Friday, 29 April 2011

Royal Wedding Day.
Matthew came home from school yesterday wearing his hand made crown (quite a good job too) waving his flag he had too made himself and his commemorative mug they had each been given. They had stuffed themselves at their lunchtime party, am hoping his class photo was taken before the festivities began. A few of his friends came out in tears as they had obviously ignored the advice ' hold tight to that box as your mug will break if you drop it'. Matthew's triumphant yells of 'my mug isnt broken' probably didnt make them feel much better. A few more mums sidled over to pass on their kind thoughts, its amazing how quickly chinese whispers get round. Its also horrid to know you're obviously topic of conversation when they either shut up as you approach or you get the looks over as they chat. Still i suppose the amount of offers of lifts to and from school and help with the others are very kind.  Am sure the chemo has had an effect as I swear blind (sorry about that phrase) Harry looked directly at me then gave me his bestest beaming smile. He does seem to be looking round more. Lets hope this next session means they can start laser/cryotherapy later in May.
Either William is making more sense now or my universal translator (start trek watchers) has finally recognised his language as he woke me this morning with 'mummy mummy MUMMY I need a cuddle'. I thought aw how sweet as I bleary eyed walked round to his cot to get him and give him said cuddle. But no, it was obviously a ploy just to get out of his cot. He is sat glugging a bottle of milk and watching Cbeebies singing along perfectly to the theme tunes. I think the makers of Cbeebies too had early wakers and put it together so they could have a lovley quiet brew. I am going to leave him watching it for a little longer as I get my ironing done. 3 cheers for cbeebies.

Tuesday, 26 April 2011

well back to school day came, and poor Madeleine had to stay at home as hers was 'closed due to unforseen circumstances'. Had the stomach wrenching task of reliving our nightmare to Matthew's headmistress and teacher, as the last time we saw them was the day before we went to Birmingham and they knew something may be wrong. Its actually quite horrid to see other peoples reaction to the news as they flounder wondering what to say. To look at him you would swear there's nothing wrong and sometimes its easy to forget when he's cooing and gugling away and then the phone rings and when its a witheld number you know its the hospital. This time we've got his blood count appointment for the 20thMay confirmed and then it all comes whooshing back. Am getting a little giddy on this rollercoaster now, only 5 more chemo sessions before it starts to slow down.
I'm thankful Matthew wears boots to school, as had he had shoes on his now very short long pants would look even more ludicrous. He grows in front of our eyes I swear. My clever little boy did some Mathletics on the computer when he came home. His teacher is so right, he justs works it out silently in his head and got every question right. I am such a meany mummy I made him do some reading too. He's way ahead at that too. So much so on the way to school this morning as we passed a road sign I noticed that someone had graffittied a swear word on it and at the same time Matthew too noticed it and pointed out such word. When I said 'no you must have been mistaken' he then went on to spell it and was almost triumphant in saying that he had read it correctly. Cue some 'don't you dare repeat that and definitely never at school'. He is not impressed that the royal wedding means that school is closed on Friday. I was chuffed thinking how cool was it that he loved working hard and then deflated rapidly when in fact he was annoyed that friday is scampi day.
William is mega cute. He just sings through his nursery rhyme repertoire and is beginning to get a touch of kevin in him as he now states no as noer. Laughed til my sides split when he whipped the potty away at the last minute as Madeleine was about to sit on it. She was not as amused however.
Six days til round two ...

Saturday, 23 April 2011

day 10 following Harry's first chemo session. His blood count should now start to pick up so hopefully he'll stop looking pale. Its also getting close to the 2week boundary where he could start losing his hair, am hoping he'll be one of the few that doesnt.
Took him to his first visit to Williamson's Park. We met up with Rachel and Darren Chloe and Callum, Was lovely seeing my little ones playing with their big cousins. William saw his first baby ducks and walked his little leggies off. Matthew and Madeleine enjoyed their first outside icecream of the season and Rachel sat on a splodge of it, thank heavens for baby wipes, her black skirt needed them more than Madeleine's face.
Laughed at auditions for Britains Got Talent but thought the soooo obviously happy singer singing alternative nursery rhymes was brilliant. Didnt win the lottery and didnt get to be the first into my lovely newly changed line dried linen bed - Matthew was snoring his head off on my side

Thursday, 21 April 2011

Well the nurse came to flush out Harry's line and change his dressing. She was lovely and gentle, although he did cry a little when she peeled off the old plaster. She was dying to have a cuddle. He's a little pale today but temperature okay.
We had a lovely afternoon in the garden. Madeleine wouldnt get off the trampoline,she seems to generate static electricity from bouncing and we've all had a shock from her. She wouldnt go near anyone and as she can't get down by herself, she stayed on for about an hour. In the end danny (having had a few cans of beer) decided to climb on and get her, he got a shock as he lifted her up then a bigger shock when he realised how bouncy it is when you're trying to stand still and hold onto a 3yr old at the same time. A few stifled giggles from my end. We had yummy bbq for tea, and all the fresh air has knocked them all out and its only 8pm, danny included.
Happy Birthday to my nephew Callum who is 14 today
Why can I not think of anything funny to write, maybe tomorrow

Wednesday, 20 April 2011

one week later ...

well that was one hell of a week. Harry has coped wonderfully with all those toxins running round his little body. He stopped taking his anti sick drugs and I no longer need to treat him as a leper when I change his nappies.
He has even started to laugh and gurgle again. What a sweetheart.
He will go back to Manchester on 3rd May for his next dose of chemo, then on 23rd May, down to Birmingham for a general anesthetic and hopefully his first treatment, then the day after back to Manchester for the next dose of chemo. Poor boy.
His macmillan nurse came today, she is lovery and uncannily like Danny's sister. She was probably wondering why I was staring. She thought all the cherubs were beautiful and so quiet. She should have come an hour sooner when Mads and Wills were fightin over the play hoover. Matthew gave his 'Kevin' grunt without lifting his head from the PSP (hand held gaming thingy). Am sure the afternoon yesterday with Callum rubbed off a little, he seems to give similar grunts too.
We had lunch yesterday at Hanty Raychels before going to Madeleine's heaven -asda. Why won't my tribe eat the very same butties at home but wolf them down at Raychels. On the way home Matthew declared that 'Hanty Raychel is the best hanty in the world cos she lets me stop instead of going to asda and she plants food in the garden'.
Got on the Wii and have lost 4lbs, not saying how many to go and I wouldnt recommend it but the stress over sick child diet is working a treat.

Saturday, 16 April 2011

to put it in a nutshell ....

The main reason for me starting this blog was to capture my beautiful baby boy's awful ride to hell and back as he fights off the dreaded 'c' word. The story so far ....
Leading up to his 6-8 week review he'd been bugged with jaundice and going off to hospital to get bloods checked, but all the time I was wondering why his eyes seemed to roll around but put it down to him being a newborn. He went to the GP at 8wks for his check and she noticed he wouldnt follow the light, although he reacted to the light. She asked him to go back 2 wks later.
2 wks later he still wouldnt follow the light and she also picked up his rolling eyes and decided an eye specialist should look at him. One week later I took him to the hospital. They put some awful eye drops in, darkened the room and had a look, and found (in their words) some raised lesions on his eyes. Not being sure what they were, and having mentioned the new word to become fixed in our vocabulary, they decided a specialist team in Birmingham should look.
They rang the following tuesday and arranged for us to go down. He had a general anaesthetic on Friday morning and half an hour later we were sat down with the life changing awful news. Our baby boy has cancer in his beautiful big blue eyes. Bilateral Retinoblastoma its called. So rare only 30-40 cases are diagnosed each year and to put our minds at rest (as if they could) said its one of the most treatable cancers thst children face. He had one large tumour in his left eye, which had lifted his retina slightly and 3 tumours in his right. They weren't small enough for them to begin laser treatment, so Harry needed to start his chemotherapy first. They would arrange with Manchester to start that.
So we came home, had a lovely weekend in the sunshine as a family to await a phonecall from Manchester.
Monday afternoon, 4pm so not long to wait, Manchester rang. Could we be at the new Hospital for 12.30 the next day. So off we went, signed loads of consent forms and Wednesday morning my darling baby went under general anasthetic for 2 hours to have a Hickman Line, a lumbar puncture and a bone marrow biopsy done. He had his first dose of chemotherapy through the night and we were home later thursday evening.
One day at home and here we are Saturday 16th. I will go back and fill in the details of his op and chemo but this will now be his daily log

Thursday, 7 April 2011

hmmm can't think of what to write now

Having been totally impressed by my sisters blog, I thought I'd start one to jot down the things that have happened in the day, good or bad. It seemed like a good idea but now I am wondering what to write.
I'll start with a little intro to us.
My name is Lisa, other half  Danny and we have 4 totally amazing kiddies. Matthew nearly 7 (and the nearly is absolutely important) Madeleine 3, William 20months and Harry 12wks. No I am not a Royalist, we just loved the names.
I am a stay at home mum, which in Danny's eyes equates to sitting on my bum doing nothing all day apart from the very FEW times he has done it alone and he didnt get time to do anything, but seriously without his working horrid 12  hour shifts I wouldnt be able to do it. Danny is a paramedic, has probably seen some sights, both horrid and funny, the daffodil being the latter (closed joke for those that know).
Matthew is my hilarious eldest. He is wordly wise and utters some absolute corkers, usually when you don't want him to. He has a bit of Kevin the Teenager in him and often when asked to tidy his room etc I get GODDDDD I have to do everyyyyything.
Madeleine is 3 and equally funny. She is a pretend shy runs a mile at the sight of a fly or spider (gets that from her dad) and her favourite hobby is going to Asda
William is 20mths and deliciously cute. He says bye bye see you soon to everybody and anybody, has waybuloo big eyes and can open any door or catch in seconds.
Harry is nearly 3months, has a lovely giggle and is waiting to be given a break.

There that sums us up for now. Will expand more as I go on.