Its beginning to feel just a little bit like Christmas

Now we have got the trip to the dreaded Birmingham out of the way and knowing Harry is still stable we could turn our thoughts to Christmas.
The wooden, eco-friendly, re-usable Advent calendars were brought out and filled with chocolate and whilst feeling in the Christmas spirit I decided to put up the tree and decorations.
Its either a job you love or hate and sometimes I feel both. But this year, I was bang in the mood so up the tree went.

And so the finished product.

I love just having the tree lights on at night time, it makes everything seem a bit more magical. I blitzed the santa shopping and just need to wrap it all if I can dare brave the cold going to the garage to get it all. Not much room for hiding things, especially from one 8yo who is seriously doubting the existence of Santa. His mind is too logical, like what is the point of toy shops if santa brings everything, why have I got rolls of wrapping paper if santa brings everything, and how can one person do everything and magic is just an illusion not reality.

Still the middle two are giddy with excitement, and Harry just trots around saying mismas.
Its going to be lovely, the kids will love their gifts, and danny will enjoy the chaos as he is not working this year and to top if off Harry doesnt have to go to Birmingham til the New Year. Simply perfect!

Awol

I am very sorry I have not updated for an age. Everytime I sit down to do it, one of the angels demands my time and it goes out of the window.

Firstly, harry had a clear visit again, which was amazing. It means we do not have to go back until the new year so we can enjoy Christmas without the gloom of new tumors hanging over us. This makes it 4 consecutive visits now, and whilst not being complacent, am quietly cautiously optimistic that when harry turns the magical 2 in January and when retina growth starts to slow down that we may have turned round a corner to winning this fight.
Mind you, there are plenty of families who thought the same and relapse, regrowth and new growth started so thats why I am not being complacent.

Madeleine is much better after a nasty ear infection which ended up perforating her eardrum. It must have been agony for her, and I wasnt impressed with school leaving her to cry assuming she was just missing mummy who was in Birmingham with harry.
I have to keep it dry for 6 wks whilst it heals. That will be fun washing her hair. She could also get recurrent ear infections too. Grr winter bugs.

Xmas is just round the corner. My cards are written, my tree and decorations are up (will post a pic separately) just need to sort the mountain of gifts I need to get. You can bet that as I have left it so late it will he sold out locally so I will have to trek out to the toy superstore. Oh well it wouldnt be Christmas without a little stress.

eek its nearly December

I simply cannot believe we are almost at the end of November. Yes I Have started to send some things off to Papa Noel for the month from now over indulgent festival, but I have tonnes to do.
Got to get a nasty trip to Birmingham out of the way for starters, and hoping things will be clear will mean we don't have to go before Christmas.

But knowing my luck, some little swine of a tumor will have stuck its nose out AND THAT WILL MEAN GOING BACK TO 3 WEEKLY VISITS and that will coincide slap bang with the last day of term and the school Nativity service in the adjoining church to the school. As Madeleine is in reception she will be dressed as an angel (only reception dress up and all 14 as angels) they turn off all the lights in the church and they parade round accompanied by candlelight. It is beautiful and tear jerking as they sing unaccompanied too. Matthew is doing a reading and is singing solo in the little drummer boy song, SO IF I HAVE TO MISS THIS BECAUSE OF EFFIN CANCER I WILL BE MADDER THAN A RHINO WITH AN ITCHY ARSE

So I am warning you now Retinobloodyblastoma just you dare show your face this time. A clear visit is the only thing I want to hear.

I know what I want to buy everyone, I just need to a)pull my finger out and get it sorted and b)stop spending money on shite so that I can do a)

Matthew (I think still believes even tho I'm fending off a barrage of questions) is simply looking forward to getting the advent calendars out. A daily dose of chocolate more like, and the daily argument who will have Harry's as he doesnt like chocolate.
I spent a little more on some beautiful wooden creations with 24 little drawers in for you to refill year on year. I think I might use quality street this year, If I don't scoff em first lol.

( I am actually doing what I said in the about me bit and am halfway through shifting 28lb off my fat arse. I am now in my size smaller skinny fit jeans, tho I have a size smaller still in my wardrobe and will try to be good as the season of goodwill approaches)

I will share a Matthew story (and again I do not mean any offence to anyone as the career of Waste Engineer is very important and rewarding (aka Bin Man to some people))

My wish is that Matthew applies himself at school and uses the very bright (and inherited from me) brain to pass for the Grammar School. I and my sis Rachelradiostar both went to the Girls Grammar School (and yes my grammar and spelling is atrocious but who cares)
Anyway, we drove past it the other day and I again reiterated that clever boys go there and can then go onto univ (YES I KNOW THEY CAN DO THIS FROM ANY HIGH SCHOOL BEFORE YOU GET ON HIGH HORSES) and hopefully get good jobs, 'oh like Doctors and lawyers' he said. Exactly I replied.
We drove down a shortcut through a council estate and he asked what was further up the hill. A high school which will be my last choice for you I replied. Is it not very good, he asked. Well its not as good as the grammar school (thinking for putting on CV purposes)
Oh he said, so if you go to grammar you'll be a doctor and if you go to the other school you'll just be a binman!!!
I inwardly snorted to myself. Now I admire those who do work in the refuse industry, its certainly something I couldnt do but a childs perception that working with rubbish is rubbish is very funny indeed.

Ok, A Madeleine story, as we drove along somewhere, someday I can't remember and doesnt really matter there were 2 quite elderly gentlemen talking together in the street. Why are they not dead? she asked. Why would they be I answered. Well when you get old you die and they are old.

Actually both were funnier at the time and I suppose you had to be there.

I will finish on a little Harry update. His physio came last week and was amazed at his progress. She was loving his walking, and just wanted Matthew's orthotic surgeon to look at his feet as he is displaying signs of hypermobility. So I took him along to Matthews appointment later that day and 2 bits of good news. They will let Matthew try a spell without his Forest Gump boots and have insoles inside Boots of his choice. Still boots but its progress. They took impressions of his feet, gooey and yukky, so his insoles will match his feet perfectly. Brilliant he was over the moon as it was becoming an uphill struggle to get him to wear the boots.
He looked at Harry, and said he looked just like a baby who has just started walking and it could correct itself, but to buy sturdy boots to support his ankles. So Harry's first shoes will be boots, if they do them in his little size, Madeleine was in cruisers til she was nearly 3 as her feet didnt grow into proper hard walkers.

Harry's eye teacher came, she too is pleased with him. He can say her name now which made her grin, and she will come back with the occupational therapist at her next visit.
He's talking really well, well he should be as he's nearly 2. But in Asda the other day, whilst at the checkout he was protesting at being in the trolley. He was demanding 'get me out, am stuck' and the lady behind commented 'ooh what a clear talker for such a little one'. Err he's nearly 2, but I didnt tell her why he is so little. He's our little superstar, and he won't let Rb get in his way (especially next Friday)

Happy thanksgiving to all our lovely over the pond readers. Hope you had a great time.

See you all soon xx

go on, a little Harry fix for you.

There's no stopping him now

Well Harry had found his feet a wee while ago and was daring to step a few steps by himself.
He's now quite happy plodding across the room, typical 'baby-learning-to-walk' pose with arms in air and his usual grin on his face. He's so proud of himself.
There's just a slight (well major) snag. Anything on the floor is an instant trip hazard and yes I know this is the same for any baby learning to walk but he doesnt see something the size of a cushion and promptly falls over it. He's got plenty of bruises, and I'm waiting for the inevitable whack as his head meets with something hard. But it doesn't seem to put him off, if anything he's more determined and gets back up and off he goes again. The physio is coming on Tuesday, if she's not pleased I'll eat my hat!!!
He's chatting away quite coherently now (well his dad would disagree) and has now got quite a big vocabulary. He's counting to six, and trying to get to ten. He just smiles all the time and its wonderful.

Well he doesnt smile all the time, last week he caught the strange virus the others had, and spent 4 days trying to shrug off 39+ temperatures. He was a bit sorry for himself and wanted lots of mummy cuddles, which I obliged with absolute pleasure. Its the first time (apart from a one day vomiting bug) he's had a temperature since finishing chemo. It was quite nice not having to panic and pack the bags for the inevitable minimum 2 day stay in Manchester on antibiotics whilst the found the cause of the infection which would have happened on when he was on chemo. Do I miss those days? Absolutely NOT.

Well to further Harry proof our living room and to make things a little safer for him. We swapped our lovely glass TV unit for a fabuloso solid Oak wide TV unit. Okay, the bangs will hurt just the same but we don't have the worry of the glass shattering and the TV toppling down on top of him. Plus he can't get behind it now so those little chubby hands can't feel the wires and give them a good tug and again avoid pulling something on top of him. Our hard gaming chair has been replaced by a soft brown leather bean bag, so his head bangs onto something soft whilst crawling and to finish the room off, we had the sofa's steam cleaned, well the arms anyway. I just bunged the cushion and seat back covers in the washer (despite the labels saying Never do this) and it looks like new.

Just under 2 weeks and we'll be back in Birmingham. I'm sure all will be well, Harry's proving too much of a tough cookie for this cancer lark, and it will be a quick in-out and off we go home. There's the consultants comments from last time weighing slightly heavy that there's some areas they're concerned about so he's not out of the woods, but hopefully it won't amount to anything. I'm getting too used to having clear visits now and nice 5week breaks between appointments. Maybe its complacency and I'll get a rude awakening one day, but for now clear visits are fine.

things that make you........

well i am going to pinch this first bit from my sisters blog.
10 things that make you smile
1) Harry getting a clear visit
2) remembering how,when little, i used to help my grandad prepare dinner. they had a hot lunch every day. carrot slices went from a slither to an inch thick and he never complained or corrected once. The smile continues for the battle between me and my 2 sisters for the rice pudding dish. it had a bit extra and the yummy caramelised bit baked onto the side of the dish that you could scrape with your spoon. No olympic medal would come anywhere near as a prize!
3) my walk to the cafeteria whilst in the throws of labour with Harry and Rachel decided to tell me the tale of self brazilian waxes using always ultra. I literally wet myself laughing, as some more 'water' was forced out as I was bent double laughing. All this happened on a stair case and a couple legged it thinking I was about to give birth. Same smile for midwife rachel locking herself in the bathroom, don't think she mentioned that one!
4) my Christmas tree
5) my children, especially stand up comedian Matthew..
6) i still laugh out loud even now at his serious view on one legged people hopping and getting tired (see a previous entry for the full tale) i laughed so much I had to stop the car
7) having dad look after us in the school holidays, we had ace days out to timber mills, scrap yards, garages, river banks and we always got sweets
8) being the first to step in fresh snow
9) the smile on my kiddlies faces when they see me as they come out of school
10) Harry getting a clear visit! and seeing as i can't have eleven my wonderful born in jan friends xx


It's sometimes easy to forget to smile. Harry has had a hat trick of clear visits and you feel that people get a little complacent, that they think he's cured. But yet still I have to every month take him into theatre and hold him down whilst he fights against the anaesthetic. I still have to hope he comes round ok, I still have the mental torture waiting to be told the news, and whether its good news or not I still have to go through it all again the next month. That's just what I have to go through. Imagine it from poor Harry's perspective, and as he gets older it gets worse as he knows whats coming. He suffers evil nasty eye drops, a general anaesthetic, needles, laser treatment and painful bloodshot eyes afterwards. Would you go through all that and still smile?

Anyway, I've been contacted by Cancer Research UK press office who want to feature Harry in some publicity. Harry won one of their Little Star awards last year, so they will probably want to follow it up. Am not sure what to do, am all for raising awareness but do I really want our life to be put into the public eye? I've agreed to speak to them to find out what it will entail and will go from there.

I have written this post using my sort of christmas present. Its a wonderful amazing Kindle Fire. It is brilliant, thank you Danny. It transferred all my photos from facebook and I came across my all time favourite one of Matthew. He was just about to finish nursery, i hope it pastes on here ok.

What makes you smile?

Stand up to cancer day

Today is a nationwide fundraising event called stand up to cancer. Their aim is to raise money to find a cure for all cancers.

Well harry is fightin his own battle and today was his latest visit to Birmingham. Well he must have known what was happening today as he made his own stand against cancer and had a clear visit. No new tumors, naja zilch nothing. This makes it a hat trick. Something he's never managed before for both eyes.

I am so proud of my wee man.

There is always a 'but'

They will not stretch his appointment beyond 5-6wks as there are some areas that concern them and he is not out of the woods yet. Their words, words which have struck a sharp blade right through me. Are they expecting something bad to happen?

But for now I will take a clear visit, and hope my fears will be unfounded.

Was only a matter of time....

Til William broke his glasses. Think its something to do with the fact he has to wear a patch for 2hrs a day to try and speed up the correction of his lazy eye.
He hates the patch like boys hate soap. Who can blame him, but it has to he done.
I'd been putting it on whilst he is at school, another boy wears one so I thought it may help. Plus there's so much close work activity at school it would help him more than at home. He wears his glasses over it.

Well not today, whilst in the car on the way to school a little voice commented "i not be wearing my eye patch today". Oh yes you are I replied. "well my glasses dont work" and turning round I found him holding them with one arm looking like it had multiple spiral fractures (the glasses not William lol)
Aaaarrrggh.
Cheers William.

On a harry note, the health visitor came today for a catch up as shes not seen harry for a while. He was obligingly cute, and now weighs in at a massive 10.8kg. Well massive for harry, still on the tidgy 25th centiles so quite behind kids his own age, but as they say great stuff comes in small packages!

Madeleine is loving school, they have been teaching with phonics which is great for reading but deal for spelling and she is streaking ahead and now reading loads of words. Certainly making I-spy a whole lot easier.

Gotta go, marlene from rainbow trust is here to entertain William.