Save my superman
The receptionist smiled at me. She knew my name now.
‘Freddie Mossman Capp?’ she said. ‘Take a seat.’
As I waited on the vinyl bench I looked around the waiting room. There was no point flicking through the magazines. I’d seen them all half a dozen times before.
Eventually Freddie’s name was called.
‘What can I do for you today?’ the doctor said, his lips pressed into a forced smile.
‘It’s Freddie. ‘I’m…’
‘…worried about him,’ the doctor continued for me. ‘OK well let’s take a look.’
I knew he thought I was nothing but a silly, over-anxious young mum. This was my fifth visit in as many weeks, and that didn’t include the four trips to the walk-in clinic and A&E, but there was something wrong with Freddie, I just knew it.
I was only 17 when I found out I was pregnant. Halfway through my hairdressing course, it wasn’t great timing. A baby wasn’t exactly what my boyfriend of three years, Jack, and I had planned at our age but slowly, we came round to the idea.
I carried on with my studies and qualified as a hairdresser just weeks before giving birth. And when Freddie entered the world last May year, Jack was there by my side.
With his dark hair and big eyes, Freddie was the spit of his Dad. We both fell in love with him.
The sleepless nights were hard at first but Freddie was an easy, happy baby and we soon fell into a routine. Freddie and I got our own flat while Jack still lived with him Mum but would come over to see us every day.
But around 12 weeks, Freddie seemed to become unsettled and more sleepy than usual. At first, I wasn’t too worried. But then I noticed he looked pale too and had a high temperature.
Desperate to get him looked at I made a doctor’s appointment that afternoon.
‘Nothing to worry about,’ he assured me. ‘Come back in a few days if you’re still concerned.’
Later that week, Freddie still seemed under the weather so I made another appointment.
‘He seems perfectly fine to me,’ the doctor said.
Once again, we were in and out within minutes.
‘It was like they dismissed me as a silly teenage mum,’ I moaned to Jack. ‘Still I suppose they’re the doctors.’
But now, at four months, I noticed Freddie had developed a small cyst on his forehead too.
‘We really need to get that checked out,’ Jack said that morning as he kissed us goodbye before he left for his labouring job. So here I was again.
They’re sure to send him for tests this time, I told myself as the doctor checked Freddie over.
So I couldn’t believe it when again, we were sent on our way with a ‘nothing to worry about’.
It was only when two weeks after spending another seven hours in A&E at Milton Keynes General hospital only to be told Freddie had a slight cold, that I confided in my health visitor on her monthly routine visit.
‘I really don’t know what to do,’ I said. ‘I’m really worried. But they just keep fobbing me off.’
I expected her to tell me not to take things so personally but when she took a look at Freddie, she agreed with me.
‘He does look rather pale,’ she said. ‘I think we should send him for some blood tests just to be on the safe side.’
Finally, someone was listening to me.
We took him back to Milton Keynes General for blood tests. After a while we were told the results had come back abnormal. At first I was relieved we were going to get to the bottom of things but when they called us into a side room, I panicked.
‘What is it?’ I stammered. ‘What’s wrong?’
‘Is there any cancer in the family?’ the consultant asked.
‘No,’ I replied confused. ‘Why?’
‘I’m afraid it’s bad news,’ she continued.
When I heard the word ‘leukaemia,’ I crumbled. Leukaemia? That was cancer, wasn’t it?
I walked out of the room in shock. In the corridor I started screaming. My baby boy couldn’t have cancer, he just couldn’t. He was only five months old…
I couldn’t believe it. Jack held me as I wept. We were both devastated.
One thought flooded my head – I knew Freddie was sick, why hadn’t it been picked up sooner? Especially as we were told that Freddie’s symptoms – tiredness, fatigue, loss of appetite and pale skin – were all classic symptoms of leukaemia too. The cyst was another sign too.
‘But I told the doctors about all of the symptoms,’ I wept.
The next days passed in a blur as we were transferred to Oxford’s John Radcliffe Hospital for Freddie to start treatment.
We held his tiny hand in the intensive care unit as doctors explained they were giving him steroids to prepare him to begin chemotherapy.
‘How did it get to this?’ I asked Jack, blinking back tears.
A few days later Freddie had a Hickman line fitted and a week later started seven weeks of chemotherapy aimed at destroying as many leukaemia cells as possible. I was so scared for him.
Jack and I moved into the onsite Clic Sergeant House accommodation for parents of sick children so we never had to leave his side.
The next seven weeks were agony as Freddie’s thick black hair started falling out in patches but he kept on smiling through every day completely unaware how sick he was. Still, we called him our little superhero.
Freddie responded well to treatment but doctors warned his late diagnosis meant he had just a 30 per cent chance of survival even though he was in remission.It wasn’t a case of ‘if’ the cancer came back but ‘when.’
I couldn’t help thinking that if only I’d been listened to earlier his chances would have been better.I felt awful that perhaps my son hadn’t been given the care he should have just because I was a young mum.
To reduce the chance of a relapse and increase his chances of survival Freddie’s consultant arranged a bone marrow transplant.
We hated the thought of Freddie going through another operation but it was his best hope of recovery.
Not knowing if the transplant would be a success and facing months in isolation as he recovered, The Henry Allen Trust, set up by Dawn and Mark Allen in memory of their son Henry who died of cancer aged just four after being misdiagnosed several times, arranged for us all to go on a family holiday. ( She has requested that the Henry Allen Trust is mentioned as she is very grateful)
We were so grateful for the chance to spend time with Freddie at Centre Parcs in Woburn. We had an amazing time together, just like any any normal family.
At the beginning of April Freddie was admitted to Bristol Children’s Hospital for more chemotherapy to weaken his immune system ahead of his transplant on 17th April and remained in isolation while we waited to see if it would work.
Jack gave up his job to live in hospital accommodation near us. Terrified that it wouldn’t work, we wanted to spend every minute with our son.
What if this it?’ I couldn’t help thinking. ‘What if this is all the time we have together?’
‘Stop it!’ Jack urged. ‘He’s our little fighter.’
Just then, oblivious to everything, Freddie gave me a huge smile. I felt like my heart would break. I couldn’t lose him. I just couldn’t.
We wouldn’t know if it had been a success for the next three weeks. The days passed so slowly. It was agony.
But then last week, on the eve of Freddie’s first birthday, we got the best present ever – the news that the transplant had been a success. We were over the moon. It was an amazing feeling. It felt like a huge weight was lifted.
Jack and I hugged Freddie like we would never let go. I was the proudest mum in the world. Some people never get to meet their heroes but I gave birth to mine.
Freddie was allowed to move into onsite accommodation with us. It meant we could wake up together on his first birthday. It was so special singing happy birthday to him as he lay next to us in bed. We hadn’t had time to arrange a party but the nurses filled the ward with balloons. Freddie loved it.
Now, a week on, we’re looking to the future with positivity. We’ll remain in Bristol so Freddie can attend his twice weekly blood counts before moving back home to Milton Keynes.
We’re also fundraising to treat Freddie to a huge belated birthday party.We want to make up for all the time he has been in hospital and show him some happiness and fun.Freddie deserves to be spoilt after all he has been through we have a lot of lost time to make up for.
Looking back we’re so grateful to all the doctors and nurses who saved Freddie’s life but I can’t help thinking had I been an older mum my initial concerns might have been taken more seriously. I feel were let down badly.
We might be young parents on but Freddie is loved and cared for just like any other child. We hope that our story will encourage medics not to dismiss a mother’s concern because she is young and inexperienced.
Freddie should have been diagnosed earlier. Nobody knows what the future holds but we just hope that he keeps doing well and can stay healthy.
I felt nobody was taking me seriously because I was a young mum but I knew my baby and I knew something was wrong.I felt helpless because I tried everywhere and I even started to doubt myself.I can’t help thinking if I wasn’t a teen mum somebody might have taken me seriously.Old or young, when it comes to their child, mums still know best.
To help raise money visit : http://www.gofundme.com/uju4vmw