Wednesday, 14 August 2013

We just love good news

And we got some.......

Harry had his latest EUA on Monday, and I am delighted to report he is still stable. That is almost 12months of stableness and a huge step up the ladder in his journey.

It doesnt by no means mean he is out of the water yet, although the longer the period the less likely he is to grow new tumours. This is because the rate of retina growth slows down hence less cells being grown equals less chance of new tumours growing instead. But it doesnt mean we can rest on our laurels, as each time he ever grows a new retina cell it still has a 50% chance of being cancerous, and I have come across several, no many families who had a long period of calm before trouble started again and treatment/enucleation was back on the books.

So I still take each visit as it comes. If we get a stable visit, its a bonus and we're all happy. If we don't, then we will deal with it in whatever way is necessary.

I was blessed with some fantastic company on this trip to Birmingham. My sister Rachel came, and we had William too. Nanna and grandad were bursting at the seams and there was no room at the inn for William. He was an absolute treasure and behaved immpeccably. Both he and Harry slept pretty much all the way down to Birmingham, then again all the way back.

We were given the largest room in the hotel as we had 2 children.... THAT IS A BIG FAT LIE. I couldnt even swing a whisker never mind the full cat, despite me asking if it was a large room. Think the receptionist needs to recap on her area and volume maths as her concept of large was anything but. But we settled well, the kids had tea at the big yellow 'M' place, we had healthy butties and snacks from a less large 'm' place aka M&S. The kids played well in the space they had, enjoyed a splish splash (Rachel clearly out of touch in preparing baths as the water was a little chilly lol) but better that than too hot. Bedtime dawned, and both seemed determined NOT to go to sleep. Harry sang through his entire repertoire several times, threw his dodey and blankie several times and eventually gave in. William pointed out, through half closed eyes, that he was not tired at all. 9.30 he gave in!! He was sharing my bed, or should I say he had the bed and I had a six inch strip on the edge.

Monday morning came and we trotted of to the ward. Obviously Harry is getting lesser and lesser impressed and cooperative each time we come, and his distress at having just his hospital bracelet on was hard to see. He sobbed and sobbed and demanded to 'take it off mommy' So it was cut off and put in my pocket. Having pinned him down, prised his eyes open to put them awful drops in made the poor student nurse think twice about doing his obs. 'I think we'll leave them till he goes to theatre' she said. Wise move lady, I dont think she could take any more of Harry's pleading cries to stop.

And we still had the joys of the anaesthetic to come. Harry was third on the list. And anyone knows, the earlier you are on the list is a godsend bonus cos you can escape and be back on the M6 well before the traffic has any idea of getting to be non-moving.
So third wasnt too bad. Harry has huge blue eyes, and apparantly blue reacts better to the eye drops and dliate much quicker, so after 20mins you could barely see any blue, just huge black pools.
We were sent down to theatre and we thought, 'ooh we could be second here' has the boy who should have been second hadnt been booked in properly, and had only just had eye drops put in and as his eyes were dark brown wouldnt react quickly enough.

So you can imagine the raptuous joy we felt when the anaethetist called Harry's name FIRST. Yes you did read that right FIRST. To the obvious annoyance of the parents of the younger child (lists are usually done in age order, youngest to oldest) I trotted off with him and this anathetist was brilliant. He must have read Harry's notes before as he put Harry in the biggest blanket and wrapped him so tightly he could free his arms and legs so he couldnt struggle against the mask. It normally takes 4 of us to pin him down. So it only took a few minutes and Harry was asleep. I hope he is at every EUA in future.
The consultant said' I've brought Harry down first as I am soo confident I will just be looking today and not treating' and he was bang on right. Fantastic news was given that all was still stable. Hip hip hooray

There is always a little downside, just to clip your joy a little. He intimated that I should be researching schools that cater for visually impaired children, and that may not necessarily be the mainstream school I would want him to go to. I smiled sweetly and nodded along but thought 'you can sod off matey, he will go to mainstream school or no school at all'

But anyway, we are still cheesey grinning pleased. The journey home was fairly quick, we luckily just scraped past a 5 car smash incident before the cops shut the road. Thankfully noone appeared hurt, the cars didnt get away as lightly. Rachel talked all the way home, think I nodded off snigger, but the driver got some directions to some excellent farm shops to buy some delicious fayre for his tea.

Thanks for coming Rachel and being great company.

I compiled a little photo shoot for Harry, I hope the link will work. Enjoy it, the star of the show will make you smile, I guarantee.

tsk tsk you will have to copy and paste it grr

Fondest love to you all as ever xx


  1. Thats such great news. Those drops sure sting, hes one brave, lovely little boy.

  2. I'm coming to this late, but YAY FOR GOOD NEWS!!! I'm so glad for Harry, you, the whole family! =)