Wednesday, 30 November 2011

Look what Hanty Raychel made me ...

How cute x

Its 5 am and .....

1) William is wide awake, so get up and ..
2) Everyone else is still asleep
3) I get the laptop all to myself without someone asking to play cbeebies
4) I actually get to drink a HOT coffee
5) Must get my dressing gown cos it's cold and the heating hasnt come on yet
6) I get to drink another hot coffee.
7) scratch number 6, Harry is stirring.

I know my Monday post seemed full of doom and gloom but I wasnt really in the mood to be jolly. Life has to go on and I still have to be a mummy and house wife, so lets get on with it.
On a plus note, Harry has gained some more weight. He's still only the size of an average 6mth old but he's gaining nonetheless. This means he's building up his strenght too. He's doing his bestest to crawl, and can actually go backwards in a fashion. Sitting up for a few minutes, but he loves being on his feet so thinks he can just fling himself back and get onto his feet. The others think its funny, well William doesnt when he gets hold of any of his toys. The sideways stern look is hilarious as he emphatically states 'thats mine'. It whizzes me back to when he was doing it to Madeleine's stuff and she threw the same look and comments.

Got the Visual Impairment team coming tomorrow. Will probably be armed to the teeth with info and stuff. Let you know what they say.

Matthew off school today due to the Public Sector Worker strikes. The annoying thing it goes down as an absence on is record (although coded not his fault) but I do agree with the reason behind the strike as it affects Danny too. Just hope to god you don't need an ambulance today, cos they are on strike too.

Monday, 28 November 2011

Well the news wasn't exactly what we wanted to hear, it was in fact the good the bad and the ugly.
The good, his existing tumors are completely inactive, hooray,
the bad, there were 8 new seedling tumors (these grow into the whacking great big nasty ones if untreated).They were on the outer rims of his retinas which meant he was in theatre ages. 75mins as opposed to the 30mins it usually is. They were all lasered, hopefully to annhialation. But it was still new growth. WE WANTED NO NEW GROWTH. They seemed a little on edge to me, despite them saying new seedlings are expected. They want to see him in 3weeks. His left eye is deffo worse than his right, and they want a sight test each time we go down now and will look to doing some patching to stop his left eye switching off. Maybe William will be happy wearing his when he gets them if he sees Harry wearing one.

And now for the ugly .... his RB nurse har har. She's actually lovely. Its BRB thats ugly. (Bilateral Retinoblastoma)

I need to laugh, because right now I'm not feeling too great. Its so so hard sitting waiting then being told your son's nasty cancer hasnt gone away, and they need to keep an eye on him. They mentioned other treatments they could look into if need be, and havent ruled out he may need more chemo, god forbid.


3 wks time, we will get 'no new growth' because nothing else will do.

anxiously waiting ....

Today the day I didnt want to come, but here we are. Waiting waiting for Harry to go to theatre. He in quite high spirits considering he's starving and about to be put through help. I hate waiting. Feel sickly nervous, hoping to god we get good news. Will update late x thanks for caring x

Friday, 25 November 2011

2 more sleeps. aargh, its getting too close. Please give harry a break.

He met Santa tonight at Matthews school fair. They decorated the school and its all twinkly and christmassy. Matthew took harry in with him and I tried to get a pic but it rdidnt turn. Out. Childish I know but I wished with all my heart for good news on mon morn. Matthew wished for a laptop, an xboxx, a nintendo 3ds and an ipod. God loves a tryer. Madeleine point blank refused to go in.
Whilst waiting in the queue I overheard some chitchat mainly 'is that the baby with cancer' excuse me but that is a he and he does have a name. Gonna make a. Placard for the pram.

Wednesday, 23 November 2011

4 more sleeps

This week is going too quickly. Horrible panicky feeling. At least harry blissfully unaware at the mo. Am sure he knows once we're in the hotel opposite the hospital, he's always unsettled.
This will be his 9th general anesthetic. Doesnt get any easier carrying him into theatre. Please please let it be good news. Really scared and dont wanna go.:((

Its still dark

Harry been awake and giggling since 4.40am. WOuldnt have minded the early wake up call had his biggest brother not woken me 3 TIMES through the night with a bad dream. Grr. Day of tiredness to follow.

Harry's appointment letter came through yesterday, good job I rang them to check what day we were going to Birmingham as 5 days is not enough notice. Its okay for them, they can just assusme that everyone can just drop everything and run at the drop of a hat. That reminds me, need to ring the transport people to check they have us booked down. I am certainly not driving all that way and especially not in the Brum centre, its a nightmare. Don't think even the best sat nav's could deal with Brum centre.

William was deliciously cute yesterday too, he trotted after me all day and said 'Love you mummy' constantly. He made the checkout lady in Asda laugh as he was trying to move Harry's legs away from him (they were touching him ever so slightly) and saying 'stop it Harry' then to me in that telltale whiny voice kids do ' mummy, Harry leggy touching me'

Matthew and Madeleine now know I'm going to Brum this week, they've already booked their spots in different beds. Daddy's cool cos he lets us stay up late and eat sweeties. I must be such a cruel mummy lol.

Oh, well, coffee pot calling me. Going to have a look into the Family Fund - recommended by one of his consultants. Its for families with disabled children or children with life threatening illnesses. It's easy to forget (thats a lie its not) but when you've got such a busy daily schedule with all 4 children Harry's illness becomes part of it. Its still hard to bear when you're reminded that he has a life threatening illness. Bloody BRB.

Monday, 21 November 2011

6 more sleeps ...

Me and my teddy bear.... ah bless.
If you look closely you can see his blonde hair growing back.

He's trying his hardest to get up on his hands and knees. He just doesnt have quite enough upper body strength yet. Sodding chemo, it really knocked the wind out of his sails. Its like time stood still and now he's playing catch up. Keep trying Harry, you'll soon be off.

Looked at Madeleine today and thought 'where has this little girl come from' She seems to have grown up overnight. SHe loves her pre-school. She has almost cracked writing her name, and its not exactly a short one. She asked if she could come to Birmingham this time, only to see if they have a play room at Birmingham hospital like they do here. She soon changed her mind when she realised she can sleep in Matthew's bed, as he's already claimed my spot. It makes it a little easier to go knowing they're happy here. It would be awful if they cried, its bad enough going as it is.

6 more sleeps to B day (Birmingham day). I had a quick look on the webpage for the Childrens Eye Cancer Charity, and scarec myself with the some of the life stories on there. They're supposed to help, but each one had tales of eye removals and blindness. Where are the happy ever after stories? or are there none. BRB leave Harry alone.

Sunday, 20 November 2011

7 Sleeps to go ....

Oh my lord, this time next week I will be settling Harry down after his last feed til he wakes from the anaesthetic the next day. It's hurtling too quickly and I am so so nervous. I think I am more on edge than I have ever been. I need answers to the last letter we got from them, but at the same time I don't want to hear it. I am praying to any god that will listen to make it all alright. No new growth is what we need to hear, but I can't help having a feeling this won't be the case.

Spent a lovely few hours at hanty raychels. Think she overdid the bionic woman routine and realised that she's just had surgery and needs to slow down. Its a relief she's on this side of the op now, and the rest means she's knitting for England. Am so looking forward to Harry wearing his new Jacket she's just finished.

Genius son Matthew learnt his 9x table this weekend, he's doing yr4 work but he's only a yr 3. Am going to have to buy him some new pants, He's grown yet again, grr. Tall genius!

Friday, 18 November 2011

Only 9 more sleeps ....

Only 9 more sleeps til we go to Brum. I don't know why but I've got an awful feeling we won't get the best news. He had 6 new seedling tumours last time, and yet according to the letter they sent last week outlining his last appointment, they yet again dropped more on us than they'd told us about, mainly a patch in his left eye that needs very close monitoring. He's only doing 'quite well' which doesnt fill me with confidence that we will get an all clear visit with no new growth. So I am dreading going, am scared of going and I HATE BRB with the utmost loathing. It is mean and nasty and my poor sweet innocent darling baby does not deserve it.

On a nicer note, I picked up his photos from his portrait sitting. They are sooooo cute and the photographer did really well to avoid Harry's wandering eyes. I will scan them and post them soon.

I should count my blessings, I came across a lovely family who just said goodbye to their baby girl Estella who sadly lost her battle with type 1 SMA (Spinal muscular atrophy). She was only 8months old. Sweet innocent children do not deserve to suffer with these awful diseases and illnesses. Leave our children alone!!

Sunday, 13 November 2011

Latest piccie of the angels. Cannot believe how grown up Madeleine looks.

Harry's hair grows really fast now, he's got a lovely soft shadow of blonde hair. He's trying to get on his hands and knees too. Once he's off that will be a good test of what he can see as lots of bumped heads equals not seeing what he's crawling into. Do they do cycle helmets in diddy size?.

Matthew completely cracked me up yesterday with his biology lesson. He exclaimed that daddy made Madeleine and ,mummy made him, as Madeleine has a fat tummy just like daddy and his was thin like mummy's. I kissed him for the compliment and am still sniggering at the daddy comment. Needless to say he didnt find it as funny.

Wednesday, 9 November 2011

As predicted yesterday, I did indeed fall asleep on said settee. Oh well, lets see what tonight brings.
Took Madeleine to school this morning and had a major battle with william who point blank refused to leave. Quite funny really as there was one parent dragging their kiddy in and me dragging william out. He will go on a Friday morning after Christmas. Don't think he will worry about stopping methinks.

Rachel had her op today, all went to plan and they successfully removed offending gall bladder via keyhole surgery. She is understandably a little sore and groggy, but hopefully she'll feel better in the morning and hopefully come home.

Harry sat unaided for about 5mins today, he's slowly catching up

Tuesday, 8 November 2011

Got the registration pack to add Harry to our local county council blind register so he can start to get any help he will need. We had a little snigger at the accompanying letter. It was on 6 A4 pages in mega sized font, (in normal font would have been half a page), erm we can see fine, but the final paragraph, 'if you need us to send this letter on audio tape please let us know' cracked us up.  If we cannot see, how would we know what it said to request such tape.
Life is shit, but we have to laugh sometimes, there is little to smile about Harry's condition.

Hanty Raychel is a bit nervous now, she has her Gall Bladder taken out tomorrow, hopefully just by keyhole. I must remember to remain solemn when I visit so not to cause tension on her stitches from laughing. As a real treat I took her to Asda with me. She (as she always does on each visit) assured me she just needed a couple of bits. I never believe this as yet again she spent £50 and filled 6 bags. Good job twin pram wasnt in the car.
Dan's on 3 night shifts now, so got the TV, bed and settees to myself. I will no doubt waste all three by falling asleep on the settee as I am tired. Gonna make some fruity toast now. Yum yum, bye bye

Monday, 7 November 2011

Harry went to see his consultant at Lancaaster today. She was lovely and he obliged with lots of gurgles and smiles. He's put on a little more weight and now tips the scales at 7.64kg (16lb 12oz) and is 70cm long.
He's still betwen the 2nd and 9th centile so short and light for his age but what the hey he's gaining. Bit by bit he'll get there. She will see him in 4m to see how he's getting on and has referred him to the physio as she thinks his poor eyesight will hinder his being able to sit independantly as he will struggle to see for balance and also where to counter balance. So yet more interferers. I did say he will prob do it in his own time, after all he's been really ill, but it will be the same physio that Matthew was under as a baby so she's really nice. She cn come for a coffee. She warned me to keep him well away from measles and chicken pox and he still has direct access to the ward.
Trying some new more lumpy food at the mo, and he doesnt like shepherds pie. Can't blame him really. I have distinct memories of my mums shepherds pie when I was young, and the watery grey mince and stodgy mash still turns my stomach. I have never made it for any of my children (Harry's was a lazy shop bought one) and his expression will mean I never will.
Big sis has her gall baldderectomy on Wednesday, hopefully just by keyhole. Sending big hugs her way xxx