A double edged sword

My happy little chappie, taken by Hanty Raychel.

A friend on twitter asked how he was doing, this friend is currently recovering from a major removal of 3/4 liver to get rid of cancer. He always asks, but this time a bit of me realised where Harry is at compared to his peers, and I felt a bit sad. All my children were later walkers but by 15mths they were chatting away and all had a massive vocabulary of words. Harry has only just started saying mummy, and has a few more like 'am stuck' 'don't touch' 'whats that/this' but thats about it.
Harry is massively behind, he's only just started cruising along the furniture and wears clothes for a 9-12mth old. And I know you shouldnt compare but when you get people in the street looking amazed when you say he's 19mths old it brings it home.

Its a double edged sword, chemotherapy. At the same time it probably saved his life but hampered his development. I love it and hate it for that reason. I hope he never has to have it again and when you see these poor kids with leukaemia on it for yonks compared to the time Harry was on it it makes you wonder what it is actually doing to them (apart from saving their lives)

But one thing neither chemo or cancer has affected, and that's Harry's happiness and cheeky smile. Even at his lowest point whilst on chemo, he managed to smile. Even when he comes round from the anaesthetic every month he smiles (although I think thats something to do with finally having a huge botle of yummy milky) but whilst cancer has robbed him of perfect eyes and perfect vision, and I hope it doesnt rob him any more than where he is at the moment, it hasnt touched his spirit.

Everyone loves Harry. When we go to Asda, checkout ladies beg us to use their checkout so they can see him. They come and find us so they can have Harry hugs. When one of them finds out how he is getting on with treatment, they tell each other so the next time I visit they come up and be happy/sad depending on what happened and I havent even told them personally.

Cancer isnt a double-edged sword. Its just a normal 2 sided coin. Its gets flipped and ...
You either get cancer or you won't
then if you get cancer and its flipped again..
You either die or you don't.
What isnt that simple is the massive fight and treatment each cancer sufferer goes through to those outcomes. Some are lucky and win their fight, some win their fight but are left with forever scars/afflictions because of their cancer and sadly some do not win their fight.
I used to take cancer for granted, it was something that happened to other people and never really thought that much about it. Spend a little time on an oncology ward and reality hits you like a ton of bricks, sit in front of an oncologist and a consultant while they tell you your child has cancer and reality hits you like all the air has vanished from the atmosphere. Sit by your childs hospital bed watching them struggle for life and reality hits you, really hits you. Living with cancer has to fit in with your way of life, you just get on with it but sometimes you get these reality moments and you realise life's not fair.

My latest reality moment, last night whilst watching some drivel on TV an advert for WaterAid came on. A powerful ad, and asking for money for the poor children who have no choice but to drink dirty water whilst touched me a little also maddened me.
There are so many children (and adults) who have no choice but to fight cancer yet the number of the ads asking for money for cancer charities are non existent compared to the overseas aid. Certain treatment protocols are only available overseas and the sufferer has to raise their own funds to get it. Where are the ads for these??
No child to die is the government message, and whilst its worthy saving a life of a child in Africa, what about saving the life of a child at home. They say charity begins at home....

So Harry's double edged sword, he has deadly cancer but he's alive and happy. Lets hope the cancer side quickly blunts down so it can't hurt him anymore.

I'd forgot how much nettle sting hurts....

I am nursing a patch of nettle stings on my arm, why? well let me rewind a few days...

When something goes wrong, its usually followed hot on the heels by something else, well about a week ago, Dan was just finishing his shower getting ready for work when the pump packed in and the water slowed to a trickle. Not a normal stick on the wall power shower, but a pump attached to the water pipe leading to the shower head. The water pressure is shite at the best of times but not enough to go round the miles of pipes and give enough pressure to make the shower look like a shower. We called our trusty plumber, (as calling the landlord is like getting a twitter follow from Piers Morgan, ie impossible and never going to happen)
The plumber came and declared the pump to be knacked. erm I could have told you that. Anyway almost a week later he's still not got the go ahead from the landlord to buy a new pump, so he might just get one and sort it later. Wonder if the landlord is dead and decaying at home??? He's not returning calls apparently.
What are we going to do without a shower??
Take a bath.
A bath (looking in horror), thats something I use for the kids, I never have time to have a bath and just to get in and straight out is a waste, but bath it is, and has been for a week. Must go buy some more baby bubble bath, its amazing and leaves your skin really soft. Might get used to having no shower, but saving the planet and all that, showers are much more economical and times are hard. Good job we don't have a water meter.
Anyway, the something else.. I noticed the other day that the toilet seemed to take a long time to empty after flushing. My first thought was, O what have the flushed down it now??????
But little alarm bells stared ringing so I went outside and looked in the drains, and lo and behold they were full. Oh no that only means one thing. I lifted the inspection chamber to our septic tank and it was filling up. Oh bloody fantastic, its was pouring down, the pump in the tank to remove excess water was obviously not doing its job and now I was worried the rain water would help it quickly fill back to the house and well you can imagine the scene, outpouring from the loo.
I contacted the people who had done a massive repair 18mths ago, and no they cant come out as they are going away for a week. Could it wait?????????????? No I dont fancy splashing around the house in wellies with toilet waste. So I did the next best thing and rang the guy who empties septic tanks. At least it might buy a bit of time till the repair man returns from holiday.
He turned up, and asked who'd emptied it since the last time they were there? Er no one why? It needs emptying every 12mths (and thankfully this is a landlord reponsibility so guess who's getting the bill)
He duly de-sludged it (and it was rank, believe me) and lifted out the pump which was clogged up with tissue and the so called degradable toilet wipes the kids use. The pump was still in working order, phew but the problem was caused cos the tank hadnt been emptied, waste had got into the clean water chamber and when the poor pump tried to suck the water out it obviously sucked up more than it should and ceased to work, hence the tank filling up even more with water etc and then overflowing back towards the house.
LESSON, IF YOU HAVE A SEPTIC TANK GET IT EMPTIED EVERY 12MTHS OR ELSE

Now, this guy needed paying and guess what, the landlord was not forthcoming with replies to my messages, so I gave the nice man a cheque, asked him not to pay it in to give the landlord time to settle the invoice, and guess what will be deducted off his rent if he doesnt cough up?? I bet he''l be in contact then.

The nettle rash, oh yes. He left the pump switched off, as it actually needs a certain level of water in the tank before it kicks in, and cos he'd completely sucked the tank dry (with his tractor hosepipe of course)he said to check in the morning to see if the level had come up and switch the pump back on.
So I waved Dan of to work and popped into the garden, bent down to lift the lid (wearing some of the illicit blue gloves Dan acquired when Harry was on chemo for barrier nappy changes) and no the level wasnt up enough so I can do loads of washing, a few baths cos of the non-existent shower and that will surely get the level up I thought to myself. Then OUCHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH what was eating my arm??
I looked round and in a Homer Simpson Doh! moment I realised I had plonked myself in a patch of nettles, and a short sleeve t-shirt was not the best thing to wear. Cursing the strimmer for running out of line so Dan didnt cut them back, cursing Dan for not cutting them back, cursing oh yes its behind the barrier for the tank cover so no-one actually goes there so they never get cut back, cursing me for not looking where I plonked myself, cursing the landlord for not arranging to have the tank emptied, cursing cursing cursing
So, in old wives tale fashion I looked around for the proverbial dock leaves that always grow where nettles are so you can rub them in and stop the sting (they do work actually) and I found the leaves and arrggghhh they were covered in mud (but not being to sure if it was just garden mud or something yak from the tank) I didnt use them. Result one arm feeling like its on fire and with a million hot iron pins being stuck in and out. Now I know why ma and pa always yelled 'mind the nettles they sting'. Yes they bloody do.
Oh, its raining, good that will fill the tank up nicely.

Yesterday was a great day, my super clever niece Chloe found out she'd passed her A Levels and had been given a place at her first choice Univ. I've been on tenterhooks for her since June, she's worked so had and now its paid off for her. Still can't believe she's old enough to leave home, but you can catch up via Rachels blog. Go have a look (the link is down the right hand side of my home page)she's so funny.
I decided to wash the car, and Matthew and Madeleine helped, well they hindered actually and we all ended up soaked, the car was nice and clean but its raining. As Matthew said that was a complete waste of time wasnt it. At least its raining on a clean car. I was going to clean the insides out today, but its raining. Oh well ha ha

Marlene (from Rainbow Trust) came, and William and Madeleine were excited all morning till she landed. They demanded to be taken out, now despite the rain Marlene said she'd take them to Morecambe so they could look at the sea. The kids got their shoes on in record time, why is it I have to ask them a zillion times before they even move? And they had a lovely time, they managed to go on the seafront playpark then went to sainsburys. You would think they'd been to Disneyland, they had a brilliant time, I had a brilliant time, I had a lovely hot coffee and did the crossword in peace, Harry was asleep. It was delicious, thank heavens for Rainbow Trust

I decided to see how my cherubs were doing in the height/weight, Harry is still only 10.4kg (he was that last month) and his height and weight are firmly glued to the 9th centile in the dreaded red book charts.
I started with William, he's 96cm and 16kg. Both plotting on the 50th centile so Mr Average. Then Matthew, he's 130cm and 25kg. That puts his height back on the 50th centile (it was on the 75th) and he's now convinced he's shrinking. His weight is way below on the 25th so its true, he is a lanky beanpole. I was a little surprised, I thought he was taller but the tape measure doesnt lie. So Madeleine was last. She measured in at 20.5kg up on the 91st centile (I am so gonna get the 'your child is overweight' crap from the school nurse when she starts in September) but her height was a massive 110cm, I checked it 3 times. This puts her up on the 91st centile too so she's tall and in proportion and her BMI comes out in the green healthy section so let the nurse say something if she dares.
I have had to get her age 5-6 school uniform as the ones for her age are too short. Its lovely seeing this as all the way through her baby years, she was firmly down on the 25th centile for both. What happened? She started eating and has never stopped.
Now unfortunately for me, I still adopt that and the only way I'm now growing is outwards, and I suppose the complete absence of any form of exercise isnt helping. I can't use the 'stuck in hospital bored on my own' excuse now really. So I better buy some batteries for the wii fit board and get my backside back on it.

My arm is still burning, the kids are demanding breakfast, and Matthew is worried if he doesnt it eat soon he will shrink even more. TTFN

The last gold medal ....

Team GB should be proud of themselves, they all fought hard and were rewarded with a mass of medals. China and USA may have had more, but break it down to medal to population size then GB topped the table. Proud to be British. But this wasnt the best thing that happened this week ....

Harry had a clear visit. His new tumor from last time remained unchanged and it was lasered again just to make sure the little blighter was blasted to oblivion. He was in and out in record time, barely was the gas mask put on then the oxygen mask was put in its place. This was fabulous news, I am still celebrating cautiously as I know things can change and just one new seedling is all it takes to get the ball rolling but for now a clear visit is absolutely fantastic. Harry's 21st anaesthetic. Its scary just how much he's been through and yet he still smiles, Harry superstar. Gold medal winner.

William turned 3 this week too. He didnt want to be 3, he wanted to stay 2 or be 4, but not 3. He's really enjoyed the Olympics, and he and Madeleine have been busy re-enacting certain sports, judo, Taekwondo, swimming, gymnastics, running but he was miffed when Matthew point blank refused to be a showjumping horse. Har har

I thought I would remember lots of funny things to share, but alas my memory has failed me. A touch of old biddy disease methinks. I went along last night to a Dancing School reunion. From the age of 4 to 19 I did all the classic styles of dancing, Ballet, Tap Modern etc and competed at many a competition and not wanting to sound bigheaded I won hundreds of medals and trophies, the name Lisa and Annette (my younger sister) Stephenson was famous and many younger dancers aspired to be like us. Our names still appear on the trophies won by children now.
It was a bit of a giggle meeting up with girls I danced with and their mums. Many photos were brought along, and not one of us looked like the twig thin waifs in the pictures. Its 19 years since I gave it up, It only seems like yesterday sometimes, but what was scary was the dance teacher didnt look any different. Hmm Wii Fit needs to be dragged out from the back of the telly so maybe I can look a little more like the old pics for the next reunion. Oh well, going to enjoy the closing ceremony. TTFN x

Where did that week go

Sorry for leaving it so long, time just seems to have slipped by. Nothing much has happened really, kids are off school and typically the weather is rubbish. I thought they could cheer on the much talked about team gb medal contenders at the olympics, but just like the weather they too have been rubbish. They have been enthralled by the diving and gymnastics and trying their hands at judo, but what made me smile was Matthew stating "he was going to turn chinese because they win everything and britain is rubbish, so why does everyone want to live in britain then" snigger
Marlene from Rainbow Trust came yesterday. The kids were uber excited and william stood for half an hour looking out for her, this was at 6am lol they had a brilliant time painting and making, and I now have 3 hand made and decorated wind chimes and enough hand print paintings to decorate every wall in the kitchen. William stood against the door so she couldn't go and cried when she went. She's taking them out next time.
William is now potty trained (yes I know he's nearly 3, but it only took a couple of days and 4 accidents) and amazingly is keeping his glasses on most of the time. Funnily enough he refuses to take them off when the word bed is mentioned. He's 3 on monday. They grow up too quickly.
Harry is back in birmingham next week. I rang for his next appt date, as a month on from his last one would land when my mums is away so I wanted plenty of time to arrange childcare. Oh I've just sent it out, its the 10th august was the reply. So again theyve pulled it forward from what they said, hope its not an omen. Its a 3wks break but what is most annoying, is had I not rung the letter would have landed giving me a weeks notice. That is not enough time to arrange everything as we live a 3hrs drive from birmingham, I cannot just put the other 3 in a cupboard for two days while I go. A few ppl  have asked why they can't email us as soon as theyve been allocated a date, would make life a little easier. Anyway I am a little nervous, hoping his right eye was just a blip last time and magpies stay away.

One step back

Harry has been to birmingham and we were hoping he would make it a hat trick for a clear visit, where nothing new or regrowth happens.
As usual, nothing went completely to plan, firstly they brought his appt forward from a 6wks break, the taxi hadn't been booked and I had a nightmare sorting childcare so again I was going alone.
The taxi turned up on time, amazingly and we had quite a good run down. We were put into a matchbox sized room with no cot. No surprise there. I decided to venture into the town centre to find something to eat and feed Harry. He yelled non-stop all the way in so I grabbed a sandwich and decided to go back to our matchbox to eat. Harry yelled all the way back. I did a bit of furniture rearranging to make some space for his cot and for him to play resulting in some furniture on top of the spare bed.
Anyway friday morning dawned and off we went to the hospital and I saw one magpie and as my hands were full I couldn't salute it in time. Tutting to myself I carried on, but it must have been a sign. Harry was second down and when he's not out after 20mins you know alls not clear. Up to now his right eye has been clear since january and his left has been a bit hit and miss but has been clear for the last 2 visits hence us hoping this visit would make it a hat trick for clear visits.
So you go into the room and wait for the consultant. In he saunts and tells you his findings. No hat trick, they found a new growth, grr pesky left eye. But no its the right eye, the not-being-naughty-for-six-months eye. This hit me for six, was so not expecting to hear this. It would have been a little more acceptable had it been his left eye as this has misbehaved before. So now I am left wondering if it's just a blip or is it the start of problems, his right eye has been completely stable till now, and its his right he sees what little he sees the next few weeks till his next eua will be torture. One part of me is glad they didn't leave it 6wks now, how big could it have grown in those extra 2wks, at least they could laser it now.
Grr cancer leave Harry alone!

If I could turn back time. ..

Well july has dawned and frankly it has been rubbish so far. To start with my waterproof coat is not, having had to sweep a swimming pool out of my garage whilst its poured an ocean from the sky and so I have been soaked to the skin loads of time.
I am still without a tumbler dryer which is a little irksome, but am now without my washer which is an absolute nightmare. I have ordered the spare part and I think its being delivered by snail mail. The helpful guy suggested I handwash durrrrr how do I spin it and it's not the weather for drip drying, zero out of ten for his customer service. Thank heavens for my mums, hope the extra burden with my washing doesn't overload hers!
My poor sister has got a poorly car, and not even an arm or leg will fix it, and even our superstar car fixer dad can't do this one.

And to really nark me off, the luscious 6wks break between eua's I was looking foward to has gone on the Kybosh and Harry will be back with only a 4 and a bit wk break. Dan can't get leave, its bang on last day of school so I have a bit of a childcare issue, it means my poor dad will need to take a days leave something I was trying to avoid and again I will be going alone. I am sure Harry will get his hat trick with another clear visit.

One good thing has happened though, a twitmate has just had radical surgery to remove most of his liver and other tumors to give him a fighting chance, he'd previously been told it was terminal but a second opinion suggested not and hopefully he's on his road to recovery, get well soon Stuart xx

Off to find some choccy, but here's a pic of William with his new glasses, and 4 days later he's been really good keeping them on

We're still here

Will write a nice long update tonight, sorry I've been absent see you laters x