Friday, 31 May 2013

a taste of summer

The sun shone and the feeling of summer was deffo felt in the Riley household. Out came the bbq and it was delicious. The kids played out and it was wonderful hearing them laugh and have fun together. Unfortunately I can't post a video but Harry instantly disliked the trampoline. "don't ike it mommeee" uttered constantly until he was off it.

Cannot believe daddy "do you know how many accidents I've been to involving trampolines" stood and watched the others bounce about and laugh hysterically. I love hearing my children laugh. Hope the weather lasts into the weekend.

On a sober note, 7 days til we find out if Harry is still in remission or if the strange patch on his left Eye has manifested into something nasty. I am feeling anxious....

Saturday, 25 May 2013

This time 9 years ago....

I was a mum of none, or technically a mum to be. I wasn't supposed to be in Labour as I still had 6 weeks to go til my due date but in labour I was.

Rewind a couple of days and I had just been to my first parentcraft lesson, labour wasn't really discussed but that didn't matter I still had weeks to go. The next day was my last day at work, I had saved all my annual leave so I was looking forward to catching up with loads of ppl before the baby came. The Sunday aft I went to the pub with Dan and it was really warm ( yes I know may at the mo is decidedly chilly) but I thought euwww I am really sweaty down below. Woke up Monday morn to Dan stating you have wet the bed!

Oh fan bloody tastic, my waters I thought so I rang the hosp and was told to bob down and get checked out. So down I bobbed, they scanned me and said o had plenty of water and go home but ring back next day if I still thought water was leaking. Next day (9yrs ago today) I rang back and said yup, still leaking. Bob down again they said, so down I drove, round the car park a zillion times for a parking space, 3hrs ticket cos I will prob be going home again and in I went.

The midwife was astounded I had driven and was told I wouldn't be going home cos a)my waters were deffo leaking b) my blood pressure was sky high and a c-sec the next day was probably likely cos baby was 6weeks early.

Cue some dragging of other half from ambulance duties to remove my car within the next hour so not to get a ticket, then go home to get my bag (cos I seriously thought I would be sent home again) and the wait.

Well only having the one parentcraft lesson I was a little naive in what the onset of labour would be like. Baby was back to back so the severe back ache that kept coming and going was because of that so I didn't mention to midwife or ask for pain relief, when it started to really hurt round the front I tried to breathe and sleep through cos I knew I would have the baby the next day anyway.

Anyway I gave in and asked the midwife for some paracetamol, ha ha so she politely asked why hadn't I mentioned I was in pain and thought it best to check me over first.

"oh my god you are 7cm dilated and you are only now asking for pain relief" !!!!!

Think she was a little shocked, well I didn't know I was in labour.

To cut the next part short, the time til delivery took ages as baby was back to back and not budging despite mammoth pushing on my part, I was tiring rapidly and 7am the next morning the consultant decided to extract one stubborn baby rapidly, no time for theatre I was for a while an extra in a slasher movie yuk, forceps went in (Danny nearly passed out) baby was turned using said forceps and then yanked out. Our beautiful tiny baby boy Matthew was born. I couldn't sit down for weeks, needed physio cos of the delivery and spent 2 wks in hospital with Matthew in special care but he was here safe.

What was funny, on my first outing into town so I could proudly push my lovely new pram I bumped into a fellow Mum from the parentcraft group who was still pregnant. She was a little jealous as she still had a week to go, I should have had 3.

Having Matthew put me into an exclusive group of special people called mummies. It changed my life and I love every minute of it. Having him so early and in such a horrific way in the end only made me realise how strong I am. I delivered him with no pain relief, had more stitches than a c-sec and had to watch him whilst in special care without being able to hold him. I would have beaten Mike Tyson any day to protect him and I loved being a mummy so much I went on and had 3 more angels.

Little did I know 9 years ago I would have to draw on that strength in the years to come to help one of those angels fight the fight of his life. 9 years ago as I gazed at Matthew something inside clicked into place and I knew that come what may I would do anything for my children.  Nothing else in life would matter.
But sadly despite having the strength of an ox and wanting to do anything for my children I cannot take away Harry's plight but I will jolly well help him all I can, I will help all of them. It is my job as a mummy to make sure my children grow and achieve their maximum potential for as long as they need me. And as I still need my mum I don't think my job will stop any time soon.

So this time 9 years ago I was on the brink of accepting my new job, one that has the biggest reward package one that I wouldn't change for the world so I thank you Matthew for starting me on my new career path, and I wish you the happiest birthday you could ever have x

Sunday, 19 May 2013

Just when you thought it was safe to......

Unfortunately I am not talking about a Jaws movie, if only it was just a matter of getting back in the water.

I am talking about Harry's roller coaster ride. Just when you thought it was safe to think Rb had done one. We have had quite a smooth ride for the past few months, there have been no dips or loop-the-loops and I suppose a touch of complacency slipped in. I was so used to hearing the words, all clear see you in 8 weeks. But this time we weren't to hear those words. Instead they have found a patch on his left eye that looks different to last time. It could be the way his eye looks, but why the change? Or it could be something evil and nasty brewing so we will see you in 4 weeks to check.

So the what-if game starts big style. And at the moment I am struggling a little, my heart and mind are in a tug of war, the sensible one is saying it will be nothing but my emotional one is saying it's something new. Why would his eye change? Something must be causing it. I know of a few children who had months and months of stability before it all started again and I pray Harry doesn't follow suit.

I have to spare a moment to ask you to think of Harry's little Rb warrior mate Owen bishop who after 2yrs ish of being stable, this week they found a new seed. Small and treatable but something new all the same. Well Rb you got your last look there cos Owen is too much of a tough little cookie!

But Harry's EUA wasn't the nicest, he played holy hell when we pinned him down to have his eye drops in. The poor student nurse who got the feet end must have been black and blue. I should have removed his shoes, sorry x as we were on the general day surgery ward the ppl in the next bed weren't Rb ppl and they looked a tad alarmed as 3 staff surrounded Harry just to put 4 lots of drops in. He really cried afterwards. Then the fun of putting him under the anaesthetic.
I carried, no wrestled Harry into theatre and along with a few members of the theatre staff held him in a vice like grip whilst they forced the mask over his face. I don't really mind him crying as it helps him breathe in the gas quicker, but the little heart breaker had us all in tears this time as after a few sobs, he took his dummy out pushed the mask away and said clear as a bell "I'm crying" before resuming struggle and sobs.

I can't imagine it will get any easier and now we don't have the luxury of an 8 week break to try and forget the trauma he goes through.

It was fantastic to meet up with macey and alfie, similar in age to Harry both diagnosed with bilateral RB. Macey did fantastic and got another all clear with existing tumours still in remission and her reward for this fantastic achievement, an 8 week break! Fantastic! Alfie however has been struggling to get his right Eye to behave and sadly his mum Rebecca had to make the heart wrenching decision to remove his naughty eye. I cannot imagine how she must be feeling. It is my nightmare and something I fear to the pit of my stomach that I should never have to do it but my love and hope goes to alfie and his family as the outcome is for the better good and the cancer won't be able to do any more harm from that eye any more. His left Eye is still stable and that's fantastic. Big hugs alfie.

So to round up our bad day, it got worse as we passed one junction on the motorway that could get us home and joined an hour's tailback from an accident that had only just happened. Fan bloody tactic!

Something good about May, Matthew turns nine next week. Omg how did that happen? It only seems like 2 mins since that tiny little monkey decided to make a very early appearance. He allowed me the luxury of one days maternity leave. He's been impatient ever since!

Wednesday, 8 May 2013

one helluva update

Je suis tres desolee mais j'oublie de ecrire mon blog pour beaucoup de temps.

In other words, am very sorry again. It has been too long since I wrote a blog entry. Not cause I didnt want to, but for some reason time seems to have slipped away so fast we're in May already.
Anyway I promise todays will be lengthy.

I shall start with Harry. Much has happened since I last wrote. To set the ball rolling here's my little Harry blue eyes. Yes showing a RB trait but still so sparkly blue.

I posted the following on Facebook. It sums up a milestone for Harry nicely...

Omg I never shared this!!!!!!!!! Harry went to Preschool this morning with William. He gets 2yo funding cos of his special needs. His visual impairment teacher wad there as his 1to1 and he loved it. I was so worried about him being safe, but I have to learn to let go and let him find his feet in his own way. It's just hard accepting he may hurt himself but when I am with him I'm responsible for him and not having that control isn't easy to accept. BUT I am over the moon he had a whale of a time and he's chattered non stop about having a nice time at school and playing in the water. I wanted him to go whilst William is still there so he can hear a familiar voice whilst he settles in. They've had to change the whole room layout to accommodate him and they've had training in looking after him which is fantastic. All the other kids smothered him trying to look after him as they've been told he can't see much and they need to look out for him. My superstar Harry is on his first wee road to finding his independence, way to go little man. I am so proud of you xx

Actually its a major milestone for me too. The little girls adored him. Isobel asks daily if Harry is coming today. The school were keen to say he has 15hours paid for and I can add additional sessions. But I think my nerves will only allow the one at the minute. But I have to reiterate how wonderful it was to see him so happy. It would have been horrendous if he cried when I left him. I enjoyed a lovely hot coffee and did my housework in record time before I went to pick him up. It was sort of quite nice not to have to monitor him constantly but I didnt half miss him.

He's really come on leaps and bounds with his development. He seems to be catching up, but sadly not in growth. He went to the hospital for some investigations into why his growth curve resembles something more like a downhill ski run. They put on some magic cream to numb areas to take blood. He was none too impressed and cried.

We then went to x-ray. He went mental as we pinned him down whilst they took x-rays of his wrists and hands. His face was purple, covered in tears and gooey runny nose stuff and he screamed til your ears hurt. The poor radiographer apologised constantly, poor girl I bet she was glad when it was finished. Harry changed instantly back into the litte lady charmer he is at that point. He fluttered his soggy long eyelashes and cooed 'bye bye lady' in his uber cutee little voice. She melted when he asked for nice kiss, and offered his puckered mouth.

That soon changed when we went back for bloods. Screaming Harry again. I am so not looking forward to Birmingham next week. His reaction to all things medical gets worse. I don't suppose I can blame him.

These tests will see if Harry's growth system is working ok, if he has any disease or something that affects growth and I'm quite positive all will be ok, but I can't help feeling that his chemo has meddled with him. Cancer has already robbed most of his sight, if its robbed him of growth too then it better stay away from me!!

It will probably be donkeys years before we get the results. He is back in Birmingham for his EUA next week. It will be 9 and a 1/2 weeks since his last. Something I am nervously terrified about. They postponed his appointment by 10 days so they could accommodate 2 new babies diagnosed and on chemo. Good in one respect as they trust his eyes will have behaved so they could move his appointment, but bad for my nerves. I am already playing the what-if game. What-if there is something new and its beyond the remit of the laser, and 10days could have made a difference? Irrational I know.

I am friends with a load of Rb Moms on facebook, and they are amazing people with a wealth of knowledge having 'been there done that' but what is worrying is the number of their children who relapsed after months of clear visits. I cannot yet get my laurels out and will make do with resting on my holly leaves. A sharp nudge every now and then to remind me that Harry still has a long way to go before we can breathe that huge sigh of relief and rest into the aforementioned laurels and smile away that Harry has well and truly kicked cancers ass.

For now, he's still kicking and I will make do with that.

Away from Harry, we received confirmation that William will join his siblings at Quernmore school. He is very excited and asks every day if he can go. I hope he is still excited in September.

Matthew turns nine in a few weeks, I so cannot believe where that time has gone. He has asked for a real football and wants to got for a pizza with a few mates. Parties are not for him - he's far too grown up. Oh okay, I sorted the grown-up invites/sorry messages for his mates. He really is growing up - until he remarked 'don't forget I want a chocolate birthday cake and party bags' Not so grown up really.

He is really tall, his feet are a size smaller than mine. I've just had to kit him out with new shoes/wellies and clothes.
Madeleine wasn't wanting to be left out so she too grew loads and ended up with some new shoes, wellies and clothes. Ask Rachel, I am not sure where my children (apart from Harry) get their tall genes from. I do know its costing me an absolute fortune. Plus growing children equals larger appetites and my fridge is emptying more rapidly. Our local Asda would go out of business if it wasnt for me!!!

Oh well, I will wind up now. I have so many blogs to catch up on and a house that needs cleaning and oodles of clothes that need name tags stitching in. I may not bother with that, whats the point? They'll only grow out of them in no time at all!