Meet Edward and his beautiful family.

Within hours of an MRI scan which was carried out to establish the cause of deteriorating balance we were catapulted immediately and directly into the very centre of hell. 

Ambulance, emergency surgery, waiting, recovery, waiting, more scans more tests, waiting, Will he open his eyes? will he speak? Can he swallow? Can he use his left arm? Can he hear me? Is he hurting? Will he ever be able to walk? Question after question after terrifying question. 

And as if that’s not enough you reach the stark realisation that chemotherapy hasn't even begun yet. I remember being told that chemotherapy is just enough poison to not quite kill you in an attempt to kill cancer. Think about that for one moment!!! Having to ALLOW your child, your 3 YEAR OLD CHILD to be POISONED in an attempt to save his life. When I say attempt I mean it too. Edwards treatment has a 54% cure rate, so pretty much a 50/50 chance that putting him through all of this will result in a cure. That hurts my heart beyond comprehension and yet those odds are pretty good in the grand scheme of things. 

Witnessing my child going though chemotherapy is the most devastating experience I have ever encountered. It’s not just the chemo it’s the all encompassing horror! Blood tests, vomiting, incontinence, temperature checks, desperately praying the temperature stays below 38 degrees if not there’s more tests and checks, cultures and antibiotics and delays and fear and fear and fear. 

Holding him down while more vital checks are done , telling him all time ‘I’m here, you’re safe’ which became our mantra, playing down the ‘take me home mummy’ plea’s. Waiting for him to fall asleep so I could cry, realising that no one says ‘he’ll be fine’ because no one can make that promise, living apart from the rest of your family, promising your 6yr old you’ll be home soon but having no idea if you will be. 

Picking your 1 yr old up from nursery and promptly dropping her off with grandparents so you can shower and get back to hospital. Ignoring the bills piling up because ‘I just can’t deal with that today’.

If ever there was anything memorable, it was getting hugs from other parents consumed by the same darkness, thank God for the hugs! Thank GOD FOR THE HUGS!!  You have to HOPE and you have to TRUST and you have to have FAITH because they absolutely have to have far more value than FEAR which surrounds your every single moment.

Mercifully Edward's treatment for now (and we pray forever) has worked.  He is 20 wonderful months post treatment and his scans show no evidence of tumour or disease. We are under no illusions that he is out of the woods, we know that this nightmare isn’t over, I suspect it never really will be over. But clinically he is in a good place and although we are starting to understand the real consequences of the late effects treatment, he is facing the sun. 

Throughout our journey we have been carried and picked up off the floor more times than I can remember by our amazing NHS and the most wonderful organisations and charities set up to support families experiencing the absolute horror that is childhood cancer.

So many of these charities have been set up in memory of children and young people for whom the outcome of their journey was not the one we hope and pray for.  Organisations like the Daniella Logun Foundation - thank you for your friendship & support through this!

There is still so much we don’t know about childhood cancer and we so desperately need greater funding to generate More Research, Kinder Treatments, Better Outcomes.