Reece Holt’s family had their lives thrown into turmoil when the 10-year-old was diagnosed with a brain tumour out of the blue after suddenly collapsing.
However, Reece’s family have taken great strength from the way science and Star Wars obsessed Reece has taken his diagnosis and treatment in his stride. AASMA DAY finds out how Reece feels the force by turning into a Storm Trooper every time he has radiotherapy.
REECE Holt may have experienced the dark side of life when he was suddenly diagnosed with a brain tumour, but the 10-year-old has astounded family and medics by proving he is a real trooper.
Reece, who doesn’t live in a galaxy far far away but in Overton, Morecambe, is science mad as well as being a huge fan of Star Wars.
The youngster’s family were shocked and devastated when Reece was diagnosed after suddenly collapsing in May.
When Reece was first taken to hospital, he was kitted out in his favourite Star Wars T-shirt which had to be cut off him for treatment.
Reece has undergone brain surgery and is now being treated with radiotherapy at The Clatterbridge Cancer Centre on the Wirral.
When medics found out Reece was a big Star Wars fan, caring staff designed Reece’s radiotherapy mask to resemble characters from the films.
The specially moulded mask is used to ensure patients stay as still as possible during their radiotherapy treatment.
Each mask is made to measure and Reece was thrilled when he realised his had a Star Wars theme.
Now, every time Reece has radiotherapy, he becomes a real fighter by transforming into a Storm Trooper. Rachel O’Neil, Reece’s mum, says Reece loves his Storm Trooper mask and it has helped inject some fun into his treatment ordeal.Rachel, 39, who is engaged to Reece’s step-dad Lewis Macfarlane and also has son Callum, nine, says Reece’s diagnosis was a real shock for everyone including Reece and Callum’s dad Chris Holt as Reece had not displayed any symptoms and it all happened so quickly. Rachel explains: “Reece had his tonsils removed two weeks before it all happened and he was off school recovering in May.
“Reece’s recovery was going well and he seemed absolutely fine on the morning of May 5.
“That morning, Reece was perfectly normal and threw his dirty socks at me saying: ‘Smell these!’ in typical boy fashion and he did some schoolwork at home.
“However, that afternoon, Reece started sweating heavily and sweat was running off him.
“Reece had been prescribed some antibiotics as a precaution for a potential throat infection. He had taken one of these antibiotics about an hour-and-a-half before the sweating started, so I automatically assumed it was a reaction to the antibiotics.
“I took Reece’s temperature and it was 34.3 so I knew something wasn’t right. Then Reece was violently sick and began to complain about a burning feeling in his hand and arm on his left hand side. I called the GP and he told me to get Reece straight to the surgery.
“While Reece was in the back of the car, his eyes started rolling in the back of his head so I was shouting and talking to him to try and keep him conscious.
“When we got to the doctors, Reece was struggling to walk and I was holding him up.
“While the doctor was examining Reece, the left hand side of Reece’s face suddenly dropped like he had had a stroke.It was very frightening and I knew then we were dealing with something serious.”
Initially, Reece’s GP feared Reece might have septicaemia from the tonsil surgery and called for an ambulance.
Reece was taken to Royal Lancaster Infirmary where a full paediatric team was waiting for him.
Within 20 minutes of Reece arriving at the hospital, his favourite Star Wars T-shirt had to be cut off him to intubate him as he could no longer breathe for himself.
After a CT scan revealed a bleed on the brain, Reece was transferred to Alder Hey Children’s Hospital in Liverpool.
Rachel recalls: “When we got there, Reece was on full life support and hooked up to all sorts of things.
“It is an image that will never leave me. They were trying to keep Reece flat and monitor him.
“At this point, they did not know what had caused the brain bleed but suspected there was a tumour.
“However, because there was so much bleeding and swelling, they could not get a clear picture.”
Reece had to undergo emergency brain surgery and consultant neurosurgeon Conor Mallucci told the family there was a tumour which he had managed to remove some of but could not take it all out because of the swelling.
Reece recovered slowly and was allowed home the following week and told he would have to return for surgery to remove the rest of the tumour.
However, just two days later, Reece began to sweat again and complained of burning in his hand and collapsed.
He was flown by air ambulance to Alder Hey where doctors discovered Reece had suffered a rare post operative complication where swelling develops in the brain about 10 days after surgery.
This was causing Reece to have fits so he was given anti-fitting medication intravenously.A few days later, Reece had surgery to remove the rest of the tumour.
Tests revealed the tumour was cancerous and was a rare malignant brain tumour called anaplastic astrocytoma.
Rachel explains: “It is a tumour in the tissue that surrounds the brain and it is usually seen in adults, not children - they only get about 10 cases a year.
“The tumour has been given a Grade 3 as it is quite fast growing.
“There is not research to understand why it has happened. It may have been a benign brain tumour which Reece had from birth which suddenly turned malignant.
“Or it could just have developed in the last couple of months. They just don’t know.”
Reece was asked if he wanted to donate the brain tumour to Newcastle Cancer Research Centre along with his bloods and DNA and he agreed.
Smiling, Rachel says Reece’s fascination and interest in all things science related made him curious about knowing everything about his treatment.
Rachel says: “Reece asked his surgeon to go through the whole procedure with him.
“Reece also has copies of all his CT and MRI scans and asked the doctors to explain them in technical detail.
“He even asked if they had filmed the brain surgery as he wanted to watch it!
“They hadn’t filmed it but they showed Reece filming of a similar procedure. They have even done drawings and diagrams to explain things to Reece.
“All the staff at both Alder Hey and Clatterbridge Cancer Centre have been amazing with Reece. They have now almost become like a second family.
“Whenever any of the staff are discussing Reece’s treatment, they speak to him directly rather than through us and he much prefers that.
“I think it is fantastic.”
When avid Star Wars fan Reece’s favourite T-shirt had to be cut off him, his mum tried to find him another one, but it was no longer for sale.
However, after hunting on eBay for four weeks, she managed to find the same Chewbacca shirt.
Rachel says: “Reece has always loved science and is fascinated by anything to do with space.
“We watched the original Star Wars films a couple of years ago and then booked tickets for the latest one for the first day it came out and Reece and his brother Callum have been hooked ever since.
“Reece’s radiotherapy nurse told us that they put sunglasses or eyelashes on radiotherapy masks for children and said how great it would be if they could make Reece a Storm Trooper one.
“We couldn’t believe it when they made him one and Reece is over the moon with it. I can’t thank them enough for everything they have done for us.”
Sarah Stead, paediatric specialist radiotherapist at the Clatterbridge Cancer Centre, says: “Children undergoing this type of treatment can spend a lot of time in different hospitals undergoing different types of procedures and treatments so gaining trust and developing a rapport with them initially can be difficult.
“The children will be followed up throughout their lives so if we can make the patient experience here at Clatterbridge as pleasant as possible then this will help us now and in the future.
“Reece is great and when we found out he was such a big Star Wars fan, I joked with the team who mould the masks about making him a Storm Trooper mask and Lyndsay Turner made Reece’s wish come true.
“The team have done a great job with Reece’s mask and helped me build a relationship with Reece from his first day of treatment.
“The smallest of things make a big difference.”
Reece is currently half way through his radiotherapy treatment and he is also having chemotherapy daily.
He will undergo an MRI scan in August to find out if the treatment is working. He then faces six weeks of intense chemotherapy followed by 12 months of low dose chemotherapy.
Rachel says: “This whole experience has been very difficult but we can’t fall apart; we have to keep going. Reece has amazed us with his strength and resilience and ‘Let’s just get on with it’ attitude.”
Reece’s brother Callum has said that when Reece loses his hair, he will have his hair shaved in solidarity.
The brothers will be having a sponsored headshave to raise funds for Clatterbridge Cancer Centre. Reece’s friends and family have already made £2,500 in fundraising for Clatterbridge and Alder Hey.
A charity skydive is also planned by Reece’s friends and family for Alder Hey Children’s Charity on July 30.
l If you would like to donate to Clatterbridge for Reece and Callum’s headshave, visit: www.justgiving.com/fundraising/Teamreece
To sponsor the skydive for Alder Hey, visit: www.justgiving.com/fundraising/Jump4reece