Monday, 10 December 2012
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!
Saturday, 8 December 2012
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.
Sunday, 25 November 2012
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.
Sunday, 18 November 2012
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.
Sunday, 4 November 2012
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?
Friday, 19 October 2012
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.
Wednesday, 10 October 2012
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)
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.
Friday, 5 October 2012
Harry continues to totter his 2 or 3 steps. He's not got any braver, or maybe its because he cannot really see. Imagine walking round with one eye and that half shut with something stuck in front of it and thats perhaps all Harry can see. He's aware of obstacles to a point once he's learnt a room layout he can get round safely, but thats having the comfort of being on all fours. His hands are in contact with something solid and secure, he doesnt have that when he's on his feet, so no wonder he's a little insecure. He's still my brave little soldier.
It was Matthew and Madeleine's Harvest service today. Each class had a poem and song to sing. (don't worry, there's only 4 classes it being a small village school) and Matthew's kicked off with their poem. Matthew had learnt it word for word. His memory is amazing. His teacher had even commented in his home to school diary how excellent he was at the service. Very proud mamma.
Next came Madeleine and their Oats and Beans and Barley grow. I have been singing that sodding song all week, she had sung it at every breathing opportunity. They were to stand in front of the whole church and perform it with some actions. Now I declared that she wouldnt do it. Just stand there with her fingers in her mouth looking cute. But no, she proved me wrong and sang her heart out and did all the actions too. I was so proud of her, my heart almost popped. Her look of self triumph was amazing too. Now I did take my camera but thanks to William's constant wiggling and wanting to go sit with his siblings I completely forgot to use it. Doh!
Her teacher had been absent the day before due to a family funeral. Madeleine informed me that she had gone to say goodbye to her uncle as he had died.
'Am I going to die mummy?' she asked. Oh Lord, what a question.
'Not til you're at least a hundred I hope darling' I replied.
'What happens when you die?' she asked. Erm, I think its like going to sleep and staying asleep forever I replied. What else do you say to a four year old.
'I don't want to die then' she said 'because I don't like going to bed'!!!!
Now howsthat for turning something sad into something fairly humerous.
I spent a loverly few hours with my sis Rachel on Wednesday having a giggle and a catch up. The only downside was the location was Minor injuries Unit at our hospital. Now already having a dicky knee, she decided to entertain her class of 30 7/8 year olds by falling backwards over a little kiddy chair. They giggled, she too giggled tho she was really wanting to shout 'F@$* that bloody hurt!'
So I took her to the hospital where she was xrayed and prodded and poked and you can catch up on her blog here
And here we are on a wet and windy Friday night. Dan has started his run of nights, shame, so I have the TV and the sofas and the laptop and the bed all to myself. What usually happens, is I get all the kids to bed, settle into a sofa of my choice, put on something to watch, usually the Great British Bake Off, then fall asleep to some ludicrous time with my arm and hand dead and pins and needly.
This weekend is the Rb family weekend to celebrate 25years of Chect (The childhood eye cancer trust) and we're not there. I would have loved to have met the wonderful families I have come across on twitter and facebook, but sadly its not to be this year. It would have been nice to have been with people who are in the same boat as us. To have the same experiences and fears for the future, and I have many fears. It makes you a little neurotic, every ailment, ache, pain makes you start the what-if game and its not just with Harry. I know its irrational, and all my children will grow and achieve great things but whilst you're sheltered in the safety of not living with the evil 'c' word you never have to have these thoughts. So think yourself lucky if you're one of the lucky ones and count your blessings.
I count my blessings everyday. I have four of them, and each one makes my day worthwhile. From the mischievous William, to the ever so grown up Matthew and the sweet eating Madeleine to my happy little monkey Harry. They make me smile every day, and no amount of wind and rain, evil or crapness can stop me counting.
Just don't forget to count yours!
Thursday, 27 September 2012
I am so proud. Despite everything my little hero has been through and is still going through he has overcome massive hurdles to reach his development milestones. Ok, he's way behind his peers but by sheer grit and determination he's got there. Well, we've still a long way to go but for now I am amazingly happy.
Harry happy superstar can now freestand and then turn and set off walking when I say 'walk to mummy'. He's becoming braver day by day and letting go more often and 'just' standing there. His siblings are amazed and shout 'look at Harry' as soon as he does it.
So way to go Harry!
This was the wonderful place where I spent 7 glorious years, studying, making lifelong friends and having my inner self carved out to set me on my journey into adulthood.
This place was (and still is) Lancaster Girls' Grammar School. The first choice school of any parent (along with the Boys Grammar)and I was lucky enough to pass my 11+ exam with high enough marks to have my place confirmed with approval from my primary headmaster.
I also had a set of footsteps to follow in, older sister Rachel was already making her mark there. My older cousin was there and my fathers sisters had all gone there.
Now LGGS today is massively different from the LGGS I first walked into. Then...
All the teachers wore black gowns, the uniform was absolutely sensible and completely adhered to and the list of do's and don'ts given to your parents was a mile long.
Starting from head to foot,
If your fringe touched your eyebrows it needed clipping back and if your hair touched your collar it had to be tied back. Absolutely no make-up or jewellery (including earrings) was permitted, even at sixth form level.
You had to have a white shirt and sensibly knotted school tie, covered by a navy blue v neck jumper all under the navy blue (and LGGS approved style) blazer.
You then HAD to wear the LGGS style 6 panel navy blue skirt that had to touch the middle of your knee, so that upon kneeling it touched the floor. If it didnt reach the floor it was shockingly too short, gathered on the floor it was too long.
You could then wear navy tights or socks, or white socks (and THAT WAS IT) and your shoes had to be black, completely sensible with no heel or any fashiony bits stuck on.
Your outer coat had to be ONE inch longer than your skirt and only navy blue. You had to wear the school scarf when wearing your outer coat as your blazer badge would not be visible hence any stalking teacher en route to bus stops could tell a grammar school girl from any other.
Ooh how I longed to go to Riply High School where you could choose the colour of your skirt and shirt!
And we learned respect from day one. Whenever a teacher or a sixth former walked into your classroom, you were out of your seat until told to sit back down. Our desks were in single file rows, and you sat in alphabetical order within your form. I was in 'L' form as my surname started with S. There were 3 house groups, J K and L and your surname initial's position in the alphabet determined which house you were in.
You held the door for anyone entering and you stepped into the sides of the corridor should a teacher or sixth former walk by.
Now this was drummed into me so much, that even when I started working for the bank, an ex deputy headmistress (who everyone was both afraid of and in awe of) came along to do her banking I would leap out of her way and hold the doors open. Now she probably had no idea who I was, but I certainly still revered her. Good old Mrs Rigby.
Now this may sound strict, but as we all looked the same and wore the same and were theoretically as clever as each other we all became friends with each other. We were destined to be models of society. All educated to a level capable of securing a place at university. We were regarded as snobs but it didnt matter, we were proud of being part of LGGS.
I was proud to wear that uniform, proud to be paraded on our speech day in front of parents and businesses alike, proud to be a Lancaster Girls' grammar girl. I can still sing our school song and the main hymns that made up our assemblies and can recite several tenses of verbs in latin (that was compulsory for at least a year if you were in the top third of the year)and OK I may not have ended up the straight A student I was capable of being and I didn't go to university as I chose a career in Banking (job probably mine because of having LGGS on my CV) and I wouldn't really say I was a model of society but how I've lived my life is definitely down to the principles I gained from LGGS. I can safely say I can make a papier mache hand puppet, & draw an outline of Lancaster city rooftops (all thanks to Miss Bell) make pineapple upsidedown cake and mixed grill and stuffed trout courtesy of Miss Counsell, and chat to an elderly stranger courtesy of the voluntary but compulsory community service lol
I won't add a recording of me singing the school song as that would be quite terrible but here are the words. No other school in Lancaster has their own song (the boys Grammar didn't either)but I think they have a lovely meaning.
In our small world upon the hill
We live, we live together.
And half forget, that good or ill,
A wider world awaits us still,
And draws us thither.
Yet though in quiet we sojourn,
To know our guiding light we learn,
Our guiding light we learn.
And this alone shall be our light,
The lamp of beauty, truth and right.
Friendship our pathway has prepared
With joy, with joy and laughter.
The binding ties of secrets shared,
Of common tasks, delights compared.
For ever after
Will draw us close when we discern
The light that here we first saw burn,
That here we first saw burn.
And this alone shall be our light,
The lamp of beauty, truth and right.
Then if we part or if we meet,
Yet keep, yet keep we ever,
This thought of strength with which to greet,
Coming of victory, or defeat.
That time shall never
Dim our fair memories, or turn
To darkness light we made to burn,
The light we made to burn.
It shines in darkness, and in light,
The lamp of beauty, truth and right
Ok, now for some reality. Having an older sister at school had its good points and bad points. I was the only first year that work ankle socks year round as I was absolutely not allowed to wear knee socks and be on the same bus as her. I had to walk about 5 feet behind her on the long walk from the bus station up to school. I had to pay everone's fare onto the bus, and asking for 15 returns and handing over 15 lots of 11p's was no fun. I was absolutely not allowed anywhere near her at school as she was a grown up 4th year and I was a lowly 1st year, tho her friends snatched me into their classroom at any opportunity. Now the good points, all my first year friends were in awe that I was allowed into a 4th year classroom (and sixth form as my older cousin was a sixth former then)and i got the low down on some of the teachers an their habits. None of the teachers believed I had an older sister as we looked nothing alike. I think though that the fact we both went to LGGS built our friendship as sisters too. She is absolutely my best friend and my natural choice for childbirth, hospital visits and my brick wall for helping me through Harry's predicament.
I know LGGS is unrecognisable now, the uniform is relaxed, the sixth formers can wear JEANS, YES JEANS, and the school itself has undergone a major facelift and rebuild and none of the teachers are still there but the essence of LGGS remains. Talking now to any pupil you still get the same feeling of pride coming through and I hope it is still there in 6 years time as I would dearly love Madeleine to go.
Saturday, 22 September 2012
This is amazing, his look of triumph was amazing. I am a very proud mama.
I don't get the 'gosh is he not walking yet' spiel from strangers cause he still looks like a baby, not the size of an average 20mth old. But I don't care what anyone says anyway, because a)its none of their godammed business, b)babies cannot grow, fight cancer and tolerate toxic chemo at the same time, c)babies do not follow instruction manuals, they do it in their own sweet time and d)its none of their godammed business.
Madeleine seems to have settled well into school. She's found some friends and isn't constantly bugging Matthew. Don't think she's the chatterbox of the class. William loves going to pre-school every day. Its really quiet at home now. Even Harry has resorted to shouting just to make it sound more normal lol.
ON the way to school the other day, I explained to Matthew that Madeleine will be starting to stay for lunch from this next week. She's having the same packed lunch/school dinner pattern as Matthew so I asked if he'd keep a watchful eye. I said she's chosen pizza on the day he has fish. He then started off on a great debate on how its absolutely not fair they don't get a choice of pizza toppings. 'Why is it always cheese and tomato?' he asked. Well its so vegetarians can eat it too, probably I said.
'Whats a vegetarian again' he askes. Its someone who chooses not to eat meat for whatever reason I told him. 'What. no barbecue sausages, burgers or sunday tea???' I think I can safely say Matthew will always be a meat eater. Now not to offend vegetarians I apologise for this part of the conversation.
'Meat comes from animals right??' Yes Matthew. Beef comes from cows, pork and bacon and ham from pigs and lamb, well that says it for itself.
'Oh and I love lamb but I don't think I'll eat it anymore' (gulp where's this going) whys that I asked. 'Well cows and pigs are ugly so its okay to eat them but lambs are all bouncy and cute, so its a shame to eat them' But they grow into sheep Matthew.
'Oh yes, well thats all right then, cause sheep are ugly too'
So you're happy not being a vegetarian I asked. 'Absolutely' said Matthew 'and besides they eat with their fingers'!!!!!!!!!!!!!!!!!!!!!!!! Har har har
DISCLAIMER: I absolutely know that vegetarians do not eat with their fingers and are quite happy using cutlery, I was merely laughing at a childs view on the world.
Oh and Chloe seems to be having the time of her life at Univ, her moms probably gained a few more grey hairs lol
Sunday, 16 September 2012
Well to start with the taxi was on time and the M6 was free flowing and stoppage free.
We booked into the hotel and were given a lovely large 'clean' room. A bit much for just me and Harry really.
Getting to the ward on Friday morning, I knew all the families from previous visits, so we could all sit and chat. The baby diagnosed the same day as Harry, is a full 2 months younger, and towers over Harry and is walking. Not needing the chemo obviously hasnt held him back.
Harry went down Number 4, but the first 3 were in and out in no time at all, no treatment needed.
So in went Harry, I was hoping he wouldnt spoil the clear run, but he wasnt going to disappoint. He too was clear. Fandabedozy. Thats now 2 visits on the trot.
In fact the next 2 children were clear too. His consultant was over the moon. This has rarely happened, his poor laser and cryotherapy equipment must have felt a bit sad and unloved lol.
So RB, not only did Harry give you a kickin this time, but so did the other kids too. You may think you're strong but our kids are stronger this time.
Ok so we're back in 4-5 weeks again, but hey bring it on.
Sunday, 9 September 2012
Anyway lets whizz back 18 and a bit years and on the 17th June beautiful baby Chloe arrived. She was perfect, and the model baby. Well a model too, she won a bonny baby competition. Rachel still lived at mums when she was born, and my greatest delight was stealing her into my bed for cuddles. She laughed and smiled constantly.
She was soooo funny too (no guesses where she gets this trait from lol)she squeaked away in her high pitched voice, bossed Tallam (callum) round and fussed over him like a mother hen. I still giggle at this story, and Rachel will KNOW exactly what story I'm going to share.
At probably around 4yrs old, she and mummy went to the local spar shop for some groceries. Upon approaching the counter Chloe, wide eyed, dared utter 'Look at that Hugly woman'
(Sniggering, its actually true, she was very ugly, chicken pox had obviously not been kind)
Now probably extremely red faced, Rachel was just wanting to pay and leg it, but Chloe kept on saying it.
It doesnt end there. Some time later, when in the same shop Chloe decided to avoid looking at said hugly womnan by pulling her cardigan over her face, snigger
Chloe blossomed into a lovely girl, She was a delight to look after and when Matthew was born, she adored him. Smothered him really, but she jumped at every opportunity to cuddle him, he was none too impressed one night tho, aged 18m when Chloe gave him his nighttime milk, then tried to hold his chin in her hand whilst she burped him. Her reward, was an adoring little boy that trotted after her and called her lowee. She jumped at any opportunity to help look after him and subsequently the others.
This has been a lifesaver on some of my Birmingham trips, as she's stayed with my mum and helped play and sort them out when Danny couldnt get time off and so my dad didnt have to lose any hols. They loved it, feeding the ducks, going to the park and not for one minute did I ever worry when they were with her. I trust her, full stop. She has had an amazing upbringing. Rachel has taught her every life lesson you could need and the result is a Chloe who can cook, sew, clean and be able to look after herself.
Thats why I know she will be ok, cos on Saturday Rachel and Darren will drive her to her new life. Life at university in Newcastle. And whilst she will be missed, she thoroughly deserves her place. She worked tirelessly and studied all hours to get the amazing grades she got. And she will be able to look after herself, living off the paltry amount she will have left after her exorbitant accommodation costs have been deducted.
I wish Chloe love and luck as she moves into her new chapter of life. I will miss her dearly, Rachel will miss her like crazy, the neighbours won't miss 'will you tidy your room', but I've heard Newcastle is amazing for shopping, so a trip to see her nearer Christmas is deffo on the cards, if only to take a hamper of pasta and cupboard essentials to keep her going. Lancaster's loss is Newcastle's gain.
One of my favourite memories, we went to Morecambe and whilst waiting for Rachel's 10min (more like an hour) hair appt to be over we walked onto the front and she tirelessly trotted after escape artist William and then we looked at the Eric Morecambe statue. My kids havent giggled so much in ages as they tried to adopt the same pose, I think Chloe won....
Friday, 7 September 2012
Madeleine trotted into the playground quite happily and no sign of tears. There were plenty of tears on some of the new starter parents faces. Danny and I didn't shed one!!
Just to share a few pics with you, the dress was worn on her second day.
She seemed quite happy each day when I picked her up, and she chose a new book for us to share. I sniggered a little when she seemed indignant she couldnt read the words now she goes to big school. Err I think you need a few more visits chucky lol
William has settled into pre-school, I wondered if he would fret as he used to go on a Friday when Madeleine was there, but he gave his usual bye mummy whilst walking into the room, so alls well there.
It does seem really quiet now, Harry has been crawling round the room shouting. Probably shouting for them, he must wonder where they've gone. Its a busy week for him next week. He's seeing the paediatrician in our local hospital on Monday, she is sorting the CAF and statementing he will need, she also wants to check he is growing and developing. I hope she'll be pleased with his progress since his last visit.
His physio and occupational therapist is coming on Wednesday to do an assessment. He's not really progressed that much since their last visit, maybe cruising along a little more. He's 20mths old now, he should be walking independently. He still looks like a baby, not the toddler he should be looking like.
Then Thursday, its back down to Birmingham for his EUA on Fri morning. Lynn his VI teacher wanted to come next week, but there wasnt much space on his calendar lol.
Marlene superstar from Rainbow Trust is taking Madeleine and William out on Wednesday to give Harry some quiet time with the physio and occ therapist. She's also doing some of the school runs thurs/Fri so that my dad doesnt need to take time off work whilst I am in Birmingham. Yet again Danny couldnt get time off and Rachelradiostar is back at work, so its off I go alone again. Looking forward to hearing 'No new growths'.
Monday, 3 September 2012
This week marks a massive change in the Riley household. Madeleine will join older brother Matthew at 'big' school and despite only being 3 for three weeks William will start pre-school. The house will be eerily quiet, I will miss their chatter and banter. Harry will for a time feel like an only child til home time.
One good thing for harry will be the quietness he needs when working with Lynn his visual impairment teacher, and the physio and occ therapist. I am almost 100% certain he has no vision at all in his left eye, thats why its so devastating to find his slightly better right eye started to misbehave 2 visits ago.
I was sure it was just a blip, but yet again as parents we're last to get any correspondence regarding harry and the follow up letter from that appt turned up this week and they stated he has low grade activity and they need to keep a close eye on him. A bit sickening as this means more are likely to grow, I rang to query if this would be the case, and as the growth was following a period of 6m stability they said although it would be great if nothing else grew, they wouldnt rule it out, but probably .
So still uncertain but who knows what agenda cancer works to. I've read stories from fellow rb families whose kiddies had quite long periods of stability before it kicked off again. I hate uncertainty, if its going to happen I'd like to know. Living in the land of 'what-ifs' is torture.
But like everyone else living with cancer we just have to get on with it and force it to become part of your daily life. Despite wishing daily I could swap places with harry, I know that I make him happy, hearing him call mummy and the huge smile I am rewarded with when I pick him up brings a glow to my heart. It still doesnt get rid of the pain knowing Birmingham looms next week and I again have to put him through the nightmare EUA.
Lets hope cancer has seen my angry face and decided to stay hidden again!
I must spare a moment to think about a special little girl called Beth who has just been diagnosed with ALL, acute lymphoblastic leukemia. I have become friends with her mum on twitter, she too writes a brilliant blog. I know she will be well looked after as she is on became ward harry was on in Manchester childrens hospital. I hope her journey to remission and beyond is straightforward and as painless as possible. Massive hugs to beth and her family @-}--
I shall end on a classic Matthew saying. With my hands full feeding harry his lunch, I asked Matthew to pick up a few crisp crumbs William had dropped before they got trampled into the carpet. Fully expecting him to say 'i have to do everythinggggggg' I was surprised when he retorted 'what do you think I am, your personal Hoover' har har.
Thursday, 30 August 2012
But for some, why? just never gets answered. It just makes more 'why's'
Like why has Harry got cancer? and why will he have a lifelong struggle to cope in a world made for fully sighted people?
And for my friend Lisa, she has the most painful thing a mother ever has to do on Sunday, she has to let the angels take hold of her tiny baby and carry him to heaven. She never got the chance to feel his breath on her cheek, to feel his fingers curl round her finger, to feel the warmth from his love and why??? No-one will ever truly know, and it will be something Lisa and her family will ask for the rest of their lives. All we can do is love them and hope they can somehow get through it. Why?? Because they have to.
I posted this on facebook, I can feel their anguish but in a different way. Harry is still with us, fighting the awful 'C' word, Shea never got the chance to fight. It doesnt mean he is loved or thought about any less.
For Shea Joseph Leddy, who will tomorrow set out on his journey to the place where, on Sunday, the angels will wrap their wings round him and cuddle him into heaven. Sending love to Lisa, Gerard, Daire and their family as they prepare to do the hardest thing no-one should ever have to do. Stay strong xx
When God calls little children to dwell with Him above,
We mortals sometimes question the wisdom of His love.
For no heartache compares with the death of one small child,
Who does so much to make our world, seem wonderful and mild.
Perhaps God tires of calling the aged to his fold.
So He picks a rosebud, before it can grow old.
God knows how much we need them, and so He takes but few.
To make the land of Heaven more beautiful to view.
Believing ths is difficult, still somehow we must try.
The saddest word mankind knows will always be "Goodbye".
So when a little child departs, we who are left behind,
Must realize God loves children, and
Angels are hard to find.
I also send a thought to my friend Hayley. Those who regularly read my blog may remember last year I posted about her anguish at having to say goodbye to a baby she too never got to see grow up. She will be induced tomorrow and hopefully she will safely deliver her baby boy, he will never replace the little lamb she lost but I send her and her family love.
And I will finish with a few why's.
Did my car finally pass its MOT at a cost of 300 squids then sound like a traction engine moments after leaving the garage?
When I mentioned it to the mechanic he then informed me my car was mis-firing and sounded like it was running on 3 cylinders rather than telling me in person when I picked it up?
Will my 'Clic Sargeant Social Worker not return my calls?
Has Harry got cancer, its not beeping fair?
Is Emmerdale so rubbish?
Is falling asleep on the sofa the snuggiest sleep?
Does Harry keep on filling his nappy at 5am?
Does William demand sausage and chips at every meal time? (he doesnt get it lol)
Do children always need a wee at the point of wetting themselves?
Do children always ask why?
Is your mum always right?
Does no-one just call to visit when your house is showroom spotless?
Does someone need a number 2 the minute the bathroom is scrubbed to cleanliness?
Does your toast or fish n chips never taste as good as someone elses?
Is never leaving the pots til morning the good idea it was the night before?
Does the wi-fi crash the minute you sit down to check your facebook and twitter? when you get that rare minute to yourself that is
Does someone else always win the lottery?
Does the ground never open up when your child drops you in it or says something toe-curlingly embarrassing?
Does your sponge cake never look like Mary Berry's?
Is line dried bedding the most delicious thing in the world?
Has Harry got cancer? Oh I already asked that, but thats one 'why' I will be asking forever. Why oh why indeed, what did he ever do to deserve it. Why?
Tuesday, 21 August 2012
We were all excited for Lisa as she had 2 and a bit weeks to go til the birth of her second little boy, but sadly yesterday she went to get reduced fetal movements checked and was given the devastating news her little boy had passed away.
We all feel numb for her, we all cannot imagine what she is going through. It flashes me back to just before Harry was born and I noticed he wasnt moving, I was lucky and Harry was born safe. What Lisa must be feeling this morning as she returns back to the hospital to deliver the baby, knowing she will never hear him cry.
People will offer words of comfort but nothing can help the feeling of loss she will have. Losing a baby at any stage must be hard, but knowing you were almost at the end must be really hard.
Please have her in your thoughts x
An angel never dies
Don’t let them say I wasn’t born,
That something stopped my heart
I felt each tender squeeze you gave,
I’ve loved you from the start.
Although my body you can’t hold
It doesn’t mean I’m gone
This world was worthy, not of me
God chose that I move on.
I know the pain that drowns your soul,
What you are forced to face
You have my word, I’ll fill your arms,
Someday we will embrace.
You’ll hear that it was meant to be,
God doesn’t make mistakes
But that wont soften your worst blow,
Or make your heart not ache.
I’m watching over all you do,
Another child you’ll bear
Believe me when I say to you,
That I am always there.
There will come a time, I promise you,
When you will hold my hand,
Stroke my face and kiss my lips
And then you’ll understand.
Although I’ve never breathed your air,
Or gazed into your eyes
That doesn’t mean I never was,
An Angel never dies.
Sunday, 19 August 2012
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.
Friday, 17 August 2012
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
Sunday, 12 August 2012
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
Wednesday, 1 August 2012
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.
Saturday, 21 July 2012
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!
Sunday, 8 July 2012
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
Wednesday, 4 July 2012
Friday, 22 June 2012
He's turning into a real cheeky chappie, his laugh is so infectious and he's developing a real sense of humour, mainly being told no eg for biting and laughing and going straight back to do it again. He and William are starting to play together, although William is a little rough sometimes and his favourite game is piling all the cushions on top of Harry. Harry laughs hysterically but he's not too impressed with William thinking hoods on hooded tops are for yanking on and pulling him over, to which William laughs hysterically. I must admit I smirk a little as I tell them no and to play nicely, hearing them laugh together is magical.
William, I've mentioned before, has got a squint or lazy right eye. Until we had the genetic blood results back we were convinced he had Rb too, (its a classic symptom) but at one the of the screening visits the eye people in our local hospital suggested we get on and correct it, rather than wait for him to start school. This was great seeing as normal referrals at school age take 12wks to come through.
There was one thing that stood in the way, they needed to find out if he was long or short sighted before deciding on corrective action.
William needed an awake EUA as I call it. Basically the same nasty eye drops to dilate the pupils to saucer size then an examination of the lens and back of the eye. His first 2 ended disastrously, unco-operative being mentioned on his notes. The last one, the lady doc, who was very nice, suggested we leave it 6mths til he's a bit older. I wasnt holding much hope, but on Wednesday morning I took him. Marlene our lovely Rainbow Trust worker looked after Harry, the other 2 were at school.
William cried at the first set of eye drops, but after a little talk of him saying he's a big boy not a baby he became the most co-operative child you could wish for. He sat and let them put more drops in without a grumble, then sat for 20mins completely still whilst the lovely lady doc examined him. She said afterwards, when she saw William's name sh thought, oh no not again. She was impressed, I was impressed and really proud of him. Anyway, his left eye has perfect vision but his lazy right eye is quite longsighted so she prescribed glasses and said these should correct it without needing patches. I can't imagine William keeping glasses on, but we'll see. But the best bit, his retinas are completely clear so we can rest easy his squint is just a squint.
We went to the opticians and he chose the ones he wanted straightaway, good taste William, as the cute little green ones would have been my choice too. He's asking for them daily but when we actually get them I wonder how much fun we'll have keeping them on or not breaking them.
Matthew enjoyed his sports day, and the weather was lovely for once. I don't think he will be Olympic 100m champion but he took part. They did everything as a team thing so no child felt they were coming last at any point.
William ran in the pre-schoolers race, and despite doing 2 false starts he legged it down the pitch and won, unfortunately he didnt stop so I had to leg it after him. Matthew and his class were chanting his name and he was so proud of his little brother. I am so lucky (not tempting fate) I have children who love each other and play with each other, with only the occasional falling out. I am so lucky I have been blessed with my beautiful children and I cherish them dearly xx
Friday, 15 June 2012
Harry goes to Birmingham on Sunday for his next EUA on Monday. I am really hoping for great news. His fellow Rb warriors have all just been to London and they ALL got clear stable visits, way to go Kyle, Owen and Lillia. Lets hope Harry doesnt spoil the applecart. He's loving the new crawling lark, when he starts speeding up he justs drops onto belly and commandos at top speed. He's now got 4 of his back teeth and now the fangs are just starting to break through. His teeth are like piranha sharp razor blades and he thinks its hilarious when you say ouch as he sinks them into your shoulder. I have to put him down to stop him coming back for seconds. His latest cute trick is to rub his eyes if you say 'are you ti tired Harry'
I put him into the highchair yesterday for the first time. This highchair was Matthews and its brill as it reclines if your little cherub falls asleep whilst eating. Something William has done often.
So much to the disgust of William who still uses it I put Harry in. It drowned him, he looked like a little baby but he was so cute.
If you get a chance, read Rachels blog post about the Gerbil/Hamster funeral. Its so funny, I thought the comment from one pupil to say sorry for your loss but get a dog next time cos they live longer was hilarious. Har har
Sunday brings my niece Chloes 18th Birthday. She is Rachel's daughter and really bonny and has just finished her A levels. I hope her hard work pays off and she gets the grades she needs and deserves to go to uni. I simply cannot imagine little Chloe, with her pigtails and red dungarees, being old enough to go to uni. It only seems 2 minutes that I used to steal her out of her cot and snuggy her in bed with me. It also means I have to miss her party because of shitty cancer as I will be travelling down to Birmingham with Harry. Grr.
I will finish with a request for you all to spare a minute and send love, hope and good wishes to Harry's sweetheart Violet and her family. I hope they can find some firm ground soon so they can step out to wherever they need to go. Big harry hugs xxx
Thursday, 7 June 2012
Anyway, like me Mellissa firstly is finding it hard to come to terms that one of our children has cancer. We nurtured and carried them for 9 months, and although I only had 11 weeks until diagnosis, we looked at our perfect little bundles, completely unaware what was round the corner.
I have written in an earlier blog post, that life is now like living in the Hampton Court Maze, we've been dumped right in the middle of it and trying to find a way out. Sometimes the pathways will be clear, sometimes there will be many twists and turns and as the hedges are so high we do not know whats round the corner.
Mellissa and I are both in the same boat, once Kyle and Harry are clear from this awful cancer (and I pray that time comes round quickly) we will still have the what-if worry that they are both at an increased risk of developing other cancers, melanoma, osteosarcoma, soft tissue sarcoma being the highest risk, and although the risk is probably quite small it will always be there. It doesnt help my neurotica, any ache or pain and I will be frantic with worry. We can thank their faulty Rb1 genes for that.
I've never met Mellissa or spoken with her, but we regularly exchange texts and facebook messages and know we can rely on each other for support, especially when we go for EUA's. The message of support bumps you up and makes you realise you're not alone. I really look on her as a good friend, like someone I've known for ages and I value her support greatly.
So Mellissa, remember you're a fantastic mum, you have beautiful children who are a credit to you. Children are who they are because of their parents. Yes, life is unfair and we have both been dealt a bad hand but together we can join those hands and try and win this game. Our children may have cancer, but cancer will never ever have our children. Whatever is round Kyle and Harry's corner they will have us to help and guide them and they will never be alone. And you will never be alone, you have me x
Tuesday, 5 June 2012
We've celebrated by visiting grandparents - Matthew was totally gobsmacked that his grandad could remember the coronation (he was only 3, same age as Prince Jugears Charles) as that was in the olden times and as Madeleine commented people only wore black and white in those days. Snigger har har. Madeleine also wanted to know why she wears normal clothes as kings and queens wear crowns and cloaks. Isnt childhood innocence sweet.
We also went and joined in a mass gathering at ... Asda. We took along Miss Rachelradiostar. We bumped into some wonderfully lovely friends of mine. Sue and Sam and their daughter Jen. Sue and Sam are foster parents, who fostered my best friend from school, and I spent so much time with them I could easily call them mum and dad too lol. I loved helping out babysit all the cutey cuddly babies and kids they fostered. They made a massive difference to each of those kids lives. Whats coincidentally weird, is that my nephew Phelton is dating a girl called Amber who they fostered as a young tot too. Jen has an unbelievably cute little boy called Daniel, who was sadly for us with his other grandparents.
So a big hiya to you all cos I know you will be reading this xxxx
So we havent really done much to celebrate, there's been no street party where we live, mind you we live in quite a remote bit of the village and it wouldnt be much of a party, unless the sheep and cows were happy to join in, so we watched the concert last night. It was quite good really, don't think the Queen was into much of the music, and the grand finale was a big let down in my opinion, Sir P McCartney should remember he is a has been and hang up his guitar. Even Matthew commented on what a bad singer he was. Had it been Britains Got Talent, am sure 4 red X's would have sounded out. The fireworks were good, pity they couldnt have made it into the olympics opening ceremony, I dread to think how many millions of pounds were blasted into the sky, and how many more will come in July. Bah humbug lol
What will the next jubilee be, asked Matthew as he dragged his tired wee leggies into bed. Erm, 70 years I think, and he replied with, well she better enjoy this one as she's old and will probably be in the stars for the next one. He was then re-amazed as his grandad would see 2 coronations. Ah bless. He also thinks its cool to be a king or queen as you have 2 birthdays.
Well just under 2 weeks til we go to Birmingham again, this time Harry and I will go on our own. Danny cannot get leave and as its Chloe's 18th birthday the day we go down Rachel can't come either. So we will miss Chloe's celebration. We better get good news to make up for it. Harry seems to have come on leaps and bounds, although he lost a bit of weight when he was ill, he's got his appetite back and loves crawling around and standing up at the settees. We've even had a couple of cruising steps. I laughed with the physio as I said I bet the next time you come he's running around. At this rate I can't see why he won't be, his VI teacher told us he will have a problem with depth, ie going downstairs will be really tricky, so maybe when he comes to set off, if his eyes cannot judge properly with what vision he has, he may be unbalanced and fall often, so thankfully he's a determined little thing and will keep going til he's cracked it. Its so easy to forget he is 17mths old, the others were all running at this age. He's still little, but he must have grown a little cos he is wearing some 9-12mth clothes, whooppeee
Enjoy the rest of your jubilee day, x
Monday, 28 May 2012
Matthew turned 8 on Saturday. I cannot believe how fast the 8 years have gone. It doesnt seem 2mins since he was the tiny premmy baby with tubes in neonatal special care (or since I couldnt sit down for nearly a week following the god awful delivery I endured) I can still hear my loving sister demand 'for gods sake sit up and open your present' some few hours after Matthew was born.
Matthew soon caught up and he's now a tall long legged skinny bony lanky lad.
Harry is too catching up a little, he's loving pulling himself onto his feet and I think he's grown a smidge as the 6-9m clothes are looking a little snug. He gave us a fright before, he has a habit of sitting forward in his chair/pram and crashing backwards banging his head. Why? I have no idea but today he was strapped in the buggy to keep him safe whilst I sorted tea. William was strapped in the highchair to keep him out of mischief when I heard a loud thud then screaming. I ran into the lounge and Harry had managed to tip the pram over backwards. Daddy paramedic checked him and he seemed unhurt, probably shock of going down or he'd really banged his head but it certainly gave us a fright. Don't think we'll be putting him in there again to keep him safe lol
As promised I have got a few updated photos of him, enjoy xx
Thursday, 24 May 2012
One by one my little ones have sucuumbed to the awful vomiting bug (with me having a go too) and I am at my wits end. My washing machine is at its wits end and thank god the sun is shining cos my tumble drier is broken, it probably had a vision the bug was coming and shut itself down!
Harry is suffering, he was sick on Tuesday, and seemed to be a bit better by wednesday, taking a couple of small bottles of milk. With daddy away on a boys camping trip, I decided to treat myself to a fresh line dried bed. Having had a rubbish sleep the night before with all of us (except daddy) ending up on the sofas I was looking forward to a blissful nights sleep.
Harry had other ideas, and at midnight bang on was sick, so full clothes and change, a quick cuddle and I dived back into bed. 20mins later I was again treated to the sound of child throwing up, great. Repeat of the change situation a longer cuddle and back into bed.
Third time (and I was a tad peeved now, not at poor Harry who was obviously a bit distressed now, but at the sodding virus that dare sneak into my house and infiltrate my children) and once complete change of everything was done Harry now didnt want to go back to bed. He was crying and knowing he would wake up the others I sat and cuddled him. Now despite the nice weather, it is still freezing at 2am, so I swathed my bed in towels and snuggled him in, preparing to be covered in sick which thankfully didnt happen and we enjoyed a couple of hours snuggle.
He kept hold of the 4th vomit til 10am!!
The other 3 have all asked for food as normal and showing no signs of relapse hooray, but poor Harry is refusing water had a little milk and looks unbelievably sad. The last time I saw him looking this sad was when he was really poorly with septicaemia.
This bug better vamoosh and quickly.
Must add a sad footnote and ask you to think of Niamh Curry's family at this awful sad and tragic time. Niamh had Stage 4 Neuroblastoma and sadly she relapsed in November 2011. Her family were desperatly trying to raise the £450k to send her to the USA for treatment (which is not available in the UK nor is funded by our marvellous government) but sadly a few days ago Niamh lost her fight.She is now a beautiful angel who has touched the hearts of thousands on twitter and facebook.
This is another child who was sentenced to die by our government. If the only lifesaving treatment is in another country then they should pay for it. They spend enough money on sending aid abroad (now I am no way saying I do not agree with this or that the poor countries shouldnt be helped so don't shout me down) but when children of our own country need help surely they should take priority. It makes me soo angry.
World Retinoblastoma Awareness week was a success and if any child can be helped from it then all the better. I suppose I should be thankful Harry has one of the most treatable forms of childhood cancer, but it doesnt escape the noose he has round his neck for avoiding secondary cancers, I would love to strip him down to vest and nappy and let him kick his legs in the sun, but we've been told he has to avoid the sun, skin cancer is one that he could get. I really hate cancer.
Sunday, 20 May 2012
Well, sorry for the lateness of this blog. Just thought I'd drop by and fill you in on Harry's latest visit to Birmingham.
Thursday dawned fine, and believe it or not the taxi was bang on time. We had a good run down and made it in 2hrs, thanks to a clear M6 and the drivers lead heavy right foot.
The hotel yet again had a bed made up for Harry, but this time they just swapped it for a cot.
One which Harry wasnt too impressed with, and I'm certain he knows fine well where he is as he point blank refuses to go to sleep. He grunted and groaned and after much effort managed to get his little fingers over the side and then in a grab and pull move he was on his feet. I took a quick snap and apologies for the poor quality, but his grumpy face was just too cute.
We had lots of snuggles before he finally drifted off to sleep.
We went across for 8am, as we are instructed to and the list is usually done in age order, youngest goes first. Now I knew the day would come when Harry would have to give up first place, and this time there were twins 2mths younger, so they went first. Great Harry would be next, now he was really grumpy as he was obviously missing his brekky. But no, 3yr old went next as they had a flight to scotland (get a later flight grr) and between this at half ten a couple wandered in with an 8wk old. Now tragic as it it that this little baby was diagnosed with retinoblastoma, but if they were being added to the list at a late point, surely they should go last. But no, we will fit you in and in before Harry he went. Harry finally made it to theatre at lunchtime. He was pissed off, I was pissed off and I bet the rest of the room was pissed of as I couldnt stop him shouting and screaming. I couldnt go out as he'd already been made ready, so tough.
I went for a coffee and 20mins later I came back, Harry's in recovery I was told. Now you can take the quickness of his EUA either way, he's not had any treatment cos there's nothing new or he cant have any treatment cos its too big to treat.
His consultant came and found me and dared comment, I've already looked for you once. Excuse me but I've been stuck here since 8am, Harry has been shunted down the list and I needed a drink. But FABULOSO Harry has nothing new in either eye this time. Its so lovely to hear this. Back in 4wks again.
I met the new RB secretary who starts on monday, so at last I might get to know when my next appt is a bit sooner than a week before. I always have to ring, they must assume I can put my other 3 children into a cupboard and just come down at the drop of a hat.
We set off home, and it was a driver I've used a few times. Except this time am sure he nodded off as he nearly took the side out of a van and careered across the lane where a car thankfully could move out of the way. Was so glad when we pulled up at home. Can there be one trip that actually goes without any incident.
I apologise to all his loving adoring fans but Harry is now betrothed to the beautiful Violet. She is a perfect 2mths younger than him. She had her EUA last week and thankfully hasnt got Rb, but the doctors and her mum are concerned something else is amiss and are going to do more tests. I send out heartfelt prayers to her and her family as they set out on their journey. I hope they get some answers soon x I hope the baby pre-nups can get to meet each other very soon x
Well will sign off now, my first baby only has 6 days to wait til his 8th birthday. As he had such a crap birthday last year due to chemo and all that jazz, he's going to have a better one this year. He's already been to the cinema with his biggest cousin, must remember to sort his cake. Happy reading and see you soon xx