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Mother ‘desperately’ fundraising for new pioneering treatment to save sons life  

A mother who was told her son had a rare cancer while she held her newborn daughter in her arms has revealed how his little sister is inspiring her son through his battle.

Claire Scott, 40, and husband Mike, 42, who live in Kent, found out their son had cancer – which they were originally told was a virus – in July last year, just over a week before Claire underwent a planned C-section for her daughter Kylie, who is now eight-months-old.

The day after welcoming Kylie, Liam’s diagnosis was confirmed as neuroblastoma, and Claire and Mike were told he would have to endure intense chemotherapy, before undergoing surgery to remove his tumour.

The mother-of-two told FEMAIL that her two children quickly built an unbreakable bond, saying: ‘He absolutely adores her. He kisses and hugs her constantly. And he loves feeding her.

‘Kylie is without doubt the silver lining to the journey that we are on. When Liam is in hospital and Kylie is at home, they video call. They chat and blow kisses to each other.’

‘When we take her out of the room after she wakes, he has such excitement in his eyes and says, “Look what we’ve got!” He is so proud to call her his sister.’  

Claire Scott, 40, from Kent, was left devastated  when she was told her son Liam, 4, had cancer days before she gave birth to her daughter Kylie (pictured, before diagnosis) 

A day after Claire gave birth, Liam was diagnosed with neuroblastoma and  had to endure intense chemotherapy to shrink the size of his tumour (He is pictured in July 2019 at the start of his first round of chemotherapy)

A day after Claire gave birth, Liam was diagnosed with neuroblastoma and  had to endure intense chemotherapy to shrink the size of his tumour (He is pictured in July 2019 at the start of his first round of chemotherapy)

She revealed how when Kylie sees Liam, she ‘always has the biggest smile’ because they’re ‘best friends already.

‘He always knows where she is and carries the baby monitor around with him. Liam always wants to help. 

She explained that despite his own illness, Liam insists that his little sister needs to ‘get strong’ and loves watching her grow.

She revealed: ‘He’s insistent that she start crawling and walking soon. He is doing his very best to make this happen quickly.  

Now, Claire and her husband are desperately trying to raise money for a pioneering treatment, only available in the US. He is pictured with sister Kylie towards the end of his first round of chemo in September 2019

Now, Claire and her husband are desperately trying to raise money for a pioneering treatment, only available in the US. He is pictured with sister Kylie towards the end of his first round of chemo in September 2019

‘She has grabbed his feeding tube before and almost pulled it out, so he holds her hands to make sure she doesn’t do that. 

‘Kylie has been a blessing in so many ways. When we go through our dark days, Kylie is there smiling at us as always and making us realise that we have so much to be grateful for.’ 

Now, Claire is desperate to stop her son’s cancer from returning by raising £232,000 to fly him to the US to take part in a clinical trial, revealing: ‘It would mean the world to us as the treatment in New York aims to stop his neuroblastoma from coming back. Liam is in a battle for his life.’ 

In June last year, when Claire was nine months pregnant, Liam had just started pre-school and while he loved it, the transition seemed to be tiring him out. 

The mother-of-two learned of their son's diagnosis just over a week before she underwent a c-section for her daughter, eight-month-old Kylie. Liam is pictured with mum and sister Kylie amid chemo in July 2019

The mother-of-two learned of their son’s diagnosis just over a week before she underwent a c-section for her daughter, eight-month-old Kylie. Liam is pictured with mum and sister Kylie amid chemo in July 2019

He started sleeping in the afternoons, and experiencing night terrors. 

When he developed mouth ulcers, Claire took him to the GP, who said he had a virus that would take a few weeks to work its way out of his system.   

WHAT IS NEUROBLASTOMA?

Neuroblastoma is a rare cancer that affects children and usually starts in the abdomen. 

Around 100 children, who are typically under five, are diagnosed every year in the UK.

The disease affects approximately 800 new children annually in the US.  

In around half of cases, neuroblastoma spreads to other parts of the body, particularly the liver and skin.

Neuroblastoma’s cause is unclear. There may be a family-history link.

The main symptom is usually a lump in the abdomen, which may cause swelling, discomfort or pain.

If the disease affects the spinal cord, it can lead to numbness, weakness and loss of movement in the lower part of the body.

Treatment depends on how advanced the cancer is and the risk it will return after therapy.

Surgery, and chemo and radiotherapy, are commonly used.

Source: Cancer Research UK 

Over the coming days he became more tired and irritable and lost his appetite, and Claire returned to the doctor who ordered blood tests, and Liam was referred to a paediatric consultant.     

In late June last year, Liam was admitted to Pembury Hospital, where a CT scan confirmed he had a tumour, and needed urgent treatment. 

Despite her C-section being just over a week away, Claire and Mike did everything they could to ‘move quickly’ for their son.

The following day, Liam was admitted St George’s Hospital in London, where he underwent a biopsy, Hickman line insertion, and a bone marrow aspirate.

‘I wanted to take the pain away from him,’ said Claire, ‘I wished I could go through all of it instead of him. ‘

A day later, Claire was forced to travel back down to Kent from London, where she had blood tests at Pembury hospital for her planned C-section. 

She compared the birth to an ‘out of body experience, revealing: ‘I knew that I had a beautiful little baby to look after.

‘However, Liam, my gorgeous and adventurous little boy, was going through the toughest time of his life and he needed me too, more now than ever before.’

She said: ‘I needed time to just be in the moment, but it was impossible as all I could think of was my gorgeous son and his future.

‘My mind was racing and I was living on adrenaline. I didn’t know how to deal with it all.

Claire wanted to spend all the time she could with her son before he became a big brother. Liam is pictured in November 2018 before his diagnosis

Claire wanted to spend all the time she could with her son before he became a big brother. Liam is pictured in November 2018 before his diagnosis 

Now, the family are desperate to stop Liam's very aggressive cancer from returning by raising enough money to fly him to the US. Liam and Claire are pictured before his diagnosis

Now, the family are desperate to stop Liam’s very aggressive cancer from returning by raising enough money to fly him to the US. Liam and Claire are pictured before his diagnosis 

She admitted she and Mike were 'completely overwhelmed' by the daunting prospect of how to move forward The family

She admitted she and Mike were ‘completely overwhelmed’ by the daunting prospect of how to move forward. The family are pictured in October 2018 before Liam’s diagnosis 

‘All I was certain of, was that the love I have for my beautiful children is eternal and selfless’. 

‘I heard the words, “Happy birthday baby girl”, and I knew that my life had changed yet again. I was so excited and I was filled with love, happiness and complete joy. 

She continued: ‘She was so beautiful. I was in love with this perfect little human. I held her tight and promised her the world.

‘It was so overwhelming. An out of body experience. I didn’t know how to deal with these feelings.’ 

After her daughter was born, Claire insisted she was discharged from the hospital in London so that she could attend a meeting for her son, while holding her newborn baby in her arms.

She and Mike had the ‘most important meeting of their lives’ with a consultant when they were given Liam’s diagnosis and told that chemotherapy would begin immediately. 

The mother described the feeling of finding out her little boy was sick as 'pure pain' and admitted she and Mike (pictured) were 'completely overwhelmed'. The family are pictured in July 2019 during Liam's chemotherapy

The mother described the feeling of finding out her little boy was sick as ‘pure pain’ and admitted she and Mike (pictured) were ‘completely overwhelmed’. The family are pictured in July 2019 during Liam’s chemotherapy 

Claire told how she 'broke down' just before Kylie was born, realising that Liam had 'such a long road ahead of him' and that he was fighting for his life. She is pictured on Kylie's birthday on 4th July 2019

Claire told how she ‘broke down’ just before Kylie was born, realising that Liam had ‘such a long road ahead of him’ and that he was fighting for his life. She is pictured on Kylie’s birthday on 4th July 2019

Claire said: 'He was getting very excited about being a big brother. My heart was melting'. They are picture in July 2019 on Claire's 40th birthday

Claire said: ‘He was getting very excited about being a big brother. My heart was melting’. They are picture in July 2019 on Claire’s 40th birthday 

Claire said: 'He was so healthy. He is our precious little boy' She is pictured with Liam . Claire and Liam are pictured during his chemo in July 2019

Claire said: ‘He was so healthy. He is our precious little boy’ She is pictured with Liam . Claire and Liam are pictured during his chemo in July 2019

Liam is pictured following a six and a half hour surgery at St George's Hospital

Liam is pictured during his chemotherapy

The mother described the feeling of finding out her little boy was sick as ‘pure pain’. He is pictured right during his chemotherapy, left following a six and a half hour surgery at St George’s Hospital 

In October 2019, Liam had to undergo a six-and-a-half hour surgery at St George’s Hospital to remove his tumour, followed by high-dose chemotherapy including a stem cell transplant.

Liam recovered in hospital until mid-December, and from January to August received both radiation therapy and immunotherapy at the Royal Marsden Hospital in Sutton. 

Claire revealed: ‘When he first went to hospital he was three years and four months, and he said to me “He loves his family” over and over again.’ 

Liam’s diagnosis timeline 

24th June 2019 – Liam was admitted to Pembury Hospital where he had a CT scan to confirm the tumour

1st July 2019 – Liam was admitted to St George’s Hospital

2nd July 2019 –  Liam had a biopsy, hickman line insertion, and bone marrow aspirate

3rd July 2019 – Liam was discharged late afternoon. Claire went to Pembury hospital for blood tests later for the c-section the following day

4th July 2019 – Kylie was born in the morning

5th July 2019 – Claire and Mike had a meeting with our consultant about the diagnosis. It was then they found out it was Neuroblastoma and chemotherapy had to commence that evening

5th July 2019 to mid-September – Liam began chemotherapy to shrink the tumour for surgery

8th October 2019 – Liam had surgery at St George’s Hospital. It was six-and-a-half hours long.

Liam took just over a week to recover in hospital.

28th October – 4th November 2019 – Liam underwent high dose chemotherapy. This included a stem cell transplant.

5th November-Mid December – Liam recovered in hospital  

28th January – 12th February 2020 – Liam underwent Radiation Therapy

16th March – end of August 2020 – Liam due to undergo Immunotherapy. 

September 2020 – Claire and Mike are hoping to give Liam the vaccine in the US.  

Sadly, Claire said that Liam did get ‘depressed’ about being separated from his family due to the one overnight parent policy, and while he didn’t understand much about his treatment at the beginning, he’s ‘grown up so much’ throughout his battle.

‘At the beginning, we tried to explain and told Liam that he had a sore in his tummy that was going to get better,’ said Claire.

‘We explained that the sore, had to be made smaller and then taken out. They grow up and learn so quickly and in the last eight months, Liam understands so much more.

 But while Liam is currently receiving immunotherapy treatment, neuroblastoma has a high relapse hope with his chances of long-term survival dropping to less than one in ten. 

His parents are now determined to raise £220,000 to fly Liam to the US to take part in a clinical trial of the Bivalent Vaccine in New York after immunotherapy is completed.

The vaccine targets two antigens found in patients with neuroblastoma, and is said to help train the body to do the work of the Hu3F8 antibody to keep them disease-free.

Claire said: 'He was getting very excited about being a big brother. My heart was melting'. Liam is pictured feeding sister Kylie in August 2019

Claire said: ‘He was getting very excited about being a big brother. My heart was melting’. Liam is pictured feeding sister Kylie in August 2019

Claire said: 'Now this new little person was joining our family and I wondered how he was going to feel'. They are pictured nearing the end of Liam's chemo in September 2019

Claire said: ‘Now this new little person was joining our family and I wondered how he was going to feel’. They are pictured nearing the end of Liam’s chemo in September 2019

Liam and Kylie are pictured with father Mike in early January ahead of Liam's Radiation Therapy

 Liam and Kylie are pictured with father Mike in early January ahead of Liam’s Radiation Therapy

Read more at DailyMail.co.uk



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