We are here to support families through the toughest of times and beyond, providing support however it is best needed. This Children's Hospice Week, parents Sam and Hua share Henry's story.

“Henry was definitely a leader. When he was at nursery he would parade around at the head of a whole troupe of toddlers! He loved being at the forefront, to be first at everything; at school, sports and extracurriculars, when he was with his friends, his family. He never missed an opportunity. That’s part of what made his diagnosis so devastating.

Henry was only six when he was diagnosed with acute myeloid leukaemia (AML), and despite receiving aggressive treatment and going into remission, he relapsed multiple times. We began to face the difficult reality that there might not be a happy outcome for Henry, and after several bouts of treatment we were referred to Demelza for support. We wanted him to have art therapy, so he could work through the complicated emotions he was feeling about his condition and how it affected him. Anyone who knows Henry well knows that he loves to craft, and he really enjoyed his sessions while he had them, learning new ways to express himself. Sadly, he couldn’t participate in many due to so many inpatient admissions.

Henry would sometimes spend months in hospital, and the nature of receiving treatment during the pandemic meant that he was always separated from at least one of us, as well as his little brother Edward. They had a relationship like any two brothers; sometimes scrappy, but it was clear from the way they’d greet each other after a long hospital stay how much love there was between the two of them. It was incredibly hard for both of them to be away from each other.

In November 2021, while Henry was at home with us, we were gifted tickets to the Danson Fireworks Show by Demelza. We were all treated to a meal in the beautiful boathouse before watching the fireworks together, and we had our own area away from the crowds to protect Henry. It was one of the best shows we’d ever seen, and an opportunity to feel ‘normal’. We didn’t get many opportunities like that; it’s actually one of the last big outings we were able to take as a whole family.

Not long after we took this trip, in February 2022, Henry’s health rapidly deteriorated; he developed sepsis during a stay in hospital, and was transferred to the intensive care ward at St George’s Hospital. The team did everything they could to treat Henry, but his condition continued to get worse as the infection spread. In a matter of days, we found ourselves facing the unbearable conversation about where we wanted Henry to spend the last hours of his life.

At that point we wanted to be nearer home, at Demelza’s Eltham hospice in South East London, but Henry didn’t have enough time. We didn’t want to take the chance that he might die during the transfer, and so we made the difficult decision that he would stay in hospital. On 27 February, around 9:30pm, our brave boy Henry died in St George’s Hospital. It was at this point he was transferred to Demelza, to their bereavement suite. It was so important to us at the time that he didn’t have to go anywhere else first; there wasn’t any transition, it was straight to Demelza.

This was our first visit to the hospice, and we had no idea what to expect. It turned out that what we would gain from being at Demelza during that time – instead of being at home, surrounded by Henry – was more than we could have imagined. We all stayed with Henry for five days; what we remember most is the overwhelming sense of calm we felt after stepping through Demelza’s doors. He lay in his special bedroom, his favourite music playing softly in the background, and we had the opportunity to spend more time with him during those first difficult days.

Demelza staff were there for us the whole time, offering their quiet support. Some – in the family support department – helped us begin to organise the avalanche of practical elements that had to be undertaken. Others, in the bereavement and care teams, simply gave us the chance to talk, about Henry and about ourselves.

Critically, we were given opportunities to create more memories with Henry during that time. The care team helped us make plaster casts of his hands, and they arranged for someone to come in to take his fingerprints – these have since been turned into jewellery so we can carry Henry with us.

Edward was looked after as well; he had one-on-one music and art therapy sessions at the hospice in the days after Henry’s death, helping him to process the complicated emotions he was being faced with. The care didn’t stop after we left Demelza, and he has continued to have art therapy sessions at school with Demelza’s art therapist Rachel, giving him a safe space to express whatever he might be feeling.

The team at Demelza have been, and continue to be, incredible and have helped us through some of the hardest days we have ever had to experience; for that we are truly grateful."

Henry's parents, Sam and Hua.