Hayley Smiles For Challenge 26

There have been countless inspiring Challenge 2.6 social media posts over the past month, but our favourite was the finale video from seven year old Hayley Johnston. In this glorious 2 minute post she successfully throws 26 wet sponges at her grinning Dad – and in doing so completes her goal which has so far raised over £2000 for charity.

Although small, and still a little weak, Hayley smashed her way through her mini-missions with what has become a trademark grin and determined wee face.  Of course, for her, it was personal; Hayley is raising funds for Clic Sargent – and still is over on her Just Giving Page – the Children’s Cancer charity that has supported her and her family since she was diagnosed with a rare brain tumour in September last year.

Dad, Neil, recalls those initial few days and the incredible response from the NHS teams who have held his family closely and cared for them all over the past nine months.

GALLERY

“It started in August, with Hayley complaining of headaches. We didn’t think much of it at first as they were coming and going – she’d have a sore head one minute and be off playing again the next. We thought at first it was just a kid thing, but when they didn’t seem to subside my wife, Katie, took her to the doctors.  She was started on antibiotics but when they didn’t work, our doctors brought her back in and started to look at other possibilities. 

“It was actually Boots Opticians who spotted something they weren’t keen on in the eye test we took her for.  It escalated quickly from there – she was sent to an eye specialist at PRI and he sent us straight down to Dundee for an MRI scan that confirmed our worst fears. It was a brain tumour.  It was all a bit surreal – she hadn’t been throwing up, there was no loss of balance or any of the other classic symptons – just the headaches.”

Although small, and still a little weak, Hayley smashed her way through her mini-missions with what has become a trademark grin and determined wee face.By early September Hayley had spent a week in Edinburgh Sick Kids Hospital and a plan for removing the tumour had started to take shape; she was sent home for the weekend to celebrate her seventh birthday and was to come back on the Wednesday for her operation. But it didn’t quite take shape the way the doctors had first planned.  

“We got home but she took a turn for the worse. After that it was all a whirlwind. The hospital told us to bring her back in immediately and they performed an emergency operation that night – on her actual birthday.  We stayed on for another week until she was fit enough to go home but really that was just the start of things.

In a case like Hayley’s the first thing to do is determine if the removed tumour was malignant or benign- this can’t be done until after the operation. Once they had established that it was in fact cancerous, a plan for treatment was mapped out, which would include proton therpay.

Proton Therapy is still relatively new in the world of cancer therapies but is currently one of the most successful treatments available.  It is more focussed than traditional radio therapy and crucially, has fewer side-effects and so is more protective, particularly important when treating children. At the time the UK only had one centre – there are now two more - and no spaces as it was still so new. 

Hayley’s case was put to the Board and as she met all specifications they quickly approved a trip to Essen in Germany where Hayley would be assessed, fitted for a mask and asked to return for receive a 7 week course of treatment.

 “The proton treatment was really for extra precaution because they had removed all of the tumour during the surgery.  We were so fortunate; that op is normally eight or nine hours long but Hayley was in and out in three – they told us it had been able to ‘suck out’ the whole thing.  

“But although she was clear, it had been a very rare, very particular type of cancer which was determined with help from Great Ormond Street, London, who also analysed the biopsy. In short, they wanted to put belt and braces on it to make sure they had done as much as they possibly could.”

Hayley’s cancer was in fact a Neuroepithelial high grade tumour with BCOR alteration - a cousin of a medullablastoma.

Neil uses the phrases - “we were so fortunate” - “we are so grateful” – several times during our phone call and is at odds to stress how much they were supported and cared for by Hayley’s entire medical team, their friends and close family.  There is no fuss, no drama, no hand-wringing or gut-wrenching descriptions of a family lost at sea.  But it is there in his quiet, considered answers, the fear that held them all together and gave them the strength to move country as a family of four in a bid to save their youngest.

Over 16 weeks she had 4 sessions with 4 weeks rest in between each so she could be topped up with stem cells to help her recovery. “When we went out for the initial visit we were away and back in three days so Findlay stayed with his grandparents and Katie and I went with Hayley ourselves. But when we knew it was to be a seven week stay for the whole course of treatment there was only one choice, we all had to go. Findlay needed us, and Hayley needed him.

“It was a strange time. She had 33 sessions in all – Monday to Friday with weekends off. Of course, she couldn’t lie still for it so had to be sedated every day. What should have been an in and out job was 2 and half hours a day because they had to knock her out!”

They arrived home in early December, had a month off and then Hayley started intense chemo - called St Judes - at the Sick Kids Hospital in Edinburgh. Over 16 weeks she had 4 sessions with 4 weeks rest in between each so she could be topped up with stem cells to help her recovery. 

“The stem cells are harvested from her body prior to chemo starting and then fired back in to get her to grow new cells. If you’ve ever wondered what they smelt of the answer is sweet corn!

“And it’s not over at that – they don’t just wave you off with a ‘Good Luck’ and let you hope for the best. The outreach nurses are fantastic, and we know that there is a plan in place for the next 5,6,7 years.   She’s in the system now and it feels reassuring to know that there will always be someone to talk to.

“I know its second nature for the nurses but they have all been brilliant with Hayley. She has been really, really well looked after.”

The entire thing, nine months that went from diagnosis to operation, cutting-edge treatment, body battering chemo and stem cell replacement, ended in March – just in time for lockdown!

“We knew we had to do something to repay all of the people who helped us along the way.   We’ve had so much support, so many incredible people have come together to help us make Hayley’s treatment possible and we wanted to give something back.  The 2.6 Challenge was perfect!”

We knew we had to do something to repay all of the people who helped us along the way.We talk a little about that support; he tells me the list is too long to even start.  From the GP to the Boots Optician, the incredible nurses in Sick Kids Edinburgh and Ninewells, that board who made the decision, their medical team in Germany and chemo team here at home – everyone made Hayley their priority each and every minute she was in their care.

But, Neil explains, it is far, far, more than that.

“It’s your family, your friends, the people you work with - the list is so long but I hope they know who they are and what they mean to us. Both Katie’s employer, Letham For All, and mine, Live Active Leisure, have been amazing. They just made it so easy for us to do what we had to do. No questions asked. Nothing was too much trouble.”

“And both Clic Sargent and TCCL (Tayside Children with Cancer and Leukaemia) – we don’t know what we’d have done without them. So much support, in ways we never knew we needed, came our way. It’s not been easy – but they have made it easier.”

We don’t know what we’d have done without both Clic Sargent and Tayside Children with Cancer and Leukaemia.  Apart from emotional support, friends and family rallied to raise funds for the family’s additional needs over the past few months, and to support Hayley in what might yet be to come.

“We’re so fortunate that she’s not had any major side-effects in the immediate term but we’ve no idea what’s to come. We’ll just need to keep an extra close eye on her over the years and in the meantime, live as normally as possible - I’ve been telling her the mollycoddling stage is over! It’s back to school in August she goes.” 

And I can hear him smiling, hear the relief in his voice as he plays at being the no nonsense Dad. A dad, it turns out, who can take a proper pasting from his daughter all in the name of charity!  

Hayley’s 2.6 challenge saw her face 26 different activities, all with a theme of 26 in them. They included 26 lego pieces, a scooter, a ramp, 1 small cuddly toy, 2 toy markers and most importantly, Hayley.  

During her challenges, Mum Katie updated her Facebook Group, Healing Hayley, with photographs that alternated between her doing 26 yoga poses, receiving stem cells, baking 26 scones and lying in her hospital bed - still smiling - for that all important last dose of chemo. 

Katies final hospital based post summed up Hayley's spirit and determination perfectly.

"She’s officially left the building 🥳! Pleased to have got home today and testament to this little machine on her ability to power through this week.

"Heartened to hear the consultant say he had never seen another child on this type of chemo do so well without any set backs, but we have witnessed first hand her sheer strength and determination!!

"Our job now is to build her back up and try to relax alittle going forward but she will always be under the watchful eye of others to keep her safe - in her words she’s getting a new normal life back."

Many of the challenges were also documented via video, her beautiful smile and go-get-em attitude inspiring us all in the early days of lockdown.

“Some of the challenges were tough for her, there’s no doubt. The ongoing effects of chemotherapy and radiation made the physical tasks really hard as she has less strength, balance and coordination as a result of all of her treatments.  She smiled through and she got there though.”

There were a few that were tweaked along the way and a few that she embraced with more zeal than others – and as you’d probably expect from a seven year old girl who has taken one of the most punishing medical treatments in her small and powerful stride, she powered through and smashed them all!

I ask Neil what her favourite had been – he shouts her to the phone.

“What are you up to?” I hear him ask.

“Tidying my room.” She replies with a sigh reminiscent of every other seven year old in Perth.

“What was your favourite challenge, Nicki’s wondering?”You say thank-you. To everyone has who done so much. And it just never feels like it’s enough.

“Throwing sponges at you and playing catch with the tennis ball with Findlay.”

And just like that, she’s off again.     

There is a pause on the line.

“You say thank-you.” he says. “To everyone has who done so much. And it just never feels like it’s enough.”

*

Hayley is raising funds for Clic Sargent and at the time of typing she has raised £2328.

Hayley continues in her recovery but this will be a challenge as she is weak following the treatment so we are asking you, if you can, to dig deep and support her in her bid to help others. You can click onto her Just Giving Page here >>>

When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. Today, 11 more children and young people will hear the devastating news that they have cancer.

From diagnosis, CLIC Sargent’s specialist care teams will step in, ready to help, support and guide. CLIC Sargent will fight tirelessly for them, individually, locally and nationally, so that they can focus on the important things. To find out more visit www.clicsargent.org.uk.