Suffolk toddler given all clear from kidney cancer as his mum praises Dame Deborah James for speaking about her experience before she died

A mum-of-two from the village of Flowton in Suffolk has shared how she feared her baby son would die, after she was initially told he had stage five kidney cancer.

During September, Childhood Cancer Awareness Month, Ellie Moore, 27, said she will 'speak to everybody and anybody who is prepared to listen' about what her son Toby Soames, aged two, has been through.

Miss Moore, who has suffered from Post Traumatic Stress Disorder (PTSD) since Toby's recovery, said she hopes talking about her family's experience 'might help someone else'.

Toby was diagnosed with kidney cancer, 10 days after his first birthday in March 2021, since then he has undergone a year of chemotherapy and an 11 hour operation to remove the tumour and one of his kidneys.

Miss Moore, who has also has a daughter - Olivia aged four, explained: "Toby just had a pot belly, and Olivia had a pot belly, so I didn't really think much of it but obviously I Googled it.

"It said if it is hard you need to take them to the doctors because it could be trapped poo, it could be anything - and then it gave me the worst case scenario."

When Toby was seen by a nurse at a GP surgery in Stowmarket, she felt his stomach and then called the doctor into the room - they said he had to go West Suffolk Hospital immediately.

Ellie said: "They thought something was really wrong because his liver was at the front rather than his back.

"We didn't even question that the 'big C' was going to come into the scenario."

When the baby arrived at the hospital his blood pressure was so high staff were shocked - he was then sent for scans which revealed he had a cancerous mass on his kidney.

Toby was then taken to the intensive care unit (ICU) to stabilise his blood pressure.

Just a day after his initial appointment at the GP surgery Toby was 'blue-lighted' to Addenbrookes hospital in Cambridgeshire, where he then spent five days in paediatric ICU.

Addenbrookes started treatment within a week, and after eight weeks of chemotherapy he underwent an 11 hour surgery - when the tumour was removed it weighed 1.2kg.

Toby went into the operating theatre weighing 13.2kg (29 pounds), he came out of the operating theatre weighing 12kg (26 pounds), meaning the tumour weighed more than nine per cent of his body weight.

Due to coronavirus restrictions Miss Moore and her partner Craig Soames, 35, were not allowed to be in hospital with Toby at the same time - even when he was undergoing surgery.

Miss Moore said: "Initially Toby was diagnosed with stage five cancer, so we were then waiting for the biopsy results.

"I can remember having the phone call back on July, 4, last year, I was sat in Sainsbury's car park in Bury St Edmunds and I can tell you exactly what parking space I was in.

"She rang me and she went 'I'm really, really sorry we gave you a stage five diagnosis, we've done a biopsy of it, it actually stage one'.

"So I've gone from a death sentence to 'oh my goodness this is amazing'."

Miss Moore added: "Because he had lesions on his other kidney they were a bit worried about it, so he had a whole year of chemotherapy.

"It went from every week to every other week, to once a month and on March,17, this year he rang the bell."

The toddler is now cancer free, but will have regular scans to check the cancer has not returned.

Toby was born 10 days before the first coronavirus lockdown and his mum believes that his tumour could have been spotted earlier if he had been able to have a face-to-face appointments with a health visitor.

According to the Children's Cancer and Leukaemia Group website, around 1,653 children, up to the age of 15 are diagnosed with cancer each year.

Cancer in children tends to occur in different parts of the body to adult cancers.

September is Childhood Cancer Awareness Month (CCAM) and more information about it can be found online.

Once Toby had finished his treatment, Miss Moore realised the impact the year had on her mental health and wondered how she would cope.

She said: "You kind of worry about yourself later, obviously because we've got Olivia, so we had to look after her as well."

"Once Toby finished his treatment I just spiralled, I got diagnosed with PTSD, and depression and anxiety.

"I suffer from high functioning anxiety because of it, no one will ever understand why if Toby has a cold I still feel the need to take him to the doctors."

Now keen to talk to anyone about what Toby and her family have been through Miss Moore described Dame Deborah James, who died earlier this year, as her 'role model'.

She said: "The person that I looked up to was Deborah James, because she was one of those people that would speak to anybody about what she was dying of, and her quote is 'her rebellious hope' and how to live your life whilst you are dying."

During CCAM Miss Moore has urged parents to trust their instinct when it comes to worries about their children.

Following her experience with Toby, she said: "At the end of the day you are your child's advocate, whether they can speak or not.

"If you think there is something wrong, even if it is just a cold or a sniffle, if you are not happy take them to the doctors - because you don't know if that could be anything more.

"And if it isn't anything more then that's put your mind at ease."

She finished by saying: " Thankfully we have the support and staff at Addenbrookes but there are mums, new mums out there that don't have that support.

"A mum shouldn't feel like it's their fault and they have let their children down."