What a year ...

I will have a quick run through, month by month of the year in the Riley household. Hope I don't miss anything.

JANUARY
The new Year dawned with the safe arrival of Harry Thomas on the 8th Jan weighing 7lb15oz. It had been a frantic couple of days as he'd stopped moving and his heart traces were all over the place. It was a huge sigh of relief when I cradled him (after superb birth partner Hanty Raychel held him first)
William went to the docs as a tiny mark he'd been born with started growing alarmingly. The doc thought it was an infected cyst, gave him some antibiotics and referred him to the hospital.
My mum and dad celebrated their 40th wedding anniversary - am sure the secret to their success is the absence through fishing and constant nagging, plus having 3 brilliant daughters (me being the most brilliant) to help them

FEBRUARY
William met with the consultant who said on looking his lump appeared to be a subdermal cyst, but it needed removing to be on the safe side. An appointment will ebe sent in due course
My darling Madeleine turned 3
Harry was referred back to the hospital as he was a deep shade of jaundice yellow, weekly visits to check his bilirubin count was coming down followed

MARCH
On the 3rd I carried my sweet William into theatre and held him whilst he was put to sleep, a nervous hour later he was back and very sleepy. The consultant was still sure it was a subdermal cyst and nothing sinister, but as it had started burrowing inwards and close to affecting major blood vessels it was absolutely the right thing to do and remove it.
On the 5th I turned (ahem 37) and my lil sis 35.
Harry had his 6-8 week check and this was the start of his battle. The doc asked us to go back 2 weeks later as it could just be developmental thing, but 2 weeks later, his eyes were still rolling and he wasnt responding to anything put in front of him. Her words (and they still haunt me)were 'oh Lisa I don't think he's seeing' I left awaiting the appointment with the opthalmic team at the hospital thinking my baby is blind or may need bottle bottom glasses

APRIL
1st APril dawned and thinking about April Fools I took my sweet little baby to the eye team at the hospital. This still remains the worse day of my life as the consultant put in stinging eye drops and looked into his eyes, in silence he called another consultant in and then I knew something serious was amiss. Finally they confirmed they could see some 'raised lesions' on his eyes and needed to refer him to a specialist centre as the word retinoblastoma was springing to mind, but they weren't experts so couldnt say for def thats what it was.
My world came tumbling down, a lovely nurse grabbed Harry as I burst into tears. I knew what retinoblastoma was. We went home awaiting Birmingham ringing, holding onto the hope that it was something else and he would just need glasses. Deep down we knew.
8th April Harry went under anaesthetic and it was confirmed, Harry has Bilateral Retinoblastoma Stage D. Very advanced for such a young age (he was 13wks old) and he needed to start chemo immediately and have a lumbar puncture and bone marrow biopsy done to check it hadnt spread.
3 days later, Harry and I went to Manchester where he had another anaesthetic to have a central line fitted and the above tests done. Chemo started the same night.
The rest of April was a blur really, we were constantly in hospital, or had MAcmillan and socail workers with us, Easter holidays were forgotton as we started out on Harry's journey.

MAY
Lots of chemo, line flushes and temperature checks done this month. William gave us all a fright by having a fit whilst at the swimming baths, he needed a 2 day stay in hospital.
Matthew turned 7 and they all had to have eye drops and eye checks to see if they had the cancer whilst we waited for Harry's blood gene results coming back.

JUNE
Happy Birthday Hanty Rachel - who turned the big 40. She also started to fel ill andlittle did we know what that would turn into
More chemo, line flushes and trips to Birmingham - beginning to feel our lives were controlled by the NHS. Harry also started to suffer some side effects from the chemo as his blood count started to take longer to recover and he stopped gaining weight. Another trip to Manchester where they put a Nasal Gastric tube in - which Harry took great delight in pulling out at any opportunity he could get.

JULY
HAnty Raychel was really poorly, and it seemed to take the docs ages to start sorting it out, she was as yellow as yellow can be.
More chemo and line flushes, then bang on school finishing Harry became very ill very quickly and was transferred from our ,local hospital to Manchester, where we were told he had septicaemia, caused by an infection in his line, we had a 2 week stay with strong antibiotics, and when his blood stopped growing live cultures, we were allowed home with a 4-a-day 2week course of antibiotics. Biggest reaction to this infection was that Harry lost even more weight. He was struggling to stay above the 13lb mark. He had chemo and went straight to Birmingham.
William had his 2yr check with the health visitor (Dan was home alone snigger) and sailed through. He is way beyond his years in most things. Think he blew her away when he counted to 20, pointed out all the shapes and numbers then proceded to go thru the alphabet. Clever, just like his mummy

AUGUST
Harry was the colour of snow and started getting bruises everywhere, had his blood count checked, and his Hb level was 6 and Platelet count was 13.
Normal range is 10 and 150, so off we went to Manchester for a blood and platelet transfusion.
Sweet William turned 2
The rest of the school hols passed by in a blur of line flushes and chemo and just before his dose of chemo his line was blocked aarrgg.
Off to Manchester and some clot dissolvoing drugs were put in, he only has one more chemo left, please do not cause his line to be removed

SEPTEMBER
Last chemo hip hip hurray. We faced 4mths on the waiting list to have his line taken out when.....
he became very ill very quickly again,and an urgent ambulance transfer again was on the cards. IV antibiotics till they found he had septicaemia again, caused by an infection in his line, probably due to his line being blocked. He was really poorly, but one fantastic thing happened because of it, his line came out at midnight as an urgent case.
Once we were home, Harry never looked back. He pulled his feeding tube pout for the last time and slowly but surely weight started to creep on

OCTOBER
He had a follow up appointment and his blood count back to a satisfactory level, his immune system will take 6mths to recover so we still have to watch him, especially with chicken pox and measles.
His first trip to Birmingham following the end of his chemo revealed it had worked and all the tumors were looking inactive. Nothing new had grown.
We sort of sat back and relaxed ..

NOVEMBER
Harry gaining weight, still on the lower centiles but he's gaining all the same. I found myself becoming addicted to Twitter
Trip to Birmingham and those laurels I was resting on was ripped out from under me, Harry had grown 6 new seedling tumors. This can happen in the first few months after chemo has stopped
Birmingham 3 weekd later and 8 more grown - don't worry they said. Easy for them to say, its not their baby

DECEMBER
Harry had a visit fromn the Visual Impairment team, they will begin their teaching in the new year.
Harry started his tiny baby immunisations again
Matthew was a brilliant shepherd in his nativity service
We were getting ready for Christmas BUT ONE THING STOOD IN OUR WAY... BIRMINGHAM
Having nearly broke my neck on the ice and my dad nearly had his car wiped out to get out of the house, we went down again.
Again he had 8 new tumors grow. I am more than a little concerned then outraged when we then found out these new growths can happen for a year or so, esecially til they turn 2. What happened to the first few visits??
So I am now resigned to the fact that he will have new tumors each time we go, and look forward to the time they say there's nothing new.
We had a lovely Christmas despite everything has happened and vowed that 2011 was unbelievably bad and 2012 can only be better. I pray to god we are right and I will ensure Harry is as well as he can be so he can give his cancer a good kicking. Hate is a very strong word, but I hate cancer.
Hope you all had a good year, and I wish you a very Happy New Year.

Ps I know it waasnt much of a quick resume but what the hey.
Love from Lisa, Harry Danny Matthew Madeleine and William xx

Where did Christmas go ...

OK, our lounge resembles Toysrus still and the kitchen is still unrecognisable, but we have had a lovely christmas.

For the first time in years Danny actually had the whole of Christmas off, ok he's working the New Year but we don't do anything special for that.

The kids were unbelievably giddy on Xmas eve, but unsurprisingly were easy to get to bed. I half expected Matthew appearing first, but it was Harry who got up first. He must have been really excited lol, it was only 5am. Not long after tho, Matthew did appear saying he had a really bad cough which woke him up, needless to say it miraculously disappeared the minute he got into the lounge. william followed not much later with a bleary eyed daddy, and poor Madeleine was woken up, she's a girl after my own heart and loves her bed. I never get to be in it as long as I wish, but never mind.
What took Santa over an hour to bring down and arrange into according piles took about 20mins to be opened and the first chocolate consumed. I was a little worried we hadnt got them enough, but by the time everyone elses gifts were added to their piles, I looked around in horror thinking 'omg where am I going to put all this stuff'

THe kid loved their presents, although William seemed a little bewildered and was actually playing with his toys as he opened them, Madeleine was obviously impatient, as having opened hers and Harry's decided williams needed opening too. She will be an expert gift unwrapper lol.

Well, they have spent most of the time playing with each others presents and actually having the nerve to dig out some old battered things. I started the clear out in Matthews bedroom. He has a new Xbox, so was persuaded to store some old broken things in black bags and be put away. Put away in the bin more like. 2 black bags later and his room has a little more room, including a second drawer for his star wars lego collection, which is growing rapidly. My fingers are still hurting from building it, we both set off doing it, then after a bit I realised he had sneaked off, but like the silly muggins I am I finished them off.

Harry has cut a third tooth, which probably explains the grizzling. Am hoping thats all it is, would be nice to have one xmas holiday with no illness by anyone. He turns one in a couple of weeks and has his baptism coming up, and also another horrid visit to Birmingham. Plus the start of his VI teaching and another set of vaccinations so its all still a bit hectic

Thats all for now, I will come back on later and fill in any gaps plus add some piccies. William has gone suspiciously quiet, so I must go investigate. Bye for now x

A very horrid weekend ..

It was always going to be a 'not nice' weekend but it turned out even more horrid.
Sunday morning dawned and Danny returned from work at 7am, well he sort of did. Turned into the bottom of the road and couldnt get up. It was like Blackpool ice rink so he abandoned the car over someones drive and dragged himself home, phoning me about every 2 mins. Grr I thought, ffs Danny its only an icy patch. He's such a wimp when it comes to winter driving. So, he got in and went to bed. So when daybreak dawned, about 10am I rang my dad and asked if he would come up so I could get the car. I needed to get the kids to his house, pick Rachel up and get home for 1pm for the Birmingham taxi coming.
10:30am, Dad rang. The road IS icy and he is stuck in front of my car. WHAT!!!!!
So I slithered down the road, its quite a steep hill, did a couple of triple salkos across a few drives and got to my car.
Carnage. A car had slid into my dads car, a car was diagonal across the road and every neighbour was desperatly trying to stay on their feet. Was quitre amusing to watch I musg say, especially when a farmer. returning home in his 4x4 all wheel drive on anything car decided to stop in middle of icy road, get out and see if he could help. What happened next usually only happens in Tom and Jerry. He stood up then his feet slipped and he frantically tried to stay on his feet then up in the air and landed flat on his back. I turned away to snigger.#
Anyway I still have a major problem, car and me and my dad now at bottom of hill, kids at home and taxi on its way.
To cut a long story short, dad managed to slither my car backwards round the corner onto the flat, do the same with his car, and we tried to go round the other way. It was just passable, we got the kids and all our stuff and headed back to dads. The taxi was intercepted and told to meet us there. Down the huge big dipper hill, the car slid and after a very hairy scary moment with a wall looming very quickjly, dad recovered and drove it away. Phew thank god for dads.

We left for Birmingham about 1pm, me Harry and Hanty Raychel. The journey was okay, motorway quite clear and we chatted through the mornings adventure, unaware we were going to have another.
As we approached the split in the M6 for the toll road, a car at the last minute decided paying £5 was too much and turned back on the normal M6, over the white hatchings thats illegal to drive on. That split second decision by that prize idiot (and yes it was a man!!) nearly cost us our lives. Our taxi driver, who drove a steady 65, slammed his brakes on and came to a stop inches from the offending car. We were almost sideways on the carriageway. Oh my God, then we braced for something slamming into the back of us and unusually for the M6 there was nothing, and I thank god for that. It was very scary and I think the taxi driver was a nervous wreck after that. He must have been, cos the take home driver knew all about it.

We spent a lovely couple of hours in Brum town centre, and met the lovely Harry Mosely family, who were raising funds for Brain Tumor research in memory of their lovely son who died a month ago. Harry had snuggles with his mum. A truly lovely lady, and heartbreaking watching her cuddle my Harry, knowing hers is watching from the stars.

Anyway, I will just recap what happened at the hospital.
Harry went down to theatre about 9.15am and yet again was in ages. That wait is so awful, the worst actually.
The doc came out and dropped the bad news again, Harry has grown more seedling tumors, which they've lasered. All the existing tumors plus the new ones from last time still look inactive. So he said it was good news and what they expected Back in 3 weekds.
I'm sorry, but to me new seedling tumors is anything but good news. And I don't care whether they expect this to happen or not, my darling baby is still growing nasty cancer. The nurse explained a little better, but its still horrid.
The period after chemo when they see some activity is not just the first few visits they had me believe, it can go on for years, especially up to the age of 2ish when the retina grows at its fastest. So they are not surprised if new ones grow in this period, so it looks like we have at least 12mths of going every 3-4wks. Not happy. They are more concerned if the new ones grow in clusters making them more difficult to laser, or if old tumors start re-growing and then they need to rethink his treatment, but at the moment they are quite happy that the seedling tumors are sporadic, on the outer rims of his retinas and are laser-able. We need to concentrate on getting harry to use what sight he has and they will come up with a plan next time we go.

I am still angry that the cancer dares show its face and I know not to build up my hopes for nothing new at the visits we go to from now on. And as the nurse says, it doesnt matter what form its in and that to look at he looks quite well, Harry still has cancer and he has to fight it.

Well Harry may have cancer, but cancer will never ever have Harry.

Its snowing ..

Well today dawned with out first snowfall and it was sticking. The kids were excited, Natthew especially as its his last day of term too. Harry looked so snuggly warm

Its only 2 days til we go to Birmingham and am getting nervous. You can see on this pic his left eye turns in a lot more than the right. Am terrified its cause the awful cancer is rearing its evil ugly head and invading again, or more (hopefully) likely its just as the pic was taken. Am so so so so hoping we get 'no new tumors' this time.

Any way, I digress, it was covered in snow this morn, and when I loaded kiddies into the car, Harry was squealing and giggling as the snow fell on his face. I wish I had captured it on my phone so you could all share. Matthew was planning his snowman for when he got home from school. Think he was a little disappointed when the rain came and washed it all away. Looks pretty, but where we live makes it a nightmare to drive to and from the house. Twice last year we had to abandon the car and trek up the mega hill home. As its remote and in the country, it doesnt get gritted.

Matthew's school re-enacted the nativity in a lovely service in the church. Matthew was a shepherd. Here he is walking out at the end. Must say I was impressed with the costumes, not one tea towel was in sight.

I must admit I was rather smug that my three were as quiet as mice (maybe had something to do with the bribey sweeties I took)and I was very proud of Matthew.

Still what I cannot get away from is that its only 2 days til Brum. Don't wanna go. FACT.

minus 1 week and counting ....

1 week til Birmingham. Its not fair, we should be getting excited about christmas but instead we've got the awful gloom over the christmas spirit whilst we wait for next week to come. I am sure we will get good news, Harry needs a break and surely its his turn for one.

Saying that, Christmas... aaarggghhh. I am so unprepared. Cards are only half written and gifts are almost non-existent. Tuesday I am gonna blitz the lot. At least I've got my turkey lol.

William had his eye appt on Friday, and Marlene our lovely Rainbow Trust friend came along. Don't think she was ready for the number of times William would try and escape from the ward. 'Wow, he's quick' she said. He was also determined not to be beaten by the docs, and after half an hour they admitted defeat. Seeing as his lazy eye isnt all that lazy by their standards they decided to leave it 6m and check again. He will be a little older, she said, and will prob sit better. I am not so confident lol.

My sis has got her tree up. Its lovely, but not as lovely as mine. har har
Hers is very purple and silver and drains the national grid with the amount of lights on it, and I am sure the branches are reinforced as she has so many decorations, but honestly it is really lovely, and as she lives in a row of victorian terraces, hers is by far the best on display in the row. She and her family are going to our mums for Christmas day lunch. Hope you like soft sprouts and broccoli lol.

We are staying at home this year. Will be the first Christmas Dan has had off in ages, tho he is working New year.

Talk about getting ready for Christmas, I have to sort his 1st Birthday and Christening for 8th Jan. We are going to be mega skint for a while lol.
8th Jan is going to be a special day for Harry and I am going to forbid any talk of illness and the like. A celebration day. It is likely to be the weekend for the next brum visit, but they can sod off. He won't be comin that day, like it or lump it.
Just in case you need a little Harry fix ...

A horrid day ..

Well today saw Harry starting his tiny baby vaccinations again. A good thing for his little immune system which is still re-building itself. Apparantly it takes a good 6 months from the last chemo session for it to recover. Chicken Pox and Measles are a deffo no no.
Anyway, he obliged with lots of coo's and gurgles and didnt really flinch when they jabbed both legs on the count of 3. Brave boy who is obviously so used to needles they don't bother him.
Its now its bothering him. 9pm and he's still sobbing. He's been thru chemo and never murmured and now some vaccines are getting at him. His legs are probably sore. Still, the cuddles he's wanting are nice. Like a little hot water bottle.

Then we had the bad news (sort of) Harry will go to Birmingham on Sunday 18th Dec. It then kicks of the horrid horrid feeling of the 'what if' scenarios. I am hoping beyond all hope that we get good news this time. would be the best Christmas present ever. Hanty Raychel coming this time. Dan's on nights so he can't come or watch the others, my mum is visiting her sister that weekend so my other sister Annette is going to come and stop with them. They must feel like spare parts.

Madeleine went to watch the main school at her pre-school perform their Nativity. She told me all about it...
The hayngel gabel had some christmas decorations in her hair.
The baby Jesus was born in a box... was Harry born in a box?
Some boys had towels on their heads and dresses on .. why did boys wear dresses
Some kings brought muck and gold and something else
me .. what was Jesus's mummy and daddy called? Madeleine.. mummy and daddy. No, did they call them by other names?.. Babies can't talk.. what was the lady called that came on a donkey... it wasnt a donkey it was a dog.

Har har har thats a 3yr old persepective of the Nativity.

Matthew genius child is on his 12x table. He came out of school today with a hand decorated paper bag with 2 lovingly made mince pies in. Oooh a present for me I thought.. no chance he scoffed both of them. His reasoning was he'd made them so he ate them. Share? you must be joking.

And William, well he's Just William xxx

Just in case you need another Harry fix x

Its beginning to feel a lot like Christmas ...

Well we have our tree up, and its lovely.

Just need to crack on with shopping to make sure Santa's got something to leave underneath it.

A new friend I met on twitter has just flown to St Lucia to renew his wedding vows. That it so wonderful, what isnt wonderful is that he has terminal cancer. He sends lovely messages for Harry, God indeed has a special purpose for him, chief Angel. LIfe is so unfair. Hate cancer so so much.

I sent him the link to my absolute favourit song, the words have lovely meanings and I dedicate to Harry. You can click the link and listen along whilst you read my blog.
http://www.youtube.com/watch?v=05MykSuOxP0

A special friend of Harry's who was diagnosed with Neuroblastoma at the same time as Harry was diagnosed flies to Philadelphia today with his family. UK protocol has given him all the treatment they will give here, but the US gives immunotherapy which is proven to help. They will be over there for 6months and have had to raise all the cash themselves to pay for it. £250,000 thereabouts. Why the UK puts so much little value to childrens lives to save money is mind boggling. A child has every right to life, it is not its fault it was born and if there is something that will enable its life it should be given. We all wish Corey Ashcroft and his family all the luck in the whole wide world x

I'm expecting Harry's next appointment letter through the door anytime soon, life cannot be so shit that it gives us bad news again before Christmas. I am so tempted to say he's ill and not go, but the longer you leave it between lasering the more chance it has of getting hold of him. The benefits far outweigh but I hate it. Hope Rachel can come, got a funny feeling it will land bang on Danny's nights, and as his uber helpful employer the ambulance Service dont give a monkeys any time of is unpaid as he used all his paid leave at the beginning of Harry's journey. Anopther little Riley may have to come with me and find someone to look after the others.
Sod off cancer and leave Harry alone.

Where was I ... oh yes the tree is up and its beautiful. I;'ve twittered it and its had loads of loverly comments. William keeps saying 'what happened, Wheres Christmas, wheres presents' Cannot wait to see his face on Christmas morn.

Have booked Harry's Christening for 8th Jan, and for those that can remember that happy date, its also his first birthday. Its going to be a special day for him, and there will be absolutely no talk of cancer, hospitals or anything. I forbid it.

Finally, Happy Birthday to my dear Dad and adored grandad. Love you lots xx

Trying to crawl

As you can see Harry is doing his bestest to get on his hands and knees. He can do either but no managed both together yet.

Had a visit from 2 lovely ladies from the Visual Impairment Team, one of whom will be Harry's teacher. She is very nice and Harry seemed to like her. They will come weekly!!! and there was I thinking it would be something they would do nearer going to school time. He's got a lever arch file full of targets and milestones he has to achieve, wonder if he will get a degree at the end of it. His lessons will start after christmas.

Hanty Raychel spent the day with us, we popped into town to do 2 banks and 2 shops, however we seemed to bump into everyone and us putting a 2hr ticket on for 'just in case' actually very nearly ran out. She read a zillion stories to Madeleine who seemed blissfully unaware Rachel was making most of them up as MAdeleine had chosen the longest possible stories she could find. Nice one Rachel.

And here we are to Friday again, quite a short but eventful week. Next week will be just as busy, Harry got his jabs on Tuesday and William got to have more stinggy eye drops on Friday to see if they can see if he is long sighted enough for glasses. They had him as unco-operative last time. Excuse me, you try forcing eye drops into a 2 year old, pin them down in a dark room then have a complete stranger try and look into their eyes and expect them to sit completely still. Hmmwe shall see.

Look what Hanty Raychel made me ...

How cute x

Its 5 am and .....

1) William is wide awake, so get up and ..
2) Everyone else is still asleep
3) I get the laptop all to myself without someone asking to play cbeebies
4) I actually get to drink a HOT coffee
5) Must get my dressing gown cos it's cold and the heating hasnt come on yet
6) I get to drink another hot coffee.
7) scratch number 6, Harry is stirring.

I know my Monday post seemed full of doom and gloom but I wasnt really in the mood to be jolly. Life has to go on and I still have to be a mummy and house wife, so lets get on with it.
On a plus note, Harry has gained some more weight. He's still only the size of an average 6mth old but he's gaining nonetheless. This means he's building up his strenght too. He's doing his bestest to crawl, and can actually go backwards in a fashion. Sitting up for a few minutes, but he loves being on his feet so thinks he can just fling himself back and get onto his feet. The others think its funny, well William doesnt when he gets hold of any of his toys. The sideways stern look is hilarious as he emphatically states 'thats mine'. It whizzes me back to when he was doing it to Madeleine's stuff and she threw the same look and comments.

Got the Visual Impairment team coming tomorrow. Will probably be armed to the teeth with info and stuff. Let you know what they say.

Matthew off school today due to the Public Sector Worker strikes. The annoying thing it goes down as an absence on is record (although coded not his fault) but I do agree with the reason behind the strike as it affects Danny too. Just hope to god you don't need an ambulance today, cos they are on strike too.

Well the news wasn't exactly what we wanted to hear, it was in fact the good the bad and the ugly.
The good, his existing tumors are completely inactive, hooray,
the bad, there were 8 new seedling tumors (these grow into the whacking great big nasty ones if untreated).They were on the outer rims of his retinas which meant he was in theatre ages. 75mins as opposed to the 30mins it usually is. They were all lasered, hopefully to annhialation. But it was still new growth. WE WANTED NO NEW GROWTH. They seemed a little on edge to me, despite them saying new seedlings are expected. They want to see him in 3weeks. His left eye is deffo worse than his right, and they want a sight test each time we go down now and will look to doing some patching to stop his left eye switching off. Maybe William will be happy wearing his when he gets them if he sees Harry wearing one.

And now for the ugly .... his RB nurse har har. She's actually lovely. Its BRB thats ugly. (Bilateral Retinoblastoma)

I need to laugh, because right now I'm not feeling too great. Its so so hard sitting waiting then being told your son's nasty cancer hasnt gone away, and they need to keep an eye on him. They mentioned other treatments they could look into if need be, and havent ruled out he may need more chemo, god forbid.

I HATE YOU BRB AND YOU CAN JOLLY WELL SOD OFF AND LEAVE MY BABBA ALONE.

3 wks time, we will get 'no new growth' because nothing else will do.

anxiously waiting ....

Today the day I didnt want to come, but here we are. Waiting waiting for Harry to go to theatre. He in quite high spirits considering he's starving and about to be put through help. I hate waiting. Feel sickly nervous, hoping to god we get good news. Will update late x thanks for caring x

2 more sleeps. aargh, its getting too close. Please give harry a break.


He met Santa tonight at Matthews school fair. They decorated the school and its all twinkly and christmassy. Matthew took harry in with him and I tried to get a pic but it rdidnt turn. Out. Childish I know but I wished with all my heart for good news on mon morn. Matthew wished for a laptop, an xboxx, a nintendo 3ds and an ipod. God loves a tryer. Madeleine point blank refused to go in.
Whilst waiting in the queue I overheard some chitchat mainly 'is that the baby with cancer' excuse me but that is a he and he does have a name. Gonna make a. Placard for the pram.

4 more sleeps

This week is going too quickly. Horrible panicky feeling. At least harry blissfully unaware at the mo. Am sure he knows once we're in the hotel opposite the hospital, he's always unsettled.
This will be his 9th general anesthetic. Doesnt get any easier carrying him into theatre. Please please let it be good news. Really scared and dont wanna go.:((
Ef

Its still dark

Harry been awake and giggling since 4.40am. WOuldnt have minded the early wake up call had his biggest brother not woken me 3 TIMES through the night with a bad dream. Grr. Day of tiredness to follow.

Harry's appointment letter came through yesterday, good job I rang them to check what day we were going to Birmingham as 5 days is not enough notice. Its okay for them, they can just assusme that everyone can just drop everything and run at the drop of a hat. That reminds me, need to ring the transport people to check they have us booked down. I am certainly not driving all that way and especially not in the Brum centre, its a nightmare. Don't think even the best sat nav's could deal with Brum centre.

William was deliciously cute yesterday too, he trotted after me all day and said 'Love you mummy' constantly. He made the checkout lady in Asda laugh as he was trying to move Harry's legs away from him (they were touching him ever so slightly) and saying 'stop it Harry' then to me in that telltale whiny voice kids do ' mummy, Harry leggy touching me'

Matthew and Madeleine now know I'm going to Brum this week, they've already booked their spots in different beds. Daddy's cool cos he lets us stay up late and eat sweeties. I must be such a cruel mummy lol.

Oh, well, coffee pot calling me. Going to have a look into the Family Fund - recommended by one of his consultants. Its for families with disabled children or children with life threatening illnesses. It's easy to forget (thats a lie its not) but when you've got such a busy daily schedule with all 4 children Harry's illness becomes part of it. Its still hard to bear when you're reminded that he has a life threatening illness. Bloody BRB.

6 more sleeps ...

Me and my teddy bear.... ah bless.
If you look closely you can see his blonde hair growing back.

He's trying his hardest to get up on his hands and knees. He just doesnt have quite enough upper body strength yet. Sodding chemo, it really knocked the wind out of his sails. Its like time stood still and now he's playing catch up. Keep trying Harry, you'll soon be off.

Looked at Madeleine today and thought 'where has this little girl come from' She seems to have grown up overnight. SHe loves her pre-school. She has almost cracked writing her name, and its not exactly a short one. She asked if she could come to Birmingham this time, only to see if they have a play room at Birmingham hospital like they do here. She soon changed her mind when she realised she can sleep in Matthew's bed, as he's already claimed my spot. It makes it a little easier to go knowing they're happy here. It would be awful if they cried, its bad enough going as it is.

6 more sleeps to B day (Birmingham day). I had a quick look on the webpage for the Childrens Eye Cancer Charity, and scarec myself with the some of the life stories on there. They're supposed to help, but each one had tales of eye removals and blindness. Where are the happy ever after stories? or are there none. BRB leave Harry alone.

7 Sleeps to go ....

Oh my lord, this time next week I will be settling Harry down after his last feed til he wakes from the anaesthetic the next day. It's hurtling too quickly and I am so so nervous. I think I am more on edge than I have ever been. I need answers to the last letter we got from them, but at the same time I don't want to hear it. I am praying to any god that will listen to make it all alright. No new growth is what we need to hear, but I can't help having a feeling this won't be the case.

Spent a lovely few hours at hanty raychels. Think she overdid the bionic woman routine and realised that she's just had surgery and needs to slow down. Its a relief she's on this side of the op now, and the rest means she's knitting for England. Am so looking forward to Harry wearing his new Jacket she's just finished.

Genius son Matthew learnt his 9x table this weekend, he's doing yr4 work but he's only a yr 3. Am going to have to buy him some new pants, He's grown yet again, grr. Tall genius!

Only 9 more sleeps ....

Only 9 more sleeps til we go to Brum. I don't know why but I've got an awful feeling we won't get the best news. He had 6 new seedling tumours last time, and yet according to the letter they sent last week outlining his last appointment, they yet again dropped more on us than they'd told us about, mainly a patch in his left eye that needs very close monitoring. He's only doing 'quite well' which doesnt fill me with confidence that we will get an all clear visit with no new growth. So I am dreading going, am scared of going and I HATE BRB with the utmost loathing. It is mean and nasty and my poor sweet innocent darling baby does not deserve it.

On a nicer note, I picked up his photos from his portrait sitting. They are sooooo cute and the photographer did really well to avoid Harry's wandering eyes. I will scan them and post them soon.

I should count my blessings, I came across a lovely family who just said goodbye to their baby girl Estella who sadly lost her battle with type 1 SMA (Spinal muscular atrophy). She was only 8months old. Sweet innocent children do not deserve to suffer with these awful diseases and illnesses. Leave our children alone!!

Latest piccie of the angels. Cannot believe how grown up Madeleine looks.

Harry's hair grows really fast now, he's got a lovely soft shadow of blonde hair. He's trying to get on his hands and knees too. Once he's off that will be a good test of what he can see as lots of bumped heads equals not seeing what he's crawling into. Do they do cycle helmets in diddy size?.

Matthew completely cracked me up yesterday with his biology lesson. He exclaimed that daddy made Madeleine and ,mummy made him, as Madeleine has a fat tummy just like daddy and his was thin like mummy's. I kissed him for the compliment and am still sniggering at the daddy comment. Needless to say he didnt find it as funny.

As predicted yesterday, I did indeed fall asleep on said settee. Oh well, lets see what tonight brings.
Took Madeleine to school this morning and had a major battle with william who point blank refused to leave. Quite funny really as there was one parent dragging their kiddy in and me dragging william out. He will go on a Friday morning after Christmas. Don't think he will worry about stopping methinks.

Rachel had her op today, all went to plan and they successfully removed offending gall bladder via keyhole surgery. She is understandably a little sore and groggy, but hopefully she'll feel better in the morning and hopefully come home.

Harry sat unaided for about 5mins today, he's slowly catching up

Got the registration pack to add Harry to our local county council blind register so he can start to get any help he will need. We had a little snigger at the accompanying letter. It was on 6 A4 pages in mega sized font, (in normal font would have been half a page), erm we can see fine, but the final paragraph, 'if you need us to send this letter on audio tape please let us know' cracked us up.  If we cannot see, how would we know what it said to request such tape.
Life is shit, but we have to laugh sometimes, there is little to smile about Harry's condition.

Hanty Raychel is a bit nervous now, she has her Gall Bladder taken out tomorrow, hopefully just by keyhole. I must remember to remain solemn when I visit so not to cause tension on her stitches from laughing. As a real treat I took her to Asda with me. She (as she always does on each visit) assured me she just needed a couple of bits. I never believe this as yet again she spent £50 and filled 6 bags. Good job twin pram wasnt in the car.
Dan's on 3 night shifts now, so got the TV, bed and settees to myself. I will no doubt waste all three by falling asleep on the settee as I am tired. Gonna make some fruity toast now. Yum yum, bye bye

Harry went to see his consultant at Lancaaster today. She was lovely and he obliged with lots of gurgles and smiles. He's put on a little more weight and now tips the scales at 7.64kg (16lb 12oz) and is 70cm long.
He's still betwen the 2nd and 9th centile so short and light for his age but what the hey he's gaining. Bit by bit he'll get there. She will see him in 4m to see how he's getting on and has referred him to the physio as she thinks his poor eyesight will hinder his being able to sit independantly as he will struggle to see for balance and also where to counter balance. So yet more interferers. I did say he will prob do it in his own time, after all he's been really ill, but it will be the same physio that Matthew was under as a baby so she's really nice. She cn come for a coffee. She warned me to keep him well away from measles and chicken pox and he still has direct access to the ward.
Trying some new more lumpy food at the mo, and he doesnt like shepherds pie. Can't blame him really. I have distinct memories of my mums shepherds pie when I was young, and the watery grey mince and stodgy mash still turns my stomach. I have never made it for any of my children (Harry's was a lazy shop bought one) and his expression will mean I never will.
Big sis has her gall baldderectomy on Wednesday, hopefully just by keyhole. Sending big hugs her way xxx

Well William was bouncing around his cot and demanding to get out right now. Looked at the clock and thought oh William its a little early  but out he came and then realisation dawned... the clocks had gone back and it was really 4.24am. No amount of coaxing was going to get him back into bed. This is going to be a long day.

Harry's eyes are still a bit sore, his left is still quite bloodshot, one of the side effects of the laser, and they are both a bit weepy. To top it off, I think he's caught Madeleine's snotty nose. He's just sneezed 2 spectacular candles yuk. Amazing, all the time his counts were at baseline not once did he get a runny nose. His consultant did say it takes 6month after chemo has stopped for his immunity to build back to a normal level so I suppose he will be a little more susceptible. Chicken Pox and measles are still to be avoided like the plague, and if we suspect he has it he needs medical attention. Great when we are just entering the season of such illnesses.

Leave Harry alone!!!!!!!!!!!!

Well we went to Birmingham and my beautoful baby boy was put to sleep for the 8th time and we had the horrid hours wait. Hoping for good news again, but no we got a kick in the teeth.
Harry had grown 6 new seedling tumours, 2 in his better right eye and 4 in his poorer left. They lasered them hopefully destroying them before they have chance to grow any bigger. The existing tumors still remain inactive, some good news at least. The consultant seemed upbeat and was almost expecting to see this, as it was 2 months since his chemo finished and his eyes and retinas were settling down but not to me.
New tumors are still new tumors and they HAVE ABSOLUTELY NO RIGHT WHATSOEVER GROWING IN MY BABY'S EYES so cancer hear this, next time we go in 4wks time you better stay away or you will have his mamma to deal with!!!!!

Despite this, he is still his usually giggly self with his shadow of blonde hair looking a little thicker and now has 2 little peggies. (bitten once ouch). You super little fighter dude Harry xx

tfi friday

Some fab facts about today
1) Its friday
2) Last day of school so no school runs for a week
3) Dan started run of 4 night shifts today so TV, sofa and Bed all to myself.

Matthew is whizzing through is times tables, and got a really good half term report. Clever clever boy, just like his mummy. Madeleine can't wait to go to Matthew's school. Bet she changes her tune come next September when she has to go. William continues to be uber cuddly and sweet and Harry has 2 teeth.

He had a follow up in Manchesterthis week. They were pleased with him and how quickly he seems to have bounced back from his last chemo. His immunity will take 6mths to recover so we still have to watch out for chicken pox and measles, but apart from that his immunisations can re-start. They will see him in 6mths as he will be going to Birmingham every 4weeks for the next god knows how long.
It seems a little strange thinking about chemo in the past, it sometimes only seems like 5mins since 13th april and we had it all to come.You think 'how are we going to cope etc etc' and he we are. It was hard, tear breakingly tough sometimes but we still got through it. I cannot thank enough my family and friends who came through with us. The chemo may be over for now, but we still have the long journey to carry on and next week is creeping nearer and nearer. Please please everyting be okay.

Rachel has a date for her gallbladderectomy, 9th Nov. Reassuringly near, but still horrid for her. Hope she doesnt feel too bad afterwards, Chrimbo wont be that far away and she has to be better for that. She is normal looking again, much to Matthew's disgust. He was most impressed with her yellowness.

Quick thought for Cameron, my friends little boy, who is getting ready for his bone marrow transplant. A tough little cookie who will kick the ass of ALL. I hate Cancer, leave these sweet little children alone!

Aw Harry you happy little boy. The chemo must be out of your system. We finally have very blonde hair sprouting, its ultra fine but what they hey, its still hair. Also your second tooth is just about to pop out on the bottom.We can almost imagining your a normal baby with nothing wrong. 2 weeks to go til we're back in Birmingham. I am so so nervous, as it will have been 8wks since your chemo finished and I am hoping to god everyting will still look dead with no re-growth or god forbid new growth.

Well my car is dead and fit for nowt. So have now got a slightly older but miles better Galaxy. And its blue. Madeleine wanted to know when I'd painted the new car. She's so funny. She's full of why questions at the minute, and always at the most inppropriate moment.
Well I've been down to Birmingham and this time Rachel came. I thought the break would do her good. We spent an hour trawling the shops looking for some sandals/flip flops for me as I'd gone down in shoes and it was mega hot. Not easy when most shops are now stocking the Autumn/Winter range. Thank heavens for Primark. Madeleine wanted to know why I got auntie Rachels shoes on when we got back.

Anyway, Harry knew where he was, as night fell he turned from the lovely cooing little baby into the 'I will not go to sleep crying baby' and after an hours rocking auntie rachel finally got him off to sleep. I was erm fast asleep too, soz Rachel.

I made our brekky nice and early, ready made porridge, all you need is hot water. They were in Pot Noodle type pots and eaten with the accidentlly fell into my bag plastic spoons from M&S. We dutifully arrived before 8am, as instructed on our letter, and did they start at 8? no friggin way. About 8.30am they decided to start weighing and putting in eye drops etc, but still Harry was first down.

The result, his right eye tumours were all looking dead. They lasered anyway just in case a sneaky little cell was hiding somewhere, they will carry on laser for the next few visits. His left eye, they lasered the little seedling tumours, which too looked dead, but there was a query over the big tumour. Its appearance, in the specialists opinion, looked like dead tumour but a reaction to the laser giving it an odd appearance. It could also be live tumour still. 50/50 aint bad I suppose. He wanted to leave it alone and see what it was like next time. If it looks the same, then its just the way the dead tumour has left a scar, if its changed then its still alive. No harm will come to Harry, they will laser it next time.

No more chemo too, if anything should grow back they will try other treatments first, chemo only if they don't work. So stay away you nasty tumours.

So all in all pretty good news and we set off with a little lift in our step, only to have it dashed severely by ther bloody awful traffic on the M6. It was sooo hot, we had the windows opened and was deafened as the aircon wasnt working. But home we landed, back in 4 weeks time.

I think my car is dead!!

Well, shortly after I wrote my last update, I noticed Harry looking a little rosy and a bit grumpy, I thought uh oh I bet he not going to be well.  The nurse came to flush his line and 20min later his temp shot up to 39.1.
Off to hospital we went to get checked out, and his temp stayed at 39 despite calpol. They took some bloods and as he was still neutropenic we were packed off to Manchester in an ambulance.

His horrid septicaemia bug was back, and after a bit of consultation with the docs, they decided his line had to come out, it is causing too much trouble.
Not that I wanted Harry to be ill, and not that I wanted him to go to theatre but I was a little glad, NO MORE TUBE YAY HAY
It just means that should he need more chemo (and I hope to god he doesnt) he will have to have it put back in). They took it out and as his temp had settled we were allowed home at the weekend, with strict instructions should his tempo go back up he goes straight back in, as his blood was still showing positive cultures when we left.

Slight down side, as he hadnt fed for a few days they put his nasal tube back in. This time on the other side of his face and he obviously hasnt twigged yet, as he still fiddles on the left side looking for it. It makes my life a little easier I suppose as we have 2weeks of oral anti biotics and they taste yak, so they can go straight down the tube. I will pull it out myself when he's finished them.

AND FINALLY (and yes I have to write this in capitals as I am actually shouting from the rooftops) I HAVE IT IN BLACK AND WHITE MY OTHER DARLING ANGELS DO NOT< NOT<NOT HAVE THE DEFECTIVE GENE AND THEY WILL NEVER EVER EVER GET BRB. HOORAY I CANNOT STOP SMILING

Well, I think I have commented a couple of times about Harry pulling his naso-gastric tube out, well it was getting to be a daily occurence. I probably caught him just before it came out like a million times a day before he finally triumphed. The staff at RLI were probably getting a little tired of him pulling it out (they were the ones that put it back in....constantly) the community nurses were putting it back in at least once a week too and to be frank I was getting a little pissed off too.

I think Harry does not like having a tube up his nose, can you blame him? so he has now been tubeless for 5 days. Knickers to Manchester and the dieticians. After the wrangle I had with my last visit and their being worried about him, where are they??? They havent rang or kissed my behind or nothing,  so I have made the decision to keep it out. He is now chomping happily away, and although he wouldnt drink the top-up milk he gobbles the porridge I make with it (har har Harry). The health visitor is coming on thurs to weigh him, if he hasnt gained then I may think about having it put back in, but to be honest Harry is soooo much happier without it, and its like I'm getting my baby back.

Got my update letter from Birmingham following his last visit, and they confirmed he's been put on the visually impaired register. Brings it rushing back like a hurricane, at least they are using the word 'regression' when they're talking about the tumors. Hip hip hooray

Harry has cut his first tooth.

Hooray

A new waiting game

We have started a new waiting game. About 6 weeks of torture as we wait for the genetic results for Matthew Madeleine and William.
I took them to RLI last week and held them down whilst they took 5mls of blood to screen them for the RB gene that has gone wrong for Harry. Chances are they wont have it and this is the result the genetesist is expecting, but it has been heard that people can carry the gene without them actually having the cancer which they can then pass onto their children, so to make sure I can sleep a little easier we reluctantly agreed to screening the other 3. You can't help but play over the 'what-if' game in your mind whilst you wait the results and I am sure all will be ok, but til I have it in black and white I must endure the waiting game.

On a side note, William has had his refraction test to see if he is short or long sighted before they start correcting his lazy eye. This can be a sign of RB, but thakfully his initial screening (along with the other 2) was negative. I had to pin him down whilst they squeezed those awful eye stinging drops in and 20 mins later once his pupils were the size of saucers hold him down whilst the opthalmologist checked his eyes.

Firstly, his retinas appeared normal and he could see no RB, whoopee and secondly he is slightly long sighted in both eyes. But obviously it was so slight he doesnt need glasses so we made an appointment back with the other lady to start his patch treatment. This appt isnt for anpother 6 weeks, grr just give me the patches and I'll do it myself. He could be well into his treatment by then.

My children are going to develop an aversion to medical appointments, as up to now they have been subjected to pretty horrific things, of course Harry gets the worst of it all and I thank god as he is just a baby he will have no memory of it years down the line, that is if bloody BRB buggers off and leaves us alone for good. I shallnt hold my breath.

Well thats Matthew back at school and Madeleine in pre-school, the house is uncannily quiet. William is so enjoying having mummy to himself. I am feeling a little off, got a headache and that achy tickly throat and ears feeling, hope it doesnt amount to much, and sure hope Harry doesnt get it. He's starting to change into the grey faced mottled skin look he gets about day10 after his chemo, which all being well will be the last in this first tranche. Still got to keep an eye on temperatures etc for the next few weeks til he goes back for his follow up appointment.

He has got his appetite back a little and put on a little more weight. 7.2kg yesterday but that was fully clothed. Way to go Harry. I am panicking tho about an infection, the other day he did the largest no2 I have ever seen come out of  baby, and being breastfed still it still has the runny yellow consistency (sorry TMI) so it vesuviused out of the top of the nappy, right up to his armpit, the only thing it completely covered the end of his hickman line. I wiped it clean with alcohol swabs, but he had had it flushed the day before so the membrane on the end had already been punctured with a needle so I am a little worried some bugs may find their way into his line.oh and to finish it off, I laid him in his pram whilst I washed my hands, came back in and he'd pulled his feeding tube out again. grr Harry
Only one good thing may come of this and that he will get his line out early, but I don't want him to have the infection that goes with it. Oh well, back to temperature watching then.

Where did all the time go....

I can't believe I have been so lazy and not put any updates on, it truly only feels like yesterday.

Anyway, since my last little moan my sis has had her op and has been discharged from hospital. Her bilirubin count reached 780 (thereabouts) and as you are technically jaundiced at 20 she was uber uber jaundiced. Her consultant had tut tutted and said he hadnt dealt with a case as bad since 1993 and could not believe the medical profession had let her go so long. 10weeks long. She has 5 weeks to recover and regain some strength and then she will go back for her gall bladder removal. Watch this space.

Anyway over to my clan. Matthew remains a cheeky monkey and has grown massively. I hope his uniform fits when he goes back next week. Madeleine's voice seems to have found a volume knob all of its own and William has swallowed a dictionary. The switch in his brain from baby babble to sentence talking has been firmly switched on. He is losing his babyness big style, and last but not least Harry.

Harry has had a successful visit to Birmingham with more laser surgery featuring. They were sure he wouldnt need more than the 6 doses of chemo at this stage but would be sure on his next visit. Some good news then.
He has gained weight and was really enjoying his food until he had his last dose of chemo, it always knocks him off and we will have to start again, but hopefully he won't lose any weight and will keep well. He was 6.9kg and thats massive for him. He's grown into 3-6m clothes at last. He has to keep the darned naso tube in til his follow up appt in 6 weeks.

I will return when I have some funny things to say. ttfn x

I'm sick of smiling and being the amazing person everyone says I am. You still get a bullet in the chest when you see your babys name next to a statement which reads 'severely visually impaired (blind)'.
I know it doesnt mean he will end up being totally blind but when you get the medical guys talking about it you know fighter pilot will never feature in Harry's CV.

Well the said weigh in opened a huge can of worms, and my usual calm composure got to the verge of turning into a rampaging monster. I HATE HATE HATE HOSPITALS AND BRB AND CANCER AND WEIGHING SCALES.

I'm calm again, lol. I was quietly confident that Harry had gained a little when some strange health visitor came, plonked her scales on the carpet and weighed him. Scales should be on a hard surface as they sink into the carpet but no, she knew what she was doing and looked at me like i was a complete moron. So according to her wrongly placed scales he had actually lost a little weight and was back at 6.12kg. So the inevitable phonecall followed to Harry's dietician in Manchester who voiced how worried she was that he was so little and she would have a word with his consultant.

She rang back the next day and said he would have to go see Eddy his consultant so sort a new diet plan. I queried this as we are due in on Tues anyway and surely a week wouldnt matter, but they are so worried they wanted to see him. So I opted for thursday, sorted childcare and decided that I would start weaning him (the hosp told me to hang fire whilst he got settled on his top up milk and would advise when to start) and increase his top ups from 60ml to 75ml. He has 5 of these a day.

He quite enjoys his porridge, and have moved onto apple flavour too, yum. Scoffs the lot. Not yakking up so I think I got the balance right, He has some solid food 3 times a day. ANyway, late weds night the hosp rang to say the transport company couldnt pick us up so had to cancel. Hooray. Childcare cancelled. Thurs morn and Eddy's secretary rang asking if I could make my own way to the appt. No, my care needs attention and I darent risk it on the motorway thats why we needed transport. Ok, can you get here tomorrow (Fri) err NO my car etc etc dur brain. I explained that he was in Lancaster fri morn anyway having blood count done, going to Birmingham Sun/Mon and we back in Manchester tues, so that will have to do. I have oincreased his feeds and started weaning. Oh ok, I'll let Eddy know.

One hour later, Eddy's nurse Sue rang. She is lovely. She asked the same question. FFFFFFS. I explained it all again to Sue, I can't make appt today as I have cancelled childcare and have no transport etc etc. When I went through what he was eating she agreed that there couldnt possibly be anything more that could be done that wouldnt wait til tues. She would let Eddy know and not to worry.

So, getting on with things I nipped to the shop when my phone rang. I nearly didnt answer it, but not one to be rude I did. This time it was Eddy. Yes, he was actually ringing himself. My heart sank, Manchester wins a medal for persistsance I give them that. He voiced his concerns about Harry's weight and that he needs to see him as he couldnt let it go on and Tuesday was 5 days away, so again I ran down my list:...

1. I have cancelled childcare so cannot make today
2. He is in Lancaster friday anyway, so am sure they will weigh him, plus I had promised the others I would take them out, and I am sick of them always feeling like they take second place to Harry. I know Harry is ill but he is not the only one in the family. If it was for treatment I would go, but seeing as it was just for a meeting I am not disappointing them again
3. I have started weaning as I am still waiting for you guys to give me the go ahead and have increased his top ups to 75mls
4. I am in Birmingham sun/Mon so I will come to Manchester as planned on Tuesday.

He went on and on and on how he wasnt doing his job right b lah blah to the point I got majorly upset and teary (yes this was all in the middle of the co-op) until he conceded and said he would get the dietician in Lancaster to see him while I was there getting his bloods done. He would fax his new plan to him to pass on Ok, thank Heavans for that.

The Manchester dietician still had to ring later on thurs just to make sure I had been contacted by absolutely everyone, she liked what I was doing and said 'see you on Tues'.

Anyway, Fri morn dawned and off to Lancaster we went. The Lancaster dietician couldnt actually come but he did say he was more than happy to have Harry as a come and go patient to help monitor his weight and feeds etc if it would help. Super, things were looking good. Harry weighed in at 6.52kg, so he had a good gain from the wrong weight on Mon anyway. Had his bloods done and off we went. Oh yes, the feeding plan. It was exactly what I had myself put Harry on, his usual breast feeds, weaning and 75ml top ups. SO what was all the sodding fuss about, they were stressing me out about my non-attendance to talk about what I had told them I was doing.

So you can imagine I was majorly unimpressed, especially when the lovely nurse from Lancaster rang with his blood count and told me that Paul the Lancaster dietician had called Manchester to offer his help going forward. He was told that Harry was categorically under the care of Manchester and thats where he would be staying. Slap on the back for Paul when he fired back 'so its okay for me to see him at the drop of a hat when it suits you'. He wasnt wanting to take all of Harry's care, just to help out as someone local I could get to easier if I needed to. He told them to shove it (but to me secretly he is there whenever I want to ring him)
Paul you are a superstar.
Anyway, his platelets were 315 and Hb 10.6 so Birmingham would be okay, but neutrophils still only 0.2 and as they need to be at least 1.0 he prob won't be having chemo on Tues, but I will still have to go re weight etc

God, that was a long rant. I am so fed up with hospitals now. BRB you can pack your bags and disappear. You have outstayed your welcome, not that you were ever invited.

Been a pretty non-eventful couple of days really. Harry of course had pulled his tube out so a quick visit to hospital today to have it put back in was made. He doesnt like having it put back in, you think he would have learnt to STOP PULLING IT OUT THEN. He's going to be weighed again tomorrow, hopefully he hould have gained a little.

My niece and nephews girlfriend are organising a sponsered triathlon to raise money for Macmillan Nurses mainly for Harry. What a lovely thoughtful thing to do. I set up a 'just giving' page for them so they can collect on-line donations, and we have had £160 donated already. The triathlon isn't til October. The lovely messages that have been left by complete strangers is touching, it brings tears to my eyes xx

On a down note, despite having a op to put a stent in to start draining the shit out of her blood, Rachel remains as yellow and as itchy as ever. A few days she was told then she should see some effect. She is going to ring them tomorrow for advice. Its getting her down.

Well after a very long day, we were collected at 7am and home at 9pm, Harry now has his platelets. They did a fresh blood count in case his body and made so many in the 2 days he didnt need his transfusion, alas no. His count had actually dropped to 2. Scarily low. Lets hope in the 10day life span of these transfused ones his little body starts to make their own. Of course he had the nurses falling at his feet too.

My niece and nephew's girlfriend are organising a sponsered triathlon to raise money for Macmillan, mainly because of Harry. What a lovely thing to do and I hope they get loads of backing.

Harry had his bloods done, and as I thought his platelets are low, but lower than I thought. They should be 150, and his are 13 so he needs a transfusion. His Hb level is also low which explains why he's so pale.
So yes, we're off to Manchester in the morning. Hopefully they'll be prepared so we won't have too much waiting to do, but not holding my breath.

I managed to steal away the kiddies comforters to wash, they were extremely yukky and stank. Probably the source of Harry's infection lol. Out they came lovely and clean and fresh smelling. Madeleine looked most unimpressed and didnt really look at hers for the rest of the day. She did ask 'when is all the clean going to come off'

Rachel still feeling crap despite her op, but they told her it could be a few days for the jaundice and itchin to start subsiding. Matthew was dead impressed with her colour especially her teeth which she'd painted white. She found it funny thank god. He was also disappointed that he'd missed seeing Madeleine tumble down some of the stairs at my mums, knocking william over as she fell. He asked if anyone had video'ed it on their phone so he could watch it. I chastised him, everyone else thought he was funny.

I took him to get some new trainers from Clarks shoe shop. I knew he needed some new ones as he'd just been fitted for new boots, the shop assistant (also a childhood friend) asked casually if Madeleine and william wanted a shoe check, imagine my shock when they had both grown a full shoe size, never mind just a half. So £100 quid later they were all kitted out in new footwear, all with flashing lights in. I am still recovering from the the fastest goodbye to £100 in history, and from the fact I'd been jamming my kids feet into shoes that were a size too small. Just cause clarks say feet grow every 12mths kids doesnt mean you have to oblige. God help me when Harry needs them aaargggh.

Harry has stopped being sick hooray, but he was weighed yesterday and has lost roughly half a pound boo.
Hopefully we can start building him back up. Going to get a blood count check today, have a funny feeling his platelet count will be very low (despite him being at day 12) as he has a few bruises. They may want to give him a transfusion, maybe check again next week and see if his little body can do its magic by itself I don't know.

He must be feeling a bit better as he kept rolling off his changing mat last night, and yes it was on the floor lol.

Still being sick.

We want our happy Harry back x

William is 2 today x

wow, where did those 2 years go. It doesnt seem 2 minutes since he was born, well actually thats a lie cause of everything thats happened since it also seems like a lifetime.

2 years ago today my darling William made his appearance. Rachel was my birthing partner, and after several false alarms (even more than with Harry) she became anxious as she was going on holiday at 6am on the 6th August. So 10pm on the 5th I rang her and said 'its the real thing this time' so off we went to hospital. Despite the midwife saying he would be here by midnight, naughty William decided to hang on a couple more hours and arrived at 2am. It was to make sure I went through the motions of 'I can't do it and 'I want an epidural' but Rachel was a fantastic partner and was the first person to see William and hold him. I am sure the black top was prop not the best colour to be wearing and she jolly well made sure she was wearing an apron with Harry! and at 3am she rang Darren to bepicked up. She must have been knackered as they dutifully went on holiday at 6am.

I wish I could wave a wand and keep William as he is. He is the most loving cute cheeky cuddly little boy ever. Hope you have a lovely Birthday xxx

Harry is at day 10 and is looking pale, I am a little concerned as he is being sick quite a lot and not really wanting to feed. I have started him back on his anti sick meds to see if it helps, really don't want to ring the hosp as I can imagine they may want to see him if it doesnt improve. Come on Harry, all that extra weight you put on will be falling off, I know I can give him his top up Milk down his tube, but thats only ok if it stays down. Am sick of washing sicky sheets and babygros, makes a change from pooey ones I suppose.

Where has my Harry gone??

This latest round of chemo really has disagreed with Harry. Probably a combination of being ill, then chemo then laser all together but my happy gurgly baby has been replaced by with a sad crying hurty baby.

Its as if he is in pain, especially when you pick him up, maybe he is achy and his skin hurting, the nurse said this could be his chemo and maybe give him calpol to see if it helps. His temp is okay thank god.

I am also FED UP of washing pooey clothes so I am thanking god he has stopped his anti biotics and maybe this will stop his poo being uber runny and coming out constantly.

That aside, he seems to be seeing more, I dangled a toy over his head and he moved his head and eyes following it. Something taken for granted by most people, but to me it was a wonderful thing. They have been able to start lasering the larger tumors in his eyes along with all the smaller ones. We have pictures of the before and after to date and the difference is amazing although the blackened calcified deposits look horrendous  but who cares as long as the tumors are dead. I have a feeling his chemo will be extended, as they still hve a long way to go and he only has one dose left and they did say it would be increased if need be.

I must say good luck to my sis who has an op today to remove the offending gall stone which is causing her anguish and yellowness. I know she is scared and who wouldnt be, but I hope the relief will be instant and she can get back to her normal self. Good luck Rachel xxx

Harrrrreeeeeeeeeeeeeeeee

Harry was a little unsettled last night, hoping he's not ailing but when I got up at 1.30am he had pulled his tube out YES OUT.
This is getting a little boring now Harry. It was done twice whilst we were in Manchester and home for 2 days and its out again.
I tried to give him his meds straight from the syringes and after some (and I have to say pretty over the top) balking he sicked most of them back up so yes, off to hospital again to have it re-passed.

One hour later and it was safely back in, meds down and top up feed done and then I caught him trying to do it again, Har har Harry, too slow for mamma and now it has extra tape on. Pull it off if you dare lol.


I must say hiya to a new friend I met in Manchester, Cameron and his family. They were in the same ward when we first landed, but managed to go home for the weekend before coming back for his next chemo. I think Harry stole their hearts, but would love to get William and their little one Luca together. They are the same age and full of the same mischief. Mega cute and funny and certainly made my day pass by a lot brighter. All the kids and their families are soo lovely, one little boy Rory became a big brother as his mum went into labour and went across to the maternity unit one night. She was back the next day as if nothing had happened along with baby Hugh in tow.
 I pray for Haleema and her family as they awaited her diagnosis as I left. They have already sent one little boy to the angels due to cancer, life could not be possibly so shit that it could stike again and also for the family of the baby who was clinging to life. I have no idea if it became another angel baby but I was touched that some of their family came to see Harry. They said his happiness made them feel better, and they stopped by the next day with others saying' this is Harry who we told you about'
It is so nice that we can share some of Harry, he certainly seems to steal the hearts of anyone who meets him, but hands off cancer he's mine!!!!

Just when things couldnt get any worse

Well, its been a long long long 2 weeks..... a shortened version if I can.

2 weeks ago, I noticed Harry seemed to be a little off and wouldn't feed properly and at tea time I thought I'd check his temp (one of the tasks drummed into me for chemo patients) and it was 38.5 C. Protocol states that anything over 38 requires urgent admission for antibiotics whilst they check him out. I frowned and uttered ffs Harry and wondered if my thermometer was faulty. No, my temp was normal. I checkd it again, both ears and it was still 38.5. Saturday teatime, great.

Rang Manchester and they advised me to go straight to Lancaster childrens ward to be checked over. Harry's temp was now 39. They took bloods, checked him over and started him on IV antibiotics.

He remained poorly for next 2 days with his temp only going down following paracetemol until they got his blodd culture results back. He had septicaemia, his Hickman line showing to be the source and we were packed up and rushed off to Manchester. There followed 10 days of specific IV anti-biotics and we clung on to the hope that they would work and his line be saved. If not he would need a 2 week stay whilst they took it out and a new one put in with anti-biotics in between.

He gradually got better, his temperature stopped going up and we finally got the news we were waiting for, his blood had stopped growing bugs. I thank you Louis Pasteur, your Nobel Prize was definitely well deserved.

We stayed at Manchester and they gave him his 5th dose of chemo and then whoosh down to Birmingham we went. He will have oral anti-biotics for another 7 days.

Anyway, Friday morning dawned and Harry went under anaesthetic to see if there was any improvement, and way hey they were able to start laser on his larger tumors. They were really pleased with his progress.His tumors are till responding to the chemo, although they havent ruled out he may need to have his 6 doses extended. We will wait and see.

He was spectacularly sick when he came round but we did eventually make it home. I missed my other little ones like crazy and being apart from them for such a long time was a killer.

It was a truly awful 2 weeks and my tale seems to make light of it, and maybe I was a bit blase about the chemo has Harry had been doing so well up to that point. To see your baby so ill is horrid horrid horrid and 2 weeks later he is playing laughing and now rolling over effortlessly makes testament to modern medicine. I shall never take his chemo for granted again and hope to God he remains well forever. Bloody BRB

A week full of hospital, nurse and doc appointments and not all for me. My sis is still poorly, still yellow and now has visual evidence that she has a gall stone. She awaits a phone appt from the doc hopefully to confirm what the one and only sonographer said. She is an amazing multi tasker, she did my scan when we thought Harry had stopped moving the day before he was born and now done my sisters liver scan. NHS cut backs probably. Fing crossed hun xx

Harry, despite his cuteness and smiley giggly feet chewing moments has failed to put weight on. He has infact dropped a touch, I and the Health Visitor were a little surprised as I thought his cheeks were a little chubbier. It will probably have something to do with him pulling his feeding tube out for a record 4 times this week. I am awaiting the arrival of the nurse to come and put it back in. Straight jacket has been ordered.

Slightly out of date pic of my little ones

This was taken before Harry was diagnosed but getting them all to sit still long enough for a pic is impossible. I will upload some more pics soon.

well my sis is still poorly. She is still yellow and itchy, hopefully she will get some answers on Tuesday if her blood results are back. I can't go with her this time, it clashes with Harry's line flush grr. Am sure it will be ok tho.

Matthew was at the hosp on Friday, a while ago our GP referred him for blood tests as he was very pale and tired, his bloods turned out ok, he's just going to be a pale person I think, but they did find a heart murmur.

Anyway, I'd completely forgot about him needing a follow up appointment, so was a little confused when the hospital rang and asked if I was Matthew's mum. I said you mean Harry.. no we have Matthew on our records. They had a mega long waiting list for the cardiologist. You're not kidding, we've been waiting since November for this appointment so hence I'd forgotton.

We went and Matthew was uber good. He had an ECG and and Echo. The cardiologist was trying to explain in kiddy terms what she was looking at, so when she put the doppler thing on you could see his heart unbelievably clearly. This is like a little house she said with 2 upstairs rooms and 2 big downstairs rooms.... Matthew blew her out of the water and said 'thats silly, thats my heart and the old blood goes into the top, moves down into the bottom and then its pumped out again'.   She was impressed, so was I. Matthew has been learning about things like skeletons and what keeps you alive at school. Since when was biology on infant school curriculum?

Matthew's heart murmur is low grade and classed as an innocent murmur. He will always have to state it on medicals etc but will not affect him. It will only ever be heard if he's ill or has a temperature. Great news. We like good news.

A pretty non-eventful week in our house. Harry remains quite well despite developping a cough. Hope it doesnt turn into anything more nasty. He still smiles and gurgles away and has rolled over for the first time too.

I was asked by a nosey parker looking into the pram yesterday 'ooh he's a new one' errr no he is 6m old now. The look of shock was unmistakeable. I have all the centile recordings that say hE IS SMALL AND UNDERWEIGHT FOR A BABY OF HIS AGE but he cannot grow and tolerate nasty toxic chemo drugs at the same time.

The other question we get is ... ooh was he prem is that why he is still on oxygen.... no that is a nasal gastric feeding tube.

Gonna stick a note on his pram... I Have cancer, I am small because of chemo and I need extra nutrition through this tube because I am small..

ANyway, enough of our troubles. My poor smaller big sister is poorly. She has jaundice and is sick. Looking like she may need her gall bladder taking out and its horrid that I can't do anything for her other than take her to the docs and entertain her with my kiddies. Please get well soon, you are my rock but if I can repay some favours anyway I will xx Love you sis xx

I did write a nice long update, but blogger kept crashing and I kept getting pissed off so I turned it off.

So to cut a long story short, Harry had chemo on Tues, it all ran smoothly until they did his last set of obs and his heart rate and blood pressure kept messing about. The doc checked him and said we could go home yay but to keep an eye on him.. could be a sign he's sickening for something. So that made us effing late but am beginning to not care about waiting now, we were home and thats all that matters.

He's not come down with anything... yet. He has , though pulled his feeding tube out again. So yes, Saturday teatime we had to go to the hospital to have it put back in. I just love hospitals, Harry obviously needed his fix of hospital smell and nurses. Keep your hands off Harry.

Going to Manchester for more chemo today. Will update later, but they better not delay or send up out of date drugs today. Am being collected by hospital transport, they said be ready from 7.30am, which means it will rpob be 9am before they turn up.

Thought we had a huge bang of thunder last night, but it was only Madeleine falling out of bed. Picked her up and poor thing was trying to cry whilst falling asleep, Couldnt see any bumps in the darkness, will soon see when she gets up..Her bed is huge compared to her, it buts up against the wall but no she has to sleep as close to the edge on the open side as she can. Its a wonder she doesnt fall out every night. We never fell out of bed when we were little. Duvets were new expensive things so we had sheets and blankets and mum made the beds so tightly you couldnt actually breathe. Those pink fleecy flanelette sheets were very snuggy.

Will update later with Harry's day.

A glimmer of sunshine ....

Well despite Harry's through the floor blood count last week, we had it re-checked to see if he was well enough to go to Birmingham for his Gen Anaesthetic and laser treatment and unbelievably it was back up to normal levels. Back to the level where I know he will be okay to have chemo number for on Tuesday.

Anyway down to birmingham we went and I took my little starving babba into theatre and cradled him as they put him to sleep. It doesnt get any easier seeing him surrounded by tubes and machines, he looks even tiner than he is. 40mins later and the consultant came to see us. Great fantastic news, his tumours have shrunk even more and his left retina is now re-attached. They did laser therapy on each eye and were pleased how Harry is doing. He still has millions of visits to Birmingham long after chemo has stopped but hey, the tumours are not resisting the chemo and no new ones seem to have grown.

Second bit of good news. Harry had a vision test before they put the nasty stinging eye drops in and he can deffo see. Not sure to what extent but he can deffo see. I knew this, he is looking and smiling at me without me needing to make a sound to let him know I was near. He is grabbing his toys and marvelling at his little hands, but having it in black and white makes it more brilliant.

Knowing how shit Harry will feel after Tuesday, I still cannot wait for Tuesday to come, It will be one less chemo for him to have, but more importantly it will continue to zap those horrid lumps of awfulness from his eyes. AM hoping he will have gained some more weight but not expecting they will take his feeding tube out yet.

Anyway, as I've mentioned life still goes on around us, and I have to wish my older sister a very happy birthday. She has reached 40, and said if felt no different to being 39 years, 51 weeks and 6 days old. She is so gonna have to change her blog name as yes Rachel, you have finally run out of your thirties. I still have a few years to go and am still taller.

2 steps back down the ladder

I mentioned Harry's Haemoglobin level was 7.8, this it was is making him look paler than normal and anaemic. Well the community nurse came to do a line flush and commented that he looked pale, so she rang Manchester and they said ' bob along to Lancaster and have a blood count test done'. So along I bobbed wi William and Madeleine in tow for our usual heel prick test and dutifully reported to the desk in childrens ward. We were shown to a side room and then they proceded to go through the q&a they usually do pre-admission. A little puzzled I answered the questions and awaited the doc to do the blood test. 4 effing hours later I had had enough of waiting for the results so proceded to go home. The staff all looked horrified and no you can't go till we get results in case he needs treatment. Excuse me but I had only come for the usual heel prick test. Reluctantly they said ok, we will ring you when the results are back.

I got back and we had barbecue for tea. Yummy yum yum. Got kids ready for bed, and as I'd had no phonecall I assumed all was okay. God Lisa, you should know by now that that is never the case.

The consultant in Lancaster rang at 8pm, they had the results and had reported them back to Manchester and his Hb level had actually fallen to 7.6, and that bloody neutrophil count (the one that delayed round 3) was only 0.1, but his platelets werent too bad at 81. Something to cheer about, not. Anyway the long and short was that he needs a blood transfusion. The lovely doc (and I will give her a hug when I see her) argued wi Manchester and got them to send his blood to Lancaster as 'she has other small children and can do without trekking back to Manchester'. We have to be in for 9-10am the next day and will be done by tea time.

I look at him, and he is so tiny and little. My friends on facebook (we have a page for our babies born in Jan and have made loads of friends) keep putting pics of their babies on and tales of them rolling and sitting up and they all look deliciously chubby and cuddly, just like my 3 older ones were. Harry seems like a newborn in comparison. This awful nasty condition is robbing him of his right to be a baby, and yet he still smiles and laughs despite of what he is going through. I havent cried in a long while but I think tears are justified now.

Well the inevitable happened and Harry is now '2 tubes Harry'. Having failed to gain weight and now a whole kilo lighter the docs decided enough is enough and of we went to Manchester for a feeding tube to be stuffed up his nose. He was soooooooooo good and only murmured a little when they put it in. I am wondering how before Harry pulls it out. He's already had a tug on it and had the end in his mouth. hmm, they did say they could train me to put it in, and I am imagining the community nurses will get narked coming every other day to replace it if he does.

They also checked his blood count, and the results came just as we were on the brink of going home. His HB levels are way too low at 7.8, it has to be a minimum 10 for chemo and 8 is the cut off where they give transfusions. The doc must have seen the look on my face (I don'tbeleiveitwearegoingtohavetostayffsffs look) and said maybe its because he's at day 10 after chemo and it may come back up of its own accord but if he gets paler (he's already an albino) and more tired and less willing to feed then ring and back in we go. Excuse me but he is deathly white very sleepy and not feeding hence the tube anyway so how could he possibly get worse.

So he officially looks like a sick child now, people will now peer in at him and know there is something wrong wheras before only those that knew about his condition knew.

I was greeted with 3 uber excited children. William had spent all day looking for me, and calling 'wheres mummy gon' in his uber cute little voice. Madeleine has been trodden on umpteen times as she trails behind me wherever I go. I think they are getting a little pissed off now. Its not their fault, bloody BRB, eff off back to where you came from and leave us alone.

Today was weigh-in day for Harry and Madeleine's pre-school jabs. I refrained from tellin her that until we were sitting in the waiting room at the surgery. She just looked a little wide eyed but took it in her stride. So in we walked, both health visitors armed with needles and 1-2-3 in they went, no warning or nothing. Madeleine cried a little but soon stopped as she emptied the sheet of bravery stickers onto her teeshirt. I then asked her to put her cardi on when she stopped, looked alarmed and said ' no, I don't want to move my arms' and so for the next hour or so she walked round like a robot with her elbows seemingly stapled to her ribcage. It was so funny, I am still chuckling at it now, and its 9pm. She then declared she couldnt possibly go to school with hurty arms.

Well, I then had Harry weighed. Praying he was still above 6kg as he had just scraped through in Manchester 7 days ago, I popped him on the scales. And no, I was to be disappointed. He was back to 5.8kg again under 13lb in old money. They dutifully rang the weight through to Manchester, so I now await their thoughts. The dreaded tube looking a little more likely. I desperately tried pouring that goo down him, only to be rewarded with a t-shirt covered back with it. As they say you can lead a horse to water but you can't make it drink. Grr come on Harry, havent I got enough to deal with.

Dan back on his first night shift since Harry's diagnosis. He wasnt looking forward to it, I must admit the thought of having the bed to myself fills me with absolute delight har har. Poor Dan. We had a laugh at William, Singing the theme music to Star Wars note perfect. He is deliciously funny.

I need to buy shares in Sudocrem. Those evil nasty chemo drugs have taken the skin off my poor wee man's bottom, no wonder he cries when he poos. I am going to ask if i can get it on prescription. Still not having that gunky milk either. MA and Pa in-law came yesterday and to Madeleine's relief they left Rhea the doggy at home. Was nice to see them and the kids had a whale of a time,

Back to school today for Matthew. I hve just realised he left is wtaerproof jacket at his friends house. grr I hope they realise and return it as Matthew will get wet. Madeleine back tomorrow, except she has her booster jabs at 9.30 so don't know if she will want to go afterwards. She has no idea yet, I will tell her once we're in the room and will be prepared with her favourite sweeties for the immediate aftermath. When Matthew had his, they did 1-2-3 into both arms and he didnt even murmur. No doubt Madeleine the drama queen will yell non-stop probably for the best part of the week lol.

Day 2 after round 3 and Harry has already puked up almost a full dose of his anti sickness drugs. Obviously not doing what it says on the tin there then. He is so completely unimpressed by the supplement feed we have to try and get into him. He hasnt really had a bottle before, and is probably unlikely to after this. I resorted to squeezing it into his mouth and all he did was choke and scream some more and spat up all I'd got into him. The dietician rang to ask how were getting on, and wasnt surprised really. She is going to get the Health Visitor to come and weigh him early next week and see what he is and then decide what to do. Feeding tube is sounding more likely so we can just pour the stuff in, that way I can still feed him and he hasnt the trauma of being forced to drink something he doesnt want to. I had to laugh at him though as he clamped his mouth shut so tight it looked like he was doing a squeezy lemon.

I went to the hairdressers yesterday to get my hair tidied up, and one radical cut later, my long lanky curls have been replaced by a collar brushing thick looking bob. Fantastic. Well until I try to dry it like she did lol. Got Madeleine's cut into a bob too. She looks uber cute and mischeivous now. Can't bear to cut Williams so I left him with Rachel. She made him walk 20miles to feed the ducks, and he had a 2 hour nap and still went to bed on time. He is still chattering about the duck ducks. Think she was a little disappointed when I went to collect him as he'd just settled down to have a snuggy with her. Aw next time.

Have just eaten a tube of the new Dairy Milk Chocos. Heaven, They are like Rolos but without the caramel. Now wish I'd bought 2 as I am wanting more. Wisely, I waited till the angels were in bed and Dan at work till I opened them. Yummy yum yum. They are definitely grown up chocolates.. I must mail a tube to Eryn in America as it will blow their weird chocolate out of the water. Thats if I don't eat them first lol.