So here I
am, at the end of a very harrowing chapter of my life, looking back, and
looking forward, with equal amounts of fear, trepidation and heart ache
wondering where to start.
I guess the best place is at the beginning. As the
bio of my book says, I grew up on Merseyside before moving up to Lincolnshire
and then down to Buckinghamshire where I met my now ex-husband.
We had three beautiful boys together but when our
youngest was just 6 weeks old, Dylan our middle son, was diagnosed with a
metastatic brain tumour. He was just two years old.
What followed was two years of utter hell. Dylan
was rushed into surgery, had 6 months of chemo, was given 6 weeks of adult
strength radiotherapy and then a further year of chemo.
We nearly lost him countless times, we were in and
out of hospital daily and we were juggling a 4 year old, a two year old who had
zero understanding of what was going on and a newborn.
This took its toll on us all but especially my
relationship with my husband and so, as Dylans' treatment was ending so was our
marriage. I was then thrown into another incredibly difficult chapter.
I suddenly became a single mum to an anxious and
bewildered 6 year old boy, a 4 year old with significant additional needs and
an angry 2 year old who had a temper that rivaled the
Hulk.
Dylan was adjusting to life outside of the
hospital, he was starting school and he was establishing friendship groups. The
boys were adjusting to our new normal but I was just fighting for survival.
I became a nurse, carer, teacher, counsellor, sole
bread winner, lone parent and overall dogsbody over night. The learning curve
was STEEP.
Then there was the divorce. It was messy, bitter
and costly to all parties. It took two years to sort through it all.
The divorce finally came through and I was beyond
elated. At last, I could pick up the pieces, rebuild my shattered life and
concentrate on something more than just survival.
The elation was short-lived. Just a few short
months after I had excitedly run around the house waving my divorce papers
above my head, my world came crashing down again when, at a routine hospital
appointment, Dylan's doctor uttered the words relapse, palatitive, terminal.
Let me write those again. RELAPSE. PALATITIVE.
TERMINAL.
I was on my own, with three kids at my feet
squabbling over a car garage watching the doctor's mouth move, willing it to
stop!
It didn't stop. It didn't shut up. It kept spewing
out words I didn't want to hear.
Then it hit me, I had no control over his mouth
but, I could control my ears! I would simply stop listening. I would focus on
my squabbling, normal, HEALTHY children and ignore every hideous word coming
from his mouth.
Then another realisation hit me. I was on my own!
I was the only adult responsible for three precious, beautiful, energetic boys
and I had no choice but to woman up and deal with this.
A play specialist was summoned and the boys were
spirited off to go and play elsewhere whilst I discussed options, arranged for
my ex husband to be told and, more importantly, calmed down.
Dylan went on the only treatment the NHS was
offering, palliative chemo. It made him sick, tired and miserable. All the time
his doctor and I, with the help of The Brain Tumour Charity, scoured every
corner of the globe looking for promising treatments.
We found one and after a successful crowd funding
campaign, Dylan started this treatment. He changed overnight. He was energetic,
bubbly and above all happy again. I was ecstatic.
Things were looking up when on a Friday in
September 2020, Dylan's doctor called me with the results of his latest
surveillance scan. He could barely contain his excitement as he told me the
news. Dylan's tumour had shrunk from 11mm to just 2mm. It was working!!!
But again, my ecstasy was short-lived. Just two
days later I took Dylan into hospital with an infection.
14 weeks later, he died in my arms, with his dad
holding his hand and his brothers nearby.
Dylan was just three weeks shy of his 9th birthday.
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