Lisa G.
Posted by

The moment we found out my son had ALL

Lisa G.
Posted by
13 Oct 2015

Reflection on my son's diagnosis with ALL and the events in the lead up to diagnosis that led me to think that something was wrong.

This is not how I imagined it.  Not that I'd given a great deal of thought to it you understand.  But, I'm not alone am I?  In letting my mind slip, my imagination take hold and to wonder 'what if'?  Maybe it is just me, I've always suspected I have an over active imagination, I tend to spend a lot of time wondering 'what it' about all manner of things and situations and much of the time those wonderings gather pace and before I know it I have full blown scenarios dancing through my head taking on a life of their own.  Receiving a cancer diagnosis was no exception.  When it had played out in my head I'd imagined an office, a sympathetic looking doctor sitting behind a desk, a concerned looking patient shooting nervous looking glances at a supportive partner or friend, bracing themselves for news.  What I hadn't imagined was a cubicle in a busy, noisy A and E department.  Yet this is where I find myself.  The sympathetic looking doctor is here, a little young maybe, but definitely fulfilling the 'sympathetic looking' requirement.  But there's no desk, no supportive partner to hold my hand.  Just me and my 2 year old son and he most definitely wasn't meant to be here.

Our journey to this point started 5 weeks ago when my youngest son, Hugo, refused to bear weight on his right leg for no obvious reason.  After a trip to the doctor and an x-ray he was diagnosed with irritable hip syndrome.  A week later he seemed to be recovering and was gingerly taking steps again when he became unwell with a high temperature, loss of appetite ands swollen glands.  Another trip to the doctor, this time for a diagnosis of a virus.  This all seemed to make sense and even though he still wasn't walking another week later I wasn't too concerned.  Children get viruses all the time don't they, he's probably enjoying being carried around, he'll walk when he's ready, won't he?  My husband and I discussed how we would laugh about this in a few weeks when his symptoms had cleared up, explained away as just one of those childhood viruses.

However, over the next couple of weeks Hugo grew paler, his lack of appetite didn't improve, he still wouldn't walk and the glands in his neck were continuing to swell.  He looked ill and it was becoming harder to stay calm.  Another trip to the doctor saw us with a paediatric referral and being sent for blood tests.  3 hours after the blood test I received a call from our GP surgery.  The wanted us to take him to A and E.  The doctors there would like to check him over.  Please try not to worry they said.  I could feel a lump in my throat, tears prickling at my eyes.  I let my practical side take over, I pushed the worries to the back of my mind, I pasted on a smile for my son and told him we were off on an adventure.  That is how we come to find ourselves in a cubicle, in A and E.  Just myself, Hugo and sympathetic looking doctor.  My husband at home looking after our elder son, Henry.

So, sympathetic looking doctor asks me, what have you seen on the internet, what are you concerned about?  I almost laugh as I say it, it still seems so ridiculous to even be mentioning it.  Well, I say, slightly embarrassed and awaiting my 'google isn't your friend' lecture, erm leukaemia.  She looks at me and tells me that it what they are concerned about too.

Oh.

That isn't the flat out dismissal I was expecting.  I tell myself it's ok, they need to be thorough, they need to rule it out.  I ask if they are concerned about anything else.  She tells me no.

Oh.

She tells me they need to do more test, that the results will tell us more.  I take a deep breath and then I ask - are you looking to rule it out or confirm it?  Even with everything going on, all the emotions I am feeling, all the thoughts that are racing through my mind, I am pleased with my ability to ask the right questions.  She tells me that it's the latter.  She tells me that she is so very sorry.

Oh.

And there it is.  That's the moment.

The moment everything changes.  There is a sick feeling in my stomach, my head is spinning and despite my best efforts to hold them back, to remain strong for Hugo, there are tears.  Tears of fear, of confusion, of shock.  How can this be happening?  How can this be real?

I want to go back, to before, when there was just suspicion.  When I could tell myself I was over reacting, that there was nothing wrong, that I was worrying for no reason, that everything would be ok.  But there's no going back.  My son has leukaemia and there is no going back.

Read more on lifeloveandleukaemia.blogspot.co.uk

Comments

02.11.2015

Lisa,

Thank you so much for writing so openly and honestly about Hugo's diagnosis which understandably sounds like it came as a huge shock despite you having your suspicions that something was wrong. I hope that subsequent to this blog Hugo has responded well to treatment and that you've had a chance to get your head around everything.

The important thing to appreciate that you're not alone and that support and information is available to you shoud you need it beyond your son's immediate treatment team. Our Patient Experiences team are a good first port of call and are available on 0808 2080 888 or via email at support@bloodwise.org.uk. We also have information on Childhood ALL including downloadable booklets which may also be of use: https://bloodwise.org.uk/information-and-support

We also have a number of other blogs from other families who have been affected by childhood ALL which may provide you with some support in our community section on the website: https://bloodwise.org.uk/our-community/patient-voices

The hospital may also be able to put you in touch with a local support group if you feel that that's something that you'd be interested in.

Stay in touch and remember that you're not alone and we're here to help in any way that we can.

Andy