I couldn’t tell him he was dy­ing

Su­san Ma­lik tells why she’s kept a dev­as­tat­ing se­cret from her three sons

Woman (UK) - - In My Experience -

Watch­ing my triplets, Bai­ley, He­ston, and Sumner, rac­ing around a squash court never fails to bring a smile to my face. an ob­ses­sion with the sport is one of the many things my 11-year-olds share – along with a love of su­per­heroes and an in­sa­tiable ap­petite. But while they’re so sim­i­lar, there’s a tragic dif­fer­ence that sets my boys apart. Sumner has an in­op­er­a­ble brain tu­mour. and, while the boys are so close, I’ll never re­veal his fate to him, or his broth­ers…

I can vividly re­mem­ber the mo­ment at my 12-week scan when the doc­tor told me I was hav­ing triplets. It was such a shock – triplets didn’t run in my fam­ily, nor my hus­band Cam­ron’s, and we al­ready had three chil­dren, Cur­tis, then six, Perry, four, and Tor­rie, one.

Still, I couldn’t have felt hap­pier. I had a C-sec­tion in Jan­uary 2006 – and sud­denly our fam­ily of five grew to eight. Bai­ley was born first, fol­lowed by He­ston, then Sumner – each a few min­utes apart.

From the mo­ment they were born it was clear they shared that triplet bond I’d read so much about – they bab­bled in their own lan­guage, and if one started cry­ing, I knew it was only a mat­ter of time be­fore the oth­ers joined in! At Christ­mas time, we dressed them up in match­ing Santa hats as they smiled for pho­tos.

And, as the boys got older, whether they were rac­ing around on bikes, play­ing squash, or act­ing out scenes from Su­per­man in the gar­den, as long as they were to­gether, they were happy.

But in July 2016, Sumner, then 10, be­gan com­plain­ing of headaches. At first, I won­dered if he might need glasses, and made a men­tal note to take him to the op­ti­cians. But just weeks later, dur­ing a fam­ily hol­i­day to Spain, he strug­gled to swal­low his food and a day swim­ming in the sea with Bai­ley and He­ston would leave him ex­hausted.

Ter­ri­fy­ing di­ag­no­sis

Back home, we took Sumner to the GP, who pre­scribed anti-sick­ness tablets and told us to wait for a re­fer­ral to the pae­di­atric ward at our lo­cal hos­pi­tal. But in the days that fol­lowed, Sumner only got worse – he was be­ing sick and started drib­bling. We went back to hos­pi­tal and this time he was ad­mit­ted. Cam­ron took time off from his sales job to stay with Sumner, while I was back at home look­ing after the other chil­dren. It was three days later, when my mo­bile rang. I could tell from the way Cam­ron’s voice shook that some­thing was ter­ri­bly wrong. Then he took a deep breath and said the words that still haunt me to this day, ‘Sumner has a brain tu­mour – it’s can­cer.’

The hor­ror in that mo­ment was like noth­ing I’d ever ex­pe­ri­enced be­fore. Cam­ron ex­plained that the tu­mour, called a DIPG, was fast-grow­ing and life

‘we wanted to keep life nor­mal’

ex­pectancy was nine months. Sumner would be given ra­dio­ther­apy in an at­tempt to pro­long his life, but there was no cure.

I sat in si­lence, grasp­ing the phone. It would be Christ­mas soon, then the boys’ 11th birth­day. Sumner was due to com­pete in a squash tour­na­ment and I knew how ex­cited he was to start high school the fol­low­ing year. As re­al­ity be­gan to sink in, my cries filled the room. How could I be parted from my son? I thought of Bai­ley and He­ston, who had been so wor­ried about their brother – the miss­ing mem­ber of their spe­cial team. They’d never cope with­out him.

And, as quickly as that thought came to me, so did an­other – I knew we could never re­veal Sumner’s prog­no­sis to him or his broth­ers. So, by the time Cam­ron and I hung up, we had a plan. We’d tell the older chil­dren the truth, but we didn’t want Sumner to know he was dy­ing – to think there was no hope – and we wanted He­ston and Bai­ley to en­joy the time they had left with him. I know some might think our de­ci­sion strange but we wanted to keep our life nor­mal – and happy – for as long as pos­si­ble.

So, after dry­ing my tears, I sat the boys down and told them Sumner had a poorly head and we needed to take ex­tra care of him. Of course, they be­lieved every word I said, and why wouldn’t they? I’d never lied to them be­fore.

Sumner came home – only re­turn­ing to the hos­pi­tal once a week for ra­dio­ther­apy – and while I forced a smile and an up­beat at­ti­tude in front of the boys, at night, when I looked at Cam­ron, I’d see my own pain re­flected in his eyes.

In De­cem­ber 2016, I went shop­ping for Christ­mas presents – Sumner wanted colour­ing pens and py­ja­mas – but as I paid for the gifts, my hands shook. Would he ever un­wrap them? While Sumner was there, thank­fully, to see what Santa had left on Christ­mas morn­ing, his health was get­ting worse. His speech be­gan to slur and he de­vel­oped a limp – but still, when he asked me if he’d get bet­ter, I’d nod and smile.

A last­ing bond

Life felt hope­less, but then in Jan­uary 2017, Cam­ron showed me an ar­ti­cle he had found on­line. He’d been re­search­ing brain tu­mours and came across a new drug trial. It was in­va­sive and com­plex, but des­per­ate for any­thing to help our boy, we con­tacted the on­col­o­gist lead­ing the trial.

A week later, we were over­joyed when Sumner was ac­cepted – but it came with an £86,000 price tag, fol­lowed by monthly pay­ments of £6,000. So, we set up fundrais­ing pages and so­cial me­dia ac­counts in the hope of rais­ing funds. The do­na­tions came in quickly. Sumner be­gan his treat­ment and by July 2017 his tu­mour had shown signs of shrink­ing. It was won­der­ful news – but his fu­ture is still so un­cer­tain. We have no idea if the treat­ment will keep work­ing – and we need to con­tinue to raise funds for each ses­sion.

Every time Sumner goes to hos­pi­tal, I try to re­main pos­i­tive. He is fed up with be­ing poorly, but he thinks that, one day, he’ll start feel­ing bet­ter. I’m con­vinced it’s be­cause of this that he still plays squash with his broth­ers – even if it is just for a few min­utes at a time – and wakes up every morn­ing with a smile on his face. He is so op­ti­mistic, and I want to keep it that way.

It’s true that a brain tu­mour might, one day, tear Sumner away from his beloved broth­ers. But noth­ing will break their bond – that’s one thing I’m cer­tain of. ✱ To do­nate to­wards Sumner’s treat­ment, visit justgiving.com/crowd­fund­ing/ sun­shine4­sum­ner­imuno

like peas in a pod, Sumner, He­ston and Bai­ley (main pic­ture) have grown up fast

Sumner’s treat­ment is show­ing pos­i­tive signs

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