Ms Jones said that the whole cost would be around £300,000 and said she has been overwhelmed with the funds already raised, currently standing at £40,682, and the response from the public.

She said: "I have been so overwhelmed with the response by everyone, particularly my work colleagues who set up the page for what was originally to take her on a day out to Disney, but as we've got the news that it's high risk, the aim has changed.

"What I would say about this is that we need more awareness of this type of cancer as I thought she was a happy and healthy child and, if I am honest, we need the vaccine here.

"We need it over here and the money will save her life and that's the truth of it."

To find out more about Gracie and to make a donation, go to gofundme.com/f/gracies-treatment-in-america

By James VukmirovicDudleyPublished: Apr 25, 2023Last Updated: Apr 25, 2023


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Toddler with 15cm cancer tumour 'misdiagnosed with constipation by A&E doctors'

Toddler with 15cm cancer tumour 'misdiagnosed with constipation by A&E doctors'

Toddler with 15cm cancer tumour 'misdiagnosed with constipation by A&E doctors

Gracie Tudor has always been a good sleeper, her mum Claire Jones says. That is how she knew something was seriously wrong with her two-year-old daughter when she was restless throughout the night.


But nothing could have prepared Claire for what the next few weeks would bring. After Gracie was screaming in pain, Claire rushed her to DudleyUrgent Care Centre at Russells Hall Hospital on March 13.

She was told by medics that the tot had constipation and they tried to send her home with laxatives. However, Claire knew something was wrong with her daughter and pushed to see a doctor.

The Trust wished Gracie's family well with fundraising efforts and said she had been treated in line with her symptoms. They added she and her family had also been supported with next steps following her full diagnosis.

After Claire pushed to see a doctor the 33-year-old was then left waiting with Gracie for twelve hours while her daughter got gradually more distressed. "We were put into a room on our own and she just slept," Claire told BlackCountryLive.

She added: "The nurses thought that she just had constipation. It took 12 hours for a doctor to come and see us - we got there at 8am and they finally came at 8pm.

"She had no cover and was sweating. She was really flush in the face and I was worried the constipation had gone septic.

"I raised the alarm and said I need a doctor right now. They said she needed fluids asap and she didn't even flinch when they put the canular in she was that lethargic."

Gracie was then admitted to the hospital where she was given antibiotics for two days before being sent home on March 15. Claire says that during this time, no investigations or scans were done.

A few days later, Gracie was crying in pain once again. Claire rushed her back to the urgent care centre at Russells Hall Hospital on March 18 and was concerned that she could have an appendicitis.

The pair were left waiting for eight hours to see a doctor. Claire, from Kingswinford, said: "I took her to A&E again and they wanted to send me home with Movicol (a laxative). I did kick off a little bit and eight hours later a doctor came to see us.

"I get it is busy and I understand that. He felt her tummy and felt something on the right side which he thought was faeces." Gracie was sent for an X-ray and ultrasound.

Claire continued: "In the meantime, they did mention to me Birmingham Children's Hospitaland said if it is an appendicitis, they can't do anything here because of her age. I was not thinking about cancer at this point.


"We went to ultrasound and the men did not speak to me. They were scanning her and she was crying and sweating - I've never seen sweat like it. He ran out of the room and punched his number into his door and grabbed the phone.

"We get back upstairs and I settle her down. Forty minutes later a nurse came to get us and I thought it was an appendicitis that went bad.

"The doctor was struggling to get words out and I said 'just tell me'. They told me they had found a large mass on her liver.

"I asked if it was cancer and they said they didn't know." Gracie was taken to Birmingham Children's Hospital by ambulance later that night.

Following two biopsies, the tot was diagnosed with a neuroblastoma on her adrenal gland. Claire said: "They thought she was bleeding internally. One doctor told us 'her illness has taken a nosedive.'"

Gracie's tumour is 15x10cm and "protrudes out of her stomach," Claire said. "Grace is 11kg at the moment, she is absolutely tiny, she is skin and bone."


The tot began chemotherapy treatments on April 6. Her mum and dad, Ste, have been told that Gracie has a 24 per cent chance of survival if she goes through the aggressive treatment.

Her parents are hoping to take her overseas for medical care not available in the UK and have launched a GoFundMe page to raise money for this. Claire said: "The symptoms are rising again with flushness and the sweating - it is a matter of life and death. We are looking at a trial in Germany and treatment in the USA."

Claire now wants other parents to be aware of the symptoms of neuroblastoma. She said: "I'm back in mom mode and try to be positive for her. All I can do is have hope.

"I can't thank people enough for their help. Parents need to know about this, it was missed for two weeks.

"If it ever gets to a point where treatment isn't working, I will not let her suffer. So we have to take it cycle by cycle and day by day."


Diane Wake, chief executive of the Dudley Group NHS Foundation Trust NHS, said: "Our thoughts are with Gracie and her family at this time and we wish them well with their fundraising efforts.

“Our staff treated Gracie in line with the symptoms that were presented and we supported the family with the next steps following her full diagnosis.”

BY

Isabelle Bates

05:30, 23 APR 2023
Birmingham Live

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Fundraising push to help young Stourbridge cancer patient

Fundraising push to help young Stourbridge cancer patient

Fundraising push to help young Stourbridge cancer patient

The family of a two-year-old girl diagnosed with a rare, aggressive form of cancer say they are overwhelmed by £40,000 being raised to help pay for experimental treatment in the US.

Gracie, from Stourbridge, was diagnosed with neuroblastoma six weeks ago, which had since spread to her bones.

Mum, Claire, said about £300,000 was needed in total to take part in a vaccine trial abroad. 

Gracie is currently receiving treatment at Birmingham Children's Hospital.


It has included three courses of chemotherapy.

The news Gracie's cancer had spread "really knocked me back", said Claire.

"But I'm back on my mode now; I'm back on the research." 

After the chemotherapy, Gracie had been "running around and eating again", Claire explained, adding: "She's so strong, she's a warrior. But we've got to get Gracie better."

The complex cancer, most common in children under five, is treatable on the NHS but survival rates are poor where relapses occur.

The family hopes Gracie can access the Bivalent Vaccine clinical study in New York, with the programme aiming to trigger a response of the immune system against neuroblastoma.

Friends, family and the wider community have all contributed to the fundraising effort, Claire said. 

"I'm so overwhelmed, they've really rallied behind us. I can't thank everyone enough," she told the BBC.


"I'd love to meet you all and give you a massive hug."

By Vanessa Pearce & Leona Smart


BBC News, West Midlands
Read More  
Fundraising push to help young Stourbridge cancer patient

Fundraising push to help young Stourbridge cancer patient

Fundraising push to help young Stourbridge cancer patient

The family of a two-year-old girl diagnosed with a rare, aggressive form of cancer say they are overwhelmed by £40,000 being raised to help pay for experimental treatment in the US.

Gracie, from Stourbridge, was diagnosed with neuroblastoma six weeks ago, which had since spread to her bones. 

Mum, Claire, said about £300,000 was needed in total to take part in a vaccine trial abroad.

Gracie is currently receiving treatment at Birmingham Children's Hospital.

It has included three courses of chemotherapy

.The news Gracie's cancer had spread "really knocked me back", said Claire.

"But I'm back on my mode now; I'm back on the research."

After the chemotherapy, Gracie had been "running around and eating again", Claire explained, adding: "She's so strong, she's a warrior. But we've got to get Gracie better."

The complex cancer, most common in children under five, is treatable on the NHS but survival rates are poor where relapses occur.

The family hopes Gracie can access the Bivalent Vaccine clinical study in New York, with the programme aiming to trigger a response of the immune system against neuroblastoma.

Friends, family and the wider community have all contributed to the fundraising effort, Claire said.

"I'm so overwhelmed, they've really rallied behind us. I can't thank everyone enough," she told the BBC. 

"I'd love to meet you all and give you a massive hug."

By Vanessa Pearce & Leona Smart


Read More