Thursday, 26 April 2012
Not content with bugging Harry, it decided to go give Matthew a go and 2 days of 39+ temperatures followed. The thermometer I invested in when Harry was on chemo has certainly taken a battering. Probably one of the most 'moneys worth' items I've bought. Not surprised bugs are being spread around cos saying 'put your hand over your mouth' a zillion times a day is just not sinking in and they are all coughing and sneezing.
we have confirmation that Madeleine will be joining Matthew at Quernmore School in September. She is more than ready to go, can now start gathering her uniform and bits together
I also learnt that a little boy I have been following and shouting out on twitter sadly lost his fight against Neuroblastoma last week. His family had been desperately trying to raise money to take him to America for treatment, but his cancer obviously had other ideas. Heaven will be a better place now Thomas Cammack is there, I send prayers and thoughts to his family, I cannot imagine what they are going through and hope I never will.
I better be off, am going to Rachelradiostars house to await her boilerfixermnan. She can now wash her pots in her fixed dishwasher, but now her boiler has packed in so they have no heat or hot water. Hope they have an immersion heater as it may be a bit pongy lol
Saturday, 21 April 2012
Didnt think anymore of it really, he wasnt acting like a really ill baby.
However, the rash suddenly went global, down to his fingers and toes, and although red, it didnt disappear when you pressed it.
Oh, better get him checked seeing as we're back in Manchester on Monday and I don't think an oncology ward would be too grateful for a contagious illness.
Harry's GP (the lovely one who rushed his initial lifesaving referral through) thoroughly checked him over and agreed it was probably viral but it looked a little like a measles rash.
Carry on with calpol and regardless of how happy and unwell-like he is if the rash is no different or worse he has to come back tomorrow. Hoping its gone down. Scary if its measles, but ahem is that not why I let them jab him with his MMR injection?
Well I'm up but its too dark to really see, so will wait for daylight and see. He's chatting and shouting fine, oh and clapping, oh and throwing things ... yes Harry you're a clever boy but let mummy finish this blog.
Its just the 2 of us up, I think Harry enjoys the quietness, he uses is ears a lot to compensate for his eyes and I think sometimes Madeleine + William gets a bit overpowering. September will sort that. My big girl will be of to school with Matthew and William will take her places at pre-school. I will be sad when they both go, (ok I will admit I am looking forward a teensy weensy bit to the silence lol) but they will start big school within a year of each other, poor William will have been 4 for 3 weeks before he starts, not fair when he will be starting with children that are practically a full year older than him, but he's a tough cookie, he more than the others will be able to stand his ground.
Wow, that was a bit of a digression, anyway, lets see what daylight brings, hopefully a lesser rash.
When you're done reading, why don't you click on the Rachels Blog link at the top right of my home page. She's put a year of Harry into pics, and how lovely they are.
Tuesday, 17 April 2012
Well the morning for going to Birmingham dawned, and were we in for an uneventful trip? Nope, is the answer to that.
Whilst gathering my stuff together, cause as usual I'd left it to the morning, Madeleine came running in crying and doing that trying to speak while you're crying thing so you cant understand them but eventually I gathered William had put her rabbit down the toilet. God I hope he hasnt flushed it, but thankfully he hadnt and there it was head first.
So into the wash it went whilst daddy chastised William. Give him his dues, he told us he'd done it and am sorry Madeleine but it was actually funny.
Anyway, this took away precious get ready time and the taxi was coming at 1pm. Yeah right, half past sodding 2 it rolled up.
So 2 and a bit hours of the m6 and we landed in Birmingham. We were given our room at the hotel and has assured there was a cot already in there. So on the top floor, the furthest room away from the lift was ours and hey presto, no cot but a sofa bed made up. So I folded it away, grring to myself and rang the lady in reception. Ok I'll sort it she said. Ooh this is quite a roomy room,lots of space for harry to crawl about.
2mins later she rang back, we're moving you to another room cos it will be easier and you wont be messed about. No its ok I've folded the bed, I just need a cot. No you need to move to a diff room where I've sorted a cot.
Tutting and more grring we moved and the room was tiny and no friggin cot. Harry was now starving and I couldnt be arsed arguing the toss so we went out and on the way I informed smug receptionist that there was no cot, liar liar
Monday morning came and off poor harry went. He was first on the list hooray. I kept him in his coat and pram cos he was supposed to be having an eye test. No not today, so unsurprisingly he was a little warm when we lifted him out into the oven hot ward. No wonder his temp was a little warm but they didnt seem too bothered. I pinned him down while they prised his eyes open to put his drops in. He screamed, dont blame him, think I would too. And off to theatre he went.
He normally sits like a good boy while they knock him out with the gas. Not today he writhed and thrashed about and cried his heart out. Poor thing
The dreaded wait now, but in my mind I was ready for a quick in out and nothing new in either eye again. Sadly I was wrong, his right eye was clear again. Fantastic, this is the 4th visit now. But his left has 2 new seed tumors which they lasered. Effin cancer, I am sick to the back teeth now.
So a bit disheartened we came home. Harry was his usual post op self, but he ate and played as normal, but on his nappy change before bed I noticed he had a rash and his temp was up to 38. Calpol milk and bed, will see how he is in the morning. Could be a mix of teething, bit of a cold, gen anesthetic. Grr hope he not picked anything up.
Saturday, 14 April 2012
Off to Birmingham tomorrow for harrys next EUA on Monday. This will be his 15th general anesthetic. He's becoming a bit of a pro. The team have to ask the same questions cos they have to but we laugh cos they can usually say the answer before I do. It still doesnt get any easier cradling your baby as he is forced to sleep, shushing his protests and holding him still. Its not fair, a mother shouldnt have to do that. But when its helping to save his eyes and life you just have to get on with it.
Harry's nanna is coming this time. Will have an evening of me trying to beat her at scrabble, but she is a jedi master, taught by the supreme master (my nanna) so its not an easy task. I have probably won a handful of games in my lifetime of playing her. I hope Madeleine will want to learn, I have to beat someone lol.
Well I am quietly confident we will have another good visit, Kyle and Owen did, so harry can, I am determined. I still have a little reservation inside incase its not, then I wont be too disappointed. His left eye seems to spend most of its time pointing at his nose. I can see peoples thoughts as they see him, look at that bog eyed baby, if only they knew what was causing it.
Will let you know how he gets on. Hope we dont see too many solitary magpies (read rachels blog)
Wednesday, 11 April 2012
I'd literally just plonked him on the sofa and snapped him using my phone. Am trying to get all 4 of them to sit still whilst I snap them, not easy and yet to be achieved but short of supergluing pants to the floor I will do it.
Matthew asked today why boys have belly buttons. Knowing exactly where this convo was heading (following the white mice episode) I calmly asked why. He advised me that only girls have babies and as they come out via your belly button whats the point boys having them. Fair point, but as I was about to onthespot try and explain he disappeared and not mentioned it since. Phew don't know what my onthespot explanation would have been, but I suppose I better get my thinking cap on, don't thinkI'll get away with 'ask your dad' for long.
Danny is on nights tonight, and conveniently forgot to take the bins out Now for street living folk this just means plonking them by your gate. I live in the middle of nowhere up a track road that would take on the Big One at Blackpool anyday for its troughs and dips so putting the bins out is by no means a quick task.
So tutting and grrring and emptied all our bins and Matthew asked if he could help, so I let him carry the plastic bottle box. I humped tins box and cardboard box and then came back for the 2 grey wheelie bins. Then I remembered that Danny brought them back last time and dropped them down the step as it looked neater by the back door. This is fine when they're empty, but ffs when they're full trying to get them back up the step when full to the top is bordering on impossible. We have 2 because we have lots of kids and we fill them both every 2 weeks. So I gave myself a hernia yanking them up the step and wheeled them round the house so I could drag them down the road. 'Can I help mummy??' aw bless, you pull this lighter one can you manage? Do you want me to hold on too? No its ok, I'm nearly 8 and I can manage. More Fool me, manage to the first pothole and even more grrrring and fffssssing as he accidentally let go and the sodding bin went down. I grasped the handle but it slipped through (now I know what the England cricket team feel like when they drop catches) and yup, almost half the bin came out. Now when I put the kitchen bin out, I tie the bin liner then just drop it into the bin. When Danny empties the kitchen bin, he just uptips it and lets it all slide out loose. So tons of rubbish came pouring out. Reassuring Matthew it wasnt his fault (well not really) I scooped it all back and dragged the bins out. One saving grace, we live in the middle of nowhere so we don't have nosy neighbours to snigger. Walking back to the house, Matthew said 'its nice doing just mummy and matthew things isnt it'. God bless, I let him help take the bins out and you would think we'd been to Disneyland.
I'd left William sat in his buggy innocently eating a packet of crisps (yes okay I admit to a little bribery) and had he eaten them nicely when I came back in. Not likely, he'd obviously crushed the packet (we did this when younger as it made your crisps last longer) and Madeleine (who is a brilliant snitch, no career for her in MI5) advised that he'd clapped his hand on the packet and it went bang. I had to snigger as I pictured the scene, as he was completely covered in bits of crisps and so was the floor. What was heartbreaking was he burst into tears when I hoovered them up 'my pspies' was wailed for about half an hour.
I'll end on a piece of good news. A little boy called Corey who was diagnosed with Neuroblastoma at the same time as Harry was diagnosed has successfully finished immunotherapy in the USA and all scans at the min show him in complete remission. They should land back in the UK on Friday, having spent the last 5m out there. I wish the Ashcroft family lots of love and hope they can settle into a little normality, I know they are nervous and will have loads of 'what ifs' running round their heads, who wouldnt be?
4 days til Harry's next EUA, praying we have a clear visit again xx
Sunday, 8 April 2012
Ours will be filled with all of it plus a little sadness, for it is 12m today since Harry's cancer diagnosis was confirmed. I am not going to dwell on it it, its still awful to think about but its happened and I cannot change it. All we can do is cope and move on as best we can.
What I can focus on is that Harry is still here and fighting it. He's survived chemo and 2 bouts of septicaemia and has had 14 general anaesthetics to date and he's only 15mths old. Because of this evil cancer we've made some wonderful friends in both Manchester Childrens and Birmingham Childrens Hospitals, gained over 1500 twitter followers and have a new circle of facebook friends all facing this nightmare cancer.
Owen Bishop and his mum Katy and his family, Kyle and his mum Mellissa and his family, Lillia and her family, Mya and her family, Londyn Grace and her family and Macy and her family to name a few. What's great is that each time we all have a EUA to face, we're all there for each other, knowing what we're all going through and being able to share each others pain or happiness as our children face their journey and I take comfort in this, as I'm sure they all do too.
I take a moment to think we're they're all at:
Owen has just had another EUA and is again stable, he won't go til July now, fabulous. Kyle is our special trooper, diagnosed later than its usually found and unfortunately lost an eye, his mum was tearing her hair out trying to get it back in, must admit I would be a little freaked too, but his last visit showed his good eye was stable. Lillia also lost an eye, and suffered ill effects from the chemo which she has recently finished, but she is still smiling. Londyn has just reached the half way point in her chemo plan and is responding really well with the tumors shrinking, as is Mya and Macy.
Hopefully Harry will have another stable visit next week, so really when you whizz it down in black and white it doesnt sound too bad, they're all still here and fighting and still being children. What we can do is try and push awareness so all parents know about it, and hopefully get to a point where it is picked up so early, losing eyes/lives and and eyesight will never feature again. Katy is the superstar here!! She works tirelessly on facebook and twitter getting support for the petition.
So back to my point, yes 8th April is a date that will be forever etched in my heart, it marked us from being a normal family to one with a child with cancer and all the stigma attached, but it will also make me count my blessings, one for mentioning Harry's eyes at his 8wk check, two for my GP referring him so quickly and 3 for the whole medical team for saving Harry's life and 4 for the lifelong care his will receive from them all. We are still on Harry's roller coaster ride as I mentioned last April when I started this blog, but its slowed a little and we havent seen many big dippers recently and I hope it will stay this way. Am looking forward to the day we can get off it and hope no other families ever have to get on it.
I will end with 2 pics, the first was on the day of diagnosis and the second is now and Harry is happy on both, and thats what I pray he will be, happy for the rest of his life. I love you Harry Thomas, lets see what the next 12mths will bring x
Monday, 2 April 2012
The kids had barbecue for their tea, I think they would live on it daily. Fresh air does wonders too, they're soon fast asleep.
We had a trip to the park, William slept round most of it, and I decided to introduce Harry to the swings, he loved it.
He giggled and wiggled his legs, it won't let me upload the video grr. Madeleine decided to explore the large climbing frame, and having helped her up to the highest point, she decided she didnt like it. Tough lovey, I ain't climbing up after you. So she had a fast lesson in sliding down large slides. At least getting down was done and dusted quite quickly. She is still complaining of stomach ache, I thought it may be bananas (I am extremely intolerant and allergic to them) but maybe not. Maybe a trip to the docs is needed.
Harry has a new word, 'dont' touch' ha ha he must hear me say it constantly to William, he can also say 'all gone' when he's finished eating. He now says it when he's had enough whether there's some left or not, am glad as he was getting a dab hand at knocking a fully loaded spoon away. He's enjoying his mobility, he obviously hasnt time to crawl properly, just wiggle along commando style is much quicker. We've a few bangs on the head front, especially on the left side.
Well 2 weeks of school hols loom and thankfully a trip out with Marlene from Rainbow Trust is on the cards. The kids love her, Madeleine and William stood for 20mins waiting for her to come last week. She's brill, and I thank the Rainbow Trust for the service they provide.
Well Rachel is finally getting her dishwasher fixed, much to Chloe and Callums relief lol her kitchen will owe the fixerman a medal as it will finally reclaim its work surfaces har har. I only really use mine on a sunday and when Dan's on nights he he, hmmm must go empty it before I forget!