A PAR­ENT’S TALE: Child­hood Cancer Aware­ness Month

SEPTEM­BER IS CHILD­HOOD CANCER AWARE­NESS MONTH. TOBY CHAP­MAN TELLS THE MOV­ING STORY OF HIS SON SAUL’S BAT­TLE WITH THE DIS­EASE

Harefield Gazette - - FRONT PAGE - Toby Chap­man works for this news­pa­per’s par­ent com­pany Trin­ity Mir­ror

FOR 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 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.

Saul – al­ways with an eye for style – cel­e­brat­ing his eighth birth­day on Au­gust 19, 2013 TOBY and Deb­o­rah have set up a fund-rais­ing page in me­mory of Saul with the Chil­dren’s Cancer & Leukaemia Group Char­ity to help fund vi­tal re­search into rare child­hood can­cers. To donate £3 from your mo­bile sim­ply Text CCLG 3

SAUL to 70300 or go to www.cclg.org.uk/Su­perSaulSquad

Saul with a badly swollen tummy af­ter be­ing ad­mit­ted to Royal Manch­ester Chil­dren’s Hospi­tal Saul with mum Deb­o­rah, dad Toby and brother Archie at home: Christ­mas, 2013 These Beads of Courage, right, are awarded to chil­dren on Ward 84 as they un­dergo treat­ment. Each bead rep­re­sents a dif­fer­ent pro­ce­dure, mile­stone or achieve­ment. Saul col­lected hun­dreds of these beads. The but­ter­fly in the mid­dle is re­served for chil­dren who sadly don’t win their bat­tle Saul on the beach at North Ber­wick dur­ing a hol­i­day in Scot­land: Sum­mer of 2014

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