For 6 months doctors ignored our son’s headache, telling us ‘he’s fine’ – he later died in our arms of cancer at just 18

WHEN Errol McDowell first started experiencing headaches at the age of 12, doctors weren’t worried.

After all, Errol was otherwise fit, healthy and active – going for cold water swims, playing sports and riding horses with parents Rider and Victoria, and his two younger brothers.

Until then they enjoyed a “blissful life”;, according to dad Rider, 64.

“Errol’s mum Victoria and I would always say that we were so amazingly blessed,”; the playwright tells Sun Health.

“We were, and are, a very tight knit family.

“But then our oldest boy started showing these symptoms out of nowhere.”;

As well as headaches, Errol was complaining of dizziness and nausea.

The couple took him to a range of doctors, as well as holistic practitioners, but they were repeatedly told not to bother with an MRI as it could be “unnecessarily traumatic”;.

However, Errol’s headaches continued, and there were now worrying new symptoms, like trouble balancing and numbness in his fingers.

After six months of reassurances from doctors, Rider decided to overrule the medical professionals and insist on a scan.

Devastatingly, Errol was diagnosed with medulloblastoma, a fast-growing malignant brain tumour, in January 2013.

“The radiologist came out with a very grave expression and gave us this terrifying news,”; Rider says.

“The scans showed a golf ball-sized mass near the brain stem.

“I just said, ‘Has he got a shot?’ I went into fight or flight mode instantly.

“When I called my wife to tell her, she laughed and thought I was joking.

“Long before the diagnosis, my wife knew something was up.

“I would say, ‘everything's fine’, but she felt a dark presence; she just knew.”;

THROWN INTO ‘NIGHTMARE'

Errol, brother to twins Mac and Piers, now 17 and living in the UK, underwent immediate brain surgery a few days before his 13th birthday.

While coming to terms with the family’s new normal, Rider felt despair at the lack of funding for paediatric cancers, especially brain tumours.

He was shocked by how little was known about paediatric brain cancer and other children’s cancers, and how little was being invested into research.

Errol was so tough and a brilliant boy – much smarter than his parents. He was an extraordinary kid

RiderDad

Far from being a rare diagnosis, reports by Brain Tumour Research show that brain tumours kill more children than leukaemia (a type of blood cancer), more men under 70 than prostate cancer, and more women under 35 than breast cancer.

In England, every two hours, someone is diagnosed with a brain tumour – and research also shows that brain tumour deaths are rising, representing 2.6 per cent of all deaths from cancer.

However, despite the prevalence of the disease, the funding worldwide is minimal, and even more so when it comes to children.

Brain tumour research represents just 1.37 per cent of national spend on cancer in the UK.

“Paediatric cancers are traumatic because there’s virtually no funding,”; Rider says.

“The parents are young, they have no political clout and they often don't have much money.

“Suddenly we were enveloped in the whole nightmare.”;

DEVASTATING DIAGNOSIS

Over the months that followed, Errol endured the most gruelling and brutal treatments, including radiation therapy and six months of chemotherapy.

For a while, the prognosis seemed good, with doctors saying that the treatment had gone well and that Errol would be cancer-free.

But devastatingly, a year after his original diagnosis, Errol’s cancer returned.

Rider and Victoria did everything they could, flying around the US and abroad to try to find treatments or solutions for Errol’s tumour, and interviewing cancer researchers to try to find a cure.

Rider, from Pebble Beach, California, eventually found a targeted immunotherapy clinical trial at the University of Florida.

Errol underwent surgery again and then took part in the trial, which included a stem cell transplant.

Rider and Victoria took it in turns to stay with Errol in Florida and look after the twins back in California.

The trial appeared to work and Errol lived cancer-free for three more years.

TAKEN TOO SOON

The youngster was committed to raising money to fund more research into childhood cancer alongside his brothers, calling their initiative Canceragogo.com.

Their idea was to raise just $1 from every American – and the family did a brilliant job, raising awareness on a variety of platforms from American TV to YouTube, raising over $1m.

But in 2018, the medulloblastoma returned, this time with a vengeance.

Errol passed away at home in his parents’ arms a few months later, at the age of 18.

Reflecting on the family’s journey, and the many years spent looking for cures, Rider feels the only way to overcome the grief was to throw himself into fundraising.

“You’re full of rage, and then you get past that and you form another perception of life and what it really is,”; Rider says.

“It's so abstract that you can't share that with anybody else unless they've been there.

“It's one of these things. You really simply can't understand it.

“Everybody has tragedies. I'm not saying it's just our son, but there’s millions of sons and daughters and parents and grandparents.

“It's always sad – it’s just sadder when the potential is there, and life is snuffed out so early.

“It wasn't until cancer touched our family that we developed this enormous passion to conquer it through fundraising.

“If it hadn't happened to us, we'd be going through life just as blithely as the next family.”;

The most common symptoms of a brain tumour

More than 12,000 Brits are diagnosed with a primary brain tumour every year — of which around half are cancerous — with 5,300 losing their lives.

The disease is the most deadly cancer in children and adults aged under 40, according to the Brain Tumour Charity.

Brain tumours reduce life expectancies by an average of 27 years, with just 12 per cent of adults surviving five years after diagnosis.

There are two main types, with non-cancerous benign tumours growing more slowly and being less likely to return after treatment.

Cancerous malignant brain tumours can either start in the brain or spread there from elsewhere in the body and are more likely to return.

Brain tumours can cause headaches, seizures, nausea, vomiting and memory problems, according to the NHS.

They can also lead to changes in personality weakness or paralysis on one side of the problem and problems with speech or vision.

The nine most common symptoms are:

1. Headaches
2. Seizures
3. Feeling sick
4. Being sick
5. Memory problems
6. Change in personality
7. Weakness or paralysis on one side of the body
8. Vision problems
9. Speech problems

If you are suffering any of these symptoms, particularly aheadache that feels differentfrom the ones you normally get, you should visit your GP.

Source: NHS

A BRILLIANT BOY

Rider remembers Errol handling the cards he had been dealt with bravery and wisdom despite his young years.

“Errol was so tough and a brilliant boy – much smarter than his parents,”; Rider says.

“He was an amazing artist, an extraordinary writer and a leader.

“He helped us to navigate this nightmare, even giving advice to us, his parents. He was an extraordinary kid.

“Every parent has their own love affair with their kid, but being objective, I can see this guy was unique.”;

With the family home and all the memories it contained ever-present following their devastating loss, Mac and Piers decided to go to the UK for secondary school – and brought their platform, Canceragogo.com, along too.

They hope to raise over £1m to support the Institute of Cancer Research, and Professor Louis Chesler’s Lab, which aims to understand the biology of children’s cancers and use that information to discover and develop new personalised approaches to treatment.

The brothers hand out reusable plastic cards with information and a QR code at stadiums and entertainment venues.

They find that many of the people they speak to have a personal story with cancer and loss.

When people scan the QR code, they are encouraged to donate £1 and then pass the card to a friend.

“The fundraising was the only thing we could constructively do to fight back or try to make a difference in Errol's memory,”; Rider says.

“Errol created this charity with our other sons, and that was his way of fighting.”;

SPREADING THE WORD

As well as raising awareness and money for childhood cancer research, Rider wants to encourage parents to always trust their gut instincts and visit the doctor if they are worried about their children.

“People don’t talk about brain tumours as much because they are dire and frightening to think about,”; he says.

“Sometimes we feel like we’re a broken record, but it’s important to get the word out about the symptoms of brain tumours and the lack of funding.

“Another thing is to always trust your gut feeling: you know your child well enough.

“Trust your intuition as a parent, because it almost transcends medical knowledge.”;

March is Brain Tumour Awareness Month. To find out more about the work being done to diagnose and treat brain tumours, visit The Institute of Cancer Research website.