1. I had heard of Leukaemia and when I told the GP Andrew’s symptoms I suspected that they added up to Leukaemia – but I didn’t know Leukaemia was cancer. I thought it was just another childhood illness that some kids got.
2. I didn’t know you could get a 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? You cannot of course which is why the treatment for Leukaemia is so long.
3. I thought chemotherapy meant sitting in hospital with a drip in your arm like Mr White from Breaking Bad. I didn’t know chemo was just ‘medicine’ and could be taken in tablet form anywhere. We gave Andrew chemo in our tent at festivals, in hotels room at our parent’s houses and at home.
4. I didn’t know it was possible to have chemo and not be sick or lose your hair. The intensive chemo made Andrew’s hair fall out and 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.
5. 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 they started to grow back. He suddenly had really hairy legs!
6. I didn’t know that cutting hair short makes it harder for you to pick out of food when the hair starts falling out.
7. I didn’t know general anaesthetics could only last for 10 minutes. I also 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.
8. 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.
I have written a book of our journey with childhood cancer called #webeatleukaemia.
It is currently at the editor and the front design is with the designer.
I was lucky enough to crowdfund the money needed for both the edit and the publishing support in just 21 hours after my kickstarter page went live! It was an emotional 21 hours – knowing that so many people (63 backers so far) want my story known so that it can help others.
There is not much out in the public domain to help parents of children diagnosed with leukaemia, if I had breast cancer then I could pick from around 50 books. We searched for documentation on diagnosis and found nothing. I hope this won’t be the case for new families once #webeatleukaemia is published.
It is a story of hope – not all children die of cancer – a message I want to shout loud and clear. When you have a child diagnosed with cancer you don’t want to know that children die, you want to know that children survive. That is why the book and Fabian’s #waroncancer stories are so important.
When the book is published, hopefully in the next 4 or 5 weeks, there are 10 ways you can help:
- Share the book on social media using the hashtag #webeatleukaemia
- Tell people about me and the book offline
- Pre order the book
- Buy spare copies of the book and leave them somewhere for other people to find
- Gift the book to a friend
- Suggest the book to a book group
- Like the facebook group
- Reserve a copy at your local library
- Go into a book shop and ask if they have a copy
- Write a review on amazon
11. Attend the book release party!
Today is the 20th May 2016. It has been 3 months today since Andrew’s last chemo.
For the past three months I have not have to:
put up with 3 steroid weeks
Clean up sick
Complete a sticker book
Play on the wii u
Listen to Andrew complain that his legs ache
Be woken up at silly a clock regularly
Take Andrew’s temperature
Count to 10 and walk away
Sleep on Andrew’s bedroom floor
Accompany Andrew for a General Anaesthetic
Go to work on 4 hours sleep
Count up beads/Thread on beads
Force Andrew to go to school
Cook an unappreciated meal
Deal with a tantrum
Wake Andrew in the middle of his night for chemo
Cancel a meeting due to a hospital stay
Today is one day further away from the sadness and trauma we lived through.
Life is good.