Sunday, 29 January 2012

12 more sleeps ...

Less than 2 weeks til we go to Birmingham, still not unpacked from the last trip, actually I keep the bag pretty much ready all the time. Habit from his time on chemo, when a temp meant we had to go to hospital at the drop of a hat.
Am frantically trying to keep him cold and bug free, not easy when William is coughing and spluttering everywhere and has a never ending green stream running from his nose... sorry if tmi.
I dont think it would stop him having his anaesthetic, they wouldnt let his birthday and christenbing stop him, time is too precious and a smidge would mean the tumors could grow beyond the limit of the laser.
A few people have commented saying 'hope his left eye is ok like his right is now' At his last visit, his right eye had nothing new but that doesnt mean that will be the case this time. Am hoping it will be, but am going expecting lots of growth so anything less will be a bonus.

He seems to have grown a little, he's filling his 6-9mths clothes a bit more and he's cut one of his top front teeth. Better keep the fingers away now. He's sitting for longer now too, still not mastered crawling, but theres all the time in the world for this.

Danny took my car to work this morning, so as it left me stranded I decided to do my ironing, well the kids ironing. My tumble drier is doing my head in. The dial broke off some time ago but you could turn the metal spindle with some pliers, this is now being temperamental and it often only turns a little so the drier goes off regularly. Grr, its even more grr as its in the garage. Roll on spring where I can line dry again, 4 kids equals too much laundry for my airer and radiators.

One bit of good news, Rachel has rigged her staggered return to work hours so she can come to Birmingham again, makes the trip so much more fun and now we've discovered the BullRing stays open til late we dont need to leg it in, find somewhere a zillion times cheaper than the hotel to eat before 5pm. I wonder what I'll forget this time

Wednesday, 25 January 2012

Just William

Todays post is about my sweet William. He's so funny. Yesterday, I popped him in the high chair whilst I was making tea and he and Madeleine were colouring. I was uhming and ahing to his little banter not really paying too much attention (yes you can shoot me) till 3 words suddenly shouted out in my head 'what a mess'.
Now this snapped me back with a jolt and I turned round and saw ..

Not only had he painted his face, his hands were both completely covered. I hope to god thats crayola washable markers I thought. 'What have you done?' I asked. He replied 'Madeleine did it'. She looked horrified. No William (and pardon the pun) I've caught you red handed. It was actually quite funny and thankfully Madeleine had given him a crayola washable marker as it washes off, well it took a little scrubbing but it did indeed all come off.

Seeing as we're on the topic of William, I'm trying to stop him having a nap through the day, especially if he hasnt nodded off by 1pm, as it affects his bedtime. I can usually keep him going til Night Garden time on Ceebeebies, but not the other day. Was too cute not to, but here's a pic of him.

And just to finish off with an uber cute picture, dear sweet little cheeky William, dont ever change x

Monday, 23 January 2012

Has it really been that long??

I can't believe i've left it so long since my last post. Not intentional, just fitting 24hrs into a day can sometimes be impossible.

Since my last post, Harry had a visit from his Clic Sargeant Social Worker, who has been fantastic since his diagnosis. And yes, Madeleine did point out that men have moustaches so why does this lady have one. Thankfully this was uttered once the lady had gone, but she surely must have wondered what the wide eyed 3 yr old was staring at, ahem snigger.
On a sad note, she is moving over to a different job to vet people wanting to be foster parents, she will be missed but the rest of the team are amazing.

Lynne, Harrys VI teacher came last thursday armed with his personal play plan. Matthew needs reminding not to suddenly spring up on him, and we've all to try and remember to say his name before we approach him, so not to startle him. This is one of Matthew's favourite games and when Harry is bigger I'm sure he will act his revenge on him. She left loads of noisy toys and tactile things to play with (as if we didnt already have a houseful of noisy toys) and he enjoyed all of them until she brought out a squidgy ball, with feathery rubbery tentacle things on it (whoosshh balls I think they're called) Well he hated this like the plague, twisting his arms almost out of their sockets to stop touching it, and screaming blue murder. Erm Lynn, dont think he liked that one. Try it everyday she suggested, its remained firmly in the bag ever since. I know he needs to experience lots of different touches, but I am not traumatising him doing it.
He's also developped a REALLY annoying habit, and its starting to do my head in. Anything lumpy he eats, is squidged slowly out of his mouth. William has started telling him off 'Harry thats gisgusting' and he's right, it is. I am struggling to get a full meal into him, and he's only just started growing and putting on weight I certainly don't want it to start tailing off. I've tried going back to stage one puree stuff, and even this comes out, I think he thinks its funny, and its probably payback for force feeding him that disgusting milk down his nasal tube and I hope its just a phase, but ITS NOT FUNNY.

William is my daily source of laughter. He is so funny, I threw a cushion onto the settee, but as my aim is unbelievably bad, it knocked into him. He just turned his head, and simply said 'thats not funny mummy' which caused me to burst out laughing. He then ran to Danny and in the playground singsong telltale voice he went 'daddy, mummy throw cushions at William and its not funny' making me laugh even more. I always forget to capture these moments on video, I always have my mobile on me yet still forget to whip it out.

I have gathered quite a number of followers on Twitter now, a bundle who religiously keeps in touch, some famous (ish) people, mainly some of the Welsh Rugby Team, and now have a clutch of MMA fighters. Their messages are lovely and I can't quite believe over a thousand people follow us. Thankyou you lovely people if you read this blog, the more ppl raising awareness against childhod cancer the better.
I have always watched hospital programs, fact or fiction and used to look pityingly on those suffering. When Manchester Childrens Hospital first opened, Lorraine Kelly did a documentary on it, and the Oncology ward featured greatly in it. Look at all those poor families and what they're going through, I used to say. Those poor children fighting cancer, arent we lucky.
And now, we are one of those families, and my baby is one of those poor children and now I don't feel so lucky. And my friends on Twitter with sick kids probably feel the same, especially those like Niamh who needs treatment that the UK won't offer, and wont pay for in another country. So they resort basically to begging for donations to raise the money to pay for it themselves. Its outrageous, what right has our country to deny any child any treatment that may save their life. They are totally against any form of assisted death, but yet they assist in the angeldom of these children who cannot pay for treatment. A child is born alive and has a right to life, and its our job as the human race to ensure this happens. I hope to god that Harry's treatment remains 'straight forward' and that it continues to be available in the UK (in one of two hospitals that deal with it, maybe I should change his Just Giving page to Harry's just in case fund, just in case.

Friday, 13 January 2012

Friday the Thirteenth

I'm not superstitious but I did wonder if today is going to be lucky or not.
It started badly, early hours of the morning in fact when some selfish ppl decided to come back from a wild night out and very noisily crashed and banged their way back to their rooms opposite. 4am, 4 friggin ay em.
Well that was it, tossed and turned for next couple of hours before giving in at 6am.
Rachel was the same, grr selfish gits. Well like the adults we are, on leaving our hotel room, we acknowledged courtesy to the other guests (who were probably sleeping off a mega hangover) and SLAMMED the door about a million times and then ran to the lift sniggering. HAR HAR HAR

We set out for the hospital, with poor starving Harry minus blankets cos his stupid mamma forgot them. We came up behind a mum (with local authority tenant type dyed black hair) pushing a baby in a pram and her mum who lit up some stinky cigarettes so we crossed over quiuckly to get away from (and these are Raychels words) those scroaty people. Smoking wi kids is disgusting and a child should be able to take their parents to the courts of human rights to put a stop to it.
Anyway, we arrived on the ward of chaos, after a quick detour via the eye department for an eye test. Harry decided that he wasnt going to look at the interesting black and white images, and I don't blame him, they were not that interesting. He had his nasty eye drops squirted in by a eye doc/nurse that looked about 12 yrs old. Am I getting old? no she really did look about 12.

Second thing to not go right, Harry was second on the list. He has never been second, the youngest always go first, so here he was no longer the youngest, so who was the youngest???? And yes, in walked the very same people we had legged it away from to avoid their stinky smoke. erm hope they didnt hear us. So later than usual anyway, their little 7mth old Alfie went down to theatre and off they went to get some air, or nicotine, and usually you're asked to come back after half an hour as it really doesnt take too long. An hour later they sauntered back, armed with a shopping bag. COME ON, Harry is starvin, the nurses are looking for you, where the hell have you been???

And because of their lateness, I had to wait for the child after Harry to go down before the doc came and spoke to me. I was angry, because

Today I needed an early get away cos Danny starts his run of night shifts tonight and I had to get back in plenty of time so he could go to work and I take over the other 3 kiddlies.
Anyway, my anger didnt last long, because no matter who they were or where they came from, their little Alfie was too diagnosed with bilateral retinoblastoma today. Something no family or child should have to go through, and I did the decent thing and offered my support, which was gratefully received by them both. Poor Alfie, poor family, poor Harry I HATE EFFIN BRB.

Anyway, our news was a mixture of good and not so good. Harrys right eye had no new growth, but his left had a few seedlings again which they lasered. Back in 3-4 wks again. We had a longer talk with Dr Jenkinson who is lovely. She explained that they think the seedlings that are growing are from the original tumors and not actually new tumors. Same difference to me, things are growing, new or not. The existing tumors still look inactive. She arranged for a hearing test to be done, and although I know his hearing is fine, they want it in black and white, probably if he developped hearing problems later down the line they could say it wasnt an effect of the chemo. She also confirmed he will need kidney function tests every 5 years for the rest of his life, due to Carboplatin, one of the toxic chemo drugs he had had.
She also acknowledged (and Rachel and I are proud that we instigated it) that parents needed a bit better guidance for what happens when chemo finishes. We were under the imprssion it was only the first few visits new growth would be seen, and that was put right by Maureen at our last visit (see an earlier blog)but it can go on for years. She said she will formulate a fact sheet and talk about it at their next team meeting so they can manage new diagnosis parents better going forward.

Well our driver finally turned up at 1.45. Not exactly the early getaway we'd planned and it was the same driver who'd saved us from crash worse than death on the motorway last time. Thankfully the motorway was clear and I landed home just after 4 to be greeted by my other beautiful little angels. Am away only overnight but I don't half miss them. I made us all some tea, and William proclaimed that he doesnt like leaves, he he I'd given him some lettuce and off Danny went to work.

So Friday 13th, we'd had a little luck, Alfie's family had none. Harry's fight goes on and the amazing little smiler he is will continue to touch the hearts of all he meets. I am warning you cancer, stay away, well away.

Here's the smiley boy

Monday, 9 January 2012

Sunday 8th January Happy Birthday Harry

I apologise for not posting this yesterday, I forgot to press the publish button doh!

Well as I sit and type, this time 12mths ago Harry had just made his entrance into the world, that too was an event filled day, from waters going, alarming some people on the stairs as my dear sis was making me laugh continuously, to more poor fetal traces, to having some drugs to push him out quickly.

Well here we are 12mths later and my darling Harry is now one, most babies first years are full of weaning crawling walking sitting playing gurgling etc but poor Harry's has been quite different. I am not going to talk about it today, so if you need to know please look at my earlier posts.

Today was also special as he is getting christened. We were going to the same church where the other 3 were christened, a lovely church but their service starts at 9.30am, so an early start was on the menu. Harry was adorned in the same outfit William was christened in, pale grey and white. He looks like an angel and i will post pics later.

He was as good as gold, all my children were as good as gold. They all sat quiet for the hour long service, yes even William did. The star of the show just looked coolly on as water was poured over his head (the vicar wasnt shy of using plenty of water) and when upright beamed a great big smile. She then paraded him round to meet everyone in the church, he was happy to be cuddled by her and stole the hearts of everyone in the church.
It was so nice at the end to have everyone comment on how well behaved my children were, stop youre making my head swell.
What was also nice, knowing Harrys condition, she never made reference to it once, so those that didnt know in the church just treated him like anyother baby and we had no pitying looks etc, she did get everyone to sing happy birthday to him which was nice. Hanty Rachel and Uncle Darren, and Danny's sister Diane and other half were his godparents. Only right that Hanty Raychel was one.

We went down to the 'establishment' for his party. Harry was passed around like pass the parcel and just smiled accordingly. He was really enjoying the fuss so much so he fell asleep for a good hour lol I think he knew just when to fall asleep as the food came out so he gave me some peace while I could eat, clever boy he he. He had 2 lovely cakes, one for Christening and one for his birthday. Huge cakes but amazing how quickly they got eaten. Good as I am trying to be good for my New Years resolution and bringing left over cake home equals me eating it. He got some lovely presents, a mixture of toys, clothes, money and keepsake mementos of the day. I will treasure the memory of it as for nearly the entire day there was no mention of the 'c' word and it all felt normal and happy.

All the children, including daddy, failed to overcome the lull of 'magic car' on the way home and either fell asleep in the car or shortly after getting home. I had a lovely quiet coffee, til Madeleine realised she hasnt had her tea yet!! So they all awoke to eat something and then they all went to bed early, leaving me and Harry, so at 8pm I snuggled him and gave him his milk. It was lovely it was just me and Harry, cos it was 8pm he was born, so the only person missing was Rachel (oh and the midwives)and for that short time as I cuddled him everything else around us faded into insignificance. Happy Birthday my darling sweet little Harry xx

And so reluctantly I put him to bed so I could type this up. The house is quiet (apart from daddys snoring)and I can reflect on today and the past year. Despite everything that has gone on, and the dreaded 'c' word, Harry still arrived safely, and still grew (albeit not that quickly) and still became part of our family and still touched the lives of everyone he meets. He is loved by so many and adored by his brothers and sister and his mummy and daddy. I cannot imagine life without him, just like any other family with children. The only difference is that we have to also deal with his 'predicament' as I said in my profile message and first ever blog. Harry is still waiting to be given a break and I look forward to the time we go to Birmingham and they say 'actually we don't need to see him for amonth, 2 months, 3 months..' but thats a part of his journey which is at the other side of something like the Hampton Court maze. (which is massive)
We have a battle as we try and find our way through that maze, as some paths will lead us to walls and obstacles and some closer to the end,but I know that Harry will face and overcome every obstacle he comes across. His first year was bad, bloody awful actually but he has made it this far and this shows his courage and grit and bravery. It will take more than cancer to get him down and I am so so proud of him. Harry's journey goes on, and I will keep you posted all the way through it, though thick or thin and hopefully this time next year he will have made progress closer towards the end, and not have taken paths back towards the start of the maze.
His journey as a one year old will take its next step on Friday 13th as we will find out if anymore tumors have grown. I am expecting so but hope that there is none. He has gathered so much support on facebook, his blog and on twitter and we draw from the support and it keeps us going. Thank you all.

My final words, thank you Harry for being the wonderful boy you are, and making me the proudest mummy in the world. You are beautiful and courageous and I am so lucky to have you. God Bless you xx