Heidi’s story

“Neil was a daredevil who was very outgoing and could be very stubborn, but he was determined to live life to the full.”

Heidi Jones and husband Neil were teenage sweethearts who met at 16 whilst painting a wall at a riding stables. It was love at first sight for the couple, both from Lichfield, and they finished school, attended university and travelled the world together.

Then in 2004, Neil had a series of seizures and the couple were told the devastating news that he had an inoperable brain tumour.

“Neil was absolutely determined that the brain tumour wasn’t going to stop him and lived with the tumour and the chemotherapy quite well for a long time.” said Heidi.

“He loved mountain biking and was determined to carry on with that – his dream was to teach the boys to ride a bike.

“The tumour impacted on his job as he had been a site manager and had to move to a role as a construction buyer because of the seizures.”

Neil and Heidi got married in 2008 and went on to have sons Harrison and Seb, who are now 5 and 3.

After more than a decade of living with the tumour, in 2017 Neil was told the cancer had spread to his bones and he started to receive support from the St Giles Community Nursing Team before he was admitted to the hospice in Whittington.

“Neil became very ill and was admitted to St Giles for symptom control and pain management,” said Heidi.

The children were regular visitors to the ward and both boys were made welcome with special meals and their very own cinema set up for them so they could watch films with their dad.

Neil did return home for a short time but was readmitted within days.

“I’ll always remember that the physio helped Neil stand up so he could give me one last hug and that meant the world.” Heidi added.

Neil died just days later, having made sure everything was in place financially for the family’s future and for his funeral.

“He’d done everything, made his will, sorted out his pension – he had even organised his funeral catering, insisting on Dunkin’ Donuts!” said Heidi.

“There were Star Wars storm troopers at the funeral and he had a camper van as a hearse, with a cardboard coffin covered in pictures from the whole of his life.

“It was a good funeral because it was so him and that is what he wanted.”

Neil had also left memory boxes for the boys and Heidi knew support was there for the family through St Giles’s Phoenix service, for families and young people who have been bereaved.

She got in touch with the team when Harrison was struggling at school as he was frustrated and couldn’t communicate and she wanted to find a way to help.

“We started going to the family support group and everyone was really welcoming because we were all in the same boat so it made everything easier to talk about.” she said.

“Because the parents got the chance to talk as a group, people shared what they were going through and because we were all at a similar stage you could ask ‘What did you do?’ and know that you weren’t alone.

“The boys did activities like making a photo frame with a picture of Harrison and his dad which is now on his wall and he has added pictures all around it.

“Seb loved it so much we had to do one for him, which helped as he was so young when Neil died that he doesn’t have as many memories so it was good to talk about him.”

The group has continued to be a source of valuable support for Heidi, even after the sessions finished.

“I’d recommend it to anyone as you build great friendships and I still meet up with the families in the school holidays as well as going to the Sunflower group,” she said.

“The boys benefit because there are children the same age and in the same situation and it’s good for them to have someone who shares the same experience.

“Finding the right support for the boys was essential as they are the one thing that has made me get out of bed on the toughest days.

“When they smile, I smile and I wouldn’t have survived if they hadn’t pulled me through.”

Heidi and her sons will be walking in memory of Neil at our Hero Walk in September. To find out more about our Phoenix support for children and young people click here.

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