Behind the photo: Mummy, how can we help James?
Nicole Marsh, 37, was devastated by her son’s diagnosis. But then her two little girls came up with an ingenious way to help...
Arriving home for the first time with my newborn son James cradled in my arms, my identical twin girls, Finley and Isabella, then three, crowded around him excitedly. Tickling his feet and kissing his head, they couldn’t get enough of him, and in that moment I was so glad my baby boy had his big sisters to look after him.
It was April 2010 and James was just a day old. With the same shock of blond hair and gorgeous blue eyes, he looked just like his sisters. But when he was born, and I first held him in my arms, that familiar warmth of maternal love washing over me, I noticed something else – his eyes were almond-shaped. I remembered reading that could be an indicator of Down’s syndrome, and when I pointed it out to the midwife, she agreed to make an appointment for us to see the paediatrician.
The next day my husband John and I went down to the special baby care unit, where a blood test confirmed what I thought. Although we were shocked, we didn’t feel sad – our baby was happy and healthy, and that’s all we could ask for. But the doctors treated us like we were grieving parents, and bombarded us with doom-filled pamphlets that only spoke about the hardest parts of having a baby with Down’s.
By the time we were discharged later that evening, I was feeling a little bewildered. But, back home, seeing how delighted the girls were to have James with them lifted my heart. To them, he was simply their perfect baby brother.
For the next year, Finley and Isabella were my little helpers, fetching baby wipes for me when I was changing James, and entertaining him with funny songs. And while we’d been told that James might take longer to reach his milestones, he took his first steps at 12 months – the same age as his sisters had. And, of course, they were there to hold his hand and help him.
James loved to cuddle up with his sisters on the sofa in the evening. And watching all three of them squished together, his two sisters on either side, I couldn’t have been a prouder mum.
The worst news
When our fourth baby Adam arrived in April 2015, it all seemed so perfect. But then, three months later, James, then two, woke up one morning with a strange limp in his right leg. At first, I thought he must have knocked it in the night. But when it persisted, John and I rushed him to hospital. X-rays ruled out a break, so the doctor did blood tests – but they revealed an abnormality. Taking us into a small room, he broke the worst news I’d ever heard. ‘I’m
‘As soon as I was alone I let the agony wash over me’
so sorry to tell you this, but your son has acute lymphoblastic leukaemia.’
We’re not normally an emotional couple, but looking to John I couldn’t help but feel crushed. ‘What does this mean?’ I asked. The doctor explained that the odds were good. Ninety per cent of young children survived this type of leukaemia, but it meant James would need an aggressive course of chemotherapy and steroids.
Immediately we were transferred to the John Radcliffe Hospital in Oxford, where James went through four days of treatment – the first of many rounds to come. John and I took it in turns to sit with James. And although I stayed strong in front of him, as soon as I was alone I let the agony wash over me.
The day before James was discharged, John’s parents brought Finley, Isabella, and baby Adam to visit. Although the girls chattered away to their little brother, deep down I could see they were worried. Driving back home, I explained that James wasn’t very well, so the doctors were going to make him better. Over the next year, as James’ hair started to fall out and his energy sapped away, the twins were always there to help,.
Incredibly brave
James blew us away with his bravery, still playing and smiling even while he was in the middle of chemotherapy. Of course, there were very bad times. Twice he had to be rushed to intensive care because he became so sick.
One night, as I tucked the girls into bed, Finley had a question. ‘Mummy, how can we help James?’ she asked. I said just being his big sister was enough, but she wasn’t convinced. ‘What about a cake sale, Mummy?’ she suggested. Isabella nodded enthusiastically. ‘We could hold it in school.’ They were very persistent! They were desperate to do something, anything, to help.
So I arranged a meeting with the headteacher, where we explained about James’ illness and asked if we could hold an event at the school. The girls suggested we could donate the money to Bloodwise, a charity dedicated to funding research into blood cancers. The headteacher agreed and the date was set for April 2016. The night before the event, I watched proudly as they spooned cake mixture into their lined up paper casings, their faces covered in flour.
The whole school turned out for the cake sale. Within half an hour, we’d raised £452. ‘They could build a hospital with that!’ exclaimed Isabella.
A month later, tests showed James’ blood was clear of lymphoblastic cells, and he was switched to a milder treatment.
Although James, now four, still has daily chemo, he leads a more normal life. He will be starting at the same primary school as his sisters in September. It will be hard for him to be away from Adam, now two. They have become inseparable but they will still have plenty of time to play football together after school.
Although we don’t know what the future holds, I know that as long as James has his big sisters by his side, he’ll be just fine.
‘The twins were desperate to do something, anything, to help’