Zak’s Story: Giving Zak’s family a space to breathe

Children’s hospices provide vital support for children with a life-limiting condition. Everything they do is #ForTheChildren – helping families make the most of their lives together, no matter how short. This Children’s Hospice Week we are showing how important each individual child is to the amazing local hospices who care for them. They provide a lifeline #ForTheChildren like Zak and his family.

Zak loved Queen, and Brian May was his hero. Zak was a force to be reckoned with; youngest brother to Harry and Tom, but the loudest and brightest boy in the room!

When Zak was just two, not long before his diagnosis with a rare liver cancer, his mum Caroline was diagnosed with cervical cancer. Whilst the family celebrated the end of Caroline’s treatment, the family’s lives were turned upside down when Zak fell ill. He spent 80 days on a ventilator and underwent intensive chemotherapy. It was relentless.

Demelza gave Zak’s family a place to breathe

When the family were first introduced to Demelza they worried that it was a place where children go to die. But they soon discovered the amazing array of support and care for the whole family, giving them “space to breathe”.

Helping us to stay at home until the end

When Zak fell critically ill and needed a liver transplant and more chemotherapy, the hospice was with them every step of the way; hospice volunteers even drove the family to their appointments every day. “No longer did we have to worry about finding parking nearby, the money for petrol or making poor Zak walk to the entrance in the pouring rain.”

Zak’s surgery was a success and we had a few precious months together before our world fell apart once more. I asked Zak’s surgeon how long Zak had – ‘six to 12 weeks,’ he replied. We only got three. At that point we asked for all unnecessary medications to stop and to get Zak home from hospital so we could make the most of the time we had left. Demelza stepped in again and Sacha [Demelza Registered Nurse] visited us every morning. She liaised with the hospital and adjusted his meds accordingly to control his pain and keep him comfortable, and the team were available at the end of the phone 24/7. It enabled us to stay at home together until the end.

Our darling Zak died on a Wednesday. Not long after he passed, the Demelza team arrived and took control and we felt an enormous sense of relief when they removed all of the medical paraphernalia from the living room.  We feel grateful that the team had also arranged for Zak to have a hand cast done with his brother a few days before.

Arrangements could’ve been made to keep Zak in the house but we didn’t feel it was right for us. We didn’t want his death to affect our memories of Zak at home with his brothers. So, we decided the best thing was for him to go to Demelza. It was a brave decision.  But the Demelza setting was perfect – Sacha had made sure all the thoughtful touches were in place and it was so calm and serene.

We walked out of Zak’s final resting place; a beautiful bedroom so thoughtfully laid out, with Queen – his favourite band in the whole word – playing to him. We closed the door – which had his name and a picture of a guitar on it – and sat quietly in the adjoining family conservatory. We knew Zak had gone, but he was still close by and being cared for by Demelza until the very end.

Caroline and David, Zak’s mummy and daddy

Children’s hospices like Demelza provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.