Baby Thomas and his family were supported by Naomi House & Jacksplace as he came to the end of his life. This is Thomas’s story.
In 2021, when he was just one year old, Thomas was diagnosed with a childhood cancer and a rare neurological condition. Thomas and his family were cared for by Naomi House & Jacksplace, as Thomas came to the end of his life.
Claire and Jérôme, Thomas’s parents, share their story:
There was a softness in the care and even the conversations with the doctors, at Naomi House & Jacksplace. It was just perfect for what we needed.
Before his disease, we knew Thomas as a very happy little boy who would laugh when others were laughing, even if he didn’t understand what they were laughing about. He loved to play with balls, and join in with his older brother and sister, Raphaël and Sofia, if they were playing with bricks or reading a story.
Thomas started to show strange behaviours when he was around 11 months old. It was quite difficult to know whether anything was wrong or whether it was just part of his development. A few days after his first birthday, real symptoms appeared. He started to have uncontrollable movement of his eyes and problems with his coordination and balance. The hospital did lots of tests and we were told that Thomas had a thoracic neuroblastoma, a tumour mostly affecting young children, and Opsoclonus Myoclonus Ataxia Syndrome (OMS) which is a neurological disorder often associated with neuroblastoma.
This was a watershed moment for us. We didn’t know what we were expecting but it wasn’t this, we hadn’t heard of it before. You hear about adult cancer, but I didn’t know anyone who had a child with cancer, so I didn’t know how bad it was. I remember the first night and I was thinking, ‘are they going to tell us tomorrow that he has 10 days to live?’ We were getting ready for the worst.
The medics told us about the treatments available and that gave us hope. We had months of trying steroids, chemotherapy, a clinical trial based on immunotherapy and finally surgery. We had many visits to the hospital and discussions with consultants about what was best for Thomas. At this point, we were still thinking long term and talking about the future, which was reassuring.
However, a few days after Thomas had surgery to try and remove the neuroblastoma, he started to lose the use of his legs and we knew that something was wrong. Thomas was given an MRi scan and we were told that the tumour was back and that it had spread.
The cancer was spreading quite quickly and Thomas was deteriorating every day. We had to decide what we wanted to do – try an experimental treatment with very high uncertainty, go back to chemo to slow down the spread or have palliative care. We only had a couple of days to decide. It was then that we met Dr Kate Renton, a Paediatric Palliative Care Consultant at Southampton Hospital and also at Naomi House & Jacksplace. She said that we should consider Naomi House for Thomas.
Our community nurse kept saying how wonderful Naomi House & Jacksplace was, so we arranged to go for a visit before we made up our minds. We met Chris Forster, the Head of Naomi House and Paediatric Services at the hospice and she showed us around, she was so amazing.
We asked whether Raphaël and Sofia would be able to stay too, and although normally this wouldn’t have been an issue, at the time Covid restrictions meant that family visitors had to be limited. However, as things were moving so fast with Thomas, they said the children could come too, so that the whole family could be together.
It was so good to go to Naomi House. Thomas was very poorly and being December, it was a busy time of year. We were stressed and exhausted. Naomi House took care of everything, it was so peaceful and it gave us quality time together as a family.
We knew that Thomas was going to die, but it was difficult not to know how long he still had to live. One oncologist was talking about a few months while another was talking about a few weeks, even days. We knew there were special things we wanted to do before Thomas died and it was best not to wait.
We wanted precious pictures as a family while there were still the five of us. We arranged a photographer to come to our home but Thomas was very poorly. We saw Dr Tim Warlow, who is also a Paediatric Palliative Care Consultant, in the morning and he was so good and did everything he could to enable us to go home. He reviewed Thomas’s pain relief to ensure that his pain was under control and he gave us a very precise medicine plan.
At home, the photographer took some lovely photos of Thomas. Photos of his face, his nose, his eyes. He had such beautiful eyes. We also had photos taken of Thomas with his brother and sister and us as a whole family. We have all these memories and we will treasure those last pictures for the rest of our lives.
The day after, we had arranged Thomas’s baptism, as we had done for our other children. It was amazing. Raphaël and Sofia were going to be the godfather and godmother even though they were just 8 and 5. We were joined by family and friends. Movement was very painful for Thomas because the neuroblastoma had spread, but he was peaceful on the day and we’ve got memories of him smiling.
Thomas liked company, he liked to socialise and even though he was feeling poorly, he wanted to be with us. I’m so glad Dr Tim helped us get home so we could have Thomas’s baptism, it was four days before he died and I know he enjoyed it. He had a celebration in his life with our friends and family.
The next day, Thomas was in a lot of pain and we knew it was time to go back to Naomi House for the last days. Thomas was going downhill very quickly and was in constant pain, so he was put on continuous morphine.
We knew he wasn’t going to respond to us anymore. We had been holding him and it was like having a sleeping baby in your arms.
We asked the children to come and say goodbye to Thomas. If they wanted to say any last things to their brother, now was the time. Both of them spent some time with him to say what they wanted to tell him. They were happy to have had those moments with their brother.
Thomas died later that evening and we held him through the night. We brought the children in and it was a special time for the four of us around Thomas.
Thomas stayed in his room for 48 hours until we left Naomi House, and for those two days, time was frozen. Thomas had died but the nurses told us to take the time we needed, there was no rush, it was up to us to decide when we would go home and carry on. It felt like it was the end of the nightmare in which we had lost our son.
Everyone at Naomi House has been so kind. The doctors and nurses answered all our questions with gentle voices, they always had the right words to say and nothing was a problem for them. The family support team helped us with practical arrangements.
I really appreciated being able to visit Thomas at Naomi House several times. We would call before we came and everyone was very flexible and welcoming. The Butterfly Room had soft lighting, and music if we wanted it, and it made us feel very comfortable and cosy. It was very special to be alone with my son.
The support we received from Naomi House & Jacksplace was wonderful. We didn’t know what to do or where we were going and we were taken by the hands, step by step all the way. We felt cared for and listened to, we just let the team lead us. We didn’t have to be in charge when it was so difficult to make decisions.
There was a softness around the care, around Thomas, around us, around our feelings. We arrived in this big park, the green, the trees, the playground. It feels like a special world for bereaved families and the siblings and it is very supportive.