14/09/2017 11:36 BST | Updated 14/09/2017 11:36 BST

What I Didn't Know About Childhood Blood Cancer

Andrew was three years and five months old when he was diagnosed with Acute Lymphoblastic Leukaemia on October 3rd 2012.

I didn't know Leukaemia was cancer or even a blood cancer - I had heard of it before so suspected Andrew's symptoms meant he had 'Leukaemia' but I thought it was just another childhood illness, like chicken pox.

I didn't know you could get a type of cancer that you couldn't feel as a lump or see in a scan. I thought all cancers could be 'cut out' like breast cancer - so how did you cut out bad blood cells?

I didn't know that being given pints of blood and platelets was part and parcel of blood cancer treatment. Andrew had 22 transfusions in total during treatment.

I didn't know that it is the platelets that clump around a cut and trap red blood cells to form a scab. That is why a high number of platelets were needed before Andrew's 23 lumbar punctures and why his port continued to bleed if he had low platelets.

I didn't know that a bag of platelets is created from a mixture of donors and not just one person - which is why children, including Andrew, often had allergic reactions.

I didn't know that just one platelet donation can be used for up to 12 children until Dan went and did it.

I didn't know that red blood cells carry oxygen and take under a minute to travel around the body. Andrew was much more energetic and had colour in his cheeks after a blood transfusion because he was given more oxygen. No wonder some cyclists did blood doping.

I didn't know that it is the white blood cells that hunt down germs that cause infections and gobble them up.

I didn't know children with Leukaemia have too many abnormal blast white cells being produced in the bone marrow, which then crowd out the generation of normal white cells.

I didn't know neutrophils are a type of white blood cell and are the first cells on the scene when there is inflammation in the body. They don't last for long, which is why neutrophil levels could spike just before Andrew got ill and admitted with a temperature. It also explains, when Andrew had low neutrophils, why he had nothing with which to fight the infection.

I didn't know that blood cancer hides in testicles and that boys need an extra year of chemo (compared to girls) because of it.

I didn't know chemo was just 'medicine' and could be taken in tablet form anywhere. I thought chemotherapy meant sitting in hospital with a drip in your arm like Mr White in 'Breaking Bad'. We gave Andrew chemo in a tent at festivals, in hotels room, at our parent's houses and at home.

I didn't know it was possible to have chemo and not be sick or lose your hair. The intensive chemo regimen made Andrew's hair fall out and made him throw up every day for nine months. However, for two and a half years after this the maintenance chemotherapy just kept things at bay whilst he looked every inch the 'normal' little boy with a mop of crazy hair.

I didn't know that children could be so used to being sick that they stop what they are doing to be sick in a toilet or bowl and then carry on playing or eating as if nothing had happened.

I didn't know chemo causes stripes as it leaves your system - Andrew had white lines across his finger nails which grew out over time until finally it looked like he had a French manicure.

I didn't know when your hair fell out, that it fell out everywhere. Andrew lost the hair on his head but also on his face his eyebrows, eye lashes and leg hair. I was so fixated on his bald head that I didn't notice the rest until the hair started to grow back and suddenly he had really hairy legs.

I didn't know Andrew had a birth mark on his scalp.

I didn't know that cutting hair short makes it harder for you to pick out of food when the hair starts falling out.

Read more about our journey to remission here: https://goo.gl/WNuODa

Find more blog posts by Melody Here: melodyberthoudblog.wordpress.com

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