How did it get this far?
The lump was as big as his face... We had to save him
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...