Our 1235 day journey with childhood Leukaemia has taught me a lot about cancer.
I didn't know Leukaemia was a blood cancer - I had heard of Leukaemia before so when I told the GP Andrew's symptoms I suspected that they added up to Leukaemia but I thought it was just another childhood illness that some kids got.
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 do you cut out bad blood cells?
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 9 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 that I would know more current details about the lives of the nurses looking after us than my own friends and family.
I didn't know steroids would make you feel so famished that you could eat and eat and eat and eat and still actually, really feel hungry.
I didn't know that all my understanding of 'healthy eating' was going to go out of the window, and the most important diet for Andrew was high fat and high calorie. We allowed Andrew to eat what he wanted, when he wanted, in order to keep his weight up and avoid the NG tube.
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 that cutting hair short makes it harder for you to pick out of food when the hair starts falling out.
I didn’t know general anaesthetics could only last for only 10 minutes.
I didn’t know that grown ups with Leukaemia have Lumbar Punctures without a general anesthetic as they are only used to ensure the child doesn’t move.
I didn't know that chemo affected teeth. Andrew has no enamel on his adult teeth which are growing through because the chemo killed all his fast growing cells, plaque being one.
I didn't know that blood and platelets were part and parcel of blood cancer treatment. Andrew had 23 transfusions during treatment.
I didn't know that a bag of platelets is a mixture of donors and not just from one person - which is why children, including Andrew, often have allergic reactions.
I didn’t know it was possible to go through such a traumatic experience as a family and come out stronger, more resilient and grateful for the things that the journey has taught us.