It’s been eight years since we lost Samuel and not one day goes by when we don’t think of his smile. To help cope with my grief and to give others support I wrote Sam’s Story. We also wanted to say thank you to everyone who had been involved in Sam’s life – who’d helped him and who helped us. We decided to donate 25% of profits to The Sick Children’s Trust, a charity that gave us a ‘Home from Home’ while Samuel fought so hard in Addenbrooke’s Hospital, far away from home…
When Samuel was born, for the first few months, our lives were very much like every other first-time parents. We had to get used to life with a baby, endure many sleepless nights and learn new things every day.
I began to worry about our son’s health when I noticed he wasn’t as active as my friend’s daughter – who was just three days older than him – and was reaching her milestones before him.
I tried to let it not worry me too much and actually over the next ten months Samuel began to reach some major milestones. He found his voice, his feet, and was walking and talking. But by the time his first birthday came around the worry had returned. I just had this feeling that something wasn’t quite right. During the night he was up a lot, needing to feed or be comforted. After a visit to the doctor, I was told it was just a cold. But I couldn’t shake the feeling. I spoke to my mum about it, who pointed out some signs that linked to leukaemia (as she’d had it eight years before). Samuel was pale, lethargic and had bruises on his face and legs.
The next day I rang the doctor to insist on tests and listed his symptoms. She urgently referred us to a paediatrician. Maybe it wasn’t leukaemia. Maybe he was coeliac or anaemic. After the blood tests we headed home but it wasn’t long before we got the call which confirmed our worst fears. Samuel had leukaemia and we needed to take him straight back to hospital. I didn’t know at this point that I wouldn’t see my home for another six weeks.
It’s impossible to describe the level of fear you feel when you know your child has a life-threatening illness. One minute my mind raced ahead to possible outcomes, both good and bad, and the next minute I was reliving the past, wondering when and where it had gone wrong and if there was anything I could have done to prevent it.
The following day we were rushed from West Suffolk Hospital, our local, to Addenbrooke’s Hospital, over 30 miles away from home. We had no idea what would happen from one moment to the next and could only wait to be told. As we went in the ambulance – the darkest thought crossed my mind. Samuel might die. When we arrived he underwent his first operation to have a Hickman line fitted for his chemotherapy. We were told that Samuel would spend the majority of his treatment in hospital and that he would be an inpatient. There was so much to take in. And it was all too much. We were both allowed to stay with Samuel for that one night, after that we’d be moved into a place called Acorn House which was on the hospital grounds and run by a charity called The Sick Children’s Trust. The nurses would arrange this for us as soon as possible, when a room became available.
Until we could stay at Acorn House, we used the parent’s room and lived on microwaved ready meals. And because only one of us was allowed to stay on the ward, Stuart had to go home by himself, to an empty house which wasn’t ready to be empty when we’d left. And I was in the hospital with Samuel who was just as afraid as I was.
Thankfully, we soon met the Assistant House Manager at Acorn House. She was a jolly lady with a big smile. We explained our situation and she was so understanding about how difficult it was to be separated. It wasn’t just a case of not having the emotional support from Stuart as he was over 30 miles away, but also the little practical things, for example if I was hungry or thirsty the only time I could get a cup of tea was if he was asleep. It massively added to the stress of the situation.
Acorn House had 15 rooms which were normally always full, but a room had become available and thankfully it was ours. Stuart went over first to have a look and came back beaming. He said it was lovely and that we had our own room, next to a shared bathroom and that there was a big modern kitchen where we could cook - there was even a playroom and living room.
And it was really lovely. I remember walking out the hospital doors after spending five days inside and feeling like a prisoner on day release. Before our hospital life, Samuel and I would be out every day, but hospital was claustrophobic and restrictive. That first walk over to Acorn House, in the September sunshine, gave me so much pleasure. To be in the fresh air with natural light, opposed to an air-conditioned room with florescent lighting was something I never knew I would appreciate so much. From that moment, each step over to Acorn House was a huge relief as just for a moment I was outside the hospital walls.
Acorn House became our home for six months. Our room was furnished simply but tastefully. There were two beds which had been pushed together (though we only stayed at Acorn House together once – and that was with Samuel in between us). There was also a direct phone line in our room which meant we could call the ward, or the ward could call us. It was a bolthole from hospital life. Years ago, accommodation like Acorn House wouldn’t have existed and we would’ve been separated from our son during the last six months of his life. That would have been haunting. We can never thank the charity enough for giving us this precious time as a family.
Childhood cancer is frightening and painful. But for the majority of Samuel’s treatment, there was hope and desire for a better future which kept us going. We learnt that Samuel was the youngest patient on the ward and the second youngest they’d ever treated for cancer. Samuel kept up his brave fight with the help of lots of cuddles from us and distractions like visitors, toys, books and the television.
During his first round of chemotherapy, we were allowed to take Samuel home on the occasional weekend. Even though we were so pleased to take him back, our lives at home were suddenly so different. We still had to give Samuel his medicines and set up his night feeds, but we did have our freedom back. Also, Samuel was able to relax with no doctors or nurses around who could potentially do something painful at any moment. He hated the thought of going back to hospital, he was just 15 months old but I think we underestimated just how much he understood. When it was time to go back, he’d stop smiling. We’d pack quickly, grab food to take back to Acorn House and head to the hospital. 30 miles away from home.
Samuel started his second round of chemotherapy, and this time hospital life was easier. We’d take Samuel to Acorn House as much as possible and sometimes we’d even have lunch in the dining room. Stuart and I also spent many evenings there, as it helped me cope with the days if I knew I was going to get a couple of hours away from the hospital environment later on. Those hours just gave me a sense of relief.
As the weeks rolled on we began to get exhausted as we had no idea if we’d be going home or if ultimately the treatment would be successful.
Things were looking on the up before Samuel’s third round of chemotherapy. We were allowed 12 days at home before Christmas. It was hard when we got the call to say his chemotherapy would start before Christmas had arrived, but actually the Christmas spirit was very much alive in the hospital with songs and even a visit from Father Christmas. And we received the best present on Christmas Day – we were allowed to take our son home.
Samuel remained strong – he lasted past New Year without getting an infection. Even the doctors were shocked! He still had to go to Addenbrooke’s weekly, and we could see him going from strength to strength as a result of not being in hospital. But it was only when I saw him around healthy children that I remembered how ill he was.
And then he began to get sick again. And I grew concerned about him. It reminded me of just how ill he was before his diagnosis. Samuel didn’t seem happy and he didn’t want to walk or stand. His sleeping had also worsened and we were back to being up for long periods in the night.
He was taken for more blood tests and we were told that they may have found more leukaemia cells. I tried not to cry but couldn’t hold it back. In an instant, I was back in September, hearing the news for the first time.
He needed a platelet transfusion after a lumber punctured confirmed that the leukaemia had come back. He was just a baby, he’d been through enough and I didn’t want him to keep going through the pain.
I asked them to look into alternate treatment and they found a chemotherapy – but the three children they had used it on had died. We either took the risk with the chemo or took him home. We were told it was likely Samuel would get infections and that it could affect his organs. It felt like we were being given a choice. In my mind, there was no choice.
I couldn’t lose him. How could I give my beautiful boy a death sentence? This chemotherapy sounded awful, but it was our only chance and I wanted to take it. But if it didn’t work Sam would only have two or three weeks left. We hadn’t come to the end of the line. There was another option, another chance. I prayed it would work.
At Acorn House we took video footage of Samuel. In the backs of our minds, although neither of us acknowledged it, I think we were both aware we might not have many more chances. At that moment Samuel seemed relatively healthy and normal. However, when we watch the film back now, it feels so sad. Stuart and I are falsely upbeat and Samuel is hardly capable of interacting with us. He does the odd thing like holding up his cuddly toy and Stuart and I pounce on these moments as proof that he’s going to be okay. But it’s obvious that he was far from well. Samuel stayed at Acorn House with us that night. We’d never done it before, but I felt strongly that we needed time away from the ward, I thought it would be a good opportunity.
Samuel’s treatment was seven hours a day for five days. And when he was taken off his pump we would sometimes go over to Acorn House. Three weeks after his failed lot of chemotherapy, Samuel was still here with us and seemed well. I took comfort in that. We began to look forward to the next stage of his treatment, a bone marrow transplant which would take place in Bristol. Life was beginning to feel more positive. Hearing the doctors and nurses talking about a transplant, rather than about taking Samuel home to die, was an extremely encouraging sign.
But Samuel soon got a temperature. He had a fungal infection in his lung. They needed to do another lumber puncture. There was no way he could die. It would be too much. On our return, we were asked to speak to the doctors and the news wasn’t good. The leukaemia had come back again. This time we were given the choice to stay at hospital, go home or to a hospice.
Our little boy was going to die. We’d been told; it was official. But there was still a big part of us that didn’t believe it. How could he, when he was sitting with us trying to talk? We decided to take Samuel home for palliative care.
No one expected him to survive for as long as he did. He’d exceeded everyone’s expectations and in himself he was happy, and would go out and play with his toys. We really didn’t think he was about to die.
But he began to cough up blood, so we took him to the hospital. He was suffering. We would have fought to our own deaths to provide the best for him.
In my heart of hearts, I knew Samuel was dying. And I knew nothing we did would change that. We’d tried everything. For six months Samuel had battled with this terrible disease. He’d suffered all the side effects of chemotherapy and lived so much of his young life in hospital. And, in between feeling ill, he’d fought to live a normal life. But this was it now.
The love that Stuart and I had for Samuel was beyond anything we’d ever felt before. It’s grown bigger and bigger in the time since we’d had him and now, at twenty months to the day, and after eight months of ill health, we loved him more than ever. But I knew our love was not enough to save him. And I knew we loved him too much to let him suffer any longer.
We watched as he closed his beautiful blue eyes for the last time. And then, at last, he found some peace.
Amanda Murray, Samuel’s Mum
Sam’s Story is available to buy on Amazon. 25% of the profit from the sale of each book will be donated to The Sick Children’s Trust. In addition to Sam’s Story, Samuel’s Dad Stuart Murray has published a commercial philosophy/spiritual book called 'How to be Human' with 25% of the profit being donated to War Child'.