Sunday, 19 May 2013

Just when you thought it was safe to......

Unfortunately I am not talking about a Jaws movie, if only it was just a matter of getting back in the water.

I am talking about Harry's roller coaster ride. Just when you thought it was safe to think Rb had done one. We have had quite a smooth ride for the past few months, there have been no dips or loop-the-loops and I suppose a touch of complacency slipped in. I was so used to hearing the words, all clear see you in 8 weeks. But this time we weren't to hear those words. Instead they have found a patch on his left eye that looks different to last time. It could be the way his eye looks, but why the change? Or it could be something evil and nasty brewing so we will see you in 4 weeks to check.

So the what-if game starts big style. And at the moment I am struggling a little, my heart and mind are in a tug of war, the sensible one is saying it will be nothing but my emotional one is saying it's something new. Why would his eye change? Something must be causing it. I know of a few children who had months and months of stability before it all started again and I pray Harry doesn't follow suit.

I have to spare a moment to ask you to think of Harry's little Rb warrior mate Owen bishop who after 2yrs ish of being stable, this week they found a new seed. Small and treatable but something new all the same. Well Rb you got your last look there cos Owen is too much of a tough little cookie!

But Harry's EUA wasn't the nicest, he played holy hell when we pinned him down to have his eye drops in. The poor student nurse who got the feet end must have been black and blue. I should have removed his shoes, sorry x as we were on the general day surgery ward the ppl in the next bed weren't Rb ppl and they looked a tad alarmed as 3 staff surrounded Harry just to put 4 lots of drops in. He really cried afterwards. Then the fun of putting him under the anaesthetic.
I carried, no wrestled Harry into theatre and along with a few members of the theatre staff held him in a vice like grip whilst they forced the mask over his face. I don't really mind him crying as it helps him breathe in the gas quicker, but the little heart breaker had us all in tears this time as after a few sobs, he took his dummy out pushed the mask away and said clear as a bell "I'm crying" before resuming struggle and sobs.

I can't imagine it will get any easier and now we don't have the luxury of an 8 week break to try and forget the trauma he goes through.

It was fantastic to meet up with macey and alfie, similar in age to Harry both diagnosed with bilateral RB. Macey did fantastic and got another all clear with existing tumours still in remission and her reward for this fantastic achievement, an 8 week break! Fantastic! Alfie however has been struggling to get his right Eye to behave and sadly his mum Rebecca had to make the heart wrenching decision to remove his naughty eye. I cannot imagine how she must be feeling. It is my nightmare and something I fear to the pit of my stomach that I should never have to do it but my love and hope goes to alfie and his family as the outcome is for the better good and the cancer won't be able to do any more harm from that eye any more. His left Eye is still stable and that's fantastic. Big hugs alfie.

So to round up our bad day, it got worse as we passed one junction on the motorway that could get us home and joined an hour's tailback from an accident that had only just happened. Fan bloody tactic!

Something good about May, Matthew turns nine next week. Omg how did that happen? It only seems like 2 mins since that tiny little monkey decided to make a very early appearance. He allowed me the luxury of one days maternity leave. He's been impatient ever since!

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