Melody Berthoud
Posted by

Diagnosis

Melody Berthoud
Posted by
05 Apr 2016

Andrew was 3 years and 5 months old when he was diagnosed with ALL on 3/10/12.

Andrew's diagnosis was swift, we were lucky.

I had just started a new job, having had a 5 year career break.  I finally had time to myself at home and started spinning exercise classes at the local leisure centre. Two weeks into term however Andrew had not really settled at Pre School.  He was very tired and on the days when I took him he wouldn’t scoot so I pulled him all the way. I would pre-empt his tiredness by picking 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 started to be sweaty at night and his pillow case was often wet in the morning – I thought nothing of it as we were having a mild September.  He had a few nose bleeds in the night too, blood about the size of a 50p pence on his pillowcase. Again I thought nothing of it as I knew that Joseph had suffered with nose bleeds as a child.  I thought it was just what happened and I washed the pillow case.

My friend Alison commented one afternoon at the school gate, when Andrew was fast asleep in the pushchair, that he was looking pale.  Yes, I said, he had been very tired that week and was probably sickening for something.

Once Clara was back at school, Andrew and I visited the London Transport Museum with friends.  We had a lovely day out.  I took his scooter and pulled him whilst his friends walked.  I decided that he was just a bit lazy but thought having the scooter was easier than the inevitable having to carry him.  Enjoying a day out together made me realise that perhaps he, like Clara, hadn’t really bonded with pre-school and that it would just be something he would have to endure until he started school.

We sat on the step in Covent Garden eating chocolate ice creams, the sun shining on our faces whilst watching an entertainer spend a long time doing the build up to his one and only unicycle trick. It was a lovely moment and I remember thinking how great life was. Everything was in balance.

On Saturday 29th September 2012 Andrew woke up in the middle of the night and was sick. I settled him and popped him back into bed. Joseph was also being sick downstairs so on Sunday I took the kids out for the day to let him recover in peace.  We went to Coolings Nature Trail in Knockholt, Kent with my brother and his family.  It is a lovely place with a short walk in the woods to look at some animals. A perfect outing for little legs and a café to have lunch in after the walk.  Andrew wasn’t right and was still very tired.  I hadn’t taken the pushchair as the ground was uneven and refused to carry Andrew, thinking he was just being a lazy 3 year old after all everyone else was skipping and running about.  He had to walk, I told him otherwise he couldn’t have a piece of cake in the café’. My brother was a softer touch and picked him up.  Andrew instantly fell asleep on his shoulder.

So when Andrew developed a high temperature on Monday 1st October 2012 I wasn’t surprised, he had been sickening for something.

On that Monday, Andrew and I had been to 'songbirds' in the morning (a local singing group) and in the afternoon he was sleepy with a high temperature.

When I took him to the doctor on Tuesday 2nd October 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 Queen Mary’s Hospital in Sidcup where Andrew was given 4 patches of magic cream (ametop) 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 but eventually came home none the wiser. 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' and 'excessive bruising' did not; so we talked ourselves out of it and went to sleep.

On Wednesday 3rd October 2012, 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 Hippo Ward at Queen Elizabeth 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. Had the GP sent us away we would have been making another appointment. (He has a scar now the size of a 10p).

The next I knew 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.

Dr Schuller 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 remember phoning my boss and leaving a message as I was only 4 weeks into a new job having had a career break for 5 years.  I don’t remember much about the drive over the Dartford Bridge but I do remember I was shaking when I stopped at McDonalds for a break.

I arrived at what is now named the Tiger Ward 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.

Andrew had to go through the horror of cannulas again in order to be on fluids and blood immediately.  I then had to leave my boys to get my 5 year old daughter Clara from school and try to explain where Andrew and Daddy had gone.

 

Comments

Eleanor Baggley
06.04.2016

Thank you very much for sharing this with us. I can't begin to imagine what you and your family have been through - how is Andrew doing now? Your experiences and Andrew's huge range of symptoms show just how difficult it can be to reach a diagnosis - the symptoms often seem so inocuous or related to other things. If there is anything we can do for you please do not hesitate to get in touch. all the best, Eleanor

06.04.2016

Thank you Eleanor.  Andrew finished treatment on 20/2/16 after 3 years and 5 months. He is thriving and every inch the normal 6 year old boy.