Saturday, 31 December 2011

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.

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

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

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

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.

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.

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.

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

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

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

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 ..

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

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

Thursday, 29 December 2011

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

Tuesday, 20 December 2011

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.

Friday, 16 December 2011

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.

Sunday, 11 December 2011

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 ...

Tuesday, 6 December 2011

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

Sunday, 4 December 2011

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.

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

Friday, 2 December 2011

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.