way to go Harry

Harry has taken his first steps. He called 'mmmmmeeeeeyyy' and then walked 5 steps to me. He was so happy, his grin was massive. He triumphantly shouted Yay.
I am so proud. Despite everything my little hero has been through and is still going through he has overcome massive hurdles to reach his development milestones. Ok, he's way behind his peers but by sheer grit and determination he's got there. Well, we've still a long way to go but for now I am amazingly happy.
Harry happy superstar can now freestand and then turn and set off walking when I say 'walk to mummy'. He's becoming braver day by day and letting go more often and 'just' standing there. His siblings are amazed and shout 'look at Harry' as soon as he does it.
So way to go Harry!

trip down memory lane

This was the wonderful place where I spent 7 glorious years, studying, making lifelong friends and having my inner self carved out to set me on my journey into adulthood.
This place was (and still is) Lancaster Girls' Grammar School. The first choice school of any parent (along with the Boys Grammar)and I was lucky enough to pass my 11+ exam with high enough marks to have my place confirmed with approval from my primary headmaster.

I also had a set of footsteps to follow in, older sister Rachel was already making her mark there. My older cousin was there and my fathers sisters had all gone there.
Now LGGS today is massively different from the LGGS I first walked into. Then...
All the teachers wore black gowns, the uniform was absolutely sensible and completely adhered to and the list of do's and don'ts given to your parents was a mile long.
Starting from head to foot,
If your fringe touched your eyebrows it needed clipping back and if your hair touched your collar it had to be tied back. Absolutely no make-up or jewellery (including earrings) was permitted, even at sixth form level.
You had to have a white shirt and sensibly knotted school tie, covered by a navy blue v neck jumper all under the navy blue (and LGGS approved style) blazer.
You then HAD to wear the LGGS style 6 panel navy blue skirt that had to touch the middle of your knee, so that upon kneeling it touched the floor. If it didnt reach the floor it was shockingly too short, gathered on the floor it was too long.
You could then wear navy tights or socks, or white socks (and THAT WAS IT) and your shoes had to be black, completely sensible with no heel or any fashiony bits stuck on.
Your outer coat had to be ONE inch longer than your skirt and only navy blue. You had to wear the school scarf when wearing your outer coat as your blazer badge would not be visible hence any stalking teacher en route to bus stops could tell a grammar school girl from any other.

Ooh how I longed to go to Riply High School where you could choose the colour of your skirt and shirt!

And we learned respect from day one. Whenever a teacher or a sixth former walked into your classroom, you were out of your seat until told to sit back down. Our desks were in single file rows, and you sat in alphabetical order within your form. I was in 'L' form as my surname started with S. There were 3 house groups, J K and L and your surname initial's position in the alphabet determined which house you were in.
You held the door for anyone entering and you stepped into the sides of the corridor should a teacher or sixth former walk by.

Now this was drummed into me so much, that even when I started working for the bank, an ex deputy headmistress (who everyone was both afraid of and in awe of) came along to do her banking I would leap out of her way and hold the doors open. Now she probably had no idea who I was, but I certainly still revered her. Good old Mrs Rigby.

Now this may sound strict, but as we all looked the same and wore the same and were theoretically as clever as each other we all became friends with each other. We were destined to be models of society. All educated to a level capable of securing a place at university. We were regarded as snobs but it didnt matter, we were proud of being part of LGGS.
I was proud to wear that uniform, proud to be paraded on our speech day in front of parents and businesses alike, proud to be a Lancaster Girls' grammar girl. I can still sing our school song and the main hymns that made up our assemblies and can recite several tenses of verbs in latin (that was compulsory for at least a year if you were in the top third of the year)and OK I may not have ended up the straight A student I was capable of being and I didn't go to university as I chose a career in Banking (job probably mine because of having LGGS on my CV) and I wouldn't really say I was a model of society but how I've lived my life is definitely down to the principles I gained from LGGS. I can safely say I can make a papier mache hand puppet, & draw an outline of Lancaster city rooftops (all thanks to Miss Bell) make pineapple upsidedown cake and mixed grill and stuffed trout courtesy of Miss Counsell, and chat to an elderly stranger courtesy of the voluntary but compulsory community service lol

I won't add a recording of me singing the school song as that would be quite terrible but here are the words. No other school in Lancaster has their own song (the boys Grammar didn't either)but I think they have a lovely meaning.

In our small world upon the hill
We live, we live together.
And half forget, that good or ill,
A wider world awaits us still,
And draws us thither.
Yet though in quiet we sojourn,
To know our guiding light we learn,
Our guiding light we learn.

And this alone shall be our light,
The lamp of beauty, truth and right.

Friendship our pathway has prepared
With joy, with joy and laughter.
The binding ties of secrets shared,
Of common tasks, delights compared.
For ever after
Will draw us close when we discern
The light that here we first saw burn,
That here we first saw burn.

And this alone shall be our light,
The lamp of beauty, truth and right.

Then if we part or if we meet,
Yet keep, yet keep we ever,
This thought of strength with which to greet,
Coming of victory, or defeat.
That time shall never
Dim our fair memories, or turn
To darkness light we made to burn,
The light we made to burn.

It shines in darkness, and in light,
The lamp of beauty, truth and right

Ok, now for some reality. Having an older sister at school had its good points and bad points. I was the only first year that work ankle socks year round as I was absolutely not allowed to wear knee socks and be on the same bus as her. I had to walk about 5 feet behind her on the long walk from the bus station up to school. I had to pay everone's fare onto the bus, and asking for 15 returns and handing over 15 lots of 11p's was no fun. I was absolutely not allowed anywhere near her at school as she was a grown up 4th year and I was a lowly 1st year, tho her friends snatched me into their classroom at any opportunity. Now the good points, all my first year friends were in awe that I was allowed into a 4th year classroom (and sixth form as my older cousin was a sixth former then)and i got the low down on some of the teachers an their habits. None of the teachers believed I had an older sister as we looked nothing alike. I think though that the fact we both went to LGGS built our friendship as sisters too. She is absolutely my best friend and my natural choice for childbirth, hospital visits and my brick wall for helping me through Harry's predicament.

I know LGGS is unrecognisable now, the uniform is relaxed, the sixth formers can wear JEANS, YES JEANS, and the school itself has undergone a major facelift and rebuild and none of the teachers are still there but the essence of LGGS remains. Talking now to any pupil you still get the same feeling of pride coming through and I hope it is still there in 6 years time as I would dearly love Madeleine to go.

He's found his feet!!!!!!!!!!!

Harry got to his feet, all by himself, in the middle of the floor and stood for 2 mins before realising and going 'yay' and promptly falling down. He's been cruising round the furniture for a couple of weeks but he's always used a wall, chair etc to stand himself up.
This is amazing, his look of triumph was amazing. I am a very proud mama.

I don't get the 'gosh is he not walking yet' spiel from strangers cause he still looks like a baby, not the size of an average 20mth old. But I don't care what anyone says anyway, because a)its none of their godammed business, b)babies cannot grow, fight cancer and tolerate toxic chemo at the same time, c)babies do not follow instruction manuals, they do it in their own sweet time and d)its none of their godammed business.

Madeleine seems to have settled well into school. She's found some friends and isn't constantly bugging Matthew. Don't think she's the chatterbox of the class. William loves going to pre-school every day. Its really quiet at home now. Even Harry has resorted to shouting just to make it sound more normal lol.

ON the way to school the other day, I explained to Matthew that Madeleine will be starting to stay for lunch from this next week. She's having the same packed lunch/school dinner pattern as Matthew so I asked if he'd keep a watchful eye. I said she's chosen pizza on the day he has fish. He then started off on a great debate on how its absolutely not fair they don't get a choice of pizza toppings. 'Why is it always cheese and tomato?' he asked. Well its so vegetarians can eat it too, probably I said.
'Whats a vegetarian again' he askes. Its someone who chooses not to eat meat for whatever reason I told him. 'What. no barbecue sausages, burgers or sunday tea???' I think I can safely say Matthew will always be a meat eater. Now not to offend vegetarians I apologise for this part of the conversation.
'Meat comes from animals right??' Yes Matthew. Beef comes from cows, pork and bacon and ham from pigs and lamb, well that says it for itself.
'Oh and I love lamb but I don't think I'll eat it anymore' (gulp where's this going) whys that I asked. 'Well cows and pigs are ugly so its okay to eat them but lambs are all bouncy and cute, so its a shame to eat them' But they grow into sheep Matthew.
'Oh yes, well thats all right then, cause sheep are ugly too'

So you're happy not being a vegetarian I asked. 'Absolutely' said Matthew 'and besides they eat with their fingers'!!!!!!!!!!!!!!!!!!!!!!!! Har har har

DISCLAIMER: I absolutely know that vegetarians do not eat with their fingers and are quite happy using cutlery, I was merely laughing at a childs view on the world.

Oh and Chloe seems to be having the time of her life at Univ, her moms probably gained a few more grey hairs lol

Har Har RB, did you enjoy your kickin??

I knew Harry's trip to Birmingham was going to be fine. Why??
Well to start with the taxi was on time and the M6 was free flowing and stoppage free.
We booked into the hotel and were given a lovely large 'clean' room. A bit much for just me and Harry really.
Getting to the ward on Friday morning, I knew all the families from previous visits, so we could all sit and chat. The baby diagnosed the same day as Harry, is a full 2 months younger, and towers over Harry and is walking. Not needing the chemo obviously hasnt held him back.
Harry went down Number 4, but the first 3 were in and out in no time at all, no treatment needed.
So in went Harry, I was hoping he wouldnt spoil the clear run, but he wasnt going to disappoint. He too was clear. Fandabedozy. Thats now 2 visits on the trot.
In fact the next 2 children were clear too. His consultant was over the moon. This has rarely happened, his poor laser and cryotherapy equipment must have felt a bit sad and unloved lol.

So RB, not only did Harry give you a kickin this time, but so did the other kids too. You may think you're strong but our kids are stronger this time.

Ok so we're back in 4-5 weeks again, but hey bring it on.

Chloe - saint and superstar

This blog entry is dedicated to my wonderful and beautiful niece Chloe. I've mentioned her in earlier posts, she's been an actual darling in helping look after my angels since Harry's diagnosis.

Anyway lets whizz back 18 and a bit years and on the 17th June beautiful baby Chloe arrived. She was perfect, and the model baby. Well a model too, she won a bonny baby competition. Rachel still lived at mums when she was born, and my greatest delight was stealing her into my bed for cuddles. She laughed and smiled constantly.

She was soooo funny too (no guesses where she gets this trait from lol)she squeaked away in her high pitched voice, bossed Tallam (callum) round and fussed over him like a mother hen. I still giggle at this story, and Rachel will KNOW exactly what story I'm going to share.

At probably around 4yrs old, she and mummy went to the local spar shop for some groceries. Upon approaching the counter Chloe, wide eyed, dared utter 'Look at that Hugly woman'
(Sniggering, its actually true, she was very ugly, chicken pox had obviously not been kind)
Now probably extremely red faced, Rachel was just wanting to pay and leg it, but Chloe kept on saying it.

It doesnt end there. Some time later, when in the same shop Chloe decided to avoid looking at said hugly womnan by pulling her cardigan over her face, snigger

Chloe blossomed into a lovely girl, She was a delight to look after and when Matthew was born, she adored him. Smothered him really, but she jumped at every opportunity to cuddle him, he was none too impressed one night tho, aged 18m when Chloe gave him his nighttime milk, then tried to hold his chin in her hand whilst she burped him. Her reward, was an adoring little boy that trotted after her and called her lowee. She jumped at any opportunity to help look after him and subsequently the others.

This has been a lifesaver on some of my Birmingham trips, as she's stayed with my mum and helped play and sort them out when Danny couldnt get time off and so my dad didnt have to lose any hols. They loved it, feeding the ducks, going to the park and not for one minute did I ever worry when they were with her. I trust her, full stop. She has had an amazing upbringing. Rachel has taught her every life lesson you could need and the result is a Chloe who can cook, sew, clean and be able to look after herself.

Thats why I know she will be ok, cos on Saturday Rachel and Darren will drive her to her new life. Life at university in Newcastle. And whilst she will be missed, she thoroughly deserves her place. She worked tirelessly and studied all hours to get the amazing grades she got. And she will be able to look after herself, living off the paltry amount she will have left after her exorbitant accommodation costs have been deducted.

I wish Chloe love and luck as she moves into her new chapter of life. I will miss her dearly, Rachel will miss her like crazy, the neighbours won't miss 'will you tidy your room', but I've heard Newcastle is amazing for shopping, so a trip to see her nearer Christmas is deffo on the cards, if only to take a hamper of pasta and cupboard essentials to keep her going. Lancaster's loss is Newcastle's gain.

One of my favourite memories, we went to Morecambe and whilst waiting for Rachel's 10min (more like an hour) hair appt to be over we walked onto the front and she tirelessly trotted after escape artist William and then we looked at the Eric Morecambe statue. My kids havent giggled so much in ages as they tried to adopt the same pose, I think Chloe won....

First days at school.

Wednesday morning dawned and all three angels were dressed and off to school we went.
Madeleine trotted into the playground quite happily and no sign of tears. There were plenty of tears on some of the new starter parents faces. Danny and I didn't shed one!!

Just to share a few pics with you, the dress was worn on her second day.

She seemed quite happy each day when I picked her up, and she chose a new book for us to share. I sniggered a little when she seemed indignant she couldnt read the words now she goes to big school. Err I think you need a few more visits chucky lol

William has settled into pre-school, I wondered if he would fret as he used to go on a Friday when Madeleine was there, but he gave his usual bye mummy whilst walking into the room, so alls well there.

It does seem really quiet now, Harry has been crawling round the room shouting. Probably shouting for them, he must wonder where they've gone. Its a busy week for him next week. He's seeing the paediatrician in our local hospital on Monday, she is sorting the CAF and statementing he will need, she also wants to check he is growing and developing. I hope she'll be pleased with his progress since his last visit.

His physio and occupational therapist is coming on Wednesday to do an assessment. He's not really progressed that much since their last visit, maybe cruising along a little more. He's 20mths old now, he should be walking independently. He still looks like a baby, not the toddler he should be looking like.

Then Thursday, its back down to Birmingham for his EUA on Fri morning. Lynn his VI teacher wanted to come next week, but there wasnt much space on his calendar lol.
Marlene superstar from Rainbow Trust is taking Madeleine and William out on Wednesday to give Harry some quiet time with the physio and occ therapist. She's also doing some of the school runs thurs/Fri so that my dad doesnt need to take time off work whilst I am in Birmingham. Yet again Danny couldnt get time off and Rachelradiostar is back at work, so its off I go alone again. Looking forward to hearing 'No new growths'.

Heigh ho, its off to school we go

This week marks a massive change in the Riley household. Madeleine will join older brother Matthew at 'big' school and despite only being 3 for three weeks William will start pre-school. The house will be eerily quiet, I will miss their chatter and banter. Harry will for a time feel like an only child til home time.
One good thing for harry will be the quietness he needs when working with Lynn his visual impairment teacher, and the physio and occ therapist. I am almost 100% certain he has no vision at all in his left eye, thats why its so devastating to find his slightly better right eye started to misbehave 2 visits ago.
I was sure it was just a blip, but yet again as parents we're last to get any correspondence regarding harry and the follow up letter from that appt turned up this week and they stated he has low grade activity and they need to keep a close eye on him. A bit sickening as this means more are likely to grow, I rang to query if this would be the case, and as the growth was following a period of 6m stability they said although it would be great if nothing else grew, they wouldnt rule it out, but probably .
So still uncertain but who knows what agenda cancer works to. I've read stories from fellow rb families whose kiddies had quite long periods of stability before it kicked off again. I hate uncertainty, if its going to happen I'd like to know. Living in the land of 'what-ifs' is torture.
But like everyone else living with cancer we just have to get on with it and force it to become part of your daily life. Despite wishing daily I could swap places with harry, I know that I make him happy, hearing him call mummy and the huge smile I am rewarded with when I pick him up brings a glow to my heart. It still doesnt get rid of the pain knowing Birmingham looms next week and I again have to put him through the nightmare EUA.
Lets hope cancer has seen my angry face and decided to stay hidden again!

I must spare a moment to think about a special little girl called Beth who has just been diagnosed with ALL, acute lymphoblastic leukemia. I have become friends with her mum on twitter, she too writes a brilliant blog. I know she will be well looked after as she is on became ward harry was on in Manchester childrens hospital. I hope her journey to remission and beyond is straightforward and as painless as possible. Massive hugs to beth and her family @-}--

I shall end on a classic Matthew saying. With my hands full feeding harry his lunch, I asked Matthew to pick up a few crisp crumbs William had dropped before they got trampled into the carpet. Fully expecting him to say 'i have to do everythinggggggg' I was surprised when he retorted 'what do you think I am, your personal Hoover' har har.