A PARENT’S TALE:
Childhood Cancer Awareness Month
F OR the majority of parents the month of September is an especially emotional time – the summer holidays are over and an exciting adventure awaits as the new school year begins.
Some children are starting primary school, while year 6 are making the giant leap to ‘big’ school and a major step on the road to adulthood.
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 the emblem that unifies us.
Until Saul fell ill, the thought that children were dying of cancer had never entered our minds. Why would it? But the sad and perhaps surprising fact is that cancer is the single biggest killer of under-18s in the western world.
Looking 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 15th, 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 Accident & Emergency 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. The battle in hand was to diagnose Saul’s cancer as soon as possible so a treatment plan could begin. I will never forget what our oncology consultant said when the biopsy results were confirmed. We were taken to yet another faceless hospital office, and told: “Saul’s diagnosis is incredibly unlucky on a ward where even being here makes you unbelievably unlucky.”
It was maybe a little insensitively put – but sadly true.
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 10-year and beyond survivors. 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 adrenaline-fuelled 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 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 wellconnected cousin arranged VIP trips to the McLaren F1 & 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 23rd 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. The tumours inside his body were literally burning up every calorie that he managed to consume.
Despite this, Saul point-blankly refused to give in. Every morning he could easily have simply stayed in his bed. But instead he would get up, pull on his drop-crotch joggers (Saul loved his fashion) and slowly walk down the stairs.
But despite his brave spirit Saul was wasting away in front of our eyes and there was nothing we could do.
Sunday, September 14, started the same as ever, with Saul slowly making his way downstairs before settling on the sofa with his iPad. He CHILDHOOD CANCERS NEED DEDICATED RESEARCH was in a lot of pain and couldn’t find a comfy position and asked to go back to bed. Deborah carried him upstairs, her beautiful little boy reduced to skin and bone.
On the Monday we received a call from school. The head teacher and some of the staff wanted to see him.
In the evening Saul took his medicine and drifted off to sleep. During the night I remember hearing him talking. I cannot remember whether I was dreaming or not but his voice sounded like it did before he was ill – carefree, without worry.
Then at around 3am we heard Saul through the monitor. He was in pain and was finding it difficult to breathe. We tried to give him some morphine but he refused to take it. He still had a strong spirit running through him.
We had a special aspirator at home and gave Saul some oxygen. It helped him settle and he drifted off to sleep. We were woken again after 6am and went to his room. He was aware that we were there. At just before 6:30 am 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. I firmly 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% could be attributed to childhood cancer.
Medical professionals and pharmaceutical companies always cite the same reasons – that childhood cancer is too rare and as a result there are too few cases to conduct meaningful clinical trials and also probably hardest to take of all – that there isn’t enough return on investment.
Yes. The life of your nine-year-old son simply isn’t worth it.
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.