On our way to brum

Harry is so taken with motorway travel, he falls asleep everytime. We are on our way to Birmingham for the dreaded Eua tomorrow. Things have been clear and dandy for quite a while so not expecting any surprises but we will not be complacent. Hated saying bye to the others, it's only overnight but I still miss the little imps. Update with news tomorrow x

Be right back......

I sincerely and heartily promise that I will do a long update tonight when Mr R is in work. I cannot believe 6mth has passed. My blogger app has changed so much I think I need a lesson in how to use it!! It didn't help that little fingers had sent it to phone hideout so I guess out of sight out of mind lol so see you later xx

Champions

I use the blog mainly to keep an update on Harry's journey and what a superstar he is with his fight to overcome the evil 'c' word. I sometimes mention his siblings, but just because they don't appear here as much doesnt mean they men any less to me than Harry.

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

School holidays love em or hate em....

It has been debated for as long as I've been aware of what the '6 week holiday' is, that 6 weeks is just far too long. Those that want it shortening are probably a mixture of non-child people who are sick of tripping over them wherever they go and exasperated parents who have run out of great ideas for the long hot sunny days, okay the long wet dank days that seem to stretch out forever. I think I am somewhere in the middle.

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.

We just love good news

And we got some.......

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.

http://youtu.be/CU2wMKOX3cE

tsk tsk you will have to copy and paste it grr


Fondest love to you all as ever xx

4 is the new 3!

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!

Stillbirth... why is it so taboo?

Approximately 3 years ago I came across a wonderful group of people all with babies due at the same time Harry was due. We met on a chat forum for a baby magazine.

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.