How did it get this far?

The lump was as big as his face... We had to save him

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Daniella Chowd­hury, 38, Croy­don

Cradling my new­born, Zayn, in my arms, I took in ev­ery line, ev­ery curve, ev­ery inch of his beau­ti­ful face. ‘What’s this?’ I asked a nurse, point­ing at a pea-sized lump un­der his right ear.

We were taken into an­other room, where Zayn was ex­am­ined.

‘Prob­a­bly just a cyst,’ a doc­tor said. ‘Don’t worry.’

Zayn was sent for an ul­tra­sound at three days old, and an MRI at three weeks.

But by the time he was a month old, the growth was al­mond-sized.

‘It’s prob­a­bly a birth­mark un­der the skin which should dis­ap­pear by his first birth­day,’ a con­sul­tant told us in Fe­bru­ary 2016. So, as months passed and the lump con­tin­ued to grow, my hus­band An­war, 36, and I tried not to worry. Zayn was happy and con­tented, just like his big brother Razak, 2. But by the sum­mer, strangers stared at the sat­suma-sized growth. Rel­a­tives urged us to get a sec­ond opin­ion. I trusted our con­sul­tant, who saw us ev­ery three months and was cer­tain the lump would dis­ap­pear by the time Zayn turned 1. In De­cem­ber 2016, we threw him a first birth­day party. We cel­e­brated with cake and bal­loons, but came back to Earth with a bump. Now, when I looked at Zayn, I felt anx­ious. ‘The lump should have gone by now,’ I frowned to An­war. He nod­ded. ‘It’s just get­ting big­ger, isn’t it?’ he said. Some days it felt hard, other days squishy. It was the size of a mango now. When we re­turned to the con­sul­tant in Jan­uary 2017, I in­sisted on a sec­ond opin­ion.

Two weeks later, Zayn had an MRI scan and biopsy and a new doc­tor had news.

‘Your son has cancer,’ the spe­cial­ist said gently.

He’d never seen a tu­mour so large on a baby be­fore. I broke down. ‘I feel so guilty for let­ting things get this far,’ I sobbed.

Zayn’s tu­mour was a rare, aggressive rhab­domyosar­coma, which af­fects less than 60 chil­dren a year in the UK.

It was grow­ing into his jaw­bone.

By the time he be­gan chemo­ther­apy at the Royal Mars­den Hos­pi­tal, Sut­ton, in late Jan­uary 2017, the cancer was the size of a grape­fruit. Dwarfed his lit­tle face. The chemo started shrink­ing the tu­mour but made Zayn sick, and his fluffy hair fell out.

He’d only just started to walk. Now he was stuck in a hos­pi­tal cot.

I stayed with him, while An­war took time off work to look af­ter Razak. Zayn never stopped smil­ing. ‘You’re as brave as a lion,’ I said proudly.

But he re­acted badly to the sec­ond chemo dose, in April 2017.

‘His or­gans are fail­ing,’ a doc­tor warned us as Zayn was trans­ferred to King’s Col­lege Hos­pi­tal, Lon­don.

We were told he might only live for 24 hours.

‘Hang on, dar­ling,’ I whis­pered, ter­ri­fied. In­cred­i­bly, he did. And, af­ter a month on dial­y­sis, Zayn was well enough to have more chemo.

But in Septem­ber 2017, the doc­tors warned the chemo wasn’t work­ing.

My baby needed surgery and tar­geted ra­dio­ther­apy to zap the tu­mour.

Al­though the treat­ment wasn’t avail­able in the UK, he could have it in Hol­land.

The doc­tors ap­plied for NHS fund­ing to cover the £53,000 cost.

Then, in Novem­ber 2017, as we pre­pared to travel to Am­s­ter­dam, Zayn’s doc­tor phoned us.

‘The fund­ing ap­pli­ca­tion was re­fused,’ he ex­plained. ‘I’m so sorry but the treat­ment can’t go ahead.’ We were dev­as­tated. With­out this life­line, Zayn had no chance...

We were told he might only live for 24 hours...

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