Sunday, 29 May 2011

Well quelle surprise its bank holiday, half term and yes its raining. Matthew is climbing the walls as he's dying to try his new chalk darts but they are for outside use only. Am watching Tikabilla with William. He's so clever at reading numbers, he knows them all up to ten, so when the tikabilla clock comes on he gets really excited as he points at random and gets them all right. Who's a clever boy then. Just like his mummy. Tikabilla is a modern day version of Playschool, gosh that brings back memories of Floella Benjamin and those rastaplaits. Although my fave kiddy program (we only had a handful to choose from) was Chorlton and the Wheelies.

I am laughing that Utd Lost last night. Barcelona!!!! as Freddy Mercury used to sing. It puzzles me though, listening to the after match talks etc, why people say 'we were out played, we could have played better, we lost to a better team...'  whats with the 'we' its not as if they were on the pitch playing along. Get a life, its only a game. Its the taking part that counts not the winning. har har har  Its so annoying that a bunch of neanderthals who need no education get paid so much for playing games. Take Beckham for instance, as soon as he opens his mouth it shows straightaway what a thicko he is, still i suppose if it hadn't have been for football he would have been on benefits!!

2 days to round 3. Lets hope those bug fighting white blood cells have called in the troops and have amassed into a massive army, just waiting for those nasty chemo drugs to obliterate them all again.You can just imagine Harry's bone marrow saying wtf!! lets hope it doesnt go on strike and say what's the point. This has been known to happen, its got a scientific name .. neutropenic' and can last for weeks. Its as if the bone marrow needs a rest and also means chemo is put on a hold till its starts up again. I do not want any delay now whatsoever seeing as he is responding so well. I hope he hasnt lost anymore weight, just feels about the same to me. C'mon Harry you tough little cookie x

Friday, 27 May 2011

I did mean to post yesterday, but anyway Happy Birthday to my first baby. Matthew is now 7. He got up and remarked how much bigger he was this morning now that he is 7. He called me mum as 7 year olds don't say mummy anymore as they are too old for that now. LOL. He got all sorts of cool presents, star wars lego bed, clothes toys and games and a cool chalk dart set off Hanty Raychel. He was most disappointed that it was raining as I absolutely forbade him to chuck it in the house. He had a star wars cake, and Madeleine ran away when we lit it as she is scared of candles. Funny girl. She soon came back when a slice was offered. She was a little upset yesterday, no not because she had no presents to open, but she couldnt go to school. I opted for 4 mornings (and then one full day from sept) as I thought it may be a bit too much. But no, she wants to go. You watch, come the time she has to go to school for real she will cling and cry and not want to go.
On a down side Dan has to return to work, his doc said he could go back as long as they didnt put him on shifts when Harry's doc appts were. Grr, the kids will miss him, I will miss him and we will just wait and see if they keep their promises and you can bet your bottom dollar they will again say one thing to your face then do another thing. Its bad enough dealing with his own shit at home and now going and dealing with other peoples, only dial 999 for real emergencies cos you time wasting scroats and tossers who abuse the ambulance service will be given short change now.

Tuesday, 24 May 2011


Super, smashing, great, unbelievable, fantastic, brilliant, omg omg omg the good news just keeps pouring in.
We went down to Birmingham on Sunday, kissed my 3 older angels goodbye and left them with their granparents and into the taxi we went. 2 boring hours later and many head nodding moments we arrived in Birmingham. Harry slept all the way. He must have then had some foreboding as he grizzled all night. We snuck a KFC into the hotel room as a Fish Finger sandwich was £13, yes £13 and it was very yummy indeed. The pearly white towels had a greasy finger wiped look.
We went over to the hospital for 8am and Harry was in theatre by 8:45. I am used to the goings on, but danny was a nervous wreck cos despite being a paramedic cannot bear to be in a hospital when his loved ones are involved, and usually backs out, and then in steps my sister to take his place. But all the way down in Birmingham, and without the sanctity of the hotel he could either stand outside for the whole day or bite the bullet and come in. So the bullet was bitten and to be honest he was very good. Didnt come into the anaesthetic room but was there waiting outside to give me a hug.
45mins later we were met by the consultant on the ward. Harry was in recovery and ok. Cue held breath. I was dreading what he was going to say, I had cemented a thought in my mind that the chemo hadn't worked and the tumors were the same if not worse. But NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO. The tumors had responded unbelievably well. He had 3 on his right eye. 2 had been almost obliterated and he managed to do laser therapy to these. The larger one had gone down to a third of its size, but as it was over the macula area (this part gives you your sharp frontal vision) he wanted the chemo to shrink it more before he did some laser treatment. The left eye had a total retiunal detachment and one large tumour right in the middle of the eye. The tumour was drastically reduced, but even better was that his retina was almost back in place. It showed up some seedlings which could become active tumors but once the retina is completely back in place these will be lasered off to stop them ever growing.
What we didnt realise was that the tumors would leave behind a scar in the form of calcified bony deposits which will never go away. Some are little dots and some are bunched together, so Harry will never have brilliant vision, but they don't know what level he will have, I suppose that will come to light further down the treatment path. I know he can see more as he looks at his hands. We have to try and stimulate his eyes as much as possible now and will be contcted by a therapist to help.
I don't care, my precious baby boy is responding to his treatment and that is good news. I never thought I would want to put him through it, but can't wait for his next chemno session as I know its working.
Now a small downside, his white blood count still hasnt recovered, gone up a smidge to 0.4 so he can't have chemo today, we have to wait til next week. They expected this and are not concerned so a week of keeping bugs at bay and his temperature down. He has lost a little weight, he was 6.2kg 3 weeks ago in Manchester but now down to 5.8kg. He has slipped down to the second centile in his red book, hope it gets back up a little by next week as I don't want a feeding tube putting in. He should be like the others were at this age, chubbly and cuddly not skinny and bony (i'm just jealous as I'm still a little too chubby ha ha)

Saturday, 21 May 2011

Hallelujah, some good news at last. Yes the eye drops were of the stinging kind, and they did grumble when they were put in, but they all sat as still and quiet as a rabbit in headlights (their eyes were as wide too lol) whilst every millimetre of their eyes were checked. I must have held my breath for about 10mins in total but was finally told that my 3 older sweethearts show no signs of BRB. Whoopeedoo.
BUT, due to protocol and as it can strike up to the age of 5 or 6, they have to be re-checked. Okay, not so bad, he wants to see Matthew in 12m then he will be discharged. Madeleine in 3m time (she is going to be so impressed) and William in 2m so I still have the awful task of forcing them nasty eye drops on them.
Matthew had a sight test too, he got all the way to the bottom line with each eye, I must admit I had a smug little smile. William has long jumped over a mega long waiting list to get his slightly lazy eye looked at and treatment as appropriate. This means it should be sorted before he goes to school. So I suppose I have to thank BRB for something.
So we needed just one more result from Friday's epic trip to the hospital. Harry's blood count results. Despite looking the picture of health, his haemoglobin levels had just scraped through although his platelet count was good. This means we can go to Birmingham on Monday. However, his neutrophil level was 0.3, and the ideal lowest value should be 1, so he is at an increased risk of getting an infection, as this is the infection fighting white blood cell. We have to keep a close eye on his temp, and we have been given direct access onto Birmingham oncology ward on Sunday whilst we are in the hotel in case it goes up, then he will need antibiotics. Lets hope it recovers enough for Tuesday, whilst i hate pumping his little body full of those nasty toxic drugs, I want it over and done with so any delays are not acceptable. Come on Harry you tough little cookie, get them blood cells made quickety quick.
The children easily chose their reward, lunch at McDonalds. Cue some nutritionally deficient junk which must be full of kiddy nicotine as they are addicted (although I only let mine go as a treat very occasionally) and the nasty eye drops were immediately forgiven and forgotton. Matthew complained that his eyes were blurry until the minute we walked through the door, then they were miraculously better as he asked to play his Little Big Planet game.
Little Big Planet, a kiddy game which has me boggled. I do not understand it and I cannot follow it but Matthew (and now Madeleine) whizz though with their Sackboys making up and playing other kids made up planets. One level is like the Total Wipeout game. Some kid genius made that one up. Whilst I do not condone gaming, it has completely stopped his love of shooting games and is slowly turning our little big boy into a graphic designer.

Friday, 20 May 2011

well normally the week flies by, but this week has dragged and today has finally landed. I sit here at 5.30am a nervous wreck, nails bitten and that all too familiar feeling of dread in the pit of my stomach. Irrational I know, as everything will turn out okay but until I have it from the horses mouth I cannot help but worry.
Poor Matthew is scared, the other 2 have no idea of what is coming, why any mother should have to pin their children down whilst they force stinging eye drops into their eyes I don't know. Still Matthew has one reward already, he doesnt have to go back to school. Watch this space..

On a more comical note whilst driving home from school, and wondering why Madeleine has started to call us mum and dad instead of mummy and daddy???? Matthew asked why his hand looked blue. I explained he had a lot of veins and as he was hot they come to the surface of the skin to release some heat. He was impressed. He then asked are old people hot all the time then as their veins are always sticking out har har har then my laughter was abruptly cut short when he then told me I must be getting old as my veins are looking a little sticky uppy too. Charming.

Tuesday, 17 May 2011

The lying b******s. We got a letter from Birmingham confirming their diagnosis. It was a photocopy of one they'd sent to the guy in Lancaster who saw Harry initially and dated 13/4/.11. Excuse me, but as the parents of the patient in question what gives them the right to treat us as an after thought. We should have had the letter first.
Anyway, there was a lot of technical jargon,which made it sound even more awful, but they were words which described the tumours and their location on the eyes. Except his left eye which we were told there was one large tumour which had lifted some of his retina now has another small tumour on it and a total retina detachment. There will be words on Monday. Unless I didnt listen properly at our first meeting but I think i would have remembered a complete retina detachment. What does it matter I suppose, he still has bilateral retinablastoma and has eons of hospital visits and treatment to come. Lets hope friday doesnt drop more earth shattering devastating news on us

Saturday, 14 May 2011

Wow where did that week go. I must admit I am a little nervous as I get everything ready to take Matthew for his swimming lesson. William will go dressed in nothing lest he dare get too hot and have a fit. Am sure all will be ok.
A bit of a non-descript week really. Harry remains quite well, he must be a tough little cookie. The nurse came on Tuesday to flush his Hickman Line and declared he was the most eatable delicious baby she'd ever seen. Naturally seeing as he is one of mine!!
Madeleine goes to school every morning apart from Thursday, and whilst I do miss her, the peace is lovely. William enjoys feeling like an only child for a couple of hours.
Wednesday ... oh yeah as I walked back to the car to load my asda shopping in I noticed a nail in one of my back tyres. I am always getting nails, I am sure I must have magnetic tyres. So I tutted and chunnered and drove home. My front tyres were very, and yes illegally, worn on the inside rims so these needed replacing too. So in all I needed 4 tyres. OMG OMFG we are truly skint at the min and the cheapest tyre I could find was £62 each. Think think, so I rang Ken Allen, the scrap car dealer, and unbelievably he had just taken 4 almost new tyres off a Galaxy like ours and wanted £20 each. Result. So I went on Thurs morn and he fitted them too. Bargain. The socail worker came in the afternoon to fill in Harry's Disability Benefit applicaion. It took over an hour on line, god knows how long a paper version would have taken. She was brill, knew what to put in each box. I wouldnt have had a clue. Hopefully we'll hear in a couple of weeks and then use his money to cover diesel, food etc to all his many appointments. We have never been eligible for any help before, so I am going to claim every penny I can get, hospitals are an expensive hobby.
I suppose it wasn't so non-descript.
Am going to get ready for swimming, and will take my little brood afterwards to see grand parents and hanty raychel and return her little bag with freshly laundered rescue items from my adventure to RLI last weekend.
I am going to make up a little bag to always keep in the car, so should I ever have to stop in again for whichever child I will always be ready. I said that last week and I still havent done it but the thoughts there.
Next week starts a new adventure and I am already stressing over it, Matthew Madeleine and William go on Friday to have their eyes screened. Am understandably nervous, and whilst I am sure nothing will be found I am still playing over the what ifs in my mind. BRB has already claimed one child, it can bloody well leave the others alone

Tuesday, 10 May 2011

Hospitals aargh

well its day 7 after round 2 and Harry is doing fine but we still had to spend the weekend in hospital. Why? because William decided to have a fit thats why.
To go back a few days, on Wednesday Madeleine decided to start being sick, she had a miserable day but seemed to perk up on Thursday, no more sickness and by Friday morning she seemed her normal little self so back to school she went. I went off to Asda, my usual Friday morning jaunt, and although a little quiet William seemed his normal little self. Came home and put the shopping away, collected Madeleine then without any warning William was sick, just once and still seemed his normal little self afterwards. No temperature nothing. He coughed a little phlegm and gunk through the night, but was still not acting ill. So Saturday morning dawned, all children presenting well (apart from me who'd succumbed to being sick later on the friday evening) but off we went to Matthew's swimming lesson. William chatted away, drank his pop and was fine. Got Matthew changed and I said 'lets go see nanna and grandad' and William repeated what I said then the next thing he was fitting and jerking in his pram. Ambulance came and off to hospital we went. He didnt come round till we approached the hospital. No temperature although he looked cherry red. He spent the day sleeping on the ward, still looking like he should have a raging fever but no temp. They decided to keep us in.
Next morning he woke as normal and seemed his normal little self. I went to the loo and commented to the nurse that all was well, Got back in the room and he all of a sudden started acting like he was high on dope. He alarmed the nurse too. He then started staggering round then rolling about in his cot. They said it was still a fit although not the jerking kind he'd had the day before. 20mins later, back to normal and eating toast. They started asking had we any history of epilepsy or fitting. OH MY GOD.
But then the weirdest thing happened, my friend came in with her little boy doing the same thing and her older little girl is in Matthew's class at school. Her little girl had been off school with the sickness bug, and then her little boy spent a day being sick, then the day later had a fit. The hospital commented it was too much of a coincidence and spoke with the doctors. They decided they had both had a reaction after coming into contact with the rotavirus. William seemed fine for the rest of the day and night, although not eating or drinking much, so Monday they said he could come home, but to return if he started being sick or diarrhea or fits of any kind. They also raised a concern that William had a large head and want to re measure in a couple of months to make sure its not linked, So off we went, clutching poo sample bottle to drop back in once he'd performed.
But why had Matthew not even had a smidge of feeling a little sickly. He'd obviously carried the bug home and passed it on. Thanks Matthew. God I hate hospitals. Harry pretty much smiled, gurgled and slept through the whole episode. The one downside of breastfeeding, where I go, he goes lol. Still he's so used to the smell of hospitals it must have been nice to be in one without being the one being treated. Amen.

Friday, 6 May 2011

Well its day 3 after chemo, and despite being very grizzly Harry seems not too bad. Unfortunately it was Madeleine who came down with a bug on Wednesday, and spewed for England, all over my newly cleaned sofa cushions. She was deffo ill as she didnt move from the sofa and there wasn't even a glimmer of a mention of sweeties. 24hrs later and she's demanding them so she must be ok now.
Matthew came home from school with a wobbly front tooth. He's quite a clever little boy and often questions things, so part of me wasn't surprised when he announced that there is no such thing as the tooth fairy. I was just thinking how sad hat his little innocence was gone and then had to stop myself laughing out loud when he then said it must be Father Christmas who brings your coin. Har har har.

Wednesday, 4 May 2011

ding ding round 2

Well yesterday was Harry's second chemo session, and a very long day indeed.
Got up at 5.30am to make sure all was ready and the other 3 up and dressed ready for grandparents coming at 8am to look after them for the day.
We set off at 8.15am for his appt at 10 thinking we'd have loads of time but short of road rage and a lot of shouting at the road works and traffic we finally arrived at the hospital at 9:55am aaargh.
Dumped Harry into his pram and I ran into the hospital with an occasional pause to hoist my jeans back up which kept falling down. Chunnered under my breath at the uber long time the lift seemed to take, turned onto the day unit panicking I had missed my appointment to be met by a waiting room CRAMMED and I men CRAMMED with people. Take a seat the receptionist said, I would if there had been any left.
Here started a day of waiting and waiting nd waiting. I hate waiting.
At 11am, Harry had some blood taken from his foot to check his blood count, if it wasnt high enough then he couldnt have chemo and we would have to come back another day. NO WAY was this happening, so we had to wait (yes wait) until his results came bck then we went in to see his consultant. 10 minutes of cooing and mindless chit chat but WHAT WAS HIS BLOOD COUNT!!!!! and then finally, his blood count is okay and he can have his chemo. We also got the fantastic news that his lumbar puncture and bone marrow are completely clear so it hasnt spread. The nurse then guided us back to the, dare I say it, waiting room and said pop out for some lunch and drop his prescription in then come back. Erm why, cos we have to wait for his chemo drugs which will now be ordered to come up.
So i dutifully did that and returned to the ward at 12.30 to be told that Harry's drugs will be here by 1. Oh brilliant, seeing as it takes about 6hours to have all the necessary drugs and flushes in his line. So wait wait WAIT and bloody WAIT and finally at 2pm they hook him up. Its not the nurses fault, they were all lovely and of course were all falling at Harry's feet and fighting over whose turn it was to cuddle him.
So out of the window was any chance of us getting home to see the others before bed time and the phone calls home to check all was ok confirmed that my mum and dad were being kept very busy as I could hear my little ones in the background not being exactly quiet and still.
So the next 6 hours were spent sitting and waiting. I chatted to some of the other mums and recognised a few from our previous visit and one by one they all went home cos their chemo and stuff DIDN'T take 6 hours. We were the only ones left, even the cleaners came in and looked surprised that we were still there but finally hooray at 8pm, all chemo drugs in, line flushed and dressing changed we could come home. There was only one thing left between us and home and that was the Motorway. Thankfully Danny drove home and we rolled home at 9.30pm. Utterly tired out and incredibly grateful to my mum and dad for giving up their day.
Now follows days of force feeding anti sick drugs and changing nappies with gloves on, home visits to flush out his line and weeks of hoping Harry stays well for his next round. I am going to change my name to waiting.
I also got some really sad news (to finish off the day) that my friends daughter (who I'd been passing over outgrown baby clothes to) had like me noticed her baby had stopped moving with only a week to due date. But devastatingly for her when she was sent to the hospital for a trace they couldnt detect his heartbeat and then the scan confirmed that her soon to be born baby boy had died. OMG how awful for her. I cried and cried as i remembered the stress i went through whilst I waited for Harry's all clear and his birth and realised that this could have been my outcome. In spite of Harry's awful devasting illness at least he is alive. Oh poor poor Hayley. Sending you big hugs and I know nothing will make it all right for you x

Sunday, 1 May 2011

Its been a lovely sunny day again. danny's mum and dad and sister came through.We all sat outside and munched on the yummy pies they brought. Madeleine stayed inside as she doesnt like Rhea, Dan's dad's guidedog. The dog is so obedient and does its job really well, but living in Manchester and not wanting to be easy prey to scummy yobs, Eddy (dan's dad) has a German Shepherd guide dog so no one will bother him. It stands taller than Madeleine so not surprised she is a little nervous. Eddy's blindness has nothing whatsoever to do with Harry's RB (retinablastoma).
Well it was a little on the breezy side and one sudden gust lifted the patio parasol clean out of its stand in the middle of the table and into the air. Was just like Mary Poppins lifting off. We all watched it go up then followed its progress through the air to where it came to rest - on top of Matthew. I so wish we'd filmed it... would have got £250 from You Been Framed. I could hardly lift it off him for laughing. He was not amused and stomped inside.
One more happy day til round 2 of awfulness starts ...