John Rainsbury writes... My wife and I have been attending TCF meetings in Bristol since we lost our 6 year old son Will on Valentines Day this year following a 9 month battle with an aggressive Brain Tumour.
Will was a beautiful, adventurous and “oh so cheeky” little boy, full of life and adventure. After a couple of weeks of feeling sick in the morning, we were referred to Bristol Children’s Hospital for a precautionary CT scan. After going through the standard questions and flying through the physical neurological tests, we were starting to feel awkward that we were wasting everyone’s time with a suborn tummy bug. We then got the news that the initial review of the scan was clear and we were to be discharged. We were packing up our things when a Consultant we hadn’t met came in ashen faced, the initial review was wrong, they had found a golf ball sized brain tumour! In a moment our world was shattered and we were in freefall.
The freefall continued, with each test came bad news. Eventually our diagnosis was a Group 3, Medulloblastoma, a particularly aggressive and metastatic variety. Treatment started swiftly and was intense including: a 12 hour brain surgery, 32 radiotherapy sessions, 6 months of high dose chemotherapy and multiple further surgical procedures.
Despite all of this Will kept his love for life and cheeky manner throughout. After multiple treatments he was the only kid to be shooting the nurses with a nerf gun or scoring goals past them on the hospital ward! Unfortunately after a 9 month battle just after Christmas, we confirmed that Will’s disease has relapsed whist still finishing treatment. With no viable next steps, Will’s disease progressed rapidly and we lost him 4 agonising weeks later on valentine’s day.
Clearly we were and still are devastated, life has some lost meaning and the world is a duller place something that is now endured rather than enjoyed. The mix of emotions was further complicated by the birth of our third child Charlie just 2 weeks after Will’s death, a really bitter sweet time.
I still can’t full comprehend what has happened and the anger and emotions ambush me almost daily! Will did however provide a spark of inspiration for us, he was the bravest little boy, a real Little Hero! His example gave us just enough courage to continue the fight against this devastating childhood disease and we set up a charity in his memory called Little Hero. It may surprise you to learn that whilst Brain Tumours are recognised as the biggest single cause of childhood deaths, they receive less than 1% of UK research funding into cancer, nearly none of which comes from central government. I know, it was a surprise to me too! We set up Little Hero to push for change and fund research into new treatments directly.
There is also selfish side to setting up the charity, it keeps me busy! I very recently read an article about a British Soldier who was held hostage in awful conditions by Militia in Sierra Leone. He kept sane by focusing on a series of tasks to take his mind away from his reality. It dawned on me that this is exactly what I was doing! I am held hostage by grief and all my fundraising tasks have helped me stay at least semi sane!
As time continues, each date or landmark becomes a point of intense anxiety: going on holiday, summer time, a friends birthday, Halloween, his birthday… all without him. Then, there is the big one… Christmas. The build-up is unavoidable, the merriment just so false and irrelevant. I think we would be fine if it wasn’t jammed down our throat at every opportunity! Christmas is just not a celebration for us but it is a big and unavoidable point of reflection, the thought of receiving endless cheery Christmas cards is almost too much to bear.
This then got me thinking again. I can’t be the only who hates the awkward and artificial prospect of receiving all of these Christmas cards. So I have teamed up with an exceptionally gifted copywriter who perfectly articulated what I was feeling and we have created a range of four Christmas cards. Two are written to show support and empathy with someone who is also not ‘celebrating’ but could use a genuine message of support and love. Then the final two are in reverse to say a heartfelt thank you for the support that someone has shown.
All the profit raised from their sale will support the Little Hero charity and I hope they help people deliver a genuine message this Christmas.
They are available at https://www.therightlines.co.uk/product-category/christmas/