Baby Emily’s Journey Through Cancer – Part Three

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You can read Emily’s Journey Through Cancer

here: Baby Emily’s Journey Through Cancer – Part One

 and here: Baby Emily’s Journey Through Cancer – Part Two

Blog 3 – Oct 2016

It’s been a while since I last sat down to think about what has happened to our family since Emily arrived.  The joy and excitement of her birth overtaken five weeks later with shock and worry when she was diagnosed with cancer. Even saying that or writing it down, I still don’t believe it’s actually happening to us.  But now, as she reaches seven months, with her bald head and yellowy skin, it is very real.

We didn’t have the summer we planned. Our regular holiday to France, a visit to Nanny Nuala in Ireland, long lazy sunshine days in the park picnicking with friends, day trips to the beach – none of it happened.  Instead, our 7 year old spent most of his summer with family and friends and at summer camps, whilst we trekked up and down to Great Ormond Street Hospital battling hot, sweaty trains and feeling envious of people enjoying long lunches in the sun.  I am not usually the envious type, but this year I have felt very different.

emily-blog-3-2Sometimes, all I want is our life back.  The life we planned as a foursome.  It’s been hard watching friends and family post photos of their family holidays this summer on Facebook and Instagram.  I have craved those scenarios for us.  Just a few days away from this nightmare.  But, unfortunately, due to the relentless nature of Emily’s treatment – you build her back up after a chemotherapy cycle, only for her to be knocked straight back down again – we haven’t had any pictures.  So, going away has been impossible.  We can’t be any further than an hour’s drive from King’s College Hospital (our shared care centre) and given that we live at least 40 minutes drive from there (on a good day), our options to go anywhere are very limited.  Saying that, we have had the odd day out here and there including a gorgeous day at Hampton Court Palace with good friends.  It’s just not been the summer we planned.  And that makes me sad for all of us.

Over the past few months, we have also been gearing ourselves up for Emily’s big operation to evict our unwanted visitor.  Something, that scared me to death.  It felt like it was a long time coming.  There were delays due to the tumour not shrinking enough for the surgeon’s liking as well as hospital administration errors, both of which caused no end of stress to us as a family.  But, eventually on the 13th September, mine and Matt’s 9th wedding anniversary, Emily’s unwanted visitor met his match – the indomitable Nags, GOSH’s top cardio-thoracic surgeon.

It’s funny, but as prepared as I thought I was, nothing prepared me for carrying our little girl into theatre number 7, and handing her over to the people who would basically save her life.  But, I did.  She cried, I cried.  Matt held it together – just.  And then we waited.  And waited.  It was tough and every time the phone beeped or rang, we jumped out of our skin.  But eventually, the call came.  She was out of surgery, in recovery and we could go and pick her up.

Following the surgery, Emily spent four days on Bear Ward, a high dependency unit for children who have had major chest surgery.  The staff were incredible and looked after us so well.  Within 36 hours, she was sitting up and grinning, making all the doctors and nurses laugh.  It was lovely to have her back and to know that her unwanted visitor, along with three ribs, was no longer there.  It was also nice to know that the surgeons were really pleased with how the operation went and felt they had executed their plan – to prevent reoccurrence – to 100%.  But, we weren’t out of the woods yet.  We had to wait to see what the lab rats would find in the tumour, its surrounding soft tissue and the bone.  I sat and prayed so hard over those few weeks. 

Eventually, during her next round of chemotherapy (round 7 of 9), we were told the good news – no evidence of tumour in the specimen they took!  Basically, it was dead.  There were no cancerous cells detected.  The chemotherapy had done its job. The relief this news gave us was incredible.  I nearly dropped Emily when I was told!  It was a huge victory in this battle and one I think we never thought we would see when this all first started.  At last, there was light at the end of the tunnel.  We could start to maybe think about holidays, visiting family overseas, christening Emily, getting ready for Christmas, doing normal family things.  Or as my son puts it – “being less chaotic Mammy!”

emily-blog-3-3So, as I sit here on a sunny autumn morning and we have almost reached Halloween and October half term, I can see the end of this bumpy road is in sight.  Chemotherapy and surgery have already damaged our little girl beyond repair – it’s unlikely she will be able to have children and her growth and development may be slowed.  But, it’s small price to pay for still having her in our lives.  I know our journey isn’t over yet.  There will be numerous hospital appointments and blood tests that will continue for a long time, but the hardest part is almost at an end.  Intensive chemotherapy might be replaced with something else.  We don’t know.  But, one thing I do know is that my little girl is incredible.  And she is the bravest person I know.  And whatever happens next, she won this battle and will continue to bring us the joy she has since the day she was born.

 

 

 

 

 

 

 

 

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Claire Carter is a full time working mum of Charlie (aged 7) and Emily (aged 3 months). Currently on maternity leave from her role as a PA at Trinity Laban, Claire's passion is singing and she enjoys nothing better than spending the evening with her Popchoir buddies singing through their contemporary repertoire and entertaining the masses at numerous gigs.