Child Cancer Awareness Month 2016

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

IMAGINE by Katie Dalgoutte

September is Childhood Cancer Awareness month.

There was a time when I did not know this.

In September 2013, Leah and I were in the third month of our stay in Bristol, where she had received a bone marrow transplant for myelodysplasia and monosomy 7, a rare haematological malignancy. In Leah’s case this was caused by an even rarer GATA2 genetic mutation.

On Monday 30th September 2013, we had an appointment with Leah’s consultant, at which we had been promised that Leah would be given a discharge date and the go ahead to book our flights back home to Ireland. Leah was so excited, she could hardly wait.

Devastatingly, Leah became very unwell on the Sunday night. Leah saw her consultant alright – he arranged for her to be readmitted to a tiny isolation room on the Bone Marrow Transplant Unit. We were heartbroken.

While in that room, I first discovered the poem “Imagine” by Katie Dalgoutte.

In this poem Katie describes what I was feeling, but couldn’t put into words.

I have never been able to read this poem without crying.

“Imagine”

Imagine being told your child is seriously ill.

Imagine crying until you think there’s nothing left.

Imagine feeling like you’ve been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting…

Imagine having to watch as your once active child isn’t even able to open their eyes for a week.

Imagine the terror…

Imagine the pain of having to leave your baby in the care of strangers and not being able to sleep by their side.

Imagine standing by as your baby’s body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt…

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from you screaming “mummy” not understanding why you won’t come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someone’s Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not seeing anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness…

Imagine perfect strangers passing comment about your son

But with the emptiness …

Imagine the kindness of strangers who don’t know you

Imagine the incredible support from people you’ve never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it’s back

Imagine how fragile and precious life feels

September is Childhood Cancer Awareness month, if I hadn’t told you, would you have known? It’s swept under the carpet as a taboo subject.

Imagine if it couldn’t be taboo in your world, because it was your world…

Imagine if I had known the symptoms,

Imagine if all GPs knew the symptoms,

Imagine if you felt you had the power to help others, not be in the same position…

Imagine … Don’t pity, don’t sympathise, just spread awareness and just imagine, because it could be you …..

                         by Katie Dalgoutte