As the title suggests something fantastic has happened, Harry went to Birmingham and yet again has shown cancer who is boss. He is clear again. Absolutely no sign of regrowth, new tumors or jack-shit. Fandabeedozee.
'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
Thursday, 14 March 2013
Monday, 4 March 2013
I really should get my backside into gear
Hello Folks,
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!!
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
Half Term Shernanigans
Well, living in the northwest and having to be different from the rest of the country, we have just finished our half term holiday. I think the rest of the country have been back a full week.
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?
MONDAY
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.
Tuesday
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!!
Wednesday
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.
Thursday
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.
Friday
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.
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?
MONDAY
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.
Tuesday
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!!
Wednesday
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.
Thursday
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.
Friday
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
What will you give up?
Happy first day of Lent. A day when people traditionally give up something for the next forty days. Mine has usually been chocolate. How original!
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?
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
Am still here!!!!!!!!!!!!!
Dear Blog
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
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
Monday, 10 December 2012
Its beginning to feel just a little bit like Christmas
Now we have got the trip to the dreaded Birmingham out of the way and knowing Harry is still stable we could turn our thoughts to Christmas.
The wooden, eco-friendly, re-usable Advent calendars were brought out and filled with chocolate and whilst feeling in the Christmas spirit I decided to put up the tree and decorations.
Its either a job you love or hate and sometimes I feel both. But this year, I was bang in the mood so up the tree went.
And so the finished product.
I love just having the tree lights on at night time, it makes everything seem a bit more magical. I blitzed the santa shopping and just need to wrap it all if I can dare brave the cold going to the garage to get it all. Not much room for hiding things, especially from one 8yo who is seriously doubting the existence of Santa. His mind is too logical, like what is the point of toy shops if santa brings everything, why have I got rolls of wrapping paper if santa brings everything, and how can one person do everything and magic is just an illusion not reality.
Still the middle two are giddy with excitement, and Harry just trots around saying mismas.
Its going to be lovely, the kids will love their gifts, and danny will enjoy the chaos as he is not working this year and to top if off Harry doesnt have to go to Birmingham til the New Year. Simply perfect!
The wooden, eco-friendly, re-usable Advent calendars were brought out and filled with chocolate and whilst feeling in the Christmas spirit I decided to put up the tree and decorations.
Its either a job you love or hate and sometimes I feel both. But this year, I was bang in the mood so up the tree went.
And so the finished product.
I love just having the tree lights on at night time, it makes everything seem a bit more magical. I blitzed the santa shopping and just need to wrap it all if I can dare brave the cold going to the garage to get it all. Not much room for hiding things, especially from one 8yo who is seriously doubting the existence of Santa. His mind is too logical, like what is the point of toy shops if santa brings everything, why have I got rolls of wrapping paper if santa brings everything, and how can one person do everything and magic is just an illusion not reality.
Still the middle two are giddy with excitement, and Harry just trots around saying mismas.
Its going to be lovely, the kids will love their gifts, and danny will enjoy the chaos as he is not working this year and to top if off Harry doesnt have to go to Birmingham til the New Year. Simply perfect!
Saturday, 8 December 2012
Awol
I am very sorry I have not updated for an age. Everytime I sit down to do it, one of the angels demands my time and it goes out of the window.
Firstly, harry had a clear visit again, which was amazing. It means we do not have to go back until the new year so we can enjoy Christmas without the gloom of new tumors hanging over us. This makes it 4 consecutive visits now, and whilst not being complacent, am quietly cautiously optimistic that when harry turns the magical 2 in January and when retina growth starts to slow down that we may have turned round a corner to winning this fight.
Mind you, there are plenty of families who thought the same and relapse, regrowth and new growth started so thats why I am not being complacent.
Madeleine is much better after a nasty ear infection which ended up perforating her eardrum. It must have been agony for her, and I wasnt impressed with school leaving her to cry assuming she was just missing mummy who was in Birmingham with harry.
I have to keep it dry for 6 wks whilst it heals. That will be fun washing her hair. She could also get recurrent ear infections too. Grr winter bugs.
Xmas is just round the corner. My cards are written, my tree and decorations are up (will post a pic separately) just need to sort the mountain of gifts I need to get. You can bet that as I have left it so late it will he sold out locally so I will have to trek out to the toy superstore. Oh well it wouldnt be Christmas without a little stress.
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