Monday, 28 May 2012

What a week ...

I can honestly say I am glad to see the back of last week. It was truly awful and if the norovirus or any other virus dare show its face I will not be held responsible for my actions. STAY AWAY GERMS.

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

Sick of sick

I am officially sick of sick.
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

Go Harry!!

Firstly OMG there have been close to 10k page views of my ramblings, I bet if cuteypie Harry wasnt in them no-one would bother to look lol

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

Sunday, 13 May 2012

Rb Awareness

Today marks the start of World Retinoblastoma Awareness Week. We (the Rb families) are inundating twitter and Facebook with constant naggings and reminders to spread the word.

Retinoblastoma can kill, simple as that. Its cancer, simple as that. A certain percentage are 'likely' to develop it if they have inherited the 'rogue' gene or had it mutated at conception but in a large number it just happens.

I always assumed cancer happens to someone else, and the only real childhood cancer I'd ever heard of was Leukaemia. Now I have been thrust into this strange club of horrifying cancers eating away at precious children, so don't ever ever assume it will happen to someone else.

So raising awareness of any cancer, not just retinoblastoma is important. But Rb is close to my heart now, if I can prevent a child from losing first their life, second their eye and third their sight then I will do all I can to do this.

We share posters like this :

Now don't get me wrong, having one of those signs does NOT necessarily mean cancer. My next youngest son has a squint and he has been checked, and its just a squint that will be corrected before he starts school, BUT sometimes it does mean cancer.

It is not just the parents who need educating in recognising the signs. The number of GP's or medical people who dismiss them, either because they have not heard of Retinoblastoma, (and this has happened) or because they assume its just something that will be sorted say with glasses or patches need educating too.

In too many instances, children have lost their eyes or sight and had they been referred sooner than the 'wait and see' method then their outcome may have been different. I was extremely lucky, Harry was referred and diagnosed and treatment started within 3 weeks, and he was then only 13wks old. I dread to think if my GP had shoo'ed me away saying it was nothing where Harry would be at now.

There is thankfully only a small number of children diagnosed each year within the UK, but one is too many. If we multiply this by the worldwide number its quite frightening. At the minute I can't see this type of cancer being preventable, especially as it sometimes 'just happens' but we can make sure that early detection is put in place so that we can drastically reduce the number of children who lose their lives, eyes or sight and that they can grow up to live as normal a life as they were born to do.

So please don't ignore our messages, you or someone you know may have to face this nightmare so shout it out and share with everyone, Know the Signs, Know the Glow.

Thank you xx

Wednesday, 9 May 2012

Just in case you needed a Harry fix ...
Taking pics are a bit difficult at the moment, he's never still so they're always blurry, plus I'm not the best photographer either so apologies for using an 'old' one.

I've met a new Rb friend who unbelievably lives in Fleetwood (30mins drive away), except they're at the banging-their-heads-against-a-brick-wall stage. They've been snubbed by GP's twice and they took her to the a&e who saw a lesion on her right eye and mentioned they thought it was Rb, her parents have seen the white reflex and she has a squint, classic Rb symptoms.
However, Blackpool Victoria Hospital have been, to be perfectly honest, a bunch of w*****s as they have decided to do their own EUA, though they didnt and just tried looking (and I know what its like trying to get a toddler to still still after the stingy eye drops have been put in) and have now given her an appt for another 'proper' EUA in 3 weeks time. WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
There are 2 hospitals in the country that can actually diagnose Rb, Birmingham and London so why are Blackpool playing russian roulette with this little girls sight/life. Refer her now, she could be 3 weeks into her treatment by the time their so-called EUA comes round.
I feel like ringing them myself and I really do feel for Kerrie and her family and especially little Violet. Anyway, she has got the support of all us Rb family and hopefully her agony will be sorted asap. I feel a trip to Freeport and a meet up in Costa is on the cards x

Its only 1 week til Harry's next EUA. I am feeling a little anxious to be honest, I am really hoping we get a full clear visit. I will not get my hopes up too high though. I am really geting a little narked with this cancer malarky, I wish to god I can go back to the times where it was something that happened to someone else (not that I want it to happen to someone else). I went to a toddler group today so Madeleine and William could burn off some steam. There was a mum there who had a 12mth old and a 2 yr old and after a few polite exchanges she commented that her 12mth old was just about walking (now I reallllllllllly hate these mums who have to have their baby doing something before anyone elses) when she asked if Harry had found his feet.
I proudly said (and I am so proud of him) he's just started pulling himself up and has cruised a couple of steps and honestly replied he's 16mths old when asked.
Now I got the 'look' which is actually worse than the comments as I could almost hear her mind saying 'gosh that baby is that old and can't even do ..... yet'.

Outwardly, apart from his rolling, squinting and flickering eyes, there's nothing really obvious he has cancer and I feel like screaming when I have to keep explaining why he's so far behind babies of his age. Chemo has a lot to answer for, cancer has a lot to answer for and Harry's rogue gene which has caused all this nightmare better stay away from me.

On a plus side, Harry's physio came round yesterday and she was blown away by his progress, she was beaming as she saw him pull himself up (with the help of his teeth lol), he unfortunately seems to have inherited Matthews hypermobility so may end up wearing the same Forrest Gump boots. This could hinder his walking (like it did Matthew though he got there with his flat feet and inward rolling knees) but they will just observe at the moment, it may correct itself as he gets stronger. Keep him barefoot as much as possible, not a problem as socks are off within seconds.

Well I am really enjoying my peaceful night, Danny is on nights and William is still going bed like a good boy, controlled crying worked, it took 3 nights of tears, 3 with protests and since resignation that it is bedtime and I now get a lovely hug and kiss as he says night night.

So on that note, I will sign off, don't forget to pay a visit to my sister Rachel's blog. Love you all x

Sunday, 6 May 2012

The Tooth fairy

Matthew lost one of his top front teeth last week, and has a few more wobbling, and he seemed to forget all about the tooth fairy.
William obviously had other ideas, (and watch out David Beckham) he lined up the ball in the hall, ran and kicked it, right into Matthew's face!. Result, one loose bottom tooth now out, and in Matthew's words between sobs, 'I'm bleeding to death'.

Quick reassurance that because your mouth is wet, it seems that there is more blood than there is and that tooth was ready to come out anyway. A quick reiteration that we do not kick balls in the house but he was really upset, until he remembered he now has 2 teeth for the tooth fairy. Thanks a bunch William!

On a funny note, and I apologise to those who have limbs missing through birth, accident or otherwise as I mean no offence and its one of those 'what kids say things' but as I was driving into town to meet my lovely sister Rachel I spotted a gentleman on the pavement in a wheelchair. As I passed and glanced in my rear view mirror I noticed his legs were absent. Now hawk-eye Madeleine had obviously spotted him too and she piped up 'aw that poor man' so I asked why was he a poor man and she replied 'there's no one to push him so he's stuck'. No darling he'll be able to wheel himself using his arms. 'but he's got no legs, why's he got no legs'
So I proceeded to explain in a kid understandable way that some people have accidents, or sometimes they're born that way.
Matthew 'oh like the girl off Ceebeebies', yes exactly. Sometimes you can be born with just one arm or leg.
Matthew 'if you've only got one leg, what happens when you get tired of hopping, you can't put your other foot down so you'll just fall over (demonstrating this in the car)
If you only had one leg you would probably have crutches, you wouldnt hop all the time, and as Matthew replied 'I was just saying' Now I wouldnt condone this, but the way he said it made me laugh, to the point I thought I would have to pull over (and I sincerely apologise for laughing, I was not laughing at people with disabilities, just at my child)

Harry now says 'ta' when you give him something, usually edible. Its so cute. He's trying to get to his feet at any opportunity he can get. Belted pants are now a must for anyone, as his vice-like grip would pull anything else down, as William has already found out. His physio is back on Tuesday, am sure she will be pleased.

William is still doing really well, daddy almost cracked as William with outstretched arms on his way to the stairs demanded a snuggy with tears starting. '2 mins on my knee' said daddy, 'up to bed' said mummy and up he went. He lay down and in the cutest heart melting way said night night mummy and after 5mins of chattering all went quiet. He's done really well, am really proud of him. A quick reprimand to daddy for nearly giving in. He's way too soft to the point if the kids want anything, they just usually go straight to him, a bit like we did when we were little har har

Oh well, a lovely stay at home sunday with daddy at work day today, lots of playtime and ironing will feature, and the bonus of not having to get up for the school run in the morning. Typical its a bank holiday as the weather has been forecast as rain and more rain, catch you all later xx

Friday, 4 May 2012

Sleepyland part 2

Well Wednesday night arrived, and up William went. The immediate crying started, and after a few mins fidgeting Danny was banished to the other room as he was clearly itching to go up and get him.
Only 5 mins of crying. I had to go wipe the ever runny nose and that was that.
Thurs and Fri nights, no crying and Danny amazed. He bet I would crack. He can't bear to hear them cry, neither can I but this time I won. Not being complacent, its only been 5 days, but so far so good, and William was duly praised each morning for being a big boy.

So, if anyone is wondering which method is best, I will vouch for controlled crying anyday. It works. I'm proud of me and proud of William. Our evenings have once again become CFZ's (child free zones.

Harry is loving his new game of pulling up using jeans as grip holds. William however didnt find it so funny. His wailing of 'mummy Harry pulling my pants down' was only met with sniggers from me. His physio has recommended he is barefoot so to help his muscles develop for gripping on standing. No fear there, Harry has the socks pulled off within seconds of them being put on. She is back next week, hope she will be pleased with his progress.

Our new Clic Sargent social worker Julie came to see us on Wednesday. She is lovely and reminds me a little of Su Pollard. Harry seemed to like her, William loved her cos she let him play with her phone. She helped with some form filling. Their support is fab.

Harry had a lovely time playing with Lynn his VI teacher on Thursday. She'd brought a colleague and they tried to do an assessment to see if they could guage what level of sight he has. This is so they can amend his therapy plan accordingly. His right eye is deffo the best, with very little on the left. They agreed that he was a clever monkey and was learning fast as to where his toys were and he was using his ears and touch to compensate but they were happy he has some peripheral sight and he was using it. Fantastic, lets hope the tumors stay away and it stays like that. It will never get any better, we can only hope it doesnt get worse. Lynn also confirmed she was going to start the ball rolling for his CAF, this will statement him to special needs so he can access anything to help him, whether one to one help in school, or aids or adaptations. I know its needed, but it doesnt make it any easier knowing your child is going to be labelled.

22days till Matthew turns 8 and 13days till we go to Birmingham.

Tuesday, 1 May 2012


Matthew Madeleine and Harry are brilliant at going to bed. Off they go, whether they say they are tired are not and just lay there til they drift off to sleepyland.

william is a complete different kettle of fish. My fault, I know that. When he was born, Danny had just moved back onto day/night shifts so I suppose I was more conscious of not letting him disturb a sleeping daddy so I got into the habit of snuggling him a little more than I should. As he got a little older, and whilst it being way easier whilst I was getting the older 2 ready for bed, I let him glug his milk whilst in his pram which usually knocked him off to sleep. Now Gina Ford would instruct me to wake the sleeping baby then place awake into his bed.
Not on your nelly, William, whether 10mins or 10hours of sleep would be woken and that would be that. No going back to sleep.

The situ with Harry only made it worse and now William refuses to drink milk of any kind, bedtime was becoming a joke. I seriously feared Jo Frost knocking on the door lol.
So I decided enough was enough and decided the controlled crying method was to be tried.
Starting Monday night, when Danny is at work and as I'm the hard nut and he the softie (he would have given in after 30secs).
So Madeleine went up, and as I kissed her goodnight I apologised because William is going to cry for a while. I hope he doesnt disturb her.#

Up went William immediately after. Despite his protests of 'I not going to bed yet' he was put into bed and kissed goodnight.
10mins of screaming and sobbing, and after him sobbing he had a snotty nose, I went back up, wiped said nose and laid him back down. Bed time, good night was all I said and out I went.
10 more mins of sobbing, mummy I need a snuggle, I went back up and wiped nose, lay him down and said, youre a big boy, no more crying, mummy is going, night night. 'ok mummy' in that canttalkbecauseofcrying voice (which in itself was heart tugging) and then silence. I don't know how long he lay there but not a peep was heard. Hooray.

Tonight, day 2 of the controlled crying method. I said, its bedtime now. Up went Madeleine, up went William with the same protests. Same crying and snotty nose, but only one visit. All was quiet in half the time of last night. Success.

Tomorrow should be better, there will be one hurdle. Daddy. He will be at home tomorrow night, and he will either cave in or start shouting up, go to sleep. Neither of which will help. I am going to have to sleep train him too lol. I am determined it will work. Most ppl say it only takes a few days after I looked it up on the internet.

Harry has moved one step further in catching up development wise. Today, using my jeans as a grip hold, dragged himself onto his feet. Up til now I've helped him, sat behind him etc so it was a massive achievement for him to do it himself. Now my reaction was to say, ooh clever boy, and normally this prompts him to clap his hands.
Bad move mummy, he went to clap his hands and obviously not ready to let go fell down. So his little triumphant face was replaced with tears. Must remember not to say clever boy. He's nearly 16mth old, although the other 3 didnt walk independently til 18mths, they were cruising round and walking with their little walker toys. It brings it home how behind he is. Most people don't mention it as he is still little and as the same size as an average 10mth old his movements are probably typical of a 10mth old. The few that go on to ask how old he is can't help but show their surprise. I suppose we have chemo to thank for that.

25days til Matthew is 8, 17days til we go to Birmingham and 7 days til retinoblastoma awareness week. Please sign and share this petition, raising awareness is surely a good thing and getting the UK government to pull their finger out will do such thing.

Thank you xx