Campaign highlights Saul’s brave cancer fight
I SHOULD have been proudly waving my son Saul off for his first day at secondary school, where he was to join his big brother Archie.
Instead, on September 16, our family will mark the second anniversary of his death – aged just nine years old.
Saul passed away 11 months after being diagnosed with a particularly rare and aggressive form of childhood cancer. And in a sad irony, September is also the month in which charities, pressure groups and affected families across the globe campaign to spread awareness of childhood cancer. The gold ribbon is the emblem that unifies us
ooking back now, one thing that really strikes me is how quickly our lives were transformed forever.
Saul went from being a perfectly healthy little boy to the shock of an emergency transfer to hospital in a matter of days.
My wife, Deborah, first noticed something wrong on Tuesday, October 15, 2013. Saul’s stomach seemed slightly distended and firm to the touch.
She managed to get a doctor’s appointment for the following day, only to be told it was probably a strained stomach muscle and that some Calpol should sort things out.
By Friday the tummy looked worse, but Saul was still not showing any physical signs of being ill and even attended his school’s Halloween disco that night.
As his stomach pains got worse, we went back and forth between our local health centre and A&E over the course of a week and a half – with constipation or coeliacs disease suspected to be the cause of Saul’s swelling.
Eventually a consultant determined that in fact Saul had a large amount of fluid in his peritoneum. It wasn’t gas or constipation.
Things now started to move a lot quicker. As it was late, the hospital’s ultrasound department had closed for the day, so after some urgent phone calls a specialist returned to conduct the scan in what was effectively a closed department. We now knew something was very wrong.
After the scan the consultant asked to speak to us alone while a nurse remained with Saul. So, sitting in a small office at Blackburn Royal Infirmary at around 8pm on Thursday, October 24, we were told the words no parents ever want to hear –“We think Saul has cancer.”
Nothing can prepare you for hearing that, and for families affected by this cruel disease, nothing is ever the same again – whether your child survives or not.
Saul was taken straight to Ward 84 at Royal Manchester Children’s Hospital, a specialist childhood cancer ward that serves children from all over northern England, and straight into a world we never really knew existed – children fighting for their lives and undergoing horrendous procedures day after day while the normal world just carries on outside.
He had gone from primary school to Ward 84 in less than two weeks.
Saul had been diagnosed with desmoplastic small round cell tumour (DSRCT) – a very aggressive and extremely rare disease with poor survival rates.
The National Cancer Intelligence Network report of 2010 stated that between 1985 and 2009 there had been just 15 cases diagnosed in the UK. There are hardly any survivors beyond 10 years.
So not only were we having to deal with the fact Saul had cancer, but that of all the types he could have, this was one of the worst. Looking back now it’s obvious that the first days and weeks passed by in an emotional blur. We were running on some sort of adrenalinefuelled auto-pilot. A non-conscious reaction to the horrific news that your child may die.
But we had to stay strong for Saul – especially as he showed bravery way beyond his years. The way he just got on with life despite having to endure suffering no child should, provided us with all the inspiration we needed.
Saul embarked upon the P6 Protocol – an extremely toxic plan. It includes chemotherapy, radiotherapy, surgery and a stem cell transplant.
As parents you are handed a document to sign to allow treatment to begin and it’s not an easy thing to do, but what choice do you have?
The period between November 2013 and January 2014 was truly horrendous. Saul’s stomach was so swollen he looked pregnant. His peritoneum was covered with tiny tumours. The surgeon who carried out the biopsy described there being “thousands”.
To hear that news was devastating as it meant that surgery was going to be very difficult and, as a result, the chances of Saul surviving were greatly reduced.
The chemotherapy drugs used are extremely strong and many children struggle to cope with terrible sickness.
Saul tolerated the medicine incredibly well and after three days and nights continually hooked up to a chemotherapy tower he would insist on visiting Byron Burger on the way home.
He was an inspiration and even managed to take part in his school sports day. Some of his classmates started to believe he would be returning to school soon.
And just when we began to think he might be a miracle boy – he was hit by another body blow. A scan showed the tumours hadn’t shrunk enough to have surgery. And without surgical intervention there was no hope of a cure.
With no alternative treatment plan we had to make the heart-breaking decision to put Saul’s quality of life first. We decided not to complete the final two courses of chemotherapy and instead started upon what was possibly going to be our last summer together.
That was the most difficult thing to deal with. Trying to remain positive and upbeat for Saul while constantly watching for any signs that the disease was taking hold again.
Throughout June and July Saul remained well and we kept as busy as possible, enjoying a series of holidays. Saul loved his cars and a well connected cousin arranged VIP trips to the McLaren F1 and Supercar factory, and the Goodwood Festival of Speed. During this period you would never have known Saul was ill, apart from his short hair not growing back as quickly as normal due to the effects of the chemotherapy.
But inside his little body things were worsening. During August we noticed that Saul’s tummy was looking slightly swollen.
Although deep down we always knew this was inevitable, seeing that things were entering the final phase was almost too hard to take. And there wouldn’t be any chemotherapy, or radiotherapy. This time we would have to sit by and wait for our son to die.
In this modern world how can that be? The swelling slowly got worse day by day. Saul celebrated his ninth birthday on August 19 and we had a celebration tea at home. He had a great time but looking back at photographs now, he seems to have a distant look in his eyes – as if he knew what lay ahead. He certainly never said anything.
From August 23 we cared for Saul at home with support from the community care team. We also had been referred to Derian House Children’s Hospice, who also provided vital support.
We drained his tummy twice a day and managed his medication by the hour. His tummy continued to swell but the drain did ease the pressure, which helped Saul massively and enabled him to continue eating, which was very important in keeping his spirits up as he loved his food. But the decline was visible every day.
At just before 6.30am on Tuesday, September 16, 2014, Saul passed away with his mum and dad at his side. It might sound strange but I often think how lucky we were to remain at home and care for Saul ourselves in the last weeks and days. And how lucky we were that he called us right at the end and for him not to be alone when. he passed.LIfirmly believe he knew what was going to happen and made sure we were there.
He never gave up, right until the end.
To witness his spirit leaving his body was overwhelming. I am not religious, but in that moment you could sense the essence of Saul leaving his ravaged body. He was free.
It will be two years since Saul passed away in September but it might as well have been yesterday. Time doesn’t heal. You don’t move on, ever. You just learn to deal with a constant feeling someone is missing.
Research and funding into childhood cancer is woeful in comparison to adult conditions. This is true of the United Kingdom, Europe, America and across the rest of the world.
A study conducted by The National Cancer Research Institute revealed that out of total funding of £3 billion, just £83 million – or under 3 per cent – could be attributed to childhood cancer.
A better understanding of children’s cancer would inevitably lead to improved care and advances in cures for all.
It would be wholly unacceptable if the next little boy or girl to be diagnosed with this cruel and unforgiving disease wasn’t given a better chance than Saul.
In this modern world it would be a travesty.