Blogging from Brum.

Here we are in room 439, 

at the crack o'dawn. ( Both Lisa and I both declined the photo opportunity!) 

Technically I'm pretty sure it's before the crack o'dawn, because its still dark outside! I finally fell asleep last night at around 3am. It was 3.13am when I woke up. I should say when I was woken up by the loud mouthed drunks staggering home via the amazingly acoustic empty multi story car park across. I shut the window. Blissful silence. I then had to put  the blanket off my bed over Lisa's charging kindle because that red charging light was burning into my soul. I was trying hard to not remember the  print of the vicious, wild animal staring down at me, eyes that follow you round the room, on the wall above the bed.

Then I reckon to have fallen asleep finally about two minutes before Harry started his own Dawn Chorus. We had the full alphabet song, various other tunes and lots of " I want to git out of my cot".  William got up then, so we gave in and joined in with the waking up ness! So am blogging on the bed, with a nice cup of tea, watching CBeebies against my will! Lisa reports a crap night's sleep too! 

After our long journey on the M6 yesterday in the portable greenhouse, we dumped the stuff in the hotel room and wandered into the city centre. The boys were treated to fries from a certain global fast food establishment, and the grown ups went to M&S! 

Harry and William had a splish splash in the bath when we got back and got their pjs. CBeebies went off at 7pm. Both boys sang the goodnight song beautifully then promptly ignored it! Eventually they both fell asleep. We tried to watch Dragon's Den. But the only channel not to work on the whole tv was BBC2! 

We watched Law and Order, Lisa didn't last till the end; missing the not guilty verdict , then lights out!! 

I suspect the real reason for our bad night was not due to our mini city break, but because of the reason we are here. In just over an hour we have to be on the ward at 8am, for Harry to have his latest EUA. So the specialist in the absolutely brilliant Birmingham's Childrens Hospital can look into his eyes to see how the land lies bilaterally in the world of Retinoblastoma. It's 8 weeks since his last visit and we are hoping that there is still nothing to report. Fingers crossed everyone! I'm now off to get a wriggle on! 

( During the latter part of this post, I nearly expired due to the stench wafting from Harry's nappy! Even William was complaining! Lisa reported it was at least a six wet wiper!! ) 

The alarm Lisa set last night just went off!! It's officially 6:30am! 

Rachel x 

Harry update

Ok this is the deal, Harry's patch hasn't changed from last time so maybe it's just a strange patch but it's not beyond the realms of possibility that it's an extremely low grade tumour that grows very slowly. We will take the first option thank you very much. They Will keep a close watch on it but I say no change is good news... We will see x

That was Lisa's FB status earlier. 

So as you can see, his eye remains unchanged for the time being. Long may it continue! 

Thank you for all your lovely supportive comments. It really does mean a lot x 

Come on Harry xxx

 Today Harry will go under General Anaesthetic for the nth time. This time, as I posted a while ago, the exam has been brought forward to just four weeks after the last one.  Those consultants ( which my phone wants to write as co sultanas !! ) saw something they were not sure about. Let's hope it turns out to be NOTHING. I know Lisa has the cold fingers of doubt gripping her shoulder. This morning is going to be long as I wait to hear. 

Cancer really really STINKS. 

Come on Harry, be brave little man

Love from Aunty Rachel xxx

University's Eve

5.20am

Friday has come round all too soon. One proper day left at home. I'm a bit* raaaar that I have to go to work and spend it with other people's children, not my own. At 3.20pm I'll be hot footing it home. At approx 3.22pm I shall be home!

*I'm a LOT raaar.

I know she will be back before I know it with mountains of dirty washing. I know it'll be fine. I know it'll be the best years of her life. I know I've been working her whole life to get her to this point. See everyone, I DO listen. And thank you to everyone who has listened to me whine n whinge on. I'm pretending to myself, she's just going on another Scout Camp. This, I can deal with!

Her Dad, my HG ( Hunter Gatherer ) who doesn't say much, is struggling too. He spends his whole days at work thinking about his little girl, wondering if she'll be alright!
*rolls eyes* Daddy's Girl.
If she's wanted it, even when cruel, hard Victorian Mama has said no, never, not in a million years, Daddy has got it for her!!! ( Then moaned at her for not putting stuff away- she can't put it away, dear reader, there is too much sodding stuff!! )


Our poor, left behind son is going to feel the weight of all this parental attention!!! He'll be dragged out of his lair and have to take the role of both kids!! *sniggers*!!!! Please note I won't make him wear full make up and short skirts to go to school though! Hmmm nor will I fill his room with teenage girls!

He doesn't say much, obviously taking after the strong silent type his father is, but I'm sure he will miss her too.

They've been good siblings. She's completely bossed him about his whole life, apparently he swears at her on the way to the bus stop in a morning. The way she can strop n boss, I'm not surprised. I think I'd be swearing at her on the way to the bus stop.

But they've always been together. Even this summer, gone shopping, cycling, walking etc. They gave me a heart attack when they let go of the bar, when they were hanging upside down together, on a scary ' people die on those things ' extreme ride of terror at Camelot a fortnight ago! ( I videoed this on my phone, I am screaming louder than the people on the flipping ride! )

So he will be left at home. He takes his GSCEs this year. If all goes to plan, I'll be recycling this post in three years time, if he's been as successful as she at Sixth form.

You think I'm maudlin and whinging now??? You just wait til then!!!!


Here is one of my favourite photos of them. Playing together in one of our favourite places. It's a bit blurry, but that's to help you imagine seeing it through my tears!!!!

I hate to admit it, but my mother was right, the time has flown by and 'they are not babies for long' but they'll be my babies forever. I've already told work colleagues that if I'm not in on Monday, it's because I'm at Uni, under the bed in a tiny room in Newcastle!

No doubt I'll be back on my blog to regale you with The Move. I have NO idea how we are going to get it all in the car :-/

PS please keep little Harry chops in your thoughts today. He's gone for his four weekly Exam Under Anaesthetic. No more tumours, no new growth is what we want to hear.

Cancer - it's just not fair

Harry

Well, just a short post as I am supposed to be getting my overnight bag ready. Harry has been called back to The BRILLIANT Birmingham Children's Hospital  sooner than Lisa thought. We are hoping that it does not mean anything sinister.

To look at him on this photo - which is how he is all the time, Smiley and gorgeous. So sweet natured, happy, a little innocent angel - you would not think that  lurking, slinking, behind those big, beautiful baby blues is an evil, twisted, hideous disease called Bilateral Retinoblastoma slowly trying to take his sight, eyes and if it had it's way, his life. The tumour on his left eye is dangerously close to his optic nerve.

Ooh hang on, can't type as tears in the way.

Right, have pulled myself together. I just love this little treasure Harrychops  so much and cannot bear the thought of him having to deal with this. Over and over.

But it's how it is. Lisa remains strong on the outside but I know she is glad I can come with her this time. It's a long three hours  on that M6, taking your little one  to somewhere, who,  now he is older, is beginning to realise where he is and no he doesn't like it, on your own. We try and find humour in any situation. It helps. Certainly when we get there, see all the other little heartbreakers, ( And bloody hell it is ONE emotional place and so humbling )  we thank our lucky stars that Harry IS being treated. The staff are great. Expertly, they guide these shellshocked parents gently through what has to happen. It is amazing how resilient children are. They are just happy playing. To  babies like Harry, cancer is normal.

Three weeks ago she was on her own as they delivered the devastating news that after two clear exams, this time the tumours had re grown in his right eye. This is his 'good' eye. The one which he has limited sight in. They look for these seedlings as they call them and laser blast them into oblivion. Only trouble is, these blasts are bitter sweet. Sweet because they destroy the filthy cancer, bitter because they also leave scarring which means another tiny bit of sight is permanently gone.  I am glad they are on the ball, I am wondering if they think Harry, who will be going through a big growth spurt again, will be susceptible to rapid tumour growth. Let's hope I am wrong.

So let's all cross our fingers, salute any single magpies, send up prayers, healing thoughts Harry's way. he does need every bit of positive energy he can get.  Use our adopted motto.

DUM SPIRO SPERO

While I breathe, I hope.

Welcome to any new readers, if you'd like to find out more about my nephew Harry, I  have a few posts on him since April 2011 when he was diagnosed at just 13 weeks old, Or you can pop by Lisa's ( my sister )  blog and have a read there. She appreciates any support.

http://harrywillbeatcancer.blogspot.co.uk/

Love Rachel xx