Despite fighting hard and never giving up Saul passed away in September, 2014, aged just 9-years-old. Since then, his family have been tirelessly raising funds for CCLG in Saul’s memory, to support research into rare childhood cancers. Here, Saul’s family share his story...
Our son Saul Chapman was diagnosed with the extremely rare and aggressive cancer desmoplastic small round cell tumour (DSRCT) in November, 2013. Despite fighting hard and never giving up he passed away less than a year later in September, 2014, aged just 9-years-old. We set up the Super Saul Squad to raise money in his memory to help fund vital research into rare childhood cancers - especially sarcomas, which are notoriously difficult to treat.
Saul's life was turned upside down in late October, 2013, going from a perfectly healthy little boy one minute to being in Royal Manchester Childrens Hospital just 10 traumatic days later. It was such a shock and from that moment on 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 for us as we knew that for Saul to have any chance of a long-term cure, all of the disease needed to be removed.
Saul underwent 9 rounds of chemotherapy in total 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 the 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 general 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 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 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.
He had put up the bravest of fights but it was simply a battle he could not win.
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.
Make a donation to Super Saul Squad
Open an online fundraising page for Super Saul Squad
Set up a regular Direct Debit donation to Super Saul Squad
Text CCLG 5 SAUL to 70300 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Super Saul Squad so that your donation is allocated to the correct fund.