Wednesday, 29 February 2012

Happy Leap Year

It will be 4 yrs before I can write on this date, must be a bit weird if your birthday is 29th Feb.

Can't believe its been so long since I last wrote, I must have been so busy being a mum that I didnt notice the time fly by. Busy listening to Madeleine complaining every day she has tummy ache,think I should prob get it checked out (and for those who know her she has hardly eaten sweeties for ages)so it will probably be an allergy to snacking on fruit and not sweets lol. Am wondering if she has developed an intolerance to something, but she quite often complains her leg hurts too, tho I must confess I had to snigger whilst listening to her and Matthew at the dinner table as she gravely told him she had tummy leg ache, and when he queried she explained her tummy ache had fallen into her leg. snigger snigger.
I am not going to Web Doctor it, prob nothing but growing pains but am irked I have to take another cherub to the docs with a complaint.
She is so bluntly funny, not wetting the bed at night is cause she can keep her wee in her bum and having a trump lets you know a poo is about to come out of your bottom. HAR HAR

On a sad note, a little girl we're friends with on Facebook was diagnosed with Unilateral Retinoblastoma, but despite treatment its been decided removal is the best way forward. My heart goes out to her and her family, and I wish Lillia massive love and luck for Wednesday. I've also made a new friend, Naomi who's little girl Macey had just been diagnosed with BRB, she's 11mths old. Unfortunately diagnosis came too late to save one of her eyes and maybe one day our paths will cross in Birmingham.
In my lasp post, I'd mentioned a girl frantic with worry over her little boy,and thankfully his squint is just that. I know you should never live in the land of ifs and buts, but I am scared that Harry may lose an eye, his left is squinting more than ever, but it will take a shot at every scrap of treatment before I will let it happen.
We're back in Birmingham on 11/12 March, which will make it nearer 5wks since his last visit, but am gong on my own. Hopefully I will meet up with my twitfriend Rachel who lives 10mins from the hospital. Will miss my sis Rachel, we always end up having a laugh and it helps makes the trip less awful.Am being positive, we will get more of the news we had last time.

ANd finally, no repeat performance from William, phew thank goodness. Little old ladies can rest back in ease again.

Tuesday, 21 February 2012

Happy Pancake Day

Well the kids pestered for pancakes, so I dutifully made them, and surprise surprise none were eaten. I told them they didnt like them, and yes mummy was right. As always.

Well I went to Asda yesterday, and took my mum. She only needed a few bits so she took William to the cafe while I finished off. I think he got a little bored waiting, as when I got there to drink my tea, he was ready for off. He kept standing up on the seat, and for the umpteenth time mum told him to sit down. In is clearest voice he shouted f@@@ off. I splurted a full mouthful of tea everywhere. I was shocked, heaven knows where he';s picked that up from, and in my sternest voice I had to tell him off and say we dont say those words. Thankfully he's never said them since, and I I laugh when I look back, kids eh??

I got a letter through from Manchester this morning advising Harry was due in theatre on 23 March with a Mr Bowen. A little confused I rang querying it, thinking they'd made a mistake. No there was no mistake, it was in fact to have his Hickman Line removed. Astounding that they fully expected him to still have in place despite finishing chemo in September, He would have still been having weekly line flushes, what a waste of resources. Thankfully Harry had it removed in October when he developed his second bout of Septicaemia. The secretary apologised their records hadnt been updated but confirmed this time span was about normal. Harry's community nurse had said she would engineer it that t would be removed early, saying it was blocked when she flushed it as its a health risk having it there, especially when its not needed.

Harrys next appointment for Birmingham came through, they've left it 5 weeks so they can avoid easter making it a six week run for his next after that. Thats fine, but they state 3 weeks is necessary to keep on top of new growth for the laser so am a little anxious now that its giving those nasty little tumors too much time to grow.

Fantastic news also for Harry's friend Corey Ashcroft who was diagnosed with Neuroblastoma at the same time Harry was diagnosed. He's currently in America having received immunotherapy which is not available in the UK. His parents have been told he's in complete remission, which is amazing as its one of the most aggressive cancers, praying and hoping it stays that way and they can all come home.

Its been 12mths since Harry went for his 9week baby check and we pointed out his rolling eyes to the doctor. What a year, and I still thank my lucky stars we have a fantastic GP who referred Harry quickly, I am in contact with a worried mum on twitter who's doc thinks she's neurotic and wont refer her baby who has a squint. What harm would it do even if it just gives peace of mind, but it may just save that baby's eye/life if it turns out to be something more sinister, why wont docs listen to mums, mums are usually right.

Thursday, 16 February 2012

Snot funny

I am officially sick of wiping runny noses, true I have a variety of clear through to green, but I am sick of wiping it.
Harry up to now seems to have avoided inhgaling the copious amounts of germs that have been sneezed and coughed and breathed over him by his unselfish brothers and sister, but alas he has started sneezing and developped a cough a 60 a day smoker would be proud of. Hope it doesnt turn into anything nastier, he's still not got 100% immune system. Close eye will be needed.

He had his MMR and booster jabs on thursday, and he barely flinched when they stuck their 4 needles in, he just murmured a little. Its sad when a baby is so used to needles. At least he should have a phobia when he's older. Some babies in my facebook chat group have suffered afterwards, Harry has been like the other 3, completely OK and makes you wonder if it wasnt just water in the syringes lol.

Marlene from Rainbow Trust is coming today, looking forward to the quiet hour as she entertains the other 3, although 3 lots of paintbrushes fills me with a little dread, but she assures me she will clear it all up. Hope she doesnt need kitchen roll, this was all exhaused as nose wipes last week and I forgot to replace it.

If you have a moment, please read my sisters blog it will have you laughing hysterically, I am going to try and add it as a link on my homepage.

And lastly, here's an updated pic of Harry, look closely and you'll see his dracula fangs, keep your fingers away cos he will bite..

Sunday, 12 February 2012

A quiet day really, literally. Danny on nights at the min so needs to sleep through the day. Can be quite a challenge keeping 4 little ones quiet. They were all good.
A mum contacted me on twitter worried about her baby who has a squint and that her doctor won't take her seriously. I understand how she feels, I've met a few mums who went through this whose baby's actually lost an eye due to referrals being made too late and them not being listened to.
I assured her that the cancer is rare, but if she is really worried she should push for the referral. Peace of mind is better than torturing yourself, and how can a GP know its nothing wrong unless they're qualified in the diagnosis of RB! She feels somthing isnt right so is going to make an appt with a diff doc and ask for the referral.
I suppose I was really lucky, my GP is also a family friend so I found it easy to bring up the problem with Harry's eyes. She referred him and pushed the eye dept til they contacted me. Harry's cancer was very severe, some babies with Bilateral are diagnosed a little later than Harry was (unless its known to run in the family then picked up at Birth)and at 3mths old Harrys was stage D. Stage E usually results in removal of the eye, so Harry has quite an aggressive strain. I can only shudder at the thought of us not getting that quick referral. What if they'd left it a few more weeks???? But I always say, you cannot live in the land of ifs and buts. We are where we are and have to deal with it.
I wish Louise lots of luck and hope she stays in touch.
Half term starts now, not planned anything really, Harry has his MMR jabs on Tuesday and Marlene from Rainbow Trust is coming on Thursday and I've arranged to go to a soft play on Friday, but can't remember who with. Doh!

Harry has been practising hard with his mobility. Trying to encourage him as the physio advised. Looking at him its easy to forget he is actually 13mths old. The hardest thing is stopping the others 'helping' him. He has no need to crawl to get things when they are brought to him.

Saturday, 11 February 2012

Way to go Harry

Well the dreaded trip to Birmingham arrived, along with the ice again. Unfortunately there were no hilarious clips of macho men slipping on the ice, but some stupid farmers did help me over a patch of slippy road whilst driving back after dropping Matthew at school. One was using hand signals to guide me to the part which wasnt slippy, unfortunately his interpretation of the highway code leaves little to the imagination and he guided me directly onto the patch where Torvil and Dean would have found it difficult to stand up. Give the men their due, they were pretty strong and they pushed me uphill till I could get a grip and drive off. Unfortunately for one, the patch was close to the edge of the road and he got a face full of mud as my tyre slipped before gripping. Obviously I couldnt stop to apologise and check he was alright, but I LAUGHED all the way home har har har.

Anyway, due to the ice I didnt want to risk getting stuck so arranged I would collect Rachel after the taxi picked me up, slightly worried the taxi wouldnt make it up the hill. But he arrived half an hour early, good job I was ready and alas (he is a very nice man) it was the 60 a day drive at 60mph grandad. Out of the window went the early arrival. I'll take it stedy he said, just in case, now there's steady and there's steady but this was ludicrous. We had the obligatory 'coffee' stop whilst he topped up his nicotine levels. But he got us there safe.
We were allocated room 201. This is the biggest room in the hotel, with a huge amount of floor space and 2 double beds. Harry had a whale of a time, and enjoyed bouncing on Rachels bed.

Anyway, Friday morning Harry went across to the Oncology Day unit and amazingly enough decided to stay awake, despite being starved. He had a lovrly time with the play specialist Claire, and she found his new love of bouncing soon wore her arm muscles out.

The little horror known as Arnie from the last visit was replaced by a slightly better behaved Taylor. Actually it was his parents that needed a slapping, get off your lazy backsides and play with your child.
Harry was second on the list again, although the 6m old baby looked bigger than Harry.
At 10.30am I carried my now sleeping baby into theatre. It doesnt get any easier watching them put your baby to sleep. A quick coffee and we were back to wait for him to come out. This is the wait I hate the most, but eventually (after some tutting and I think they're gonna speak to us after the next one) Harry's consultant sneaked up behind us and led us to the room for our little chat. He is expert at giving nothing away so you have no idea if its good or bad until he speaks.
Well anyway, good news. His right eye remained free of new growth, this is 2 trips on the trot now. That is excellent news, and long may it continue.
His left eye, however had 3 small seeds again but this is a vast reduction in number as it was 8-10 a few visits ago. There was an area on his retina that they are a little concerned about. Round his optic nerve was an area of discoloration which is unusual and something they dont often see. Its usually where fluid or blood has leaked into/under the retina ie a stain but it can also be a sign that tumor tissue is going to grow. They think its the staining as the appearance has not changed over the last few visits, but I suppose some tumors can be so low grade they take ages to grow. If this is the case, and due to the fact its over the optic nerve, and the pathway out of the eye into the rest of his body, they need to keep an eye on this. But all in all they were pretty upbeat and we will be back again in 3-4 weeks.
I waited for Harry, who seemed to take ages to wake up and took him back to the waiting area to have lots of cuddles and to feed him.
Taylor went in next, and what happened next almost made me cry for him. His parents had obviously gone on the coffee run,and after half an hour hadnt returned. Taylor hadnt needed treatment and was out quite quickly. The doc came into the waiting are carrying a sobbing child to look for his mum or dad. No sign, Taylor was by now even more hysterical and upset his mum or dad wasnt there. He sobbed 'they've run away and left me' well the whole waiting room blinked back the tears for him. How could his parents do that, I am itching to get back, I would actually rather not go. They strolled up as we were actually getting into the taxi, some 20mins late.
We couldnt believe our luck, they had rung the taxi and it looked like we were going to get a quick getaway and an early arrival home. Fantastic.
You can imagine our disappointment when 60 a day 60mph man stuck his head round the door and beckoned us. GRR GRR GRR. Out of the window went our extremely early arrival home.
I shouldnt comnplain, I am lucky they pay for and provide transport.

I have to add though, to those who are jumping up and down and rejoicing, that Harry still has a long long way to go, and his right eye might not behave itself next time. You see, Harry has a defective gene and whenever his retinas grow, when they lay down a new cell there is a 50:50 chance it will be a cancer cell, and we can only hope that its only good cells that are put down each time. His retinas will stop growing when he's 5-7 years old, hence his long journey still to come. We are elated that he is where he is at the moment, but remain guarded so we will not be devastated (any more than we need be) should new things start to grow.
I am so so proud of my little fighter, he's giving cancer a run for its money.

Tuesday, 7 February 2012

I cut my finger a little last night, only a slight nick, but it was on my knuckle. As it kept bleeding (the utmost tiniest amount I must add) I wrapped some tissue round. Madeleine was alarmed and very worried, not that I'd cut my finger but that I maight actually touch her with that finger. I decided to put a plaster on, so I cut a strip off (to which Madeleine gravely advised me not to cut my self with the scissors as they are sharp)and thought that would be better. Nope Madeleine ran a mile cos she didnt like plasters and asked how I was going to pick her up and take her to bed. After sniggering a little, I said I would use my other hand, dont think she is going to follow in daddys footsteps and work as a paramedic or doctor.

Well I have been up since 4am with Harry, he was unsettled quite a lot through the night and this time wouldnt settle back to sleep. Probably the big whopper front teeth he's just popping out. We had lovely snuggles on he settee and he went back to sleep, I was then wide awake and freezing, will pay for it later but as Dan's on nights I can go to bed as soon as all kids are asleep.

Couple of days til Birmingham, am sure all the snow will have gone by then. Harry has been a touch snotty and coughed a little, but am gonna put it down to his teeth. William's nose has thankfully started to dry up. Can't wait for them to learn how to blow into a tissue.

Thursday, 2 February 2012

Happy Birthday Madeleine

My dear sweet little Madeleine is 4 today. I cannot believe how quick the 4 years have gone. It only seems like yesterday when she made her appearance into the world...

Due to Matthew being born early, all my appointments whilst pregnant with Madeleine were at the hospital incase she came early. She did, but only by 2 weeks although I was adamant she was actually due the day she was born. Anyway, like with Matthew I wa carrying a lot of water and my bump seemed quite big. Well as I'm only 5'2" there is only one way for a bump to go and thats outwards. The midwives were certain the baby was big, so I was given a diabetes test which was negative They did a growth scan at 36wks, and using their measurements of head and abdomen circumference they deduced she was over 9.5b then and would be 10lb plus born. I was booked in to be induced on my (their) due date so to avoid her getting any bigger.
I only ever measured 1cm bigger than my date, but at 37+5 I saw an obstetrician who gave me the roughest internal EVER, which probably made things happen, cos on 1st February 2008 whilst propped on the settee in my usual sleeping position, watching Jonathan Ross whilst the snow fell, my waters broke. Standing on the bottom step, yelling for Danny whilst my feet were getting wet, yuk sorry) he appeared with a 'you must be bloody joking, its snowing' well its either you get me to hospital or you deliver it yourself.
We got there, and having been accused of simply wetting myself they were going to send me home.
Now this was close to midnight, and I proclaimed Danny couldnt possibly drag poor Matthew out again and could I stay the night. Okay, we'll just do a quick internal before we send you up to the ward. And guess what, no shit, ooh yes you're waters have gone. I TOLD YOU SEVERAL TIMES I HAD NOT PEED MY PANTS, but not only that I was about 5cm dilated. What, what happened to contractions.??? Well, on cue and cos they'd been mentioned they hit me like a sledgehammer. Only pain relief available was gas and air.
We better get Danny back, said lovely midwife. Unbeknown to me she told him he needed to come asap and NO he didnt have time to take Matthew to my mums, my mum would have to meet him at the hospital. He landed and poor Matthew was handed to a midwife and he was bundled in. Not long after Madeleine was born. It didnt take too many pushes, but when she was born the room was eerily silent. She'd been born with the cord round her neck and was rushed over to be resuscitated. That had to be the longest 2mins of my life, but they worked their miracles and she started crying, so did mummy and daddy.
Our beautiful darling Madeleine elizabeth was okay, and weighed in at 7lb 15oz. What happened to the massive whopper I was supposed to have, well she was tiny, the midwife didnt believe she was as heavy as she actually was. She did have a little round belly (she still has it) so that must have weighed her in.
We had to stay in for a few days to make sure she was okay. Madeleine was the easiest happiest baby, she hated being cuddled to sleep and would cry to be put down. She is still to date the easiest to get to bed, and I love her to bits.

Well she had a lovely birthday, got some lovely gifts and cards, and made my heart break when she declared she would share her balloons and cake with her brothers, completely selfless child. I think her favourite present was Hanty Raychels, especially as it contained pink smarties.
It was a busy day, it kicked off with the health visitor coming to check over Harry. He weighs a smidge over 9kg, a little lighter than when in Birmingham last and is still just under the 25th centile line, so it looks like thats where he's going to stay. Am hoping the hosp will be pleased when he goes for his review (not to Birmingham, but to Lancaster and Manchester)Lynne his VI teacher also came. She's pleased we've implemented the play plan she gave us, although most of it is common sense and what we're doing anyway, but its somethims easy to forget to do the running commentary whilst he's doing something, like waving a noisy rattle saying 'Harry, shakey shakey' or 'Harry youre quiet are you listening' she commented his left eye seems to be turning in more and we should mention it when we go to Birmingham next week. Less than a week to go, I know not to build my hopes up too high, but as my newly found motto says 'Dum Spiro, Spero' While I breathe, I hope.

Wednesday, 1 February 2012

9 more sleeps ...

Only 9 more sleeps til we go to Birmingham again, its coming round fast, but something major is happening before we go, and its not about Harry.

This time 4 years ago, (having been worrying for the previous 2 weeks that I was carrying a supersize baby as the hospital was predicting my baby would be 10lb plus) I settled into my familiar sleeping place ie the settee cos i needed to be propped up. Snow was merrily falling, when pop my waters went. I will finish this tomorrow on Madeleine's actual birthday, but things were definitely moving this time 4 years ago.

Now, she's beside herself with excitement at turning 4. She's been counting the number of sleeps, and after I put her to bed, I could hear her giggling to herself. She seems to have grown up overnight. A beautiful little girl with angelic blonde hair and I love her to bits. I will write more tomorrow.

It will be a busy day tomnorrow, Danny will get home from night shift, Madeleine will open her cards etc, take Matthew to school then the Health Visitor is coming to check Harrys weight and length to see if he has grown any over the last month, I think he has but we'll wait and see. It will be reported back as they want to make sure his chemo drugs havent interfered with his growth. Lynne his VI teacher is coming again at lunchtime and all the while we've got to be as quiet as poss as Danny needs to sleep before he goes back on a nightshift again.
I got his MMR and booster Jabs appointment through the post today, Tuesday before he goes to Brum, hmm hope it doesnt make him too grumpy.

We got him a Fisher price Jumparoo, its like a baby walker crossed with a door bouncer. The seat unit spins 360 degrees with loads of activities to play with. At £90 he better like it.
Having spent the best part of a half hour constructing it, I held my breath as I put him in and ... success. He laughed so much he gave himself hiccups. He must have bounced for 20mins solid. Brilliant invention, wish I'd got one sooner. Its really to help him build some strength in his legs but at least he can have fun whilst he's doing it.

Harry's got a new Twitter follower, Sebastian from Dancing on Ice. Naturally we want him to win lol but what a really nice guy. See you tomorrow x