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Melody Berthoud: Andrew's Mum

written by

Leukaemia Care, Charity

  • @webeatleukaemia 2

Andrew was 3 years old when he was diagnosed with acute lymphoblastic leukaemia (ALL) on Wednesday 3rd October 2012.  That was the day our lives turned upside down.  He had 1235 days of treatment which he completed on February 20th 2016.  He is now in remission and thriving as an energetic seven-year-old. 

Here is our diagnosis story:

It was the beginning of the Autumn term and Andrew hadn’t really settled at Pre School.  He was tired and his legs ached. I picked him up with the pushchair and a sandwich, which he ate and then fell asleep.  At home he was listless and wanted to watch TV.

He was sweaty at night and his pillow case was often wet in the morning, I thought nothing of it.  He had a few nose bleeds in the night too, I thought it was just what happened to young children and washed the pillow case.

A friend commented one afternoon at the school gate that he was looking pale.  Yes, I said, he had been very tired that week and was probably sickening for something.

On a Saturday in late September 2012 Andrew woke up in the middle of the night and was sick. The next day we went out with my brother and his family.  Andrew wasn’t right and was still tired.  I hadn’t taken the pushchair and refused to carry Andrew.  He had to walk I told him. My brother picked him up and Andrew instantly fell asleep on his shoulder. So when Andrew developed a high temperature on Monday I wasn’t surprised, he had been sickening for something.

When I took him to the doctor on Tuesday it was because he had a spot on his side like a chicken pox, a high temperature and was pale.  As soon as I walked into the room the GP said how pale Andrew looked and asked me what else was wrong. I listed all the symptoms and she suggested a blood test to see what was going on. As soon as she said that and after reeling off all the symptoms, I knew it could mean leukaemia.

We went straight to the Hospital where Andrew was given four patches of numbing cream one on each hand and foot. The doctors were obsessing over 2 bruises on his shins. They must have suspected. Trying to get a cannula in to take blood out was utterly horrific. I pinned him against me whilst he screamed, I cried and Mum stroked me and the nurses tried and failed repeatedly to get any blood.

When they succeeded, we waited. I had googled the symptoms of leukaemia so voiced my fears to Joseph that night and even though some symptoms fitted others such as, 'excessive weight loss' other like 'excessive bruising' did not. So, we talked ourselves out of it and went to sleep.

On Wednesday I went to work.  Joseph stayed at home with Andrew. Mid-morning he was rung, told to pack an overnight bag and go to the Hospital. The reason given was something to do with a high number of white blood cells found in the blood sample.

The spot on Andrew’s side had ballooned in 24 hours and inflamed the skin around it to about the

size of a saucer. He has a scar now the size of a 10p.

At lunch time Joseph phoned me to say that “I didn't really need to go to my afternoon meeting did I, as I needed to come to the hospital”. I asked why, and put Joseph in the difficult position of having to tell me what he had been told, knowing that I was on my own. He didn't respond so I asked "Is it leukaemia?” The pause was enough to know it was.

The paediatric consultant had said "we have found blast cells in Andrew's blood, we think it is leukaemia which is eminently curable." I left straight away, my mind reeling.

I arrived and was told the reality face to face. “The treatment will take 3 years, don't spoil him.” No One mentioned the C word yet. It was only when talk turned to finding us a bed at the Royal Marsden, which I knew was a cancer hospital, did it click.

My book ‘We Beat Leukaemia’ is my honest account of chemo, childhood and being a mummy to cancer – written over 1235 days from diagnosis to remission. I started writing daily posts to record the highs and lows, frustrations and elations of his childhood cancer treatment. My posts and photos form this book. I’m sharing my family’s experience to raise awareness of childhood cancer (and the UK charities who can offer so much), but also to offer support to families facing the challenges that any child cancer diagnosis brings.