This is Saul’s story, by his dad Toby:
“Saul’s life was turned upside in late October 2013, going from a perfectly healthy little 9 year old boy one minute to being in Royal Manchester Children’s Hospital just 10 traumatic days later.
We became aware that Saul was getting up very early in the morning to go to the toilet which wasn’t normal. We then noticed that Saul’s tummy was distended, slightly swollen and firm to the touch. We took him to our local doctor but she said it was probably a muscle strain and sent him home with Calpol.
Over the course of the week his tummy continued to swell until you could see it through his school uniform.
Then over the weekend he was delirious at night so we took him to the walk-in clinic in the morning and they sent him for an x-ray, which didn’t show anything.
We then went back to the doctors who once again sent us home. We then went back to A&E because we knew it was not right. Saul was assessed and initially the hospital thought it might be fetal impaction or coeliacs and he was sent home again while we waited for an ultrasound. Saul’s bloods were all fine.
Then finally after an ultrasound scan we were given the news no parent ever wants to hear and Saul was transferred to Manchester from Blackburn in an ambulance.
It was such a shock and from that moment onwards our lives changed forever. Saul was diagnosed with desmoplastic small round cell tumour (DSRCT) – an extremely rare and aggressive cancer with a very poor cure and survival rate.
Saul’s world had been turned upside down but he refused to give in and continued to be his cheeky self. He always had a smile on his face and tolerated the chemotherapy really well.
But after an initial positive reaction scans revealed that the tumour masses hadn’t reduced enough for surgery to be possible. This was horrendous news as we knew that for Saul to have any chance of a long-term cure all the disease needed to be removed.
Saul underwent 9 rounds of chemotherapy at Royal Manchester Children’s Hospital but with surgery not possible we had to take the difficult decision to stop and instead concentrate on trying to manage his condition and maintaining his quality of life. So brave Saul embarked upon 30 rounds of radiotherapy at the Christie Hospital, also in Manchester. This involved 20 treatments to his abdomen and 10 to a tumour near his heart.
In the period between finishing chemotherapy and during radiotherapy Saul continued to be very strong and positive. We had a lovely final summer with Saul and went on holiday and visited family. He even managed to be a VIP for the day at McLaren F1 and Supercar factory and at the Goodwood Festival of Speed.
But then in August his tummy started to swell again and Saul’s breathing became laboured as a result of a fluid build-up in his chest. The disease was taking hold again and we knew things were going to get very difficult. Saul had another stay in hospital to have the fluid in his chest and abdomen drained and for a drain to be fitted to his tummy which enabled us to manage this from home.
Unfortunately, Saul’s condition continued to decline and he lost a lot of weight, but despite this, he never stopped smiling. Then over the weekend of September 13th things worsened. On the Sunday he managed to get downstairs for the last time but was so weak we had to carry him back up to bed. He was still his defiant self though and kicked up a stink when it was time to take his medicine.
Saul passed away in the early hours of Tuesday morning on September 16th with his mum and dad with him. He was very calm and not in distress at all. Saul was a magical and special boy whose determination and positive attitude, even in the darkest of moments, will live on in us for the rest of our lives”