“We knew the moment had come. It was the last time David and I would get to see our little boy. We walked into the bereavement suite at Demelza where Zak lay peacefully, carefully dressed in the clothes we’d given to the nurses, and kissed him goodbye on the forehead. Something that should’ve been the hardest thing in the world, was made bearable. 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.
Our lovely boy Zak was a force to be reckoned with. He was so different to his two much quieter, older brothers, Harry and Tom. Zak may have been the youngest of the family but he was certainly the loudest and brightest person in the room. Zak was only six but he had real rhythm and an eclectic mix of music and bands he loved.
I was diagnosed with cervical cancer the year before Zak fell ill; he was only two. We were on holiday celebrating the end of my treatment when we noticed something was wrong; he was crying more and eating noticeably less. An ultrasound detected a large mass and Zak was diagnosed with rhabdomyosarcoma – a rare tumour in his liver. Our baby boy was so ill that he then spent 80 days on a ventilator and underwent intensive bouts of chemotherapy. It was the start of a gruelling four years of treatment and the most challenging time of our lives.
We were first told about Demelza by Sacha, a Senior Registered Nurse from the charity. Our initial thought - and worry - was that a hospice is a place where people go to die. But Sacha told us about all the amazing services and facilities on offer, that could give us the ‘space to breathe’. Zak went with his daddy to look around the Kent hospice and although he didn’t access much because of his prolonged hospital stays, Demelza ended up being there in our most critical time of need.
Zak was phenomenal and threw himself into everything. In December 2019, Demelza invited us to do Ice Skating at Eastwell Manor in Ashford and Zak was really good at it. More importantly, he felt comfortable around the other Demelza children there. Zak had been ill for such a long a time and knew no different, but I know it bothered him during trips to the supermarket when people stared at his hair loss. When he was with other Demelza families, he didn’t have to worry and could enjoy himself. We also took part in the Demelza Bubble Rush fundraising event at Mote Park; a memory we can treasure of us all being together as a family.
In February 2020, just a few months after the first COVID-19 lockdown, Zak started to look a bit yellow. We were told his tumour had returned and he needed a liver transplant. He underwent chemotherapy before the surgery which required him to visit the hospital daily. He was also Type 1 diabetic after having surgery in June 2018 to remove his pancreas, spleen and the bottom of his stomach. His blood sugars were so volatile, that they required constant monitoring, and controlling the condition was made harder because he was tube fed. Driving 45 minutes to hospital chemotherapy appointments was therefore, a real challenge. But Demelza stepped in to help. Their incredible Practical Support Volunteers drove Zak and his daddy to every appointment and brought them home again. 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. All he wanted was to hold his daddy’s hand in the back of the car and thanks to the Demelza volunteer drivers he was able to.
Zak’s surgery was a success and we had a few precious months together before our world fell apart once more. The pandemic meant that I was on my own when Zak’s surgeon told me in early 2021 that his tumour had returned. It was inoperable; nothing more could be done for our little boy. I asked him 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 visited us every morning. She liaised with the hospital and adjusted his meds accordingly to control his pain and keep him comfortable. After she left we were free to get on with our day but the care team were available at the end of the phone 24/7. It was so important that we had the space to spend time as a family but also to know that round-the-clock end-of-life support was available if we needed. 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 needed to have Zak free from the equipment and medications that had consumed his short life for so long. We feel grateful that the team had also arranged for Zak to have a hand cast done with his brother a few days before - a memory Tom can treasure forever.
Arrangements could’ve been made to keep Zak in the house but 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. Zak laid at rest in the Hop Garden bereavement suite surrounded by all the things he loved and his brother Tom came to see him. We wouldn’t have wanted an eight-year-old to visit a funeral parlour. But the Demelza setting was perfect – Sacha made sure all the thoughtful touches were in place and it was so calm and serene. The team also helped with funeral arrangements and information on support grants - all things that took an enormous weight off our shoulders. Demelza has since offered bereavement support for our family, including a siblings group for Tom with other children who have lost a brother or sister.
Zak made a huge impact on the lives of everyone who he met and we’re determined for his memory to live on. We have been fundraising in his honour for Demelza, to ensure other families like us can get the help and support they need in the most desperate times of their lives.”
Caroline and David
Zak’s mummy and daddy