Friday, 22 June 2012

little Riley's update

A few things have happened since I last wrote, mainly Harry's trip to Birmingham. A little nerve racking as I was going alone, and nearly a disaster as I left my phone in the car (which thankfully was returned) it turned out to be an amazing success. Harry for the second visit had no new growth in either eye and all existing tumors still appear to be in remission. Absolutely fantastic, I hope that this is the way to go now. The consultant was cautiously optimistic and suggested he leave Harry 5-6 weeks instead of 4-5 weeks. He warned us that as he is still young there is every chance something new may grow and not to build our hopes too high, but for now they are happy, we are over the moon.
He's turning into a real cheeky chappie, his laugh is so infectious and he's developing a real sense of humour, mainly being told no eg for biting and laughing and going straight back to do it again. He and William are starting to play together, although William is a little rough sometimes and his favourite game is piling all the cushions on top of Harry. Harry laughs hysterically but he's not too impressed with William thinking hoods on hooded tops are for yanking on and pulling him over, to which William laughs hysterically. I must admit I smirk a little as I tell them no and to play nicely, hearing them laugh together is magical.

William, I've mentioned before, has got a squint or lazy right eye. Until we had the genetic blood results back we were convinced he had Rb too, (its a classic symptom) but at one the of the screening visits the eye people in our local hospital suggested we get on and correct it, rather than wait for him to start school. This was great seeing as normal referrals at school age take 12wks to come through.
There was one thing that stood in the way, they needed to find out if he was long or short sighted before deciding on corrective action.
William needed an awake EUA as I call it. Basically the same nasty eye drops to dilate the pupils to saucer size then an examination of the lens and back of the eye. His first 2 ended disastrously, unco-operative being mentioned on his notes. The last one, the lady doc, who was very nice, suggested we leave it 6mths til he's a bit older. I wasnt holding much hope, but on Wednesday morning I took him. Marlene our lovely Rainbow Trust worker looked after Harry, the other 2 were at school.
William cried at the first set of eye drops, but after a little talk of him saying he's a big boy not a baby he became the most co-operative child you could wish for. He sat and let them put more drops in without a grumble, then sat for 20mins completely still whilst the lovely lady doc examined him. She said afterwards, when she saw William's name sh thought, oh no not again. She was impressed, I was impressed and really proud of him. Anyway, his left eye has perfect vision but his lazy right eye is quite longsighted so she prescribed glasses and said these should correct it without needing patches. I can't imagine William keeping glasses on, but we'll see. But the best bit, his retinas are completely clear so we can rest easy his squint is just a squint.
We went to the opticians and he chose the ones he wanted straightaway, good taste William, as the cute little green ones would have been my choice too. He's asking for them daily but when we actually get them I wonder how much fun we'll have keeping them on or not breaking them.

Matthew enjoyed his sports day, and the weather was lovely for once. I don't think he will be Olympic 100m champion but he took part. They did everything as a team thing so no child felt they were coming last at any point.

Handsome boy
William ran in the pre-schoolers race, and despite doing 2 false starts he legged it down the pitch and won, unfortunately he didnt stop so I had to leg it after him. Matthew and his class were chanting his name and he was so proud of his little brother. I am so lucky (not tempting fate) I have children who love each other and play with each other, with only the occasional falling out. I am so lucky I have been blessed with my beautiful children and I cherish them dearly xx

Friday, 15 June 2012

Rambling on

Its official, Madeleine is going to big school. We've been to the parents meeting and to her great delight I came home with a book bag. She will be missed, who else will unpack all my Asda shopping and spread it round the entire kitchen as she helps me do a helpful job, who else will come out to help me peg out the washing and clip all the pegs round the patio furniture rather than pass them to me, who else will use an entire pack of baby wipes to clean her toys, the television and anything else in wiping reach. But although she goes to pre-school, I get to have her with me (except tuesdays when she goes all day)everyday and the hysterical chit chat between her and William will be sorely missed. Quite rightly, and I'm glad, she is really looking forward to going. She will be an asset to the school.

Harry goes to Birmingham on Sunday for his next EUA on Monday. I am really hoping for great news. His fellow Rb warriors have all just been to London and they ALL got clear stable visits, way to go Kyle, Owen and Lillia. Lets hope Harry doesnt spoil the applecart. He's loving the new crawling lark, when he starts speeding up he justs drops onto belly and commandos at top speed. He's now got 4 of his back teeth and now the fangs are just starting to break through. His teeth are like piranha sharp razor blades and he thinks its hilarious when you say ouch as he sinks them into your shoulder. I have to put him down to stop him coming back for seconds. His latest cute trick is to rub his eyes if you say 'are you ti tired Harry'

I put him into the highchair yesterday for the first time. This highchair was Matthews and its brill as it reclines if your little cherub falls asleep whilst eating. Something William has done often.

So much to the disgust of William who still uses it I put Harry in. It drowned him, he looked like a little baby but he was so cute.

If you get a chance, read Rachels blog post about the Gerbil/Hamster funeral. Its so funny, I thought the comment from one pupil to say sorry for your loss but get a dog next time cos they live longer was hilarious. Har har

Sunday brings my niece Chloes 18th Birthday. She is Rachel's daughter and really bonny and has just finished her A levels. I hope her hard work pays off and she gets the grades she needs and deserves to go to uni. I simply cannot imagine little Chloe, with her pigtails and red dungarees, being old enough to go to uni. It only seems 2 minutes that I used to steal her out of her cot and snuggy her in bed with me. It also means I have to miss her party because of shitty cancer as I will be travelling down to Birmingham with Harry. Grr.

I will finish with a request for you all to spare a minute and send love, hope and good wishes to Harry's sweetheart Violet and her family. I hope they can find some firm ground soon so they can step out to wherever they need to go. Big harry hugs xxx

Thursday, 7 June 2012

What's round the corner?

I'm dedicating this post to Mellissa, warrior Kyle's mum. Kyle is the superstar who was diagnosed late at 8 and a half and unfortunately lost an eye, his other is behaving and being stable at the moment. This blew me and other Rb mums out of the water as we all believed 6/7 was the age limit, I guess cancer doesn't follow any rule book.

Anyway, like me Mellissa firstly is finding it hard to come to terms that one of our children has cancer. We nurtured and carried them for 9 months, and although I only had 11 weeks until diagnosis, we looked at our perfect little bundles, completely unaware what was round the corner.

I have written in an earlier blog post, that life is now like living in the Hampton Court Maze, we've been dumped right in the middle of it and trying to find a way out. Sometimes the pathways will be clear, sometimes there will be many twists and turns and as the hedges are so high we do not know whats round the corner.

Mellissa and I are both in the same boat, once Kyle and Harry are clear from this awful cancer (and I pray that time comes round quickly) we will still have the what-if worry that they are both at an increased risk of developing other cancers, melanoma, osteosarcoma, soft tissue sarcoma being the highest risk, and although the risk is probably quite small it will always be there. It doesnt help my neurotica, any ache or pain and I will be frantic with worry. We can thank their faulty Rb1 genes for that.

I've never met Mellissa or spoken with her, but we regularly exchange texts and facebook messages and know we can rely on each other for support, especially when we go for EUA's. The message of support bumps you up and makes you realise you're not alone. I really look on her as a good friend, like someone I've known for ages and I value her support greatly.

So Mellissa, remember you're a fantastic mum, you have beautiful children who are a credit to you. Children are who they are because of their parents. Yes, life is unfair and we have both been dealt a bad hand but together we can join those hands and try and win this game. Our children may have cancer, but cancer will never ever have our children. Whatever is round Kyle and Harry's corner they will have us to help and guide them and they will never be alone. And you will never be alone, you have me x

Tuesday, 5 June 2012

Jubilee and all that Jazz

We've all been enjoying the jubilee celebrations, with the exception of daddy who is at work all week.
We've celebrated by visiting grandparents - Matthew was totally gobsmacked that his grandad could remember the coronation (he was only 3, same age as Prince Jugears Charles) as that was in the olden times and as Madeleine commented people only wore black and white in those days. Snigger har har. Madeleine also wanted to know why she wears normal clothes as kings and queens wear crowns and cloaks. Isnt childhood innocence sweet.

We also went and joined in a mass gathering at ... Asda. We took along Miss Rachelradiostar. We bumped into some wonderfully lovely friends of mine. Sue and Sam and their daughter Jen. Sue and Sam are foster parents, who fostered my best friend from school, and I spent so much time with them I could easily call them mum and dad too lol. I loved helping out babysit all the cutey cuddly babies and kids they fostered. They made a massive difference to each of those kids lives. Whats coincidentally weird, is that my nephew Phelton is dating a girl called Amber who they fostered as a young tot too. Jen has an unbelievably cute little boy called Daniel, who was sadly for us with his other grandparents.
So a big hiya to you all cos I know you will be reading this xxxx

So we havent really done much to celebrate, there's been no street party where we live, mind you we live in quite a remote bit of the village and it wouldnt be much of a party, unless the sheep and cows were happy to join in, so we watched the concert last night. It was quite good really, don't think the Queen was into much of the music, and the grand finale was a big let down in my opinion, Sir P McCartney should remember he is a has been and hang up his guitar. Even Matthew commented on what a bad singer he was. Had it been Britains Got Talent, am sure 4 red X's would have sounded out. The fireworks were good, pity they couldnt have made it into the olympics opening ceremony, I dread to think how many millions of pounds were blasted into the sky, and how many more will come in July. Bah humbug lol

What will the next jubilee be, asked Matthew as he dragged his tired wee leggies into bed. Erm, 70 years I think, and he replied with, well she better enjoy this one as she's old and will probably be in the stars for the next one. He was then re-amazed as his grandad would see 2 coronations. Ah bless. He also thinks its cool to be a king or queen as you have 2 birthdays.

Well just under 2 weeks til we go to Birmingham again, this time Harry and I will go on our own. Danny cannot get leave and as its Chloe's 18th birthday the day we go down Rachel can't come either. So we will miss Chloe's celebration. We better get good news to make up for it. Harry seems to have come on leaps and bounds, although he lost a bit of weight when he was ill, he's got his appetite back and loves crawling around and standing up at the settees. We've even had a couple of cruising steps. I laughed with the physio as I said I bet the next time you come he's running around. At this rate I can't see why he won't be, his VI teacher told us he will have a problem with depth, ie going downstairs will be really tricky, so maybe when he comes to set off, if his eyes cannot judge properly with what vision he has, he may be unbalanced and fall often, so thankfully he's a determined little thing and will keep going til he's cracked it. Its so easy to forget he is 17mths old, the others were all running at this age. He's still little, but he must have grown a little cos he is wearing some 9-12mth clothes, whooppeee

Enjoy the rest of your jubilee day, x