Saturday, 7 September 2013
Anyway,the fantastic charity CHECT (Childrens Eye Cancer Trust) had organised a family day for the northwest region to be held at Blackpool Tower, with a trip to the circus. I jumped at the chance to get tickets. I thought my littlies would have a fantastic day out and it would be great to catch up with other Rb families.
I wasn't wrong, it was a fantastic day. It was organised brilliantly, and we were given the run of the Tower with access to all areas, courtesy of Merlins Magic Wishes.
The day kicked off with a superb lunch and a chance to meet the Chect Champions. These can be a child with Rb or a family member, someone nominated by a Chect family member.
Thinking hard, and casting my mind back to the hardship we suffered whilst Harry was on chemo, I decided not to nominate Harry, but to nominate Matthew.
He has been a tower of strength for the others whilst I've been absent at the many hospital appointments, put up with disappointment after disappointment as Harry's treatment and illness came before many plans we'd made for him and still he managed to smile and love and protect Harry, basically being the best big brother any child could wish for.
A couple of children with Rb received their awards and Matthew selflessly asked, 'When will Harry get his?' You can imagine his surprise when it was he and not Harry who was called forward to receive an award. I was bursting with pride, as the guy presenting him with his award said 'a true Chect champion'
Don't get me wrong, I think all my children are champions, and each deserved to win an award, but a teeny bit of me was secretly thrilled that Matthew won one, it always seemed to be him who missed out the most.
He was even more thrilled when his name was announced as a Chect champion during the circus performance. Well done Matthew.
Now for those of you who don't know the tower, its a rusty looking miniature version of the Eiffel Tower, situated in one of the most outrageous towns in the UK. The children were amazed at the sights, they couldnt believe grown men were walking round dressed as superheros/ladies/babies/animals .... Anyway the tower is the main landmark of the town, it houses the famous Tower circus and the Ballroom, as featured in Strictly Come Dancing.
Here's a pic of the tower.
After the lunch and presentations we took the lift to the top of the tower. Before we got there, we were allowed to see the 4D cinema experience (unfortunately pretty useless to people with Rb, especially those with enucleations)but it was en experience all the same. It was the first time mine had experienced 3D, (the 4d part was water and wind sprayed at us) and to see them reaching out trying to touch was funny, and to see them cower and move out of the way as it was soo real when we seemed to be plunging into the sea, or the spike of the tower top looming out towards us was funny too.
They seemed nervous about stepping out onto the top platform, especially the clear platform that makes it appear you're suspended in mid air but that was gone in an instant when they stepped out of the lift door. They were amazed and fearless
We then spent a wee while in the penny arcades before going into the circus. You can imagine my despair when I found out I couldnt take Harry's pram in. How on earth would a 2 year old sit still for the whole performance. I neednt have worried, he was an angel, as were the other 3. They loved every minute of it, laughed at the clowns, looked on in amazement at the acrobats and were rewarded with one of the exorbitantly priced neon flashing toys and a tub of ice cream. But to see them happy, was reward enough for me.
Now my title referred to Champions, and Matthew was awarded a Chect Champion award. But to me each child there,and every other child with any type of cancer, whether dealing with Rb or the cancer or just a family member is a champion. Cancer whooshes into your life like a hurricane and rips everything you knew as normal into pieces. It devastates the life of the child dealing with it, they suffer massively from the actual cancer, its treatment and after-effects. It devastates the lives of the families of that child. Being helpless and not in control of whats going on, looking on as you watch them endure the painful treatment, pinning them down so they can be punished with something that is trying to make them better. Seeing them as they look at you and question 'why mummy?' and not being able to answer them. Seeing updates from people you met where their child was taken by the angels, all of it devastating.
So as September is Childhood Cancer awareness month for the US, I think every minute/day/week/month should be awareness time - worldwide! Children don't stop getting cancer just because its October or March and people should be aware of symptoms year round as early diagnosis can be the difference between life or death.
Dont assume it happens to someone else, as I can assure you IT DOESN'T. It happened to us. Our hurricane whooshed in, and we are still feeling the after shocks from the storm. They won't ever go away, we are just learning to deal with it a little better. This month marks the 2year anniversary of the end of Harry's chemo. Some people assume that as chemo is finished, the cancer is beaten. In some cases it is, in Harry's it isnt. Each month he remains stable is fantastic and the older he gets the risk of new growth reduces as retina growth slows down, but EACH time he grows a new retina cell, it could be a cancer cell. Thats why he still goes for his EUA's so often, thats why he is put at risk of general anasthetics so often so we can keep a check on it.
Thats why the meet ups and facebook groups are so important to us, we are like one huge Rb family. We all know what each other is going through and they are a fountain of knowledge and support. Wikipedia can put it in black and white what Rb is, but its the 'realness' that helps more.
I posted the following on our Chect facebook page. I just thought I'd share it with you..
Everybody hates Rb and wishes beyond wishes that it was never part of their lives, me included. But I was brought up to always look on the bright side and look for the good in anything, so if there is any good in life with Rb it has to be...
1) I would never have met such wonderful people like you. I can speak my mind 're Rb and you all know how it feels.
2) if I had to choose a cancer then Rb is probably one of the "better" ones. Survival rate and quality of life beyond Rb is at the higher end of the scale.
3) Rb is rare, only 30-40 cases diagnosed each year. Harry being diagnosed saved one family from having to suffer. I would never wish it on him and I am not glad he has it but I am glad another family does not have to suffer the anguish.
4) I would never have met such wonderful ppl like you.... Oh I already said that
Ok there isn't much to be glad about and there isn't really any bright side to Rb and I cannot help fretting over the next EUA and I wish I could stop playing the 'what-if' game (what-if he's not stable any more, what-if he loses an eye etc) but our lives were dealt this blow and deal with it I must. I am just so thankful I have the wonderful support of you lovely folk, as to know you're not the only one makes your journey just a little bit easier.
I am going to love you and leave you. I have a zillion labels to sew in new uniform for their new school, I'll blog about that another day xx
Wednesday, 28 August 2013
Lets look at some of the pros ...
I love the fact there is no school runs to do, and the fuel costs I save are brill.
I get to have MY children all day long. Why should school see them more than I do? Did they go through the agony of childbirth and sleepless nights? I didnt do all that just to see them for a few waking hours a day.
I don't have to iron school uniform.
Meals can be eaten when and where we like.
Reading is for fun than a chore.
Times tables ... erm what are those again?
I can plan a day out without thinking 'i need to be back for 3 to pick the kids up'
The kids start talking about Christmas as thats the next big event on their horizon (plus kids TV is inundated with toy adverts)
Okay so there must be some cons..
The savings I made on the fuel costs are obliterated into a loss making position through the constant trips to Asda to stock up the cupboards. The kids graze all day long, state a zillion times a day that they're starving and just eat constantly.
The smug smile I had on my face at the beginning of the holidays (as I got to the school uniform stands first and got everything ready) is wiped off with a flourish as nothing will fit as they have grown in gigantic proportions due to above constant grazing!
They talk about Christmas.
There are only so many rainy day activities before the words 'I'm bored' are uttered.
I get to iron piles of non uniform stuff.
I start to wish the kids back to school as they are in dire need of getting back into a routine.
I cannot be in four places all at once.
It sounds like I have lots of cons but to be honest I love having my children with me. To be able to see them smile and listen to them chatter (and bicker) is wonderful and I am so thankful I am a stay at home mum that even on the days they are at school I have them with me up to the minute the school bell goes and from the minute they are let out at the end of the school day. I cannot imagine not seeing their face break out into a smile just for mum when they see you as they come through the school door.
This 6 week holiday is tinged with a little sadness, as I have to let another angel go to school. William is so excited to be going to big school, he has only been 4 for a couple of weeks but he's such a little character I don't think he'll struggle too much with children who could be nearly a full 12mths older than him.
But love em or loath them it is one of 3 things in a childs life they can't wait for. Birthday, Christmas and 6 week holiday. And to deny them one of these would be downright cruel. Lets hope the bigwigs don't get their way and the 6 weeks hols are here to stay.
Wednesday, 14 August 2013
Harry had his latest EUA on Monday, and I am delighted to report he is still stable. That is almost 12months of stableness and a huge step up the ladder in his journey.
It doesnt by no means mean he is out of the water yet, although the longer the period the less likely he is to grow new tumours. This is because the rate of retina growth slows down hence less cells being grown equals less chance of new tumours growing instead. But it doesnt mean we can rest on our laurels, as each time he ever grows a new retina cell it still has a 50% chance of being cancerous, and I have come across several, no many families who had a long period of calm before trouble started again and treatment/enucleation was back on the books.
So I still take each visit as it comes. If we get a stable visit, its a bonus and we're all happy. If we don't, then we will deal with it in whatever way is necessary.
I was blessed with some fantastic company on this trip to Birmingham. My sister Rachel came, and we had William too. Nanna and grandad were bursting at the seams and there was no room at the inn for William. He was an absolute treasure and behaved immpeccably. Both he and Harry slept pretty much all the way down to Birmingham, then again all the way back.
We were given the largest room in the hotel as we had 2 children.... THAT IS A BIG FAT LIE. I couldnt even swing a whisker never mind the full cat, despite me asking if it was a large room. Think the receptionist needs to recap on her area and volume maths as her concept of large was anything but. But we settled well, the kids had tea at the big yellow 'M' place, we had healthy butties and snacks from a less large 'm' place aka M&S. The kids played well in the space they had, enjoyed a splish splash (Rachel clearly out of touch in preparing baths as the water was a little chilly lol) but better that than too hot. Bedtime dawned, and both seemed determined NOT to go to sleep. Harry sang through his entire repertoire several times, threw his dodey and blankie several times and eventually gave in. William pointed out, through half closed eyes, that he was not tired at all. 9.30 he gave in!! He was sharing my bed, or should I say he had the bed and I had a six inch strip on the edge.
Monday morning came and we trotted of to the ward. Obviously Harry is getting lesser and lesser impressed and cooperative each time we come, and his distress at having just his hospital bracelet on was hard to see. He sobbed and sobbed and demanded to 'take it off mommy' So it was cut off and put in my pocket. Having pinned him down, prised his eyes open to put them awful drops in made the poor student nurse think twice about doing his obs. 'I think we'll leave them till he goes to theatre' she said. Wise move lady, I dont think she could take any more of Harry's pleading cries to stop.
And we still had the joys of the anaesthetic to come. Harry was third on the list. And anyone knows, the earlier you are on the list is a godsend bonus cos you can escape and be back on the M6 well before the traffic has any idea of getting to be non-moving.
So third wasnt too bad. Harry has huge blue eyes, and apparantly blue reacts better to the eye drops and dliate much quicker, so after 20mins you could barely see any blue, just huge black pools.
We were sent down to theatre and we thought, 'ooh we could be second here' has the boy who should have been second hadnt been booked in properly, and had only just had eye drops put in and as his eyes were dark brown wouldnt react quickly enough.
So you can imagine the raptuous joy we felt when the anaethetist called Harry's name FIRST. Yes you did read that right FIRST. To the obvious annoyance of the parents of the younger child (lists are usually done in age order, youngest to oldest) I trotted off with him and this anathetist was brilliant. He must have read Harry's notes before as he put Harry in the biggest blanket and wrapped him so tightly he could free his arms and legs so he couldnt struggle against the mask. It normally takes 4 of us to pin him down. So it only took a few minutes and Harry was asleep. I hope he is at every EUA in future.
The consultant said' I've brought Harry down first as I am soo confident I will just be looking today and not treating' and he was bang on right. Fantastic news was given that all was still stable. Hip hip hooray
There is always a little downside, just to clip your joy a little. He intimated that I should be researching schools that cater for visually impaired children, and that may not necessarily be the mainstream school I would want him to go to. I smiled sweetly and nodded along but thought 'you can sod off matey, he will go to mainstream school or no school at all'
But anyway, we are still cheesey grinning pleased. The journey home was fairly quick, we luckily just scraped past a 5 car smash incident before the cops shut the road. Thankfully noone appeared hurt, the cars didnt get away as lightly. Rachel talked all the way home, think I nodded off snigger, but the driver got some directions to some excellent farm shops to buy some delicious fayre for his tea.
Thanks for coming Rachel and being great company.
I compiled a little photo shoot for Harry, I hope the link will work. Enjoy it, the star of the show will make you smile, I guarantee.
tsk tsk you will have to copy and paste it grr
Fondest love to you all as ever xx
Tuesday, 6 August 2013
Well it's been 4 years growing the little baby to the bundle of mischief and he's been desperate to get to today. William turned 4 in the early hours of the morning and he is glad to see the back of being 3, cos it's rubbish so he says.
I cannot believe where the past 4 years have gone. William didn't really get much of a break as a baby, he was only 18myths old when Harry was born and he lost out to lots of mummy time as a young toddler because of me needing to be with Harry throughout his treatment yet William has grown and blossomed into a wonderful and clever little boy who makes me laugh daily.
Happy 4th birthday sweet William xxx love you so much xxx
Less than a week to Harry's next eua. William doesn't know it yet but he's coming with me again, but this time we will have hanty raychul with us, so I am sure it will end up as fun.
I don't know if fate is starting to raise its head, but Danny had tooth ache again (on the opposite side to last time) and yes I dared to suggest the dentist resulting in my head being bitten off. Must learn not to be so helpful!
Thursday, 1 August 2013
We made such good friends we have our own Facebook page and we've been there for each other through thick or thin.
They were amazing support when Harry was diagnosed with cancer, and although we'd never met in person, the bond between us all is unbelievable.
Anyway, I am dedicating this post to a beautiful girl from the group, also called Lisa who sadly, almost a year ago, went through the unbelievable trauma of carrying her beautiful boy to almost full term to find his heart had stopped beating.
We all drummed up love and support as she shared she was going to see the midwife as his movements had reduced, praying he was just being a lazy boy. We were all on tenterhooks until we received the devastating news that none of us were really expecting.
we shared our love and support with her, never really knowing if we were saying the right things but we knew she was going through hell, and was struggling to find a way out. She is still somewhere in the dark depths, I don't believe she will ever escape from it, but hopefully she will find a path that will make her journey a little easier.
Can you imagine having then to go through labour to deliver a perfect but sleeping baby. Never to hear those first cries, the warmth from their breath on your skin, your reward for 9 months of pregnancy and the strain of labour.
Imagine having to go to the registry office and register your baby's birth then immediately his death?
Imagine having to arrange a funeral for your baby?
Imagine life after all this?
Too often people scurry by, heads down not saying anything for fear of hurting their feelings. But this action often hurts more. It seems that the baby never existed, if you don't talk about it, it will go away.
But it doesnt. My situation is different, Harry is alive and well but he still has cancer and people will avoid talking about it for fear of hurting my feelings. But I am happy to talk about it, as is Lisa.
Shea Joseph Leddy was born sleeping. Beautiful and perfect, the image of his older brother with a mop of dark hair. He was real in pregnancy, real in childbirth and real now. Just because he is living with the angels does not mean he never existed. To Lisa and Gerard they became parents of their second son. They were dealt the cruellest of blows when Shea was taken from them, but he was still real, and still is. They will probably never understand why, we can't understand why and our heartache for our dear friend is a mere drop in the ocean of pain she is fighting against. But we are there for her.
I wrote this poem for her, it was just doodling really then it started to take form. I asked if I could share it, as Shea deserves nothing less than to be shared with millions. He would have celebrated his first birthday this month, but whether it would have been his first, or his 60th, the pain of his loss will still be there.
Shea Joseph Leddy born to the angels 23/8/12
A BIRTHDAY IS A TIME FOR HAPPINESS AND JOY
ESPECIALLY THE FIRST ONE OF A PRECIOUS BABY BOY.
BUT SOMEHOW FOR ME THIS CANNOT BE TRUE
ALTHOUGH I AM HAPPY IT IS DIFFERENT FOR YOU.
MY MUMMY AND DADDY YOU WERE CHOSEN ONE DAY
TO CARRY AN ANGEL IN THE MOST SPECIAL WAY.
YOU LOVED ME AND NURTURED ME AND DAILY I GREW
TO THE MOST BEAUTIFUL BABY, OF THOSE THERE ARE FEW.
BUT NOT GIVING YOU THE CHANCE TO SEE ME GROW TALL
MAKES PEOPLE QUESTION GOD, IS HE REAL AT ALL?
WHY WOULD A BABY SO PERFECT AND CHERISHED
BE TAKEN AWAY, LEAVING PARENTS HEARTS PERISHED.
BUT DESPITE ALL THIS HEARTACHE AND SADNESS AND PAIN
THERE IS STILL A BEAUTIFUL BABY WHOSE WINGS HE DID GAIN
GOD NEEDS ONLY ANGELS THAT ARE PERFECT AND PURE
AND SHEA JOSEPH LEDDY IS PERFECT THAT’S SURE.
I LOOK DOWN THROUGH THE CLOUDS AND CRY THROUGH THE RAIN
TO SEND YOU MY TEARS, THOSE LITTLE RAINDROPS ON THE PANE
BUT MOSTLY I AM HAPPY AND YOU SEE THIS THROUGH THE SUN,
THOSE HEARTWARMING RAYS, BEAMING DOWN WITH LOVE AND WITH FUN
AT NIGHT WHEN YOU ARE SCARED I LIGHT UP THE NIGHT SKY
THOSE TWINKLING STARS ARE MY TRAIL AS I FLY
THE FLUTTER OF MY WINGS SEND A GENTLE BREEZE
‘I LOVE YOU’ CAN BE HEARD IN THE WHISPER OF THE TREES.
SO MUCH I WISH THAT I COULD HAVE STAYED WITH YOU
AND DAILY YOU QUESTION WHY THAT COULD NOT BE TRUE.
IT’S A QUESTION UNANSWERED FOR NO-ONE REALLY KNOWS WHY
IT WILL NEVER GET EASIER AS THE YEARS WILL PASS BY.
SO EACH YEAR ON MY BIRTHDAY THERE WILL BE LAUGHTER AND TEARS
A CANDLE TO LIGHT, EACH ONE FOR MY YEARS
THAT I LIVE AS AN ANGEL, THOUGH WE ARE APART
THE LOVE BETWEEN US NEVER GONE FROM YOUR HEART
THIS FIRST BIRTHDAY’S SPECIAL, BUT THE HARDEST YOU’LL FACE
A WHOLE YEAR OF YEARNING, THAT MASSIVE EMPTY SPACE
THAT SHOULD BE FILLED BY MY LAUGHTER AND LOVE AND JOY
OF YOUR MUCH WANTED, AND LOVED AND PRECIOUS LITTLE BOY
BUT TO MY MUMMY AND DADDY AND TO MY SPECIAL BIG BROTHER
I LOVE YOU FOREVER AND THERE WILL BE NO OTHER
BABY THAT CAN BE LOVED AS MUCH AS YOU LOVE ME
FOR I’M YOUR HANDSOME LITTLE DARLING, YOUR BEAUTIFUL SHEA.
Wednesday, 31 July 2013
OMG that is so long ago and despite me vowing not to leave it so long, I've just gone and done it again. Completely unintentional, but I will try and do a 2 month update.
One reason I failed to blog in June was down to my OH. I usually enjoy the blissdom of him working nights so I get to blog away without interruption. But at the beginning of June he complained of toothache. He has a mortal fear of dentists, and I tried my hardest to be sympathetic but on it went.
Well after a few days his mouth started to swell and I tried to be helpful and suggest a wee trip to the dentist may be required, but he decided to smile (well half smile) nicely to a doc at A&E and ask for antibiotics whilst working a day shift. Said antibiotics were given along with some powerful painkillers, so hopefully the externally visible swelling could come down. Think its an abscess, said the doc. I'VE BEEN SAYING THIS FOR DAYS it may need draining said the doc. OH decided to see how the land lied at the end of the seven day course. Whilst trying to smile and be nice I was actually thinking FFS no FFFFFFFFS just go to the effin dentist. A mere suggestion of this resulted in my head being bitten off. Get on with it, but you better be better cos i am off Birmingham.
Sub header Birmingham
Last time we were told a patch looked a little different and it would be prudent to have him back in 4 weeks to check, just in case.
So here we were, 4 weeks later and off to Brum we went. Harry went down to theatre and I had several begging texts from OH to please ring the dentist for me, I am in agony. Its swelling up again. Alas poor OH (he is such a baby at speaking on the phone to anyone) he had to ring the emergency dentist himself. I sniggered a little.
Anyway, Harry came out of theatre, a little slower than usual, his heart and SATS werent playing ball but eventually Oxygen won and he woke up. Great news was the patch hadnt changed since the May visit so we can go back to an 8 week gap.
M6 journey north was plagued with 'feel-sorry-for-myself-texts' and I wasnt really relishing getting home, but home I got to the pathetic sight of OH laid on the sofa, the house in an absolute mess, the kids unfed and running riot. I was chuntering under my breath, really not that impressed thinking GOD WHEN I AM ILL I STILL HAVE TO GET ON WITH IT until I looked at him properly then OMFG. He looked like a grapefruit had been shoved inside his cheek. His face was so swollen and distorted it was unreal. OK I relented a little bit and felt a little bit sorry for him, BUT IF YOU'D GONE TO THE DENTIST A WEEK AGO LIKE I'D SAID YOU WOULDNT BE IN THIS POSITION!
HE got an emergency appointment for 8pm that night, so my mum and dad agreed to come back whilst I took him.
He went and dentist sent him to A&E as the xray showed up a large lower mandibular cyst, quite rare but in need of attention asap.
Well to cut a long story short, I left a&e at 3am!!! IV ANTIBIOTICS and fluids and a 3 day nil by mouth wait til finally he went to theatre, a 2hr operation and a cyst,wisdom tooth and abscess removed and drained.
In his week long stay I looked after the kids and visited him twice a day, when I'd had the kiddies I was lucky to get a single visit as he couldn't possibly look after children and visit me.
Anyway he was off work pretty much the whole of June. He was a terrible patient, and I swore to God if I heard him say "if you'd been through what I've been through" any more I would take the frying pan and smack it over his head. I was absolutely elated when he returned to work right at the end of June. We miss daddy said the kids often, I don't, I thought to myself lol.
Now Mr Riley was safely back in work, we had the joys of school dwindling to the end of term. Well in Matthews case he's had a pretty rubbish year3 and 4 and so I was looking forward to him moving into the top class where a strict teacher with good reports would await him. Madeleine played an excellent flower in her production and Matthew was a fab prop man in bugsy malone. We got their end of year reports, and shockingly Matthews had lots of grammatical errors and spelling mistakes in it. What made it more incredible was that his teacher had commented that Matthew needed to pay more attention to avoid silly mistakes. HAR HAR BLOODY HAR!
Well school then dropped the bombshell bombshell on the penultimate day, they had no idea who would be taking the top class. WTF!
After a day discussing why quernmore had gone down the pan we decided to make the tough decision and move schools.
They will all start at st Paul's in the village in Septem
ber. The pro's by far outweigh the cons.
1) we can walk it in 5 mins rather than a 10min car journey
2) I will subsequently save lots of money in fuel and thus be a more greener person
3) William will start school with his best mate
4) it has a better classroom structure
5) it is just better for the children
The main con is I will have to buy 3 sets of new uniform and the kids will miss their mates.
So the school hols have started with apprehension and excitement. A new start (and we weren't the only ones pulling their kids out of quernmore) we have enjoyed some lovely weather, had picnics and playdays in the park and a birthday to plan. William will turn 4 on the 6th August. It doesn't seem fair that 3 weeks later he will start school. Harry is back in Birmingham on the 11th August.
BIRMINGHAM, OH YEAH
just turn your mind back to the "patch" they referred to. Well it wasn't just a patch that had changed appearance. It was one of the large primary tumours in his left eye! I found this out from the follow up letter.there's always a surprise in there. We will see what happens on the 11th.
I had intended to post some pics but my laptop started behaving badly, and I thought it better to finish the post on my kindle.it's taken ages due to the stupid keyboard and one finger typing. So I will stop now and blog again real soon xxx love you all xx
OH IT DID WORK XX
Friday, 31 May 2013
Cannot believe daddy "do you know how many accidents I've been to involving trampolines" stood and watched the others bounce about and laugh hysterically. I love hearing my children laugh. Hope the weather lasts into the weekend.
On a sober note, 7 days til we find out if Harry is still in remission or if the strange patch on his left Eye has manifested into something nasty. I am feeling anxious....
Saturday, 25 May 2013
I was a mum of none, or technically a mum to be. I wasn't supposed to be in Labour as I still had 6 weeks to go til my due date but in labour I was.
Rewind a couple of days and I had just been to my first parentcraft lesson, labour wasn't really discussed but that didn't matter I still had weeks to go. The next day was my last day at work, I had saved all my annual leave so I was looking forward to catching up with loads of ppl before the baby came. The Sunday aft I went to the pub with Dan and it was really warm ( yes I know may at the mo is decidedly chilly) but I thought euwww I am really sweaty down below. Woke up Monday morn to Dan stating you have wet the bed!
Oh fan bloody tastic, my waters I thought so I rang the hosp and was told to bob down and get checked out. So down I bobbed, they scanned me and said o had plenty of water and go home but ring back next day if I still thought water was leaking. Next day (9yrs ago today) I rang back and said yup, still leaking. Bob down again they said, so down I drove, round the car park a zillion times for a parking space, 3hrs ticket cos I will prob be going home again and in I went.
The midwife was astounded I had driven and was told I wouldn't be going home cos a)my waters were deffo leaking b) my blood pressure was sky high and a c-sec the next day was probably likely cos baby was 6weeks early.
Cue some dragging of other half from ambulance duties to remove my car within the next hour so not to get a ticket, then go home to get my bag (cos I seriously thought I would be sent home again) and the wait.
Well only having the one parentcraft lesson I was a little naive in what the onset of labour would be like. Baby was back to back so the severe back ache that kept coming and going was because of that so I didn't mention to midwife or ask for pain relief, when it started to really hurt round the front I tried to breathe and sleep through cos I knew I would have the baby the next day anyway.
Anyway I gave in and asked the midwife for some paracetamol, ha ha so she politely asked why hadn't I mentioned I was in pain and thought it best to check me over first.
"oh my god you are 7cm dilated and you are only now asking for pain relief" !!!!!
Think she was a little shocked, well I didn't know I was in labour.
To cut the next part short, the time til delivery took ages as baby was back to back and not budging despite mammoth pushing on my part, I was tiring rapidly and 7am the next morning the consultant decided to extract one stubborn baby rapidly, no time for theatre I was for a while an extra in a slasher movie yuk, forceps went in (Danny nearly passed out) baby was turned using said forceps and then yanked out. Our beautiful tiny baby boy Matthew was born. I couldn't sit down for weeks, needed physio cos of the delivery and spent 2 wks in hospital with Matthew in special care but he was here safe.
What was funny, on my first outing into town so I could proudly push my lovely new pram I bumped into a fellow Mum from the parentcraft group who was still pregnant. She was a little jealous as she still had a week to go, I should have had 3.
Having Matthew put me into an exclusive group of special people called mummies. It changed my life and I love every minute of it. Having him so early and in such a horrific way in the end only made me realise how strong I am. I delivered him with no pain relief, had more stitches than a c-sec and had to watch him whilst in special care without being able to hold him. I would have beaten Mike Tyson any day to protect him and I loved being a mummy so much I went on and had 3 more angels.
Little did I know 9 years ago I would have to draw on that strength in the years to come to help one of those angels fight the fight of his life. 9 years ago as I gazed at Matthew something inside clicked into place and I knew that come what may I would do anything for my children. Nothing else in life would matter.
But sadly despite having the strength of an ox and wanting to do anything for my children I cannot take away Harry's plight but I will jolly well help him all I can, I will help all of them. It is my job as a mummy to make sure my children grow and achieve their maximum potential for as long as they need me. And as I still need my mum I don't think my job will stop any time soon.
So this time 9 years ago I was on the brink of accepting my new job, one that has the biggest reward package one that I wouldn't change for the world so I thank you Matthew for starting me on my new career path, and I wish you the happiest birthday you could ever have x
Sunday, 19 May 2013
Unfortunately I am not talking about a Jaws movie, if only it was just a matter of getting back in the water.
I am talking about Harry's roller coaster ride. Just when you thought it was safe to think Rb had done one. We have had quite a smooth ride for the past few months, there have been no dips or loop-the-loops and I suppose a touch of complacency slipped in. I was so used to hearing the words, all clear see you in 8 weeks. But this time we weren't to hear those words. Instead they have found a patch on his left eye that looks different to last time. It could be the way his eye looks, but why the change? Or it could be something evil and nasty brewing so we will see you in 4 weeks to check.
So the what-if game starts big style. And at the moment I am struggling a little, my heart and mind are in a tug of war, the sensible one is saying it will be nothing but my emotional one is saying it's something new. Why would his eye change? Something must be causing it. I know of a few children who had months and months of stability before it all started again and I pray Harry doesn't follow suit.
I have to spare a moment to ask you to think of Harry's little Rb warrior mate Owen bishop who after 2yrs ish of being stable, this week they found a new seed. Small and treatable but something new all the same. Well Rb you got your last look there cos Owen is too much of a tough little cookie!
But Harry's EUA wasn't the nicest, he played holy hell when we pinned him down to have his eye drops in. The poor student nurse who got the feet end must have been black and blue. I should have removed his shoes, sorry x as we were on the general day surgery ward the ppl in the next bed weren't Rb ppl and they looked a tad alarmed as 3 staff surrounded Harry just to put 4 lots of drops in. He really cried afterwards. Then the fun of putting him under the anaesthetic.
I carried, no wrestled Harry into theatre and along with a few members of the theatre staff held him in a vice like grip whilst they forced the mask over his face. I don't really mind him crying as it helps him breathe in the gas quicker, but the little heart breaker had us all in tears this time as after a few sobs, he took his dummy out pushed the mask away and said clear as a bell "I'm crying" before resuming struggle and sobs.
I can't imagine it will get any easier and now we don't have the luxury of an 8 week break to try and forget the trauma he goes through.
It was fantastic to meet up with macey and alfie, similar in age to Harry both diagnosed with bilateral RB. Macey did fantastic and got another all clear with existing tumours still in remission and her reward for this fantastic achievement, an 8 week break! Fantastic! Alfie however has been struggling to get his right Eye to behave and sadly his mum Rebecca had to make the heart wrenching decision to remove his naughty eye. I cannot imagine how she must be feeling. It is my nightmare and something I fear to the pit of my stomach that I should never have to do it but my love and hope goes to alfie and his family as the outcome is for the better good and the cancer won't be able to do any more harm from that eye any more. His left Eye is still stable and that's fantastic. Big hugs alfie.
So to round up our bad day, it got worse as we passed one junction on the motorway that could get us home and joined an hour's tailback from an accident that had only just happened. Fan bloody tactic!
Something good about May, Matthew turns nine next week. Omg how did that happen? It only seems like 2 mins since that tiny little monkey decided to make a very early appearance. He allowed me the luxury of one days maternity leave. He's been impatient ever since!
Wednesday, 8 May 2013
In other words, am very sorry again. It has been too long since I wrote a blog entry. Not cause I didnt want to, but for some reason time seems to have slipped away so fast we're in May already.
Anyway I promise todays will be lengthy.
I shall start with Harry. Much has happened since I last wrote. To set the ball rolling here's my little Harry blue eyes. Yes showing a RB trait but still so sparkly blue.
I posted the following on Facebook. It sums up a milestone for Harry nicely...
Omg I never shared this!!!!!!!!! Harry went to Preschool this morning with William. He gets 2yo funding cos of his special needs. His visual impairment teacher wad there as his 1to1 and he loved it. I was so worried about him being safe, but I have to learn to let go and let him find his feet in his own way. It's just hard accepting he may hurt himself but when I am with him I'm responsible for him and not having that control isn't easy to accept. BUT I am over the moon he had a whale of a time and he's chattered non stop about having a nice time at school and playing in the water. I wanted him to go whilst William is still there so he can hear a familiar voice whilst he settles in. They've had to change the whole room layout to accommodate him and they've had training in looking after him which is fantastic. All the other kids smothered him trying to look after him as they've been told he can't see much and they need to look out for him. My superstar Harry is on his first wee road to finding his independence, way to go little man. I am so proud of you xx
Actually its a major milestone for me too. The little girls adored him. Isobel asks daily if Harry is coming today. The school were keen to say he has 15hours paid for and I can add additional sessions. But I think my nerves will only allow the one at the minute. But I have to reiterate how wonderful it was to see him so happy. It would have been horrendous if he cried when I left him. I enjoyed a lovely hot coffee and did my housework in record time before I went to pick him up. It was sort of quite nice not to have to monitor him constantly but I didnt half miss him.
He's really come on leaps and bounds with his development. He seems to be catching up, but sadly not in growth. He went to the hospital for some investigations into why his growth curve resembles something more like a downhill ski run. They put on some magic cream to numb areas to take blood. He was none too impressed and cried.
We then went to x-ray. He went mental as we pinned him down whilst they took x-rays of his wrists and hands. His face was purple, covered in tears and gooey runny nose stuff and he screamed til your ears hurt. The poor radiographer apologised constantly, poor girl I bet she was glad when it was finished. Harry changed instantly back into the litte lady charmer he is at that point. He fluttered his soggy long eyelashes and cooed 'bye bye lady' in his uber cutee little voice. She melted when he asked for nice kiss, and offered his puckered mouth.
That soon changed when we went back for bloods. Screaming Harry again. I am so not looking forward to Birmingham next week. His reaction to all things medical gets worse. I don't suppose I can blame him.
These tests will see if Harry's growth system is working ok, if he has any disease or something that affects growth and I'm quite positive all will be ok, but I can't help feeling that his chemo has meddled with him. Cancer has already robbed most of his sight, if its robbed him of growth too then it better stay away from me!!
It will probably be donkeys years before we get the results. He is back in Birmingham for his EUA next week. It will be 9 and a 1/2 weeks since his last. Something I am nervously terrified about. They postponed his appointment by 10 days so they could accommodate 2 new babies diagnosed and on chemo. Good in one respect as they trust his eyes will have behaved so they could move his appointment, but bad for my nerves. I am already playing the what-if game. What-if there is something new and its beyond the remit of the laser, and 10days could have made a difference? Irrational I know.
I am friends with a load of Rb Moms on facebook, and they are amazing people with a wealth of knowledge having 'been there done that' but what is worrying is the number of their children who relapsed after months of clear visits. I cannot yet get my laurels out and will make do with resting on my holly leaves. A sharp nudge every now and then to remind me that Harry still has a long way to go before we can breathe that huge sigh of relief and rest into the aforementioned laurels and smile away that Harry has well and truly kicked cancers ass.
For now, he's still kicking and I will make do with that.
Away from Harry, we received confirmation that William will join his siblings at Quernmore school. He is very excited and asks every day if he can go. I hope he is still excited in September.
Matthew turns nine in a few weeks, I so cannot believe where that time has gone. He has asked for a real football and wants to got for a pizza with a few mates. Parties are not for him - he's far too grown up. Oh okay, I sorted the grown-up invites/sorry messages for his mates. He really is growing up - until he remarked 'don't forget I want a chocolate birthday cake and party bags' Not so grown up really.
He is really tall, his feet are a size smaller than mine. I've just had to kit him out with new shoes/wellies and clothes.
Madeleine wasn't wanting to be left out so she too grew loads and ended up with some new shoes, wellies and clothes. Ask Rachel, I am not sure where my children (apart from Harry) get their tall genes from. I do know its costing me an absolute fortune. Plus growing children equals larger appetites and my fridge is emptying more rapidly. Our local Asda would go out of business if it wasnt for me!!!
Oh well, I will wind up now. I have so many blogs to catch up on and a house that needs cleaning and oodles of clothes that need name tags stitching in. I may not bother with that, whats the point? They'll only grow out of them in no time at all!
Monday, 1 April 2013
1st April to me forever will be the day that our lives changed forever. The day we first heard the word Retinoblastoma.
2years ago today we were told our precious few week old baby needed to go see a specialist centre in Birmingham to check their fears and confirm that Harry had retinoblastoma. And sadly, even though our appointment was before 12noon, it was no joke. Nobody going to jump out and say 'fooled you'
Now I'm not going to dwell and live in the past too much. But there are certain dates and milestones in Harry's life that are extremely difficult to bear. I can still feel the pain I felt as I walked out of our local ophthalmology dept at the hospital, hoping beyond hope they were wrong. It was a surreal feeling, like I was floating above and looking down in on our lives. Not really real as things like that always happen to someone else. And yet we are now that someone else.
This is Harry a few minutes old, and that snuggly newborness sadly didnt last long. The memories of having a 'normal' newborn are hard to muster. There was only a few weeks of blissful ignorance of what lay round the corner.
This is Harry on the 8th April 2011, the day his diagnosis of Bilateral Retinoblastoma was confirmed. One of the most calm and serene pictures we have of him. He looks as if he is praying, he was an angel that day. He moved from life as a 'normal' baby to one of a child fighting cancer. Years of treatment and check-ups will be the life he will know.
Harry today, a beautiful cheeky little boy who brings light to all he comes across. His determination has overcome his massive disability. His extreme lack of eyesight hasnt stopped him and that is why I am not dwelling too much on the past.
Yes, he has made it through chemotherapy and the life threatening illness that came with it. Yes, he has had over 20 general anaesthetics and the risks that each one has brought and will continue to bring for the years ahead but....
CANCER, Harry is proving just what a tough little cookie he is and is ahead on points in the battle. Each visit to Birmingham brings them head to head and 'ding ding' Harry is making a gap in the points between him and cancer. He has had six clear visits now and is at 8weekly visits which is fantastic.
There is no point living in the land of ifs and buts. The 'what-if' scenario doesnt help. Harry has cancer and we have to get on with it. It has moulded him into the little character he is, he is our little Harry superstar and we love him to a million pieces.
So, April 1st, its no joke. Its deadly serious. And unlike April 1st, the joke doesnt end at 12noon, its neverending.
Friday, 22 March 2013
This time last year we had a freaky early heatwave, people were sunbathing on Brighton beach. But this morning, I woke up, looked out of the window and thought what the .....?
It was white, completely white. No bit of ground could be seen. 4inches of snow sat smugly on top of my car. Oh FFFFFFFFFS.
I absolutely hate, despise, loathe, abhor, dislike (or any other word with the same meaning) snow. It is cold and dangerous.
I live in a mini microclimate. Its weird, I can have snow yet 1mile down the hill into the village there can be barely any.
So I duly got all the children dressed for school and popped them into the car. I drove very gingerly down the hill, the wind was whipping the snow from the fields into mini tornados and whooshing them over me. My car was buffeting from side to side. I gritted my teeth even harder and thanked the Lord when I reached the bottom and the safety of the always gritted road. My road rarely sees a gritter, ok it never does.
I drove gingerly to school, pulled up outside the gate and Matthew commented, 'Where is everyone?' just as my phone beeped. It was a text message from school saying it was closed. AAAAARRRRRRRRGGGGGGGGGGGGHHHHHHHHHHHHHH. I was not best pleased. But as I was going to Asda after the school drop off, all was not lost I suppose, but it meant taking all of them to Asda. Matthews turn now to be not impressed. He hates Asda. So do I really.
So, having done our shopping we made our way home. The roads were clear, although the closer we got to our village the whiter the fields and surrounding area got. I had already decided to take the longer but less steep hill home. My hill was covered on the way down so I didnt like the thought of driving up it. So at the bottom it seemed ok, I set off keeping it steady. The road then started to disappear under a blanket of snow. Keep going I urged the car and all seemed ok. I could see the top of the hill and I was nearly there, when I drove over a mound of snow and it threw my speed and traction and I ended up sideways.
Now excuse the language, and having the children in the car I uttered it silently to myself but f*************************k.
OMG, that was scary, but not wanting the children to be scared, I was very laughy and its ok. Don't worry, I kept saying. Now this was a scenario. I had all 4 children and shopping, no pram for Harry so walking the trek home wasnt an option really. My car was sideways on a hill, covered in snow and high snow drifts so anything else coming the other way could easily plough into me. I got out to shift some snow from behind the wheels to see if I could straighten the car up, stupid idea using my bare hands, cos I cut my finger on something sharp and it was bloody freezing. Oh hell, what am I going to do.
Now what happened next completely restored my faith in mankind. Someone was definitely watching over me. A gentleman who I see walking his german shepherd past my house walked up. He pushed and helped me straighten the car so I wasnt in such a stupid position. A landrover then came behind me. Oh well done I muttered, where do you expect me to go????
BUT, he came up and assessed the situation, and OBVIOUSLY commented 'you're not going to get home in your car in this snow'
Dur I know that now.
He then said (and he'd had a chat with man with German Shepherd and they'd discussed this)I will take you and your children home and this man (who I now know is called Barry)will move your car backwards into a safer position.
I very trustingly left my car and its spare key with Barry and got into a complete strangers car with my kids and the shopping, he did a three point turn and drove me up the impassable Moorside Rd hill way (which I didnt go up). His car drove like there was nothing on the road. Mental note, I must get a landrover.
Danny was a little confused. He got out of bed he is day sleeping in readiness for his upcoming three night shifts) and wondered where the car was.
Just then Barry rang, and said his farmer friend was going to tow my car to his house, which was a little further up the hill from where I abandoned it, and he would keep it on is drive till it cleared. He would then walk round with my key.
What a superstar, my car would be safe.
But 10mins later Madeleine shouted, our car is here. OMG, how did he get it home?? His farmer friend said it was just as easy to tow it home than tow it to Barry's house and voila.
Me, kids, shopping and now the car all safely home.
I cannot thank them enough. They were all brilliant and got me out of an extremely sticky situation.
Now came the next problem, how does Danny get to work? Well seeing as the roads in the village were clear, he arranged to walk down through the drifts and meet his ambulance mate. Brr, slippy, deep snow and cold, but he made it and is now safe at work. God knows how he will get home in the morning, especially seeing as more snow is forecast. But me and the kids are home, enough food for a few days and I have the electric blanket to keep warm.
Now, I just have to say (as the whole country moans about snow blah blah blah) why on earth to people find the attraction in paying thousands of pounds to holiday in the stuff? I just cannot fathom it out.
Now looking back over my last few posts I realise they have been lacking in pics. Harry is never still, so getting a clear, non fuzzy picture is quite hard. Here's one of him taken last week. I think its cute, he loves his dummy and blankey
Thursday, 14 March 2013
'Encouraging' the consultant said. Amazing more like.
'He's still very young so we cannot be complacent' he said.
Eh? what was that? I stopped listening after the word clear. I am still smiling the biggest smile. Disney have commissioned me for the new Cheshire Cat.
SORRY ABOUT THE BREAK, FELL ASLEEP ON SOFA (SEE EARLIER POSTS RE THIS LOL) SO AM RETURNING ONE DAY LATER
Ahem, erm where was I? Oh yeah Fandabeedozee. Well I had an extra little guest on our trip, namely next bigger brother William. I knew it would be hard work, as I would be going alone with them both. Danny was at work, so Matthew and Madeleine went to my mums for a sleepover, and now William has outgrown the travelcot and is way too old to sleep in it anyway him sleeping over too would be tricky, lack of beds and it being hard work for my mum as my dad was at work too.
So me, pram, 3 bags, Harry's carseat and 2 kids went to Birmingham. Thankfully the transport provided a carseat for William. Typically it was late, so we didnt actually arrive until teatime. I had promised William he could have his tea in McDonalds (great lol)and he was amazed when his Happy Meal arrived that it was 'exactly the same as at home'.
The novelty soon wore off when back at the hotel. The TV was rubbish, no Nick Jr. The room was like a matchbox, no space to play so at 8pm he declared it was time to put shoes and coat on and go home. I could have easily agreed lol.
Anyway, he awoke in the early hours disorientated, so I snuggled him in with me. Big mistake. I got no sleep and amazingly enough didnt fall out from lying on the 3inches he allowed me to lie on whilst he was spreadeagled. I was such a dur brain I didnt think of moving over to his bed. DOH!
He charmed the pants off all the nurses and was so good, I was so proud of him. He chatted to everyone and made friends with a grandma of another patient. And she bought her grandson some smarties but offered a few to William. I was mortified when he took the packet from her (instead of letting her shake some into his hand) but smiled inwardly when he thanked her.
The play therapists were wonderful with him, and watched over him whilst Harry went about his business. I won't lie, it was both a good and a bad idea him coming. Good in that it provided me with a distraction to what Harry went through and was company in the hotel. Also he got to see what went on each time I disappear off to Birmingham. I don't think he was over impressed really. Bad, in that it was hard work getting everything and everyone to the hospital from the hotel by myself, bad that William was subjected to seeing some of what Harry goes through and that he could see other children enduring cancer treatments. I hope I don't have to take him again, purely for the bad reasons.
So we now have another 8wk holiday til the next visit. Bring it on eh Harry!
My oven has died. Something electrical or other has gone on it. Even my superstar fix everything dad can't fix it. I am fast running out of ideas of what I can cook just using the hob, microwave and slow cooker. The kids are demanding chips! I may even have to buy a deep fat fryer just purely to shut them up.
The heating oil ran out, just as it started snowing again. It took the oil company 3 days to deliver it, despite them assuring us we had been marked as priority as we have young children. I know its not their fault we ran out, and I thank god we decided to put practicality before pride and invest in an electric blanket for the bed. This is something my grandparents had, not us tough it out youngies. But it is heaven, and it is super deluxe with dual controls, a fast 5min heat up, various heat settings with an hour and 9 hour setting and even a warmer part for your feet. GO BUY ONE.
ooh, i am fast falling asleep here and I can hear my electric blanket calling me. Night peeps x
Monday, 4 March 2013
Here I am, on the eve of my birthday, sitting on my backside doing absolutely nothing. I have already given myself whiplash through nodding off with head resting on hand when it suddenly drops away and its only 9pm.
Dan is on nights tonight and tomorrow, so bang goes my tea being made for me for my birthday. Wait a minute, I don't have it made when he's not on nights so there's not much change there then.
So here I am, writing nonsense when I should be a) doing the washing up, I would let the dishwasher take the strain but I've run out of dishwasher tablets, dang and blast. b) swap the washing into the dryer but that means emptying the dryer which means folding and filling up my empty ironing basket. and that also means going outside to the garage. Its lovely having the laundry equipment outside as you don't have to listen to the racket it makes buts its a complete pain when its pouring down and freezing cold.
So instead, I shall not bother doing either a) or b) and just write this blog page. William gave us a bit of a chuckle yesterday. I was cuddling Harry and he demanded Harry be put down so he could have a cuddle. 'Touch of the green eyes' I said to Dan and William quickfired in 'but my eyes are blue'. So funny. He is looking forward to his adventure. He is coming to Birmingham with us on Thursday. Dan is working and my mum has got a lack of bedspace, plus its a bit too much hard work for her when she's on her own and I don't like asking my dad to take time off work. So Madeleine and Matthew are staying over and William is coming with me. It will be hard work, lugging a buggy, car seat umpteen bags and making sure William stays close but he's excited. I'm not. I would rather give a crocodile a scale and polish than go there. I hope the play therapists will be there to distract William. I cannot let him witness what poor Harry has to go through. It would spoil his adventure.
I suppose it will be a distraction, I am really scared. 8weeks seemed a lifetime away and now its here. The sensible part of me is telling me all will be well again, but the irrational part is in hysterics, certain that something will have grown and beyond the boundaries of the laser. Lets hope the irrational part gets a good kicking!!
Though Harry is being really clumsy at the moment. Its probably him trying to get around quicker but he's constantly bumping and walking into things, his huge black metal playpen getting the most knocks. He must have phenomenal healing powers, as he should be a mass of bruising, but instead the red bump marks disappear overnight. He's started coming to me for a love after a bump now. I think he's getting fed up with it. Its heartbreaking really.
On a plus side, he's really come on in the vocabulary side of things. He's chatting away, much to the delight of his siblings. And as he's still sleeping in our room ( i really need to get the other bunk bed from my friends loft) its really funny listening to him chuntering away to himself. You hear things you must say without realising. He said the other day, 'go for wee wee back in a minute' and I usually say it as I tiptoe past in a morning. Better watch what I say in future lol.
So here's to my last year of my thirties and another good visit to Birmingham. Both will be either really good or really bad. Lets hope its good. Come on Harry, you can do it!!
Saturday, 23 February 2013
Anyway, this year we decided against popping over to the Alps for a little ski break, I just couldn't be bothered packing all the gear, and as we are all capable of going down the black runs it seems a little tame trying something other than Everest.
Well ok, that's an absolute bare faced lie. I neither have the gear or the interest in ski-ing. And I was being honest saying I was capable of going down a black run - flat on my arse!
What can anyone possibly find great about ski-ing?? Being out in that cold white nasty stuff called snow and ice, WHY??? When it snows here, everyone moans and whines about it, so why spend an absolute fortune flying out to more of it??
So, we weren't jetting off for a bit of apres ski. The closest to ski will be a trip to Asda and I will get a 4pack, the French Set style ski yoghurts are my fave.
So what did we do with our week off?
Well of course there was the obligatory ill child - this time it was Matthew. Was a little worried about him, after a few days of saying (in a tone that sounded remarkably like my mum when I was ill) its just a cold, a bit of fresh air will do you good, when he started sleeping constantly I decided to take him to the docs. Result one ear infection and a course of anti-biotics. He's much better but he's still ghostly pale. They all went to the dentist - all have lovely teeth, even Madeleine who seems to eat nothing but sweets lol. Harry was none too impressed, William sat with his mouth so wide open you could see into his lungs, Madeleine stood and opened her mouth for a split second and Matthew was a little star. I am determined my children have no fear of visiting the dentist.
Not wanting to surpass a Riley outing to the dentist, Tuesday dawned with a mass trip to the hairdressers for the half-termly haircuts. I went a bit radical with Madeleine and her scraggy long locks have been replaced with a stylish cute little bob, William and Matthew are sporting short back and sides and Maria (being so loverly) offered to snip the 3 long bits from cherubic Harry's head. Well you would think she'd snipped his ear off. He went bananas and screamed blue murder. He absolutely and completely hates anyone doing anything remotely similar to being held down - must make him think of his traumas in Birmingham. He actually made his first shoe fitting look tame!!
We all went on a family outing - and took Dan's car for its MOT We had genuinely thought it ran out at the end of February, but upon just double checking it ran out on the 9th. Aaarghh, Dan has been driving illegally for over a week. Well as expected as we are extremely lacking in the spare cash market it failed. One hundred and ninety five squid failed.
Family outing again to pick up Dan's heap, sorry I mean car. And as it was a fine sunny day I succumbed to the kids -you promised we could go to the park- whines and took them to Happy Mount Park in Morecambe. It was freezing. Harry was wrapped up in his snowsuit and snuggly asleep inside his footwarmer in his pram, the other kids were running around and playing on the swings, and were complaining they were hot in their coats, and I was stood keeping careful watch over the cherubs, freezing my everything off. I could bare it no longer and as the ice cream van was unsurprisingly not there the bribe of 'you can have an ice-lolly when we get home' worked rather well and we hot footed it back to the warmth of the car.
The final Riley outing of the week was a trip to Asda. Their whines of 'its not fair why do we have to come' were rewarded by their nanna treating them to a trip to the big yellow M eaterie. Yes the highly nutritious Macdonalds. My reward that evening was that Dan started his weekend of night shifts. I had planned on updating my blog this evening, but in usual fashion I fell asleep on one of the sofas, so with a dead arm and pins and needles I dragged myself of to the delights of solitary sleeping with the leccy blanket all to myself!!
So here I sit on this freezing saturday night with a choice of sofas to sit on whilst I update my blog. I am actually sitting in my usual spot, on one half of the sofa, not even stretching out. The 3 youngest Rileys are all snugged up in their beds, the oldest enjoying the last few mins of his Xbox and I can already feel my eyelids taking on their lead load and trying to clamp shut.
BUT I have a lot of blogs to catch up on, I will probably be reading into the early hours. You really should take a peep at my sisters blog, it is a right riveting read. She has a talent for always finding the right words. Go on, take a peep.
Well one of my worst fears happened this week and Harry fell head first off the sofa. The sickening thud was awful, but thankfully he's fine. He has no concept of height/depth so to him just crawling forwards is fine, NOT. I was just out of reach. I usually make him lie on his belly and slither off as soon as he's climbed on (I would rather stop him completely but he needs to learn) but he was off before I could grab him. He didnt half sob, poor little thing. Has it made him stop and think 'don't climb cos I may get hurt?' has it heck. He's been on the sofa more times than I can count. Even I am getting sick of hearing 'Down down Harry' lol
Well its 2 weeks to 2 events, my birthday closely followed by Harry's next EUA. Both I hope will pass by uneventfully. I am absolutely far too old for birthday parties and it brings me a year closer to the naffness of being in my forties. And to be frank, if my fortieth happens in the same way as Rachel's did then I would rather forget it. Still I've got time til I get there. As for Harry's EUA, this will be 8wks since his last. I am still very nervous about this gap, especially as his follow-up letter from the last stated that his next EUA is scheduled for 5-7 weeks. So whilst I fully expect nothing to be there, there is that little part of your mind that starts up the what-if games and mine has started such a game.
Anyway, the half term break is nearly over, I didn't win the lottery tonight but I hit the jackpot every morning when I see the faces of my little angels beaming back at me. No amount of money could buy that.
Wednesday, 13 February 2013
However, this year I have decided to do something different.
Harry wants to give up cancer for Lent, that to me is unacceptable. I want him to give it up for life. You could think if there was a God, whose message in the Bible is always to protect children, that he would spare these innocent little mites from cancer and its devastation it leaves behind. However, I am not going to start a religious debate, I was just thinking thats all.
Harry amazes me. He has been through so much and yet he still smiles. I am still scowling a week after stubbing my toe lol. All my children amaze me and to be the centre of their affection is amazing. There is nothing nicer than them falling out over who is going to sit on my knee to tell me they love me. Harry has even started pulling at them to try and get them off. He's a proper mummys boy.
So I have decided to give up shouting for Lent. I never mean to shout, its probably 2yrs of built up stress that contributes to it, but when you've asked them a zillion times to get their coat and shoes on your voice does tend to get a bit shouty. I always instantly regret it, seeing their little brows crumple into a frown hits home like a hammer.
So I will give up shouting. I am prepared to ask a zillion and one times now. Maybe I should start talking in whispers so by the time I get to a zillion and one my voice will be loud to them, but my normal voice lol and not technically shouting.
What is amazing that it has been 2 years since Harry's 8wk baby check and I raised my concerns over Harry's lack of making eye contact. I'm not going to dwell on the what-ifs and living in the past. What happened, happened. Harry for some inexplicable reason was picked to be one of the 40 children to be diagnosed with Retinoblastoma in 2011. I cannot change what happened, I wish it had never happened, but it did and we have to deal with it.
Harrys life was saved and the cancer brought under control to a point they can manage any new growths by laser. Each EUA brings the 'I hope there's nothing new and the existing tumors stay in remission' game and thankfully at the moment that is what is happening.
We live for today, I do not know what will happen next month/year and should he need invasive treatment again like chemotherapy then so be it.
So at the moment, I have a wonderful nearly nine year old Matthew, my precious first born. An amazing just turned five year old Madeleine, and my only daughter. My incredible three and a half year old William who makes me laugh every day and my superstar fighter two year old Harry. I am blessed to be their mummy and I count my blessings everyday for each and everyone of them. And I treasure them so much, I am giving up shouting for Lent.
What will you give up?
Monday, 4 February 2013
I am so sorry I have neglected you, severely. I can offer no explanation other than 'I'll do it tomorrow' never actually happens. Ok mum, so you were right with that one!
I had so much to write about and yet I never seemed to find that minute, mainly because Mr R seems to NOT have worked a night shift for ages, and that is the time I get precious 'hog the laptop' time.
So, yeah you guessed it Mr R is safe and sound AT WORK hurrah. I have just tucked all the little Rileys into bed, TV turned onto the good stuff and laptop perched upon a cushion on my knee. I know for sure I will have writers block, and all the good stuff will just vamoosh out of my head but here goes for an update.
Christmas was fabulous. The kids were thoroughly spoilt, but were so thankful for everything they got. My fingers were sore from the endles building of toys and lego. When I win the lottery, I am going to franchise a ready-to-play-with-toy range that parents worldwide will kill to buy because, yes you will just remove from the box and it can be played with instantly. No more sodding incomprehensible instruction manuals.
New Year dawned and my beautiful Harry turned 2! OMG how on earth did that happen. It seems like minutes since he was born, well thats a lie really but despite everything thrown at him these past 2 years, he remains happy and living his life to the fullness he can. He seems blissfully oblivious to the word cancer. To him his little life is normal. To me however, he still looks like a baby, and is behind developmentally and in height, but as my sis said on her blog, you cannot tolerate toxic chemotherapy and fight off septicaemia TWICE and still grow and develop in line with your peers. And just to make him turning 2 even more fantastic, he had yet another clear visit. That makes it 4 on the trot, and thats deffo one in the eye of evil nasty cancer. Har Har
Minutes old to 2 years old (thanks Rachie for the images lol)
He has just started the awful process of being statemented. This will forever label him as special needs. To me he is perfect, but to the wide world, he is a little boy who will need help living in todays world. His visual acuity is so bad he will probably learn braille and may need assistance walking round safely (in a clear tidy room in an environment he is familiar with he appears to walk fine. Put something on the floor and he will fall over it it, put him in a strange room and he will bump) I still do not like the idea of this label but if it means he gets whatever help he needs without me having to fight for it then it will be a good thing. The next big thing will be me letting go, learning to trust someone else with his safety is not going to be easy. That has been my sole responsibility since he was born, no one can possibly step up to the mark, well ok Hanty Raychel can.
Anyway, we enjoyed the rest of January, and until the 2nd February, we had a 2,3 and 4 yr old. And then something even more incredible happened. Madeleine turned 5. She is a tall 5 year old. Now just how did that happen. It doesnt seem 2 minutes since she was born, I can vividly remember. Rachel has told Harry's birth story many times. The franticness of him not moving and the bad heart traces. Well Madeleine's was going like a text book delivery. Waters broke at home, it snowed on the drive in, contractions started and progressed quickly (Mr R nearly didnt make it back) and after a few heave-ho pushes out little angel was born. Technically she was an angel as the cord was wrapped tightly round her neck. It took 1minutes and 10seconds (which seemed like a lifetime) until the wonderful sound you need to hear, she started crying and we hae never been able to shut her up ever since. She was a teeny litle dot, and the only thing that contributed to her 7lb 14oz was her little round belly, and she's kept it ever since!
She has grown into a wonderful little girl. So clever, reading marvellously, Wanting to know how everything works, asks a zillion questions a day and is the tallest in her class. Something I always dreamed of being, but it never happened. Yes I am jealous of my own daughter. Happy birthday darling.
William remains my source of laughter. He has an answer for everything. He announced he doesnt want to be 3 any more because its rubbish! Most of the tasks at pre-school are nonsense, so he says. His teachers love him to bits and want him never to go to school.
Matthew is growing into a tall solemn boy. His brain is 2days ahead and he is reading fiction for 14yr olds (checked for suitability of course)
I am so so proud of all my children. They delight me every day. I cannot imagine spending any less time with them, I am so lucky to be a stay-at-home mum. Life is practically perfect. It would be 100% perfect if it wasnt for Harry's predicament. Its leaving an ugly stain on us all, not even Cillit Bang or Vanish can shift it. But we are learning to cover it up so we see it less. Out of sight, out of mind, well sometimes that rule works.
We're trying an 8week break between EUA's. Something I'm not entirely happy with. Yes I'm ecstatic Harry is still stable, but we've always been told lots can happen in just a few weeks. So I am currently playing the what-if game. What if there was something just about to grow at the last visit? A 5wk break would enable them to laser it,but it could possibly grow too large in those extra 3 weeks. I know they know what they are doing. But my irrational thoughts will not let me settle and I seem to be stuck on a merry-go-round. I would rather go every 4 weeks for ever than play the what-if game. These next 4 weeks will drag.
Anyway, I apologise for my absence. I completely understand if you have put me on the shelf. I absolutely deserve to be. But now I have started again, I promise I will update you on the deliciousness of life with the little Rileys a lot more regularly.
With Love from me xx