|
||||||||||||
Click here to go back to the main page.
Sunday, November 9, 2008 6:43 AM CST
This will be a good-en!!!
Life has been plodding along pretty non-eventful, apart from the ongoing struggle Charlie faces with school, and his suspected ADHD/Aspergers
In September Charlie moved to class 1 – where he seems happier – after a few weeks I approached his teacher to discover why he is happier..... He doesn’t actually do any work! He wanders around the class and does as he pleases – and whenever demands are put on him he has a tantrum and shouts, screams, and gets physically violent – so they have been pretty much leaving him to his own devices!!
So I applied for Statementing myself – which they have agreed to do the assessment – great! And he has been referred to another Paediatrician who is assessing him for ADHD at present – we’ll cross the Aspergers bridge later if we need to.
I have been meeting with Charlie’s teacher and school psychologist to agree on ideas to encourage Charlie to co-operate in class and so far we are trying the token reward scheme – Charlie gets a token for each time he co-operates and it goes towards time doing something he wants to do. So far it is working.
Amy.......
At the end of September Amy woke one morning not able to walk and complaining of leg pain.
Yes we though the same thing too
We rushed her to the local GP, who sent us straight to A&E to see the paediatricians
Amy had bloods and urine done – and x-ray and then was admitted for further tests
We were bricking it at this point – but it turned out to be “Reactive Arthritis”
(Reactive arthritis (ReA) is an autoimmune condition that develops in response to an infection in another part of the body)
Amy was prescribed ibuprofen and paracetamol and sent home. We hoped this condition would go away within 6 months to 1 year – great!
But doubt still nagged at our minds, and Amy woke nightly with leg pain which was digging up painful memories from Jamie, and eating away at us so I returned to the doctor to beg Amy has “the Neuroblastoma test”
Our GP tried his best to reassure us this was text book Reactive Arthritis and we had nothing to worry about – but humored us and arranged for the test- a urine collection to go away for VMA/HMMA or Catecholamine measurement.
An appointment was made for Amy in the Rapid Access clinic at the local hospital where we attended 2 Fridays ago.
It gets better....
At the Rapid Access appointment Amy was examined and I explained that the pain had moved from her right to left knee, and then the Dr checked Amy’s heart.
His words were, “Amy has a slight heart murmur – I just need to go and confer with a colleague”
!!!!!
Then on his return told me he wanted to admit Amy for further tests, but tried to reassure me that the heart murmur was nothing – but of course it was already in my head – there was no taking it back!!!
Up on the ward another doctor managed to convince me that the heart murmur was nothing – most children have them un-noticed and un-eventful
He did however tell us that Amy doesn’t have Reactive Arthritis but Juvenile Rheumatoid Arthritis
http://en.wikipedia.org/wiki/Juvenile_idiopathic_arthritis
We don’t yet know which type Amy has, all we know so far is that she is Rheumatoid Negative and that she does NOT have Neuroblastoma! Test results are coming back slowly; I have to go back next week to see a specialist who may fill in some gaps.
Amy went to her first Physio on Friday and goes to Hydrotherapy on Monday – presently she struggles to walk as her knees are stiff and painful and she is on 8ml Ibuprofen and 10ml Paracetamol 4 times a day. She wakes 2 or 3 times a night in pain.
Personally I am gutted – another disabled child – another child in pain – here we go again! I am glad it’s not life threatening, but wondering “why me?” haven’t we been through enough crap?
My precious perfect gift from heaven! Bollocks!!!!
I am wondering whether to start another Caringbridge page for Amy so we don’t clutter Jamie’s page with updates and news – I will let you know when I decide
I will also find some recent photos of the kids to put in the photo section...
At least you can expect an update within the next month!!!
Love Kelly
xxxxxxxxxxx
www.beebo.info
By the way...
Amy went for surgery last week to have the foreign object removed from her right ear – it went well and she was in and out within an hour – and already sat up in recovery smiling when I was called in – all the nurses kept saying they wanted to take Amy home!
The foreign object turned out to be a tooth from a Bionicle (Lego) figure
We're hoping she doesn't shove anything else in!
I normally start my updates with “oh gosh has it been so long?!” and “sorry I’ve been slack!”
Blimey – it’s been nearly 3 months!!!!
We’re all well – at present! We’ve had the rounds of this that and the other type of lurgy – Dave’s been ill more than any of us – that’s men for you!!
Charlie’s had a couple of bouts of time off school for tummy bugs and temperatures, Amy’s had a constant cold, I’ve just got over Tonsillitis, and Dave’s had Man Flu, Tummy Bug, Upper Resp Tract infection, and many a couple more that I can’t recall!!
But yes – at present all are well and happy!!!
I’ve recently taken on a work at home job, doing marketing for Dave’s parent’s business (Garage doors, Security shutters, gates – anyone want any??) and then last night also took on a voluntary role of newsletter and website editor for Torquay District Cats Protection League.
This came about after I adopted a cat from the branch and got sucked in!!
The new addition to the family; is an 8 year old Devon Rex called Skye – I will post photos
Photos of Skye the Cat
Skye lived in a multi-cat household, and when she came to me she had already had all her teeth removed due to decay, and has digestive issues requiring a special veterinary diet. She’s a house cat – but I have given her the choice to go out if she wants, and have fitted her with a snazzy collar with our telephone number on one side, and “Do Not Feed” on the other – then anyone silly enough to offer her a saucer of milk would have been warned before they get a nice mess to clean up!!!
Skye came to us in mid April and has settled in well – she has a great personality, and tolerates the dog as long as he doesn’t come too close to her – which can get tricky when she’s on my lap and the dog also wants attention! A few times she has been sat on the sofa and he’s walked past wagging his tail and she’s been walloped, which she has not enjoyed!!!
Race for life – it was a boiling hot day, and we went 2 minutes over last year’s time of 38 minutes! But we had a laugh, it was a good day, and we raised around £504 – thanks to everyone who sponsored me.
Amy is enjoying her 2 weekly sessions at the local posh Nursery, and turned 2 on 14th June – we had a small gathering of family and friends at home, in the garden with the gazebo up, and Amy got spoiled as usual.
Charlie is still struggling at school – he is in a full class of 30 to 32 children, and has been disruptive and hard to manage at times. I got him referred back to the paediatrician to be assessed for Aspergers and am also in the process of applying to have him statemented for special needs education – hopefully we will get things sorted for him and he will start to enjoy school and thrive.
At home Charlie is happy, and we hardly have any problems with his behaviour – he is still obsessive, and wilful, but as we are in a routine and Charlie gets consistency we rarely face difficulties.
In September Charlie moves up to Class 1 – it feels strange that Charlie is progressing in school further than Jamie did – this time in 2005 Jamie had just relapsed, and missed moving up from Reception Class to Class 1.
Charlie turned 5 on June 10th, just 4 days before Amy’s birthday – he had a party with school friends at the local soft play centre, Bearfeet, and then we had a family outing to the Zoo, which was postponed till Father’s Day because Dave was ill on the week of Charlie’s birthday.
Both kids enjoyed the zoo – Charlie enjoyed the Mandrill monkeys the best.
Jamie’s sunflower seeds have been very popular this year – lots of people have requested them, and I am looking forward to seeing photos when they have bloomed.
I planted 12 seeds myself, hoping to get 8 plants – which I did, but along the way we have lost some to breakages, and slugs and now have 4 – but they are doing great and look like they are about to flower very soon – I will post some pics on the Sunflower section of the main website
Jamie's Legacy Sunflower
Please remember to take photos and email them to me at our new email address; kelly@beebo.info – the best ones will go on the website.
More sad news – we have lost quite a few Neuroblastoma Warriors since the last update, some I knew personally;
Austin Melgar
Emily Adamson
Spencer
and Michael – who has no website
I have also had requests to add lots of new Warriors, both in treatment, NED and Angels – and the Warriors section is growing!!
The end of this month marks Jamie’s original diagnosis and then his Eternal Life Date is 31st August – I am thinking of something to do to mark the day, but haven’t decided yet.
Love Kelly
XXXXXXX
Thursday, April 17, 2008
We marked Jamie's birthday with our usual balloon release in the cemetery. Charlie chose a Scooby Doo balloon, Amy a Pink Dolphin, Dave (Daddy) a Superman balloon and I had a Captain Scarlet Balloon. When we released the balloons Amy didn't want to let go of her beautiful Pink Dolphin and screamed and cried. This continued all the way home, so I managed to find Jamie's old deflated Pink Dolphin balloon in his trunk and fill it up with helium in it to cheer Amy up.
The problem then was that Amy obviously thought it had come back, and was eager to re-release the balloon again, so the tears returned!!!
I have revamped Jamie's main website, and added lots of new sections, including a page all about Jamie's Legacy Sunflower - which we have seeds available, if anyone wants some - please visit the site and follow the appropriate links
Jamie's Legacy Sunflower
I have found that time is a good healer - for myself personally - each birthday is easier than the last. I am still receiving regular messages when I go and see my favourite Medium/Clairvoyant, Steve Holbrook. On my last, most recent visit I took friends, and one of them also got a message, which we believe was helped by Jamie. I find it a great help to have communication from Jamie - and to know he is "in the next room". I honestly believe I wouldn't have coped as well without, and owe a lot to Steve Holbrook.
I chickened out of the 10K Race for Life this year, and settled for the 5K Race for life, which is sooner, May 11th, so hopefully I have been training hard enough to beat last year's time of 38 minutes.
Please visit my official Race for Life page and if you're feeling generous, maybe sponsor me?
Race for Life Page
Kids are still doing great. Amy has started attending the nursery at Trinity School (Private Catholic School) for mornings a week - she is loving it so far.
We are in process of adopting a rescue cat - an 8 year old Devon Rex female called Sky - she is a dark brown colour, with crinkly soft fur and hair-tipped big ears. Her previous owner was suffering Arthritis and moving to Spain and couldn't afford to take all her cats, so Sky was left behind with a beautiful Siamese of the same age - who still needs a home- I would have loved to rehome both but being sensible, one cat is enough. We are sure that Frodo will get on with the new cat Sky, once correct introduction procedures are followed. Devon Rex's are meant to be highly intelligent, and very affectionate, and supposed to get on easily with dogs, so fingers crossed!!
I will post photos of Sky on my next update once she is settled in.
I'm afraid I have some more sad news on this update - Samantha Hughes - a beautiful 5 year old girl from the UK, who was diagnosed with Neuroblastoma in September 2005, has passed away. Jamie's website inspired Samantha's father to create one for Samantha.
Samantha Hughes
Please check back after May 11th, for progress of my Race for Life 5K
Love Kelly
xxxxxxxxxx
Friday 7th March 2008
As Jamie's 8th birthday is looming, I always dread the build-up to it, and hopefully it will go by smoothly, without too much upset like it thankfully has done the last ones.
This will be the 3rd birthday that Jamie has spent in heaven without us - I was wondering what kind of party he would have asked us for, and what presents he would have liked.
I see Jamie's classmates daily; they are all growing way too fast. They run past me in the opposite direction as I climb the steep hill of Charlie's school to collect him, and most of them still smile and say hello - it's nice to see them, it gives me an idea of how big he'd be, by seeing how his friends have grown. I often wonder if he'd be tall or shortie compared to his classmates.
This year I intend to run the 10k Race for Life which will probably take place in September, the website hasn't started up for registering yet. Last year I ran the 5k Race for Life, and promised myself I would do a run each year and build myself up to do Bristol Half Marathon and eventually London Marathon. All for Jamie. Well I can't give blood anymore since my blood transfusion after having Amy so I've got to put myself through some kind of pain for him!
I've been keeping fit (ish!) and despite my Christmas blip of gaining a stone and a half, I have managed to stay in good shape. I've recently had to alter my diet because I have been suffering with Irritable Bowel. I've been worshipping Gillian McKeith Recipes and cutting down on bad foods to try and control my symptoms without the need for medication. So far I'm doing well, and have been proud of my culinary skills making home-made soup, Mung Bean Stew, and such like!!
The kids..... Amy still seems to have the same cold as she did last time I updated in January. The snot slowed down for a week and seemed to dry up for another week while she had a bad cough, then the cough disappeared and the snot sped up!!!
Amy is growing up way too fast, and it's like living with a teenager some days - she is a right bossy madam, who knows exactly what she wants, and how to get it!!
Her speech is coming on leaps and bounds, and she likes to sing often, sometimes making up her own tunes!! I think she will be an artist or musician.
I enrolled her in baby gymnastics for a 2 week trial but she didn't enjoy it, so we will wait until she is 2 1/2 or 3 for ballet and tap.
Charlie is doing great - he is loving school and has made lots of friends.
On his first day at school I was scared that he would kick up a fuss but he put his uniform on without a single protest - and even seemed nervous, as you can probably tell in his photo on the slideshow above. He set off looking smart and returned scruffy in a pair of school spare trousers after he'd got wet playing with water!! Boys will be boys!
Today we had one of his friends to play after school, and hope to do it more often.
It was parent teacher interviews this week, and Charlie's teacher is very pleased that he has changed lots since he started in January - he takes part a lot more, but still refuses to do PE - his kit stays untouched and clean!!
Charlie is good at Phonics, and has just brought home his first reading book with words in, instead of just pictures! I nearly cried when I saw it!!
I decided to stop Charlie from going to Gymnastics, as he wasn't enjoying the queuing and waiting, and was finding it hard to behave. I would often arrive to pick him up and he would be crying because he'd been naughty and told to sit out. I'm hoping Charlie will start football after his 5th birthday this June.
The kids will have a joint 2nd and 5th birthday party this year - either with an entertainer or at Bearfeet play centre. Charlie already keeps asking when it's his birthday, and is already compiling his present want list!!!
We got some sad news this week - Jamie's friend Jack, from Bristol has relapsed for a 2nd time with Leukaemia - he is a tough kid though so we have no doubt he can fight it again - you can help cheer him up by visiting Postpals and sending Jack cards and stuff while he is in hospital
Jack on Postpals
Tuesday - January 1st 2008
Happy New Year!!!
Wow - I haven't updated since September 28th!!!
Both kids have had a stinking cold and a cough recently - up until 2 week ago - Charlie had 2 weeks off school because he was coughing so bad, and Amy's nose run constantly like a tap - where does a small child get so much snot from?
In November we were lucky enough to get invited on the Santa Express Steam Train from Buckfastleigh to Totnes - this was arranged by The Rotary Club, and was a special day. I was impressed that both Amy and Charlie stayed sat down and behaved throughout the journey. The train travelled at 20 mph so it took quite a while to get to Totnes. There were lots of people from The Rotary Club dressed in costumes, pink hippo, Dalmatians, bears, clowns and a Father Christmas who gave all the children a gift each. Charlie got a car and caravan and Amy got a cuddly polar bear soft toy.
At school Charlie was assessed by the School Psychologist - and I attended a meeting to discuss Charlie's behaviour at school and his needs. Thankfully it was decided that Charlie does NOT need statementing. Charlie has made great progress with his speech and communication, which has had a good knock-on effect and improved his behaviour at school. We also saw Charlie's Paediatrician, who was so pleased with his progress that she's discharged him
Charlie is still attending Gymnastics club once a week for an hour - and loves it. When I drop him off I hang about just to see them all do their special warm up dance routine - they all bang small sticks to music - and Charlie always has a huge grin on his face.
Amy is almost as big as Charlie!!! For Christmas photos when I stood them next to each other I couldn't believe how much she is catching Charlie up!
We've discovered that Amy is arty - she loves to paint and draw, and play with Play-Doh. She is speaking and saying 2/3 word sentences, and attempting to count and sing. She has a lot of help, as Charlie now chatters non stop from the moment he wakes, until he falls asleep!
It was my birthday 10th December - My Parents, Gran, and Aunts and Uncles all put together to buy me a new digital camera - mine was not very good, and after being dropped on the hard floor when Amy knocked it out of my hands it made a funny noise when it I switch it on and off. I got a Kodak SLR/professional type, 8 mega pixel beast of a camera. Hubby Dave got me a piano! What a great surprise! I can't actually play the piano, but have always wanted to learn, and it's a great opportunity for the kids to learn too. We've discovered that Charlie is quite musical - he thinks the piano is great, and makes up tunes, and is very imaginative. He even sings for me!
I'm addicted to Facebook - thanks to those who have found me and added me to your friends list. I have found loads of my old school mates, and was pleasantly surprised that they have messaged me, asking what I've been doing since school etc... I apologise if any of you have requested that I add them as a friend and got refused - unless you tell me that you're a visitor of my Caringbridge I will assume it's a random request - I get a few from complete strangers, who just like the look of my profile pic - what can I say?!!
Again - If anyone wants to add me as a friend on Facebook after following Jamie's story - Please add message "Follower of Jamie's Story" - Cause I don't normally add strangers unless through here, and you might get offended when I ask how we know/don't know each other!!
I have just done another partial update of the main website www.beebo.info - we have lost a few warriors and a few have relapsed unfortunately. I have also added some more links - some are to websites of fellow Neuroblastoma parents that I have met through my online support groups.
I belong to an online support group of parents who have lost a loved one to cancer - the majority of us have lost to Neuroblastoma, we used to be members of the Neuroblastoma online support group, but one parent set up this new group after losing a child to Neuroblastoma, so we've filtered onto it as we've lost also. It's a great source of comfort to be able to communicate with others in the same boat.
Thank you to everyone who sent Christmas cards - this year was the first year since Jamie passed away that I have sent Christmas cards properly. I attempted to home-make some of the cards this year - using a design idea that I stole from my friend's Baptism invitations! I'm wondering what design I can do next year! I already have some great photos taken this Christmas that I can use on next years cards.
I managed to do nearly all of my Christmas shopping this year online - I hate shopping! I get my weekly groceries online and delivered because I can't cope with actually going into the supermarket and spending god knows how long avoiding other idiot's abandoned trolleys, and all the other wallys that one encounters while trying to find which aisle they've moved the eggs to this week, and while Amy and Charlie squabble in the trolley. My mind goes to mush and I end up forgetting loads from my list - which Amy always manages to snatch from my hand and rip in half! Yes I'm a wimp, I know!
We had a lovely Christmas - we had a quiet one with just us and grandparents over the 2 days. The kids were spoiled rotten, and I'm struggling to find where to put all their new toys.
Charlie starts school on 7th January!!!!
At the moment he goes to pre-school and is in Nursery class at Our Lady and St Patrick's RC School just 200 metres walk from the house. When he goes back after Christmas break he will start reception class at the same school - in the classroom next door.
Charlie has already said that he doesn't want to wear the uniform - and I expect he'll kick off big time when we try and make him wear a shirt and tie!!
I will try and do another update in a few weeks time - with photos of Charlie in his new school uniform, and to let you know if we managed to get him to wear the tie!!!
Love Kelly
xxxxxxxxxxx
Friday, September 28, 2007 6:30 PM CDT
I’m guessing my last update was around the end of June – for some reason there’s no date on it!!!
Oh my God what have we been doing?
Enjoying the summer I guess – during the holidays we spent a lot of time down at the park and on the beach
Both kids had the chicken pox in July – Charlie first, then 2 weeks later Amy had it bad on the back of her head and neck
Of course August 31st was Jamie’s anniversary – we spent a quiet private day together and released some balloons at the cemetery.
Charlie’s been doing well, his speech and behaviour have improved greatly – we can actually have a conversation these days – and he does say the funniest things!
His school allowed him an extra session at preschool nursery to prepare for starting school in January – as I was worried that he won’t take the change well.
The headmistress is arranging for Charlie to be Statemented through the school to get him extra help in the classroom, apparently he can be wilful and disruptive when he won’t join in.
As from this term Charlie goes for all day Monday and Friday and a half day Tuesday and Thursday.
On his whole days he has a packed lunch – cheese and mayo sandwich, no crusts, cut into small squares!!! A fairy Cake and packet of Quavers!!!
When I pick him up on his full days he tries to make me feel guilty by saying I made him feel sad! At 12 the half day children get picked up by parents, so Charlie has to sit on the mat and expect me, and then have to stay all day!! I asked his Teacher if he cries and she said no – so it’s just an emotional blackmail!!!
During the summer holidays I enrolled Charlie on a weeks intensive swimming 9.30am every morning – he didn’t learn a thing!! He was off with the fairies doing his own thing most of the time, not paying attention to the instructor, and at one time nearly drowned himself!
After this I found him swimming lessons at a local guesthouse pool – he attended a few, but hated it – the instructor was a very big loud scary lady with bosom, and he just wasn’t enjoying it! So we stopped before he got put off swimming for life!
3 weeks ago Charlie started Teign View Gymnastics Club, on a Wednesday – he’s been on the waiting list for ages – he loves it – I sat to watch for the first few sessions, and seeing him with this big grin on his face joining in made me well up!!!
This month Charlie has had a hair cut!!!!!!
It wasn’t meant to be short – I told the hairdresser to keep it long, and we agreed on the length, but somehow it got shorter!!!
I was just amazed that he sat still and didn’t kick off, and let the hairdresser cut his hair – and it looks nice.
I swear Charlie must have come so far to have a haircut in a salon!!!
Amy is not a baby anymore!!
She’s a little girl!!! And she’s started talking!!! Her most clear word is “Cooker”. She is such a funny character – her and Charlie get on very well – she is truly a gift from Heaven.
Jamie’s Headstone is finally ready!
You can see the pics – It wasn’t ready for his anniversary, although Stonescript, who made it, hoped it would, but it got lost at the docks for 10 days.
But it was ready a week after, and I just popped up with my friend Coralee on the off chance, not really expecting it to be there and there it was- what a relief to have it at last! I got home to phone the stone mason and thank him, and he’d just got home from putting in in!!!
I love it – and it feels better visiting him with it now
Jamie’s class grew sunflowers from the seeds I gave them from last year’s sunflowers….
The year Jamie died he grew a sunflower at school, which outlived him – we took the seeds from the head to grow new sunflowers next year, and so on
I call it Jamie’s Legacy Sunflower – and this year is generation 2.
As I was saying, Jamie’s class grew his sunflowers and all posed for a photo together, which the put on a card, signed by everyone – When I was given it I did get choked!
I will try to upload it, some time, but will have to blur the kids because I obviously don’t have their permission
Jamie’s school have also got a Friendship bench in Jamie’s honour – the idea is that if you need a friend you sit on the bench.
The Headmistress said, "The bench will be a lasting memorial to him and will help to remind us all of the friendship he gave to everyone he encountered in his short life"
I like to see Jamie’s classmates run by each day – I can easily imagine what Jamie’s would be like at that age – I think the hardest part will be seeing Charlie in his new school uniform – I have decided Charlie gets all new uniform, and not Jamie’s – it’s just too weird and well you know!!!!
Me? I’ve great – I’ve found Facebook – and hooked up with a bunch of my old school mates – I was a horrible bitch and a bit of a bully at school, I used to intimidate quite a lot of people – and It’s nice to know that people are willing to see if I’ve changed and grown up – we’re hoping a school reunion type pub crawl soon!
If anyone wants to add me as a friend on Facebook after following Jamie's story - Please add message "Follower of Jamie's Story" - Cause I don't normally add strangers unless through here, and you might get offended when I ask how we know/don't know each other!!
I’ve posted Neuroblastoma Warriors as a Facebook group – if anyone wants to join – if you want to link to me on Facebook – search Kelly Rendall
MY FACEBOOK
I hoped to be doing the Commando Challenge this year, but I couldn’t get 3 people even to make a team!! Grumpy devils!!
Hopefully next year I’ll do it!
Thank you to everyone that’s been signing the guestbook – please actually will UK residents go to sign this Childhood Cancer Bill Petition?
Cancer Petition
There are details on the site
Until next update
xxxxxxxxxxxxxxxx
Wow 3 months have passed since my last update!
I wanted to wait until after I had done the Race for Life, then didn’t get round to it – then wanted to wait until after the Kids birthdays, so here we are!
It would have been Jamie’s 7th birthday on 15th April – I bought some balloons to release and on the morning of his birthday discovered my helium cylinder had run out!!! I managed to do a few balloons but was gutted.
We visited the cemetery where we let the balloons go and tied a Superman balloon to his grave cross.
Jamie’s headstone has been ordered and we are waiting for it to be made – I will pot photos when it’s all done.
We got quotes and drawing from a few local companies – kinda like auditions, and then decided to chose a company that Dave best liked the design.
I went to see Steve Holbrook in April, just after his birthday – and got another message!!!
Steve Holbrook said that Jamie has a baby with him, and it’s a boy – he’s looking after him – that must have been the eptopic baby! I wanted to find out that he/she was safe and sound, and Steve Holbrook answered my worries again!
In May I completed the Race for Life in aid of Cancer Research – a 5km run.
It rained on the morning of the race/run, and there was an earlier group running, who ran in the pouring rain – I was due to run with Jamie’s Auntie Kim – and told her that Jamie must be testing us to see if we are willing to run in the rain.
We set off for the afternoon race, in the rain – and halfway there the rain stopped, clouds parted and sun shone!!!
The rain kept away for the whole race – like a miracle!
And my training paid off – although I hadn’t managed to train run to 5km I did it on the day in 38 minutes – and finished with soggy wet muddy trainers and tracksuit bottoms!!!
In total I raised £720 – give or take a few pence! So thank you to everyone who sponsored me.
I have continued to train and I hope to do either the 10km race or half marathon next year – it’s been a great help for me to lose weight and get fit.
Charlie had his 4th birthday on June 10th – we didn’t have a party, but invited family round to sing happy birthday and for Charlie to blow his candles out.
This year Charlie made his own birthday wish list which mainly consisted of Transformers! This is Charlie’s latest craze – Robots!!!
We took Charlie to a Dinosaur Wildlife Park in North Devon for his birthday treat – there were Dinosaur features, A Mummy’s Tomb, Wallabies, Monkeys, Seals and lots of hills and steps!!! Unfortunately it rained but we still enjoyed the day.
Amy turned 1 on 14th of June – Amy got her first tricycle, a special one for babies with seatbelt and parent handle. I can’t believe she is 1 already! – Where does all the time go?
I have uploaded the movie of Jamie’s special day, at Lympstone with the Army, to UTube, and will post it here for a while too – also there are new photos playing on the slideshow above
Our UTube Home Movies
Both Amy and Charlie are very well – Charlie is making lots of friends at school and has a full diary of parties coming up!!
Amy has been walking for over a month now, and has loads of teeth – she is a right madam! And has bits of both Jamie and Charlie in her – I must get round to uploading more movies of them to UTube.
I am currently working on more pages for Jamie's website www.beebo.info - and there will be a links page soon. I have recently added Jamie's Journey for people who have joined us along the way and don't want to trawl the whole journal.
That’s all for now – that I can remember!! Hopefully the next update wont be so long
March 2007
Another month rushes by!!!
As you may have noticed by the video above, I am doing the Race for Life this year for Cancer Research UK – and before you tell me that they only concentrate on children’s Cancers or something along those lines, then don’t bother – I am doing it more for Jamie than for the cause, if you know what I mean.
When we were in Bristol my friend did the Bristol half marathon for her so, who also had Cancer, and it was an emotional challenge as well as a physical one – we are putting ourselves out and breaking through the pain barrier, but by no means feeling even a small percentage of pain compared to what our kids have felt.
So please help me reach my £1000 target by going to my sponsorship page
Kelly's Sponsorship Page
News – I have been trying desperately to lose some weight, and recently joined a local gym which I was attending a few times a week, plus doing aerobics twice per week and dog walking everyday.
My weight reduced well, but then I felt I had reached a lull and wasn’t losing anymore weight.
Then one night after going to bed after aerobics I woke at 3am in agony with tummy pain. I was up for a while, and tried a warm bath and sitting on the loo but the pain seemed to be getting worse and I contemplated calling an ambulance.
I phoned the on-call Dr and told him I thought I was either having an Eptopic or a Miscarriage – this I assumed due to the pain location.
Dr said don’t be silly, take a Rennie and return to bed – it is colic pain.
So the next morning, after Rennie and Paracetamol I am still in pain – and also bleeding from down below.
I stayed in bed and slept all day until my next Dr appointment at 4.30, where the Dr suggested I was pregnant and miscarrying – he commented on my diagnosis of Eptopic or Miscarriage to the on-call Dr from my notes, and dismissed an Eptopic.
So I bought a pregnancy test and it was positive!!
I was booked into the Early Pregnancy Clinic for an Ultra Sound the next morning, where they discovered that I was having an Eptopic Pregnancy – that’s where the pregnancy is in the tube, not the Uterus.
I was admitted straight away and went down for surgery the same day, where they removed the blockage by keyhole surgery – luckily even though my tube was ruptured it was ok, and they didn’t remove it – not that I want anymore kids – I was on the Pill!
So this all happened on 22nd February – Dave had to take 2 weeks off work to look after me, as I was unable to lift the kids or do housework, and when I take Charlie to school I have to walk up a massively steep hill with a pushchair!
When Dave went back to work my mum took time off to help, and to push the pushchair up the hills for me!!
I’m ok and back to normal now – hence doing Race for Life – which has been approved by my surgeon
I’m not dwelling too much on the Eptopic, and losing a baby – we weren’t planning on any more children, and I think this was nature’s way of saying it isn’t to be.
I am at peace to think that the baby is safe with Jamie in heaven.
Charlie is still doing fabulously – talking loads, and so well behaved.
We had his joint assessment meeting after his 6 weeks of assessment and basically he is NOT autistic and has NO mental disabilities. He has approximately 1 year learning delay and speech delay, and will need to see a dietician.
His blood test showed his HGB at 9.8, making him mildly anaemic so he is on 3 months of iron.
Charlie’s speech therapist came today, after not seeing him since November and thought he was like a different child! So she signed him off and said we have done so much with him, that he will only see the school speech therapist within a group at Nursery.
Yesterday I took Charlie for a hearing assessment at a local hospital – wow – he co-operated, and even let the Dr stick equipment into his ear to examine him!!!
I came out of the appointment almost in tears, and so proud of how well Charlie is turning out – I’m sure Jamie is so proud.
I have updated the photos again – this was done over a week ago – and I will update them again just before the next update. I have also uploaded some more videos to my YouTube – of Charlie and Amy, and I plan to upload some of Jamie when I get my video camera back.
My YouTube Home Movies
Amy is 9 ½ months now, and is nearly walking – she has taken a few steps recently and stood for a short while before bumping down on her bum.
She says Hiya, Mama, Dada, Nana, though I’m not sure 100f they are said at the right people!!
Last week I went to see Tony Stockwell at Torquay Princess Theatre – although I didn’t get a personal message I was amazed at how good Tony was, by hearing other people’s messages and seeing people’s surprised faces.
Tony was also funny very entertaining, so I didn’t mind not getting a message
Next month I am seeing Steve Holbrook again, in Plymouth.
This will be just over a week after Jamie’s 7th birthday.
Jamie really wanted to be 7 – It was the age he had to be for something he wanted to do – I think it was for Armed forces insurance to allow Jamie to have a ride in one of their aircraft.
I am going to do a private balloon release as normal, and we will spend the day quietly at home without any fuss.
I hope to do a new page on Jamie’s website called Jamie’s Journey – a briefer account of Jamie’s fight with Neuroblastoma, for people who haven’t travelled with us from the start.
Jamie’s headstone is still in process – we are liaising with the stonemasons still, and trying to make sure that it is perfect.
I plan to update just before the end of April – after seeing Steve Holbrook, so hopefully I will have a message from Jamie to share with you
Love Kelly
xxxxxxxxxx
Thursday, February 8, 2007
Wow – hasn’t time flown by!!
I’ve updated the photos slide show above!!
We had a great Christmas – the kids got too many presents, and we all ate far too much! I am paying for it now by having to go to the gym and diet to work it off!
Christmas day we spent down in Crapstone (yes that’s a real place!) at my Auntie Sarah & Uncle Mark’s house, with all the family gathered. I was worried that being around other people’s children on Christmas day would be upsetting, but this time I was fine – it probably helped that the kids (my cousins) all hid upstairs most of the day, as us adults are soooo boring!
The kids…… Charlie has come on even further. He is talking lots more, is calmer and better behaved.
I’ve been taking him to a special child centre for weekly assessments for the past 5 weeks. There is a nursery there with trained nursery staff, and OTs, Psychiatrist, Speech Therapist, Dietician all do their own assessments of Charlie then after the 6 weekly sessions we have a joint assessment meeting to discuss if he needs extra help in certain areas.
Next week is the final week, before we meet together and are told what their findings are... so far I’ve been told by the Psychiatrist that Charlie’s mental age is correct for his age, and that he has no mental problems, no autism etc, which is excellent news – she said he is a very happy child and can’t see any that he’s effected by the past 3 years any longer. I’d have to agree with this. Just recently I’ve noticed a massive change in Charlie – he is ok now.
The week before Charlie’s assessments started he had an Ophthalmologist (eye) appointment, and I was so nervous that he wouldn’t co-operate. Charlie’s normal reaction to any type of appointment is shouting, refusing to co-operate, and trying to get out the door. In the past, when I’ve taken him to any of my appointments with the doctor or Midwife he has been aggressive verbally and physically towards them, which was so embarrassing! Once he tried to attack the midwife when she was taking blood from me... we had to shout for help from the next room!
Well this time the ophthalmologist was excellent, she didn’t pressure Charlie, and Charlie co-operated. I didn’t realise that she was doing test half of the time, as she never even touched Charlie, and Charlie didn’t try and leave the room, and stayed clam and happy throughout!
I was so shocked and proud I had a little cry!
It seems this was the start of the new Charlie, for on week 3 of his assessment, he went with nursery staff into a medical type room and let them weigh and do his height!! Something that we couldn’t do at the initial meeting back in December/November (bad brain)
Then this week was the best – they wanted to take blood, which they’d warned me about last week, and I have been so worried about how Charlie would react.
I needn’t have worried – he let us put the magic cream on, then left it alone for the 30 minutes it takes to work. Then we took him to the medical room, not mentioning the word Doctor!! He sat on my lap while the nursery staff held his arm, and when the doctor stuck the needle in, he said ouch once, but didn’t cry, didn’t struggle, just sat there so still – I nearly cried again! I was so chuffed and proud.
The reason why they take blood is to see that there is no underlying medical disorder that could be affecting his speech/behaviour which doesn’t seem that much of a problem these days!!!
We’ve even had great success with Charlie’s potty training – he is now in big boy’s real pants 95f the day, with the exception of long shopping trips and long car trips. He goes on the toilet without needing prompting, but still wears a pull-up nappy at bedtime – our next goal to tackle. We’ve only had 2 or 3 accidents in the past 2 weeks, which were down to Charlie being too engrossed in the activity or TV to go toilet!! The rules are; stay dry and clean at school and he gets a chocolate coin and Television after school for a couple of hours. But if he doesn’t stay dry or clean no choc coin or TV. This seems to be working great.
Charlie is loving school, and it’s doing him the world of good – I absolutely love it when he comes home with art and stuff. This week he made a gingerbread lady, which I photographed before we ate! I would have loved to have kept it forever, but wasn’t sure how to... we already have so much of the kids precious things stashed away anyway! I’m a sucker for kid’s school art/paintings etc... We have them up on the walls of our kitchen before laminating them and storing them in memory boxes/crates.
I have got a YouTube account now, and have uploaded some home videos of the kids, which I will be adding to over time – feel welcome to have a peep
Our YouTube
Charlie and Amy are still getting on excellently – although Charlie is very possessive of his toys and of some of hers too! Charlie also is possessive over Amy and doesn’t like anyone else getting too close, he says, “No – My Baby!” and pushes them away!
When Charlie goes to school Amy loves to play with Charlie’s toy – when the cat’s away the mice will play!!!
Amy is now 8 months old, and has been crawling for a while, and now pulls herself to standing at the furniture. She’s into everything, and everything goes straight in her mouth, where she has 6 teeth already!
She does this funny fake grin – which is hilarious, I don’t know where she got it from. And has a great happy content manner, and a wicked sense of humour – she claps along to pat-a-cake, and bobs and sings and dances!
Dave will have been at his job doing telephone support for Toshiba laptops around a year now – a personal record for him I believe!
He plans to restart his own business that he had before Jamie relapsed – for those that don’t know – Dave builds, fixes and services computers and laptops and is an expert dab hand with networking and has even built a server (plug plug!!) He had his own business called NeTech but when Jamie was diagnosed back in 2003 he stopped to give his full attention to Jamie.
We plan to turn half the garage into a workshop/office, with its own entrance to save customers disturbing the house – Dave will probably be reducing his working hours to part time at first until business picks up enough for him to go it alone.
It was so much easier for him 4 years ago when we only had one child to think about but these days with 2 kids and a dog he’s being careful.
So if anyone in our area needs computers mending, viruses/spyware resolved, new pc builds, home networks, wireless networks, etc… be sure to remember Dave. He has even fixed Macs before.
Sadly I must announce that our Daydreams – Jamie Rendall Memorial Trust charity is closing down – Dave and I are finding it emotionally difficult.
All the funds that have been raised are to be donated to The Thomas Ball Children's Cancer Fund – which is an almost identical charity – Tom Ball was a young boy who also fought Neuroblastoma before he gained his wings on 30th June 2003 aged 13.
You can visit The Thomas Ball Children's Cancer Fund here
The Thomas Ball Children's Cancer Fund
Daydreams funded Beebo.info website costs last year – so as the charity is no more, I will be asking for donations towards the next renewal, I will find out when it’s due.
Some of you might have noticed the new website is finally up, after months of promises!!
At present I only have a few sections, and will be adding them, as I get time to convert the old site into the posh new one.
Lots of new children have been added to our Neuroblastoma Warriors – we have just added a 22 year surviving girl called Jessica on the NED section.
The purpose of the Neuroblastoma Warriors is that other parents can see all the other children fighting and have hope for the child’s recovery and to know that they are not alone. I remember when Jamie was diagnosed I felt so alone, and I could only find children’s website who had passed away, which made me feel worse. Of course I include an Angel section, lets be realistic, not everyone will survive.
I have come across many UK families all raising funds for this antibody treatment in New York, and suddenly thought; wouldn’t it be a better idea to all group together and use the money to campaign or fund the treatment in the UK?
Dave found the following articles that some of you will find very interesting
Scientists cure cancer, but no one takes notice
Cheap, safe drug kills most cancers
I don’t think there’s anything else – oh – except – those local to us might have seen this week’s free newspaper – yes that was me, complaining about inconsiderate resident’s, dog poo and bonfires!!! I never thought it would be printed, how embarrassing!! I can’t wait to see if anyone responds next week!
See Yall!
Love Kelly
xxxxxxxxxxx
Tuesday, December 19, 2006
Apologise – I was sure I’d done a November 14th update, but when I just looked I realised you poor people had been waiting since October!!!
Wow – last week I turned 30!!! I went out to an Indian restaurant and nightclubbing with some close friends; it was almost like being 21 again!!!!
We are all well, as far as my memory serves!!
Charlie is doing excellently well; he has just finished Nursery for Christmas break, and will be returning exclusively to Our Lady’s for 5 afternoons per week, and no longer attending Happy Days at all. This is due to Our Lady’s Nursery being made part of the main school, and early years grant funding technicalities! Its great news though, as Our Lady’s has played a major part in Charlie’s progress over the past 2 months.
You’d hardly recognise Charlie these days, personality wise – he is so much calmer, and less aggressive, and less angry.
I did a wonderful thing, and turned off the television, and he has began to talk loads – so much that at times we have to tell him to shut up!!!!
Charlie now says please and thanks, or banks as he pronounces it!!!! He is co-operative most of the time, and likes to please (providing he’s in a good mood!)
He starts his assessment at John Parkes unit for possible statementing in January, and has already been for an eye test, which he co-operated beautifully – which made me come close to tears with pride and shock!!!
Last week it was Charlie’s Nursery nativity, which he was to be an “Animal” – we chose a sheep, seeing as we had Jamie’s old costume from his nativity in 2004.
Leading up to the event we had our doubts at whether Charlie would be in it, but his teacher said that he had been enjoying singing “wind the bobbin up” on the stage during rehearsals, and her problem was getting Charlie off the stage!!!
Charlie had recently also learned to sing “twinkle twinkle, and Baa baa black sheep” which is a great changes, as Charlie would usually shout at us to stop if we sung to him, but is now embracing it!!!
The day of the nativity arrived and I couldn’t persuade him to wear his sheep tabard and ears hat, so I sneakily sewed the ears onto his cream fleece jacket hood, and he happily wore this, oblivious of the ears!!!
I sat in the audience, remembering how I’d sat to watch Jamie 2 years earlier, and hoping I wouldn’t cry – when I spotted Jamie’s old classmates, all sat in the front row. It is always tough to see Jamie’s old friends, as I always think how he should be there with them.
It was finally Charlie’s scene/part, and he was ushered onto the stage, with a few other friends dressed in various animal costumes; dinosaur, cats, tiger – he wandered around the stage, not really singing, and playing with his shadows on the back wall.. had a chat with Mary and Joseph, before the audience clapped, and he turned and noticed the hall full of people!!! He wasn’t fazed, and turned his back on us all again, and started playing with his hood, watching his shadow, as all his friends left the stage, leaving him alone, doing a solo!!!!
A short time passed with Charlie stood alone on the stage, before a teacher came up and tried to usher him off… he wouldn’t budge, so she attempted a gentle push, to which Charlie took the sit down protest!!!!
Finally Charlie was carried off, struggling, under the teacher’s arms!!!! Screaming, shouting, crying and generally protesting – which carried on into the next scene.
This was my Cue to stand up and collect him to take him out!!!!
On the next day’s performance Charlie didn’t want to do it at all!! His grandparents had come to watch, and we all ended up turning around and going home!!!! Bless him!
Charlie has turned into a funny character – just this weekend he was at an aunt and uncle’s house, when he came into their lounge holding a broken Christmas tree ornament – a small present. My uncle said to Charlie, “take it to auntie – and what do you say???” expecting an apology...
Charlie held the little tree ornament present that he’d broken out in his hand to auntie, and said, “Merry Christmas”!!!!!!!!!!!!!!!
Charlie and Amy get on really well these days... Amy worships Charlie, and Charlie is very sweet to her, and they play quite nicely, as long as Amy doesn’t touch Charlie’s toys – or any that Charlie considers to be his too!!!
Amy is fully weaned onto solid foods, 3 meals per day, and has broken her 1st tooth!!!
During the past 2 weeks Amy has started sitting unaided, and crawling backwards. She will master forwards shortly I’m sure.
I just can’t believe how fast these 6 months have gone past!
Jamie’s story has recently been featured in Steve Holbrook’s 3rd Book “Survival”. This was because we’ve been to see Steve quite a few times, and have had quite a few messages. You can buy Steve Holbrook’s book at http://www.steveholbrook.co.uk/2a.htm
Steve Holbrook is a Clairvoyant/Medium – I would recommend him to anyone who has lost a loved one.
Also – some good news – Jamie’s friend Jack is in remission following his last course of chemo. We got the news that there is about 5f disease left, and it looks like there is even less disease there than that – in fact he is in a better state of remission than last time round!
Of course we are all pleased – but more shocked, as I wasn’t expecting the good new this quickly – and was in tears when I read the email update from his family.
I have almost finished the new design for Beebo.info – and hope to be launching it this weekend (fingers crossed). It will be concentrating on the Warriors and hopefully be a gateway for newly diagnosed parents to see other kids in various stages of treatment and NED. I also hope in the future to set up a buddy scheme to introduce families to other families in their area, or as close as possible. But for now I will be gradually changing/upgrading the site as it is.
When the new site is launched it will be basic and bare with just a few other areas, which I will build up gradually – it’s a matter of having time, which I will have more of after Christmas (I’m fighting a giant ironing pile also!!!)
The links section will be smaller, with just Cancer type links, and some bereavement stuff.
On a bad note… some sick people have recently been putting porn site links in Jamie’s guestbook. I managed to delete them, but they were there for a few days before someone let me know they were there... I have no way of tracing which sick person did this – they have been attacking other children’s pages also, so I’m not alone. We won’t let these sickos think they’ve accomplished anything; I can easily delete what they put so their efforts are a waste of time!
I hope everyone is looking forward to Christmas this year!!! If it wasn’t for Charlie’s enthusiasm we’d try and bypass it (Bah-Humbug!!) Too much commercialism!!!
This year Charlie is very excited, and has been choosing what he wants from various catalogues – he has taken some catalogues to bed!!! This wouldn’t be so bad but he then brought them into our bed when he came into us halfway through the night!!!!
I waited till this Friday before putting up the tree and decks, as Charlie can’t understand how far away Christmas is yet... so far he’s only unwrapped one present that I left under the tree!! Naughty!!
Someone gave us a train set to go around the tree, so we finally got it out this yea, and it plays Christmas music as it goes round… we also have a singing fluffy dog, dancing reindeer, chirping bird, and Santa’s workshop with music, which Charlie lines up and switches them all on!!! GREAT!!!
I’m sure that Amy will start crawling very soon, and head straight for the tree, which she will pull down!!!! I will have camera on standby!!!
Jamie has his own tree at the cemetery again this year, along with a ceramic Christmas train flower arrangement from Nana, and a Christmas-y arrangement from close friends – his is the best Christmas-y grave this year so-far.
His headstone is not yet up – we are waiting for it to be made still!!! It will hopefully be worth the wait!
Please cross fingers and pray for Megan – who has been admitted to hospital with back pain http://www3.caringbridge.org/vt/megan/
Please check out http://www.postpals.co.uk/ and put a smile on a child’s face this Christmas – It is run by some great people, who aren’t 100ell themselves to provide children in hospital with cards and gifts to make their lives a little better. Jamie was one of their first recipients, and his mate Jack has recently been added to their site.
Have a good Christmas everyone – I hope to update in the new year – you know me!!
Love Kelly
xxxxxxxxxx
Monday, October 2, 2006
Tada!!!!
I meant to update last week when I uploaded the new photos but have been too busy – then I figured, “Hell I’m always busy!” So I better slip in an update before its Christmas!!!!
We are all fine; Charlie started going to Nursery School at Jamie’s old school OLSP nearby. He attends on Tuesday, Wednesday, and Thursday afternoons then on Monday and Friday attends his old Nursery for 2 ½ hours each day.
Everyone has noticed a great change in Charlie since Amy was born, then again when he started Nursery School – he seems calmer and more settled, and co-operates and joins in more.
His hair has grown quite long now, and he looks quite cute, although I need to trim it somehow!!
Charlie is taking more notice of Amy these days and will talk and play with her. Just yesterday he agreed to sit with Amy on his lap for a photo!!!! (I will try and upload them soon)
The Speech Therapist has been visiting to observe Charlie and his speech is improving, although he’s not making full sentences yet, but will be there soon. He can count to 10, knows his colours and shapes, and is a whiz on the flash cards.
Charlie is being referred to Torbay’s John Parkes Unit for assessment of speech, hearing, behaviour and diet to out rule problems like Autism and ADHD and to help Charlie before he starts school.
Amy is fantastic, such a cherub, still happy, always smiling, and laughs a lot. She is still sleeping well through the night, and I am still breastfeeding her, which I intend to keep up until she starts weaning – I’m dying to have a good drink!!!!
Dave is still working at Toshiba Call Centre doing Laptop support – he and Lee hope to go into business together doing Computers, Networking, Audio, Visual sort of stuff. But Dave’s intending to stay where he is until there is enough work for him too.
Just before the end of August we went to Dartmouth Regatta.
Charlie had a great day, playing with the other children, and swimming in the pool with Dave, and went on loads of fairground rides.
Whilst there we watched a Red Arrows Display which they’d dedicated to Jamie. It was announced over the Tannoy, as we were waiting for our ferry back to Kingswear. My Mum and Dad were with us, along with family friends, all watching the Aerobatic display from the ferry on river Dart, it was an emotional moment.
On 1st September Dave’s sister got married, and Dave gave her away. It was a beautiful day, and the weather stayed nice, which was a bonus.
We had some bad news a couple of weeks ago – Jamie’s friend from Bristol Hospital, Jack, who had leukaemia, has relapsed after 2 years in remission.
Jamie met Jack in Bristol Children’s Hospital around October 2003. They hit it off from the start.
After Jamie had his tumour surgery in November 2003 he was very low and feeling sick a lot of the time with disrupted digestive system, and had to be fed via TPN, as he couldn’t keep food down despite trying nasal gastric feeds.
By Christmas Jamie was still low, and slept a lot. On Christmas day he didn’t even have much energy or desire to open his Christmas presents. That day Jack was admitted with a high temperature and put in the next door bed of the communal ward with Jamie. All of a sudden Jamie perked up and even got out of bed to play pirate ships with Jack, on a blanket on the ward floor. It was the first time in days that Jamie had smiled and played.
We stayed in touch and saw lots of Jack and his family throughout Jamie’s treatment, becoming close – they attended Jamie’s funeral, Jack and his brother wore fancy dress as requested.
This weekend we went up to Bristol to donate Jamie’s battery powered ride-in car toy to Hop Skip and Jump (http://www.hopskipandjump.org.uk) A special place for children and their families with life limiting and life threatening illnesses, or any special needs. Charlie refuses to use it and its collecting dust so we wanted some other children to enjoy it.
While in Bristol we visited Jack and family in hospital. Jack is receiving antibiotics for a bug, and chemo to hopefully get him into remission again, for another bone marrow transplant.
I was worried it would be upsetting returning to the hospital and ward where Jamie received a lot of his treatment, but once there I was fine – I suppose being there to see and give support to a friend helped take my mind off it.
This past month has been hard, since Jamie’s anniversary of becoming an Angel – I can’t believe it’s been a whole year since we lost the fight and lost the light of our lives.
It’s been hard to take Charlie to school everyday, and even harder when it’s time to collect him, and having to walk past all the parents of Jamie’s school mates, waiting for their children, who all remember me as “Jamie’s Mum”.
I used to stand at the bottom of the steep school driveway while the teacher would let the children come down one at a time, as their parents were spotted.
I would remind Jamie not to run as he trotted smiling down the hill, and I’d lift him over the railings…. The memory is still fresh in my mind every time I walk past that spot.
I get paranoid that parents are pointing me out to each other and whispering about me – not that they’d be saying bad things, just that they are acknowledging Jamie, and it feels weird to think people are pitying me, or watching how I’m coping – I guess I’m just weird myself!!!
I’m glad that the parents of Jamie’s friends still talk to me and say hello – it’s nice to see the friendly faces, and gives me extra support to pick Charlie up without an emotional breakdown.
The school received an anonymous donation of £1000 in honour of Jamie, and have spent it on play equipment – Hopefully I will be brave enough soon to go and see it, but at present I am scared that I will be emotional, so will wait till I’m a bit stronger.
It goes without saying that I think about Jamie every day, and often dream that he’s with us again. I get upset when I have to wake up from a Jamie dream – like losing him again, and facing reality that he’s gone forever.
I’m lucky to have Charlie and Amy to give my life purpose, and help me through each day without Jamie.
When Jamie was a baby we had a strong bond, and Jamie went everywhere with me, I called him my buddy – he was a much wanted baby, we’d tried for months before I became pregnant. And when he came along we were so happy, he was such a good baby, always so happy, and content. Then grew into a beautiful little boy. He didn’t deserve what he went through. Life is so unfair, it sucks.
Sometimes I wonder if Jamie’s cancer was a punishment to me for being greedy and having another child, Charlie. As if Jamie was too special not to be an only child.
Silly I know.
This past month we lost more precious children to Neuroblastoma; Christi Thomas, Jaret Cerino, Erin, and Kaitlin Richmond.
I am currently learning how to use Dreamweaver software for building websites, and will be revamping Beebo.info gradually, starting with the Warrior pages.
All those who have requested to add children to the site, or informed me of a change in circumstance for their warriors, please bear with me, I will be updating that section within the next month.
Thank you to those who have been signing the guestbook, and sending emails of support. They don’t go unnoticed, I appreciate them and it’s comforting to know people care
Love Kelly
xxxxxxxxxx
Friday, August 18, 2006
A long awaited update!!
Wow 2 months have passed so quickly!!
All is great, Charlie and Amy are very well, growing great and staying healthy!!
I think I just passed Groundhog Day… I was scared to pass the period where Amy was 5/6 weeks, worried that this time Charlie would become poorly like Jamie did when Charlie was 5/6 weeks... but we made it, and I’m cautiously breathing a sigh of releif.
Everyday I thank Jamie for sending us Amy, she is truly a gift from heaven, still sleeping and smiling all day long. She already laughs and giggles, and has a wicked sense of humour.
Since the last update it’s been like a rollercoaster – I don’t know where to start….
I haven’t had Amy weighed for a few weeks, she’s due to be weighed on Monday, but was about 10lb 11oz on 25th July, and has sailed along her 75th centile, for those who understand centiles!!!
Charlie ignores Amy, except first thing in the morning, when he comes into our bedroom and points out to us that there’s a baby in the crib next to our bed!!!
He’s started wanting to push the pram when we’re out, and likes to pour water on her in the bath. Other than that he wont touch or talk to her at all, which I guess isn’t such a bad thing… I don’t have to worry about aggression when I’m out of the room.
In a couple of weeks Charlie starts nursery school, at OLSP School where Jamie went. We’ve been for a visit, and Charlie seemed to like it. He will attend for 3 afternoons there, and attend a whole day at his current nursery. I have left Fridays free for us to do stuff and have quality time.
Charlie’s speech is coming on, although he still needs a translator at times. He is putting sentences together, and lately been watching Baby Bright videos and has learnt his colours and shapes.
We go down to the seafront play park nearly everyday, where Charlie beats up little girls and chases seagulls!!!! It’s a wonderful play park, with a water play feature, and is always buzzing with loads of kids.
We like to have an ice-cream in the pier, and I feel so lucky to live at the seaside, where people pay to come here for holidays, and we can enjoy it everyday!!
I like to think Jamie comes with us, to the park, and on our fun outings, and miss him like mad... I often watch Charlie playing, and imagine Jamie with us too, half hoping he’ll run up and I’ve been dreaming... This still feels like a bad dream, and I keep hoping I’ll wake up tomorrow and Jamie will still be here.
At the end of this month Jamie would have been gone a whole year – and it only feels like a couple of weeks. It’s hard to feel happy when everyday I am thinking about Jamie and missing him.
We have been designing Jamie’s headstone, which should be finished soon, and we hope it will he in the cemetery by Christmas.
Tonight I watched Big Brother final. I was glad Pete won, but wanted Glynn to win more. Not being funny, but what’s so great about Pete? Just because he has Tourettes, aren’t people shallow!! Yes he is a smashing bloke, and very funny, but Glynn was the most entertaining housemate by far...
Amy was baptised on July 22nd, by Father John at Our Lady & St Patrick’s Church, I have updated the photos, and hope to get Amy her own page on the main site, in the About Me section.
Could people send me their photos from Amy’s Baptism? Mine came out blurred, and I’ve been begging photos from guests!!! Also, if you have any good photos of Jamie or Charlie, please share them with me...
I am trying to get the Warriors section update finished – we have lost some Neuroblastoma Warriors; Nick Snow, Benny Petz, Laura Sypek, Kraleigh Grace Burnett, Breanna Lee Bartelli & Courtney Davis – They always go in threes.
We also have a few NEDs and sadly a few relapses. Please bear with me, once Charlie starts nursery school the plan is to try and catch up on everything.
I will update again next month, when Charlie has started nursery school.
Love Kelly
xxxxxxxxxx
Sorry for lack of update... I've been in a bubble for the past week plus, with my beautiful Angel Amy Grace
She is the most precious adorable thing in the whole world
All she does is sleep and eat and smile - yes she smiles already!!! And chuckles!!! I have photos to prove it
Amy has the characteristics of Jamie as a baby, and looks a cross between Jamie and Charlie
And the best bit is that she already sleeps through the night, and has done since day 2! What a genius child!!
The labour was harder and longer than it was for Jamie and Charlie - 8 hours - and I requested an epidural and got out of the birthing pool when things got too rough!!!
Once I had the epidural things were peachy, and slowed down, so we waited and Dave even popped out for a bite - which was typical, as suddenly Amy's head was crowning and I was ready to push - despite not feeling a thing!! We had to wait for Dave to come back, and then Amy arrived.
I needed to go to theatre to have the placenta removed, and lost loads of blood, so needed to stay in an extra night for a blood transfusion - 2 units, it felt weird sat having blood, and made me think about Jamie a lot
I've done a lot of crying - happiness, sadness, a mix - and thought about Jamie endlessly, as this baby, the gift from Jamie/Heaven/wherever truly is a gift - she's soooooo perfect in every way, so good, no trouble - except the sore nipples, tiredness, Carpal tunnel that's worsened, crappy hips, swollen ankles, heat rash - but hey, that's life, and worth every bit for Amy
And Charlie's been great, like he's had a personality overhaul- he's less aggressive, calmer, better behaved, talking loads, is a pleasure, and showing zero signs of jealousy so far (touch wood) - I've tried my hardest not to alter his routine, and to make sure he gets lots of attention, and get him out to the park or somewhere everyday like normal, as he is craving to play with other children at present
On Monday the health visitor is coming to weigh Amy - she was 7ib 14oz at birth 14/06/06 then weighed 7ib 6oz on 16/06/06 then went up to 7ib 15oz on 19/06/06!!!!
She's breastfeeding well, every 2 1/2 to 3 hours during the day, then has her last feed around 11pm/12 and goes through till 5.30/6am!!!
Charlie and I get up for breakfast around 8/8.30am, and then I have to wake Amy up around 9.30/10am!!! She's so content and laid back - only cries when she's hungry, and even then can be pacified, and sometimes goes back to sleep, as if to say, "fine, I'll go back to sleep then!"
I'm just about to put some more photos together onto photos section - which will be ready soon
Thanks to everyone who has sent gifts and cards and signed the guestbook
Love Kelly
Xxxxxxxxxx
www.beebo.info
Sunday, June 11, 2006
Thought I’d better update for all those desperate to find out if the baby has arrived yet…….
No, despite what the baby ticker above says, baby still not here. I am 7 days overdue today!!!! On Thursday I had a membrane sweep to no avail!
I am booked into be induced on Wednesday, so one way or other baby will be here by mext weekend.. promise!!!
Yesterday was Charlie’s 3rd birthday… he had a great days, and I’ve added photos of his day to the photos page. He got lots of great presents; Power Rangers Robots, Wooden Garage, Hot Wheels Playset, Tent with Tunnel, Bubbles, Knex, Videos…
Today was Race for Life; Nicole took part in honour of Jamie - http://www.caringbridge.org/europe/nicole/
Dave is doing well in his new job, and enjoying being part of the real world again.
I will update with photos when baby finally arrives
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Friday, May 19, 2006
Sorry for lack of update for so long, my mind's been a mess with the pregnancy, and I have forever been sidetracked when I sat down to update!!
My Carpal Tunnel returned to the left hand, where I got my 1st steroid injection in December, and left me in agony, with numbness and pins and needles, unable to do the simplest of tasks like eat with a knife and fork!!!
Luckily I managed to persuade my Doctor to give me another steroid injection, which will hopefully last till I have the baby, when it will disappear.
I am now at the end of week 37 of the pregnancy, according to my ultrasound scan dates, which makes me due on 4th June.
My own dates make me due 26th May, and then I had another due date of 17th May, given to me by Jamie, via Steve Holbrook - http://www.steveholbrook.co.uk
No sign of baby yet!!!! I wish she'd hurry up!! Most of her movements cause me discomfort and pain now, and she alternates between lying transverse and head down!
We have everything prepared and ready for her arrival, and just feel exhausted and can't wait for this pregnancy to be over!!! I have not enjoyed it one bit.
Plus my hip/pelvis pain is worsening, and I find it almost impossible to walk at times, and getting in and out of bed is tricky... I feel like an old man, all stiff and immobile!
Double plus!!! My legs and feet started to swell on last month! I got my blood pressure check in case of pre-eclampsia, but it was normal, so it's just blasted oedema! I went out and bought some new shoes, the next size up, as none of mine fit!
Great news…. Dave started employment last week for Toshiba, doing telephone IT support for their Laptops. He catches the train to Exeter every day, and has been in training so far, until he starts on shift work 37.5 hours per week…
So we are no longer Dole Bums and actually a valuable part of society again!!!!
Of course I am still a housewife, with Charlie not yet at school and baby on way, but intend to do some part time work in the future.
Charlie - where do I start!!!
He is doing very well, behaviour has improved, and he has starting talking... it's not 100% understandable, but it's a start, and he is making great progress. At nursery they are introducing him into the 3-4 year olds room, for preparation of his 3rd Birthday on 10th June.
Charlie is well at present, although he has been unwell on and off for the past few weeks, with colds, coughs, fevers, tummy bugs... I was starting to get worried that history was repeating itself, and that we were in Groundhog Day!
I stopped speech therapy until recently, after deciding I didn't like the speech therapist pushing Charlie's buttons, and that he needed a break from scrutiny
We have stopped his TV and videos being on all day, he just has a couple of hours a day, and his speech is improving slowly but surely.
Life with Charlie keeps me on my toes, but luckily he is in a routine now, and I know more how to handle his ways and moods, so we rarely have problems.
I restarted his Speech Therapy. The Lady came to the house on Monday, and was pleasantly surprised to see a huge change and improvement in Charlie, and said she just wants to see him on an observational basis in a month's time.
I spoke to the Health Visitor about potty training Charlie and was advised not to rush him, especially before baby is due, it may upset him, and he will have plenty of time to do it at his own pace in the summer.
I have put some more photos of him on the Photo's page, as he's been funny lately!!
I intend to try and update the Warrior and Angel section of Beebo.info as soon as possible... I haven't touched it for ages, and unfortunately we have lost quite a few Warriors, although one wasn't lost to Neuroblastoma, Nick Snow, sadly passed away after surgery for a perforated bowel
I thought I'd do a special Birthday Update for Jamie... and then I never got round to uploading it!!!!!
So here it is below:
Sunday 16th April 2006
Yesterday was Jamie's 6th Birthday...15th April - The first birthday spent in Heaven, and I hope he had a good day
Happy Birthday Baby
XXXXXXXXXXXXXXXXXXX
To mark the occasion we did a balloon release in the back garden after his birth time 16.27.
Charlie had a Scooby Doo balloon, Daddy a Darth Vader Balloon, we did a Jess from Toy Story Balloon from the bump, and I did 6 character/Disney balloons; Incredibles, jungle book, peter pan, Nemo, power rangers, and a valentine type balloon that read "I will always Love You.
9 in total!!!!
I also put a display of flowers on his grave, along with the other tributes from family.
Elsewhere.... in Taunton the Somerset Bikers did a balloon release in honour of Jamie, and an Easter Egg Hunt/Rally on motorbike, with proceeds going to Daydreams
Jamie's friends from Exeter Army/Navy Careers did a balloon release in Basra!!! Photos to follow...
We had a quiet day; my parents took Charlie out for the day to Rainbow Funhouse, where they take him on alternate Saturdays. This was where Jamie had his birthday party last year, which was the last time he ever went. I haven't managed to bring myself to go there yet.
The night before Jamie's birthday I went through his trunk of memories, cards, artwork, baby clothes etc... I read his nursery diary from Happy Days Nursery, which was funny!! The last entry was on 29th may 2003, just before he went to Ibiza, with nana and granddad, then he started being unwell and didn't attend nursery again.
I have put a photo of Jamie's grave, with flowers and gifts, from yesterday, along with some photos taken from his birthday last year 2005.
Friday, March 10, 2006
Can't believe a month has passed since the last update!!
I am still a NON-SMOKER!!!!!!! It's been ok, I've been tempted a few times, and only actually had 1 puff a few weeks back, on a night out, just to remind myself how awful it is!!!
I have stopped using the patches after I seemed to develop an allergy to them, and my skin was red and itchy where I wore the patch, which lasted for a few days after it was removed!!
I also became extremely cranky for a week and a half, which I put down to pregnancy and nicotine withdrawal, but since stopping the patches feel much better!!
Charlie had a speech therapy appointment at the local Hospital, which was a total failure!!
I explained to the therapist, over Charlie's protests, that he isn't good in these environments, and then encouraged Charlie to calm down, with his Scooby Doo book, and dinosaur.
Charlie calmed and was ready to co-operate, but the speech therapist said to ignore him for a while and talk about his history and my concerns.
After 10 minutes of being ignored Charlie understandably got wound up and started to perform and scream, and finally the appointment had to be abandoned and the therapist agreed to come to the house for the next appointment where I promised she'd see a better Charlie.
Afterwards I couldn't help thinking how she'd aggravated the situation, and seemed to take pleasure in upsetting and fuelling Charlie's moods.
Yes Charlie still has long hair, but is more of a mullet than just overgrown, thanks to my amateur trimming, and lack of hairdresser brave enough to step forward for the challenge! We think it suits him, and intend on keeping it long.
The bump has grown, and I'm well and truly out of my regular clothes!!! I'm getting a lot of kicks, which is supposed to be good (for whom??!!)
Sleeping has become a challenge, mostly the dropping off part, and I find myself lying awake for hours!
Next week I have a Midwife appointment... the 1st time I've seen her since week 15!! As you have more kids you get to see your midwife less apparently!
On Monday I have to go to the hospital to be tested for Gestational Diabetes, due to it being in the family, news regs say I need testing.
On 20th and 23rd March we see Steve Holbrook, for our next message from Jamie... although Jamie has been around; I've lost 2 lamps in the house where he's popped the bulb and actually taken the lamp/light with it!!
We need to get in touch with the Stone Mason to get Jamie's headstone organised and designed... I spoke with them back in July last year and haven't heard back from them since.
We are still on the hunt for the photographer who came to our house last June/July and took a family photo of us, before Jamie passed away... this photographer never left contact details and hasn't got in touch... Jamie's Nana phoned someone in Bishopsteignton who we were sure did it, but he denied it!!! So we're left with no photos of us as a family... I was willing to pay, but the photographer insisted I didn't... I think I might put out a newspaper appeal locally.
We suspect the photographer wasn't happy with the photos he did, when really anything would have done under the circumstances, either that or he lost them and couldn't be straight with us...
Either way, I can't rest until I know.
I won’t be updating regularly from now on... just when there is news/events, which will be updated on Jamie's main Beebo page/ Home page.
I feel it unfair to hijack Jamie's Journey Journal with our lives now Jamie has passed away.
I have a vast array of photos of Jamie and his brother Charlie at
www.flickr.com/photos/rendalls
This will be updated with new pics regularly as possible, and will include photos of the new addition when she arrives in 12 weeks
Love Kelly
XXXXXXXXXX
www.beebo.info
Friday, March 10, 2006
Can't believe a month has passed since the last update!!
I am still a NON-SMOKER!!!!!!! It's been ok, I've been tempted a few times, and only actually had 1 puff a few weeks back, on a night out, just to remind myself how awful it is!!!
I have stopped using the patches after I seemed to develop an allergy to them, and my skin was red and itchy where I wore the patch, which lasted for a few days after it was removed!!
I also became extremely cranky for a week and a half, which I put down to pregnancy and nicotine withdrawal, but since stopping the patches feel much better!!
Charlie had a speech therapy appointment at the local Hospital, which was a total failure!!
I explained to the therapist, over Charlie's protests, that he isn't good in these environments, and then encouraged Charlie to calm down, with his Scooby Doo book, and dinosaur.
Charlie calmed and was ready to co-operate, but the speech therapist said to ignore him for a while and talk about his history and my concerns.
After 10 minutes of being ignored Charlie understandably got wound up and started to perform and scream, and finally the appointment had to be abandoned and the therapist agreed to come to the house for the next appointment where I promised she'd see a better Charlie.
Afterwards I couldn't help thinking how she'd aggravated the situation, and seemed to take pleasure in upsetting and fuelling Charlie's moods.
Yes Charlie still has long hair, but is more of a mullet than just overgrown, thanks to my amateur trimming, and lack of hairdresser brave enough to step forward for the challenge! We think it suits him, and intend on keeping it long.
The bump has grown, and I'm well and truly out of my regular clothes!!! I'm getting a lot of kicks, which is supposed to be good (for whom??!!)
Sleeping has become a challenge, mostly the dropping off part, and I find myself lying awake for hours!
Next week I have a Midwife appointment... the 1st time I've seen her since week 15!! As you have more kids you get to see your midwife less apparently!
On Monday I have to go to the hospital to be tested for Gestational Diabetes, due to it being in the family, news regs say I need testing.
On 20th and 23rd March we see Steve Holbrook, for our next message from Jamie... although Jamie has been around; I've lost 2 lamps in the house where he's popped the bulb and actually taken the lamp/light with it!!
We need to get in touch with the Stone Mason to get Jamie's headstone organised and designed... I spoke with them back in July last year and haven't heard back from them since.
We are still on the hunt for the photographer who came to our house last June/July and took a family photo of us, before Jamie passed away... this photographer never left contact details and hasn't got in touch... Jamie's Nana phoned someone in Bishopsteignton who we were sure did it, but he denied it!!! So we're left with no photos of us as a family... I was willing to pay, but the photographer insisted I didn't... I think I might put out a newspaper appeal locally.
We suspect the photographer wasn't happy with the photos he did, when really anything would have done under the circumstances, either that or he lost them and couldn't be straight with us...
Either way, I can't rest until I know.
I won’t be updating regularly from now on... just when there is news/events, which will be updated on Jamie's main Beebo page/ Home page.
I feel it unfair to hijack Jamie's Journey Journal with our lives now Jamie has passed away.
I have a vast array of photos of Jamie and his brother Charlie at
This will be updated with new pics regularly as possible, and will include photos of the new addition when she arrives in 12 weeks
Love Kelly
XXXXXXXXXX
www.beebo.info
Sunday, February 5, 2006
I've reached 8 days as a non-smoker!!!!!!
The longest I've ever achieved!!
My mother-in-law took me out on Saturday to treat me to a "well-done" shopping spree in Torquay.
I managed to trim Charlie's hair today, just at the front, and on top, which was a great achievement!!!
Charlie didn't think so, he screamed and cried, as I snipped away, and was most traumatised by the whole thing!!
I will tackle the back and sides over the next few days, softly softly!!!!
We are still keeping the length, just unscruffying it!
Charlie's speech therapy appointment has come through for next week, but it's at the hospital rather than at home. I very much doubt that Charlie will co-operate in a hospital/clinic environment, after seeing his reaction at the Dr surgery, and with me at the midwife appointment, he hates it!
I'm still in my regular clothes, wearing skirts under the bump, but have started wearing maternity tops.
So far I'm still managing not to over-eat, and have not had any major problems...
The heartburn has come back this week, and I've had some pain/aching/cramp discomfort in my pelvis and top of legs which the midwife thought may be due to stretched or stretching muscles or a water infection (test sent off to lab)
I've started to struggle getting out of bed... we bought a low bed from Ikea in the new year, and didn't contemplate me being able to get in and out in my pregnant state!!
I sleep with a pillow under my legs, which makes it harder for me, having to crawl over the pillow to the end of the bed... maybe if I wasn't on the wall side it might be easier!?
My collection of girl's baby clothes is still growing!!! I have bought some traditional smocked dresses, and have been given some much needed practical items from my sister-in-law, who has recently had a girl also.
Tonight I constructed the babies changing unit and bedside cot, all by myself. I needed to make sure that all the parts were in the box before it was too late!!
Charlie tried to help, and was more of a hindrance most of the time, picking up my nuts and bolts, loosing the allen key, and climbing all over as I was trying to tighten bolts!! He did actually slot one piece in for me, after watching me do another side, and was spot-on!!!
Tomorrow we are off to Bristol to visit our friends that we met while Jamie was ill. Their son, Jack, and Jamie became close friends.
We'll also pop into Ikea and get a mattress pad for our bed, as our bed isn't as soft as we'd liked!
Happy Birthday MUM!!!!! I won’t reveal your age!!!
Thank you to Kate at Radio Lollipop, for getting in touch
Love to all
Kelly
XXXXX
Thursday, January 26, 2006
We're all fine - life is as good as it can be - no complaints!!
My mum's been shopping, and brings a new bag of baby girl clothes on each visit, which is great, my collection is growing - I'll need a wardrobe for it all soon!! We've chosen some from the Argos catalogue, similar to the ones the boys had, but with pink fronts instead of blue.
Let’s hope they weren't wrong at the scan!
Charlie's being referred for speech therapy. The health visitor has been visiting periodically since shortly after Jamie passed away, to catch up on Charlie's development checks.
She was concerned a while ago, that Charlie isn't talking much sense, just the odd word, and babbling, and asked if I would like speech therapy for him. I said back then to wait and see, and he has improved a bit in the past 2 months or so; he now says, "Shut-up-up" very clearly!!!
Charlie has quite a good vocabulary; Juice, Milk, Dinosaur, Monster, Ghost, Money, Sweets, Chips, Snowman, Mickey Mouse, Mouse, Wowo, Boat, Train, Crane come to mind.. Oh yes, and Scooby Doo!!!!
A lot of Charlie's sentences have Scooby Doo in them!!
Charlie knows please and thank you... when asked, "What do you say?" he says, "Say"!!!!!!!!!! But will then say, "Please" and whispers his "Thank-you"!!
He says short sentences, like where's he gone, he ran away, upstairs but not as much as he should, and it's only understood by me and Dave mostly!!
I'm not overly concerned, kids develop at different speeds, and this won’t scar him for life!!
I've also had a lot of comments regarding Charlie's hair, that it needs a cut!!! We actually like Charlie's hair long, it's cute, but agree it could do with a trim to thin and tidy it!
We present this challenge now, if anyone can cut his hair, we will reward greatly!!!!
Charlie is spirited!! I can manage to get a comb through his hair with a lot of fuss from Charlie; washing his hair is a whole different story!! He hates being washed, and can't stand water on his head... bath time turns into a noisy screaming affair when it's hair wash day!
If it was Charlie who was ill, he would never have coped as well as Jamie did... When Charlie went to the doctor's last, he made a big fuss when the doctor tried to listen to his back with a stethoscope!!
Funnily enough, Charlie is a very affectionate, cuddly child. He just doesn't like being fussed with!
My bump is growing steadily, but I've managed to stay in my regular clothes so far. I wear the odd maternity top, but have been lucky and been able to get into my regular clothes still.
It helps that I've actually gone down a clothes size, since becoming pregnant. I cut out my Chocolate and Coca Cola, which has made a great difference.
We eat quite healthily; home cooked stuff, fresh meat and veg, which is good.
I felt my first flutter of movement from the baby after my last update, which has grown to definite kicks.
I started Yoga this week, and found that I'm not as supple as I was!!!! While we were doing our lying down relaxation at the end of the class, baby was moving around and kicking like mad!!!
I have no trouble waking up in the mornings these days; my bladder wakes me; thanks to the baby!!! I won’t miss that part of being pregnant!!!
No cravings, as such yet... I've been preferring cheese and milk a lot. I didn't really have cravings with either of the boys’ pregnancies.
Tomorrow I have an appointment with the Doctor, to be prescribed aids to assist me to stop smoking.
I smoked throughout my other 2 pregnancies, and until Jamie became ill, thought it didn't have any affects.
We were assured at Jamie's diagnosis, that my smoking had nothing to do with his Cancer, but it made me realise how delicate life can be. And Charlie has shown mild symptoms of Asthma, that we saw in one of his cousins also, who now has asthma, so I thought enough is enough.
When I discovered I was pregnant, I cut down, and halfed my smoking. I bought Paul McKenna, and had a couple of tries to give up, but have been finding it difficult to stay stopped, so have sought help.
The Maternity smoking lady came to visit me this week, and I took a Carbon Monoxide test, to test the amount of the gas in my lungs after a cigarette... I was surprised it showed up low, as a light smoker! So that's promising.
I am determined to do it this time, and with some aids like patches or something I have a extra 50 hance of succeeding, so wish me luck..
The way I look at it... when I discovered I was pregnant I stopped my Anti-Depressents cold turkey, and my contraceptive pill which wasn't much help, and I have coped well without the chemicals and hormones from the drugs despite greiving and the stress we've had, so if I can survive without them, I can survive without cigarettes.
I have felt annoyed when people have commented on my smoking when pregnant, like they've forgotten what I'm going through, some people just don't think... or do they think I should be over it all by now, or have they just forgotten Jamie?
I've given up a lot since August; Chocolate, Coca Cola, Anti-Depressants, Jamie....
Up until now I have felt that I needed to smoke, it was my only crutch left... lately I've felt a new calm, and been able to contemplate ridding myself of the last crutch
A fellow parent of an Angel Neuroblastoma Warrior has sent me a copy of his book, about his son's journey. It's called, “Ya Can’t Let Cancer Ruin Your Day – The James Emails,” by Syd Birrell.
This little boy was 8 years old, and his dad kept the family informed of his progress by email, which he saved and are all in this book.
I have started reading it, and it's great, I highly recommend it. There isn't lots of medical jargon; it's in layman’s terms....
It's available through http://www.greentrainbooks.com and http://www.chapters.indigo.ca
You can visit James's website at http://www.jamesbirrell.ca
I'd like to wish Happy Birthday to Mrs H and Auntie Sarah this week, and also thank Billie and family for the card and gorgeous photo, which I will frame.
Also; Thanks to Annabel, I got the card, it was very touching. We're glad you're well and back to work, we missed you... Thanks for remembering Jamie, I hope you will smile and think about him whenever you have a cup of tea in your special mug.
Call out for "Kate" from Radio Lollipop, Bristol... can you email me with contact details? We'd love to accept your offer of help for Daydreams with CBBC; we just can't get hold of you!!!
This was going to be a short update!!!!!
Love to all
Kelly
XXXXX
www.beebo.info
Monday, January 16, 2006
The news you've all been waiting for!!!! Sorry to leave you in suspense... it's been a madhouse, and I've just sat down after spending over 2 hours trying to settle Charlie, who was knackered but wouldn't switch off!!!! Well...... It's a GIRL!!!!!! I also have a placenta posterior - not low... if anyone can tell me what that means... all they said was that it's rare... I'm so happy - I can't remember the last occasion I felt so happy. I almost feel guilty for feeling so happy, so soon after Jamie's passing! My mum was thrilled; we went and bought some girlie clothes and shoes for the baby... watch out, the shopping will commence now!!!! I have posted scan photos on the photo's page Also.. cousin Harry has a new baby sister, born Friday 13th, weighing 6lb 3oz - Molly Ann - family may email me privately to see photos Love Kelly XXXXXX
Monday, January 16, 2006
The news you've all been waiting for!!!! Sorry to leave you in suspense... it's been a madhouse, and I've just sat down after spending over 2 hours trying to settle Charlie, who was knackered but wouldn't switch off!!!! Well...... It's a GIRL!!!!!! I also have a placenta posterior - not low... if anyone can tell me what that means... all they said was that it's rare... I'm so happy - I can't remember the last occasion I felt so happy. I almost feel guilty for feeling so happy, so soon after Jamie's passing! My mum was thrilled; we went and bought some girlie clothes and shoes for the baby... watch out, the shopping will commence now!!!! I have posted scan photos on the photo's page Also.. cousin Harry has a new baby sister, born Friday 13th, weighing 6lb 3oz - Molly Ann - family may email me privately to see photos Love Kelly XXXXXX
Thursday, January 12, 2006
I’m still here - just!!!
I intended to update a few times, but got side-tracked or ran out of time!!! Just after Christmas I got as far as changing the photos, and then something always drags me away!!!!!
We had a quiet Christmas, as planned, just Dave, Charlie, myself and Frodo…. And Budgies and Fish!!!!
I struggled to put up decorations, as when I got the box down from the loft, I found lots of memories of last Christmas; the paper chains Jamie and I had made, cards he’d been given, a Santa with recordable message from Jamie. The box sat in the lounge for over a week, and I finally decided to get on and decorate for Jamie a week before Christmas.
I bought all new ornaments, all Angels, Cherubs and Fairies, and put a Gold Star on top of the tree, it was beautiful. The bonus was that Charlie didn’t Bosche it, although I did nearly knock it down myself twice, whilst hovering!!!!
Thank you to all those who sent Christmas Cards, I received loads from my Neuroblastoma family, and some nice Photo Christmas Cards.
I didn’t manage to send any cards out this year, sorry. I did try, but after nearly writing Jamie’s name, it proved too difficult and painful, I hope you understand.
I went to Midnight Mass at the local church on Christmas Eve, but unfortunately had to leave after just 1 ½ hymns. It was too difficult, the first time I’d attended the church since the funeral, and it felt very raw.
Maybe next year I’ll last 2 hymns!!!!
On Christmas morning Charlie had to be persuaded to unwrap his presents, and stop watching TV!!! He wasn’t that enthusiastic!!!!
My parents were the first to visit; they brought Charlie a Playmobil Noah’s Ark, which Charlie loved.
After my parents had left we took Frodo for a walk on the beach, and visited Jamie’s grave.
Then Dave’s Mum and Jeff visited, with more presents. Unfortunately Charlie had fallen asleep in the car on return from the beach, and after he finally woke, wasn’t any more enthusiastic about his presents than the morning!!!
We had to either half unwrap the presents, or just completely unwrap them for him… a few presents got a “Wow!”!!!
On the day after Boxing Day, Dave’s sister Jo came to visit with Fiancé George, and Cousin Josh.
Nana Pat and Granddad Jeff came and picked Charlie up the same evening, to take up to visit family in Grimsby for New Year.
-----------------------------------------------------
Dave and I had asked for money for Christmas, to buy a new bed.
When we went to Amsterdam the hotel we stayed in had the most amazing giant soft bed, and it was from Ikea!!!! The bed was soooo luxurious, we kind of sank into the mattress, and would have gladly spent the whole holiday just lazing in the bed, watching cable TV!!!!
On our return we noticed how uncomfortable our bed is, we could feel the springs through the mattress, despite the bed being only a year old. I suppose it was our fault for buying a cheap bed!!!
Thank you to everyone who gave us money towards our bed; we raised £350 in the end!!!
On the 29th of December we hired a large van and drove up to Ikea Bristol and bought ourselves a King-size Malm bed frame, with Sultan mattress, along with a new quilt, quilt cover and had enough left to treat Dave to a new pillow.
I got some funny looks driving the large van!!!!!!
-----------------------------------------------------------
For my birthday I bought myself a Budgie, a male blue one, and called it “Sky”. Then after a couple of days decided Sky was lonely, so bought Sky a companion, another male, but cyan coloured, and called it “Cyan”.
The 2 Budgies kept squawking at each other like mad, like they were arguing…. It was soooo noisy, so I returned Cyan to the pet shop, and exchanged him for “Cyan #2”. Identical but a female!!!!!!!
On return home, and introducing the 2 Budgies, we discovered that the 1st Budgie, Sky, is just a noisy nutter, as he squawks at this one too!!!!!!
Luckily they have settled in well, and preen and kiss lots… soooo sweet!!!!!!
On the subject of pets…. We had another fish incident!!!!!
This time it was my large Black Moor Goldfish, named Victor (Big Brother!!)
Dave had bought a large 28kg bag of ocean rock for his new 4ft Marine Fish tank, and let me choose a few small pieces for my coldwater fish tank.
It looked fab, and the ocean rock even had holes in, which was perfect for hiding the special Algae Wafer food meant for my smaller fish (bottom feeders!!)
Every time I put these Algae Wafers in the tank, the big goldfish would go nuts and eat it before the little fish could get a look in!!!
The following morning, I turned on the light in the fish tank, and all the fish normally come to the front, as they know it’s feeding time.
I noticed Victor was missing, and scanned the tank, but couldn’t find him!!!!
Then Dave pointed out a black mass, underneath 2 rocks at the back!!!
I lifted the rocks, to find Victor, squashed between them, almost under the gravel!!! He must have tried to get the wafer I hid, and somehow gone around the back of the rocks, and worked his way between them!!
I thought he was dead, but miraculously, he slowly started to swim. He has scraped his scales off on both sides, and looked rough!!!
I did a 20 ater change, and added some marine salt to the water for healing. It was touch and go that he was going to survive, the next morning he was back to his old self!! Phew!!
Dave has started a Marine Fish Tank. He has a 4ft tank, and so far only has live rock, ocean rock, and 2 Shrimps!! It has taken ages for him to set up right, and soon we will be able to get some Marine fish to go in it… I have my eye on a Puffer Fish!!!
-----------------------------------------------------------
After suffering with Carpal Tunnel last month, the pain in the left hand became worse, spreading up my arm at night.
I went to the doctor and had a steroid injection into my left wrist, which has completely stopped the Carpal Tunnel in that hand!!!
The Doctor was reluctant to inject the right wrist, during my pregnancy, unless extremely necessary and it’s not as bad as the left one was, so we are leaving it for now.
---------------------------------------
On Monday I have my 20 week scan. Hopefully we’ll find out whether the baby is a boy or a girl… fingers crossed for a girl please!!!!!
My pregnancy niggles have all gone, except Carpal Tunnel in the right wrist, and I feel well. I’m not very big yet, and have actually gone down a clothes size, which is scary, because I’m not dieting!!!
-----------------------------------------------------------
Most days we are coping without Jamie, I feel we are doing pretty well, and have even thought ourselves lucky, on occasions, compared with some Angel Parents who are left childless.
We still have our bad days, every now and then, but more good days, which is good.
I had a bad day this week. It started off with finding a squashed Victor the Fish, then I went shopping caught a couple of lines from a busker’s song which hit me like a brick wall!!!! He sung, “He was her pride and Joy, the apple of her eye”
I found myself trying to drive home in hysterical floods of tears, and ended up on Father John’s doorstep!!!
After an hour and a half, box of tissues and cup of tea, I emerged feeling much better. It was a great help talking to Father John, he was so easy to talk to, and we chatted about Jamie, and joked about other stuff. I apologised for not lasting Midnight Mass, and said how angry I still am with God, which Father John was most understanding about.
I feel lucky to have a priest like Father John, he’s not like any other man-of-god I’ve ever known… more human and down to earth!!!
---------------------------------------
Charlie is well, although a handful at times. He seems to have an endless supply of energy, and tears up and down the hallway, and attacks visitor’s legs!!!!
He can be verbally aggressive towards people, telling them to; “Shut-Up!” which is most embarrassing. We are working on it!!!
To be fair, despite the setbacks of verbal aggression, Charlie has improved greatly in his behaviour; we just need to guide his verbal skills better!!!
Charlie attends nursery for 2 afternoons per week, which he loves. We felt the interaction with other children would be good for him.
When he’s 3 ½ he will start Nursery School, at Jamie’s old school.
Charlie shows signs of missing Jamie. He still asks for him on occasions, like he expects him to return!! I didn’t realise, till speaking to other parents recently, that children as young as Charlie can suffer grief too!
----------------------------------------------------------
I hope to include a new page on the main site, with information about Neuroblastoma Articles. There are always new stories, and medical findings, which some may find interesting.
------------------------------------
We have another Neuroblastoma sufferer, who lives nearby, called Bobby Wright.
Bobby's family are raising funds to take him to USA for Antibody Therapy, which could improve Bobby's chances. So far, Bobby has completed most treatment, and is currently on Accutane.
Quite a lot of people have asked us why we didn't try and get this type of treatment for Jamie, and the answer is because Jamie's body suffered so badly during treatment, he had digestive problems which meant he needed to be fed by TPN and Jejunostomy for 9 months following surgery, plus he lost a kidney, and got Pulmonary Hypertension. It was a miracle that Jamie actually survived the treatment in the first place.
There was concern about the state of Jamie's body after treatment, and it was decided not to do Radiation Therapy because it would have proved too damaging.
The Antibody Therapy was only available on a medical trial at that time anyway, so it was just not an option.
The point I am trying to make, is that each child is different, and Jamie had Neuroblastoma more serverely than Bobby, although they were staged the same, Bobby got off extremely lightly, with only 2 hours of surgery, and no digestive issues or kidney loss. He is very lucky.
Some treatment may be helpful for some kids but wont change the outcome for others.
---------------------------------
Be sure to check back next week, for my post 20 week scan update!!
Love Kelly
XXXXXXXXXXX
www.beebo.info
Tuesday, December 13, 2005 6:44 AM CST
Thank you to those who made the effort of sending me a birthday card, text, e-card.
21 again!!! I suppose it's all downhill from 29, so I'm going to stay 21 as long as I can get away with it!
Poor old Dave announced that he found a few wrinkles last night! I gave sympathy, don't worry... I briefly paused from my Laptop activities, and gave him an "awwwww!"
-------------------------------------------------------
We returned from our 3 day Disney Land Paris holiday on Saturday/early hours of Sunday.
It was great; we had a fabulous time, and met some interesting and nice families with Cancer kids.
I got to finally meet Elaine Ball, of Tom Ball Charity, who kindly put the holiday together for us, millions of thanks Elaine. http://www.thomasball.org.uk/
We hung out with Megan's family, Beth and Mick, with Joe. Megan also has Neuroblastoma, and is currently off treatment and NED – http://www3.caringbridge.org/vt/megan/
We drove to Bristol, leaving at 3am on Thursday morning, where we left the car at Temple Meads train station, and caught a train to Paddington, then a tube to Waterloo.
At Bristol, we had 10 minutes to park, and find platform 7, which meant going down the subway, with lifts that never work. We didn't have £27 in change for parking, so took the wise decision that the £20 fine for not buying a ticket, was the best course of action, and cheapest. Plus, there was no-where open to get change, and we risked loosing our train, which was already on the platform waiting.
The tube at Paddington was packed full, and we had 8 stops before Waterloo. Charlie loved the train, but wasn't enjoying the tube, where we had to stand by the door. Charlie got angry every time the door closed when leaving each stop!!!
At Waterloo we met Megan's family, in a cafe. I recognised Megan first, and said to Dave, "That's Megan over there", then Beth, Megan's Mum, came over and said, "Is that Kelly? I thought I recognised you from the website!"
What it is to be a celeb!!!!!!
The Tom Ball Coach was stuck in traffic, so when it arrived, we had to all rush through check-in and customs, but finally made it onto the Eurostar. We had a whole carriage to ourselves.
Charlie behaved perfectly on the journey, he surprised us both. I brought a bag of toys to keep him amused.
We arrived at Euro Disney around 1.30, and checked into our hotel before all dispersing off in our separate directions.
Dave, Charlie and I had a much needed nap, in our room for a couple of hours before heading to the Disney Park.
It was dark, and the park was due to close soon, so we took a wander round before heading for MacDonald’s in the Disney Village, for a quiet dinner before the parade finished.
We timed it well, as while we left MacDonald’s, people started pouring out of the Disney Park in drones, heading for food!!!!!
We were asleep before 10pm that night; me and Charlie shared a double bed, while Dave took the other double for himself, not liking being squashed, kicked, nudged and disturbed by our fidgeting!!!!!
The next day we met up with Megan's family, and did Disney.
We had a special pass which allowed us to queue jump, due to disability.
The first queue we jumped was in Discovery Land. Some space ship ride. Charlie and I took one space ship, and Joe and his dad, Mick took the one behind.
These space ships had levers to make the spaceship go up and down, as they spun round, which Mick didn't enjoy; we could hear him telling Joe, "Go down!!!!!"
The Peter Pan Ride!! A massive queue, which stated 30 minutes wait, but looked more like 2 hours. We proudly and smugly jumped it!!
The Peter Pan ride I captured on video, but is funny, due to all the darkness in the ride, and me saying, "I can't see anything!!!"
We jumped the Teacups queue next, and then wandered through the Cheshire Cat Maze.
I had to drag everyone on "It's a Small World", which was my favourite, apart from Space Mountain, in Florida.
Megan loved it, after initially being scared. We persuaded her it was a slow ride.
When we got off the Small World ride, we caught the end of the Christmas Parade in the near distance, and then headed for the Carousel ride, where I struggled to climb on the high up horses!!!
We saw a few Disney characters about the park; Belle, Snow White, Mickey, Donald, Beast.
Charlie loved seeing the Dragon, in its dark lair, with smokes coming out of its mouth. We'd seen it the night before, and had to take Charlie in again, as he'd loved it so much.
It was absolutely freezing, and my feet were killing by the end of the day.
We took dinner back at the hotel... 25 Euros for all you can eat buffet... I nearly tried snails, but bottled out after pulling it from its shell!!! It looked too slivery and Yuk!!! I would have tried frog legs though!!!
The hotel had a small amusement arcade, which kept the children amused, even without money they played for ages, while we sat and chatted with Megan's family in the lobby of the hotel. Charlie and Joe ran around like nutters, and played hide-and-seek under tables!!!
On Saturday (My Birthday!!!!) we went to Disney Studios, but found that we couldn't queue jump! And it being a weekend, it was busier!!!
We had a wander round though, and saw the Cinema Parade, and Animation attraction, before going on the Magic Carpet ride.
There were more Characters here than in the Disney Park!!! We saw Mrs Incredible, Mickey, Woody, Jessie, Brother Bear, Lilo, Stitch, Sully, plus all the characters in the Cinema Parade, which homed in on Megan, in her wheelchair, for kisses and hugs.
We were due to catch the train at 6.30pm, so didn't have long before we had to leave.
We went back into the Disney Park, for the Christmas Parade, and some shopping, before getting our stuff together for the journey home.
The Eurostar was noisier on the trip home, as everyone knew each other better I suppose... Charlie running around, Joe climbing under seats!!!!
The kids settled once we set off, and all behaved impeccably on the journey home... well Charlie did once Dave took him off for quiet time, due to tantrums and tiredness, and Joe snoozed after his puking incident!!!!
On return to Bristol Train Station, we were pleased to see that no-one had nicked or towed our car!!!
Unfortunately we had 2 parking fines!!!!!! ARRRRRRRRGHHH!!!
Never mind!!!!!!
Dave and Charlie slept on the car journey home, around 12am, while I battled through the thick fog!!!
We arrived home around 1.30am.
We have loads of photos, which I will upload after the update. I also have lots of video that I want to take stills from, so that will follow later. It's madness in this house, so I haven't had the chance to do it so far.
Since being back I've had to tackle good old house work, which never seems to cease... Charlie followed me around the house un-tidying, as I tidied. I must have picked up his toys from the lounge floor a million times yesterday! Each time I turned around to grab the Hoover, he'd got more out!
Charlie had a great time at Disney, and we spoiled him rotten with toys and sweets. He loves chocolate like me, and overdosed on chocolate Disney coins, along with Megan and Joe.
Joe and Charlie became inseparable, and Charlie even started saying, "Where's Joe" whenever Joe went out of his sight. Joe played mother hen, herding Charlie in the right direction, and trying to keep him out of trouble. This was funny at times, as Joe proved to be a wanderer, and we were forever saying, "Where’s Joe?" too!! Luckily Joe would only be a few foot away, and most annoyed at the nagging. But it was such a busy place; we were terrified of losing him!
Joe is the same age as Jamie, and Megan is the same age as Charlie, but more advanced in her talking.
I have to say, how ignorant we found the other "Foreign" visitors to Disney. When we were on buses, they'd all barge on at the stops without even stepping back to let anyone off!! I saw two mothers have a small pushchair collision, and exchange filthy looks!! Most British mothers would have chuckled and apologised profusely to each other.
When we were watching the parades, people would step out in the road, in front of our kiddie's view! Poor old Megan and Charlie, in their chairs struggled to see, so I started using Charlie's buggy as a weapon, and fighting back, with a little nudge forward into the offending moron!
------------------------------------------------------
You'll have to excuse my typing; my Carpal Tunnel is really bad on this pregnancy. I can't raise my hands above waist height without them getting pins and needles and slowly going numb. It hurts like mad!!
I first got Carpal Tunnel when pregnant with Jamie. It's where the blood flow to the hands is constricted at the wrists for some reason, caused from my pregnancy, but also a condition outside of pregnancy.
After Jamie was born, it subsided, to return for Charlie's gestation, slightly worse, then after Charlie was born, it stayed slightly. This was one of the symptoms that made me suspect I was pregnant. It's worse this time than it was when I was pregnant both times before put together!
In the morning my fingers are swollen, and I can't close my hands. The swelling goes down within an hour or so of getting up, and then if I talk on the phone, write with a pen, type, use the mouse, drive it comes back!!!
I have special wrist splints, but they just seem to make it worse. I'm off for a soak in the bath after this, which usually soothes and relieves the discomfort.
I have started to feel slight movement in the tummy department, but nothing definite yet, despite seeing what a fidget the baby was during the ultrasound scan. I best make the most of not being kicked and prodded, and having feet jammed into my rib cage, while I can!
---------------------------------------------------
I've booked tickets to see Steve Holbrook in March. He proved to be my favourite Clairvoyant experience. I won’t be returning to the larger shows of Colin Fry and Derek Acorah. I'd consider doing a small or one-to-one with Colin Fry, but I don't fancy seeing Derek again, he was a bit OTT!!!!
Just because I go to see these psychic types, doesn't make me gullible, so will those out there, you know who you are, stop trying to feed me crap!!!!!!
I got an email the other day from a so-called psychic person trying to tell me that Jamie is returning in my un-born child!!! What a load of twaddle!!! Utter crap!!!
Just don't bother, I may be blonde, but I'm not that stupid! Don't even go there!!!
------------------------------------------------
We are having money towards a new bed for Christmas. I've seen one in Ikea, which we tested while in Holland. It's massive and very comfortable!!!!!!
For my birthday I also had money, which I am going to buy a bird... Budgie or Cockatiel, I'm not decided yet... I just know I want a bird that will talk.
I have a cage already, so will look around for the perfect bird.
-----------------------------------------------------
We unfortunately lost "Jesus" the fish, named by Cousin Harry... Jesus became unwell after my PH levels dropped, and failed to recover. He was in a very sorry state, so we had to do the humane thing, which according to my fish book, was putting him into a jam-jar or water, and freezing him!! Honest I read it in the fish care book!!
It felt better than flushing him down the toilet, and having his suffering prolonged with the chemicals and crap in the water system!! This way he slowly went to sleep.
-------------------------------------------------
I will update again, in 3 weeks maybe, or if I get a chance after Boxing Day.
We're not ready for Christmas yet, I'm putting off doing the tree for as long as possible!!! Charlie will only bosche it!!!!
We're having a quiet Christmas, with just the three of us. Parents are visiting but we want it low key... no-one wants to see me blubbling anyway!!!!
I’ve updated Beebo’s main site again, and added a page of poems and Lyrics, called “Inspirational” and also added “Jamie in the Press”, a collection of his newspaper stories. They’re not all there, as some of the earlier ones have disappeared from the newspaper websites, so I’ll scan my copies and add them soon.
---------------------------------------------
Before I go, I must mention a few bits…….
1. Please visit http://www.elyseryan.com/alex/index.html and take a look at the new range of Alex Lemonade Stand jewellery. Alex Scott also had Neuroblastoma, and was a pioneer in raising loads of funds for Neuroblastoma research, by starting up a Lemonade Stand.
Sadly Alex lost her fight, aged 8. But her legacy lives on, with loads of other Neuroblastoma kids doing the Lemonade stand in her honour.
2. Visit Daydreams Shop at http://www.spreadshirt.net/shop.php?sid=105639!!!!!
The Daydreams site is now live at http://www.Daydreams.uk.com which is hosted on Beebo’s server, and will be updated soon; to include Newsletter of what Daydreams has been up to.
3. Beliefnet is running a poll for "most inspiring person of 2005", and Alex Scott is among the candidates. You can vote at http://www.beliefnet.com/index/index_912.html
Please vote for Alex, we want her to win!!!!!
4. Here is an idea that I hope to bring to the UK.
Please go to http://www.lunchforlife.org/ right now and donate your lunch. The website has all of the information you need. Then, most importantly, contact your friends and ask them to do the same. If we do this together we could put Neuroblastoma research ,in the USA, ahead by over 6 years in the next ten days. Yes, in the next ten days we could potentially save over 1800 children's lives.
When you donate, use the code = 15942. That way it will be made in Jamie/Beebo’s honour, and a decoration in his name will go on the tree.
5. Finally….. Please think about the organization that has made it possible for us to find and support one another - the Association of Online Cancer Resources, ACOR.
ACOR is an all-volunteer enterprise, started by a visionary named Gilles Frydman back in 1996-97 (?). ACOR is a bona-fide non-profit, 501(c)3 organisation that depends on donations to keep the computers, software, and coffee going to make sure we can communicate with one another day and night, from home, hospital, airplane, from anywhere in the world. Gilles runs this machine virtually single-handed, with the help of a few key volunteers (including the Nblast listserv administrators) who ensure that this service is available free to anyone who needs it. If we don't support it with our thanks AND our dollars, we could lose it.
If you are looking to send a nice holiday thanks, consider ACOR. You can find out more about them by going to the home page at http://acor.org and click on "HELP ACOR"
Love Kelly
XXXXXXXXXX
www.beebo.info
Tuesday, December 6, 2005
I would love you guys to have presumed that no news is good news, when in actual fact, I've been waiting for something positive to update about!!!
It's hard to believe that nothing positive can happen in 3 weeks, and at times I started to hope it was one long nightmare!!!
To be fair, it hasn't all been bad. And I finally got something positive to report, so here I am!!!!
On Thursday morning we are off to Euro Disney for 3 days!!! Courtesy of the Thomas Ball Children's Cancer Fund.
"The Thomas Ball Children's Cancer Fund was founded in 1999 by Thomas Ball, then aged 9 and himself undergoing treatment for Neuroblastoma stage four which had been diagnosed some 20 months earlier.
The main objective of TBCCF is to relieve sickness and distress among children suffering from cancer and members of their families. We do this in any way that the trustees feel will be beneficial to the sick child, usually in the form of medical equipment, holidays, special gifts and research."
You can visit their website at http://www.thomasball.org.uk
Friend Nick been drafted in for dog sitting duties. Nick loves Frodo, and stays at our house when we go away, to keep Frodo company.
-----------------------------------------------------------
On Friday November 11th we were invited to a memorial service at Jamie's school.
It began with the hymn - Come God's Children.
There was one large wall of the school hall just for Jamie, with rainbows, balloons, butterflies and flowers, with messages from his school friends. I hope to have a photo soon, as I didn't take mine, and was promised that someone would take a snap for me.
Next excerpts from “When Angels Call” poem were read by one of the school children. I hope to have a poems page on the main site too, so will include it.
Then after a minutes silence, some more of Jamie's friends stood up and shared memories of Jamie with everyone.
We were then presented with a folder of Jamie's work in class before everyone sung "On Eagle's Wings"
Father John was there, and talked with the children about Jamie, and God.
At the front of the hall, on a small round table, was a photo of Jamie and some candles. While the hymn "Christ Be Beside Me" was sung, some of the children lined up and lit the candles by Jamie's photo.
Then the poem "The Rose Beyond The Wall" was read, before prayers, and at the end Jamie's classmates stood up and blew bubbles while the children sang "I'm Forever Blowing Bubbles"
It was beautiful, and I'm sure Jamie was there watching and smiling. I suddenly remembered something that the Clairvoyant had told me, about Jamie singing to her, and waving his arms.
I truly believe that Jamie had been watching his school friends practicing for the memorial service, and was excited, because when they sang "On Eagle's Wings" they made arm actions.
------------------------------------
Gradually, since Jamie passed, our benefits have reduced and some stopped. We hoped this would be a smooth transition, but 2 weeks ago things started to go pear shaped when our Tax Credits stopped completely, due to an error on their part.
Because of our situation, our benefits should be dealt with by a different department, who will handle us sensitively, but they weren't.
The next week our Income support stopped, and JSA failed to start in its place, due to more errors on their part! Our claim was sat on someone's desk while we were struggling to buy toilet roll!!!
This week our Housing and Council Tax benefit stopped, due to our Income support stopping!!!
AAAAAAAAAAARRRRRRRRRRRRGGGGGGGHHHHHHHH!!!!!!!!
When will it all end?????
We got fed up of talking to numb-nuts on the phone, explaining our situation over and over again.
And to make matters worse, Tax Credits won’t pay for Charlie's nursery because we're not working!!!
It's taken over a month to get Charlie settled and enjoying nursery, and he now enjoys going.
Now we faced the prospect of having to stop sending him! Luckily we have great family support, and have received help every step of the way. We haven't starved to death, or slit our wrists just yet!!!!!
Whoever said time was a healer never explained when it's supposed to start healing, because at the moment I'm finding time doing the opposite for me. Every day in more painful than the last, when I have to wake up and realise again that I'm not in a bad dream, Jamie's still not here, and never will be.
I've had the messages and contact via the Clairvoyants, which was comforting, but not the same as the real thing.
I miss the hugs, the jokes, the laughter and cheekiness.
I long for the funny things he said, and did.
Today while moving a shelving unit from under the stairs, I found a sealed envelope with one of Jamie's drawings inside. I remembered when he was doing his own EBay parcels, like mummy, and was putting drawings into my A4 envelopes. He had a pile of them, and I was slightly annoyed that he was wasting my envelopes!
But finding this was like a lost treasure. I don't know how it ended up behind the shelf, maybe it was fate.
I just sat on the floor with tears streaming down my face, and I said out loud, "Thank you Beebs"
Jamie's Nana has had visitations from Jamie, he makes her bedside lamp flicker, but we've not had much, except a couple of blown light bulbs. I wonder why Jamie doesn't play with my lamp!
Sometimes Charlie says "Mamie" which is "Jamie" and calls for him and today he came upstairs into the boys’ old room that they used to share, and said, "Hello Mamie". I wonder if Charlie sees Jamie.
We have a new house guest temporarily, Dave's best friend, Lee, has moved in after being made homeless by his sister and her boyfriend. They suddenly decided to move out of their rented house, midnight flit style, and gave Lee 4 hours notice to move his stuff out!!
Lee is one of Charlie's God parents, along with Uncle Gav, Auntie Kim and Charlotte (One of my best friends)
Lee is getting a house with his girlfriend, Angela, who currently lives in Portsmouth, but is moving down here in 6 months time. Angela is a primary school teacher, and hopes to find a nice school to work in this area.
-------------------------------------------------
Daydreams.uk.com is now live. I have domain forwarding from Beebo's web space.
I will be updating during the next few weeks.
------------------------------------------------
I went for my dating scan, and discovered that my estimations were a bit off!!!
The baby is due on 4th June, not end of June. Charlie's birthday is 10th of June, he was due 30th May!
Jamie wasn't due until 26th of May, and was over a month early, born on 15th April!
God knows when I'll actually have this one!
The scan didn't pick up any problems, and I spoke to the consultant about genetic worries.
The consultant referred me to Genetic Screening, who wrote last week, to fob me off with how rare Neuroblastoma is in siblings!!!
I plan to telephone them and insist on screening, and threaten legal action if it isn't done and Charlie or the baby develops Neuroblastoma.
-------------------------------
The Clairvoyant addiction continues!!!!
Last night we went to see Derek Acorah, at the Princess Theatre in Torquay, and again were disappointed by the show.
I found again that with such a large audience, it doesn't work. People took too long to own up to relatives coming through, which wasted loads of time. Derek got very frustrated many times, and at the end he said there was still a large queue of spirits waiting for their turn!
Maybe Jamie was in that queue?? I suspect he would have got fed up like me too, and gone back to his side to play shoot em’ up games!!!!
We plan to see private Clairvoyants, and still see Steve Holbrook next year, as he has a small gathering.
If anyone knows of good Clairvoyants, please email me their details.
---------------------------------------
It's my birthday on Saturday!!! 21 again!!! I'll be in Euro Disney, and travelling back on the Eurostar. I hope Jamie tags along with us, he'd love Euro Disney. Charlie will love it too; he's just getting into Toy Story, and Shrek stuff.
Luckily I've been able to reduce his Power Ranger viewing, and physical violence. He is coming on leaps and bounds, and has blossomed into a sweet cuddly, affectionate little boy. He is still nuts, and runs around the house like mad, and climbs through the serving hatch, stands on his Nan’s shoulders, and tries to climb out of his car seat!!! But he has changed. He's benefiting from one-to-one time.
People keep saying make the most before the baby comes, but it's different, having a new baby, to having a sick child, at least I'll be at home with Charlie, so it won’t have the same effect that 2 years being passed from pillar to post has had.
Charlie is now confident to visit my parents, and when they visit he is much nicer. I think before he was scared that they wanted to take him away, and needed our security, feeling the stress we were going through during Jamie's last weeks, and after his passing.
I realised this week, just how sensitive to our moods Charlie is... while Dave and I were having a heated discussion Charlie started to shout and point at Dave, and put his hand over my mouth, telling me to "Shush"!!!!!!
Sometimes when we raise our voices to Charlie, he'll come over and talk babble to use in a very quiet hushed tone, putting his hands on my shoulders, as if to say, "There really is no need to shout" with his head tilted to the side!!! I think he is going to be a therapist!!!
I wonder where Charlie thinks that Jamie has gone. I thought for a while that maybe he was scared that Jamie had gone to his nanas and never come back, and that was why he didn't want to go there anymore, who knows!!
Last night my mum and dad came over and looked after Charlie at our house, while we went to the Theatre, and he was good as gold. What a relief. I was getting worried at Charlie's rejection of his Grandparents, which was the last thing they needed after losing Jamie.
So now, apart from the occasional car or Duplo brick being chucked at my dad, Charlie is great.
---------------------------------------
I hope to do the next update next week; it will be a Euro Disney special!!!!!
Love to all - bah humbug too!!!!
Kelly
XXXXXX
Thursday, November 10, 2005 7:35 PM CST
We have news!!!!
On Wednesday we discovered that I am pregnant!
At the time, we were shocked and not very pleased, as we'd agreed that we didn't want any more kids.
And with all that has gone on, we want some peace and quiet.
I did another test on Thursday, which was also positive, so went off to the doctors to arrange for the appropriate scans and tests to determine how far gone I am, if the baby is ok, etc...
At this stage, we were considering the possibility of not continuing with the pregnancy, but after some thought, both of us have said that we can't play God... we've made our bed, so will have to lie in it!!!
I couldn't go through with a termination, based on a desire not to have it... it just would be profoundly wrong, and I wouldn't be able to live with myself!
I tried to think of people I know, who can't have kids, to donate it to them!!! (Mad I Know!!!!!)
Then all sorts of weird stuff popped into my head.... what if it's Jamie coming back? What if it's a gift from Jamie/ or God? What if it's a girl? Is this fate? Is God trying to send an olive branch?
So we have decided to embrace it, and go for it. I guess we just needed a few days to get over the shock!
Hopefully it's a girl, that would be the best news ever!
I'm quite excited about it now, and already choosing girl's names!!!!!!!
So now it's official... I have been urgently referred to the Obstetrician, as I am worried that I have been on anti-depressants, and contraceptive pill, and worried about the effects it may have on the baby. And hope to find out due date, etc...
I saw the Midwife on Wednesday (yesterday cause I haven't gone to bed yet, and it's 00.05, I know it's technically day before yesterday)
She took bloods!!!! Yuk!!!! I forgot how brave I was when I went to donate blood, with no magic cream, and this time attempted to apply magic cream to the crooks of my arms.. Big mistake, as I was cooking in kitchen, and bending arms, so cream leaked out, and I ended up with a numb lip and tongue some how, even before eating lunch!!! Then the Midwife targeted an area that was non-creamed anyhow!!!
She hadn't read up on my records, and I had to explain my angst about the baby's health due to Jamie... I don't care what the doctors say, about it being rare in siblings... lightening can strike twice, with our run of luck, I'm not risking anything!!!
I managed not to cry, when telling the midwife about Jamie, but it's hard when you see the look on their faces, and the midwife was struggling not to cry too!!!!
I will have a dating scan ASAP, but we think the baby is due around the end of June. From looking at Jamie and Charlie's dates of birth, April 15th, and June 10th, which are close, I'd say I come into season from July to August-ish!!!!! LOL!!!
-----------------------------------
Yes, I'm in good spirits tonight. We just arrived home from Taunton, where we'd been to Dave's mum's for Dinner, then Pat (Dave's Mum) and I went to see a Psychic in Bridgewater.... Wow, it was amazing, and spot-on!!!! First Pat had her father come through, then Jamie came through for me!!!! We didn't tell this lady who we were or who had died, she said to me that she had a very young boy, and assumed he was my brother at first!!!
Jamie said he's known as Beebo up there, and is very happy.... He acknowledged our favourite colour, PINK, and talked about his monkey again!!! The Psychic said he was talking about "H" who is his older cousin, whom he worshipped. Apparently Jamie visits him a lot. I was told to light a candle and watch the flame, as Jamie said he like's to play with my candles!!!!
There was lots, and my mind is buzzing... once it slows down, I will be able to remember more. This Psychic was very good, and a different experience completely from Steve Holbrook, so I wouldn't say better, good and different, on the same PAR.
-----------------------------------
I feel I may not have been totally fair with my comments about CLIC, on the last update. I was very angry and bitter then, and have mellowed and calmed since then.
I hope that if anyone who worked closely with Jamie felt that I was having a dig, will understand my anger and grief, which has subsided... I don't blame the doctors, nurses, specialists, hospital.... I blame the cancer... Jamie fought, the doctors fought, nurses fought, we all fought, but the bastard won.
And may I remind readers, that these Caringbridge pages, are personal journals, where readers and supporters are invited from other sites, as part of a community.
If anyone objects to my personal thoughts - TOUGH! Don't read it!!! And complaining to my relatives wont help, this is MY journal, not anyone else's!
(I can already feel certain people cringing!! Sorry, but had to be said!)
The CLIC nurses work very hard, and do a great job. I am very grateful for the emotional support that I got from my CLIC nurses, at Exeter.
I am just very disappointed with the charity of CLIC after I supported them, raising funds for them, telling people what CLIC do, by means of supporting families, and helping to maintain normal family life.
It actually states on the CLIC website:
"All the nurses work as part of a multidisciplinary team to ensure that children and their families receive the best possible support and care as close to home as possible.
CLIC Nurses build up close relationships with children and their families and have a number of roles:
*Explaining the disease and treatment programmes
*Providing support during initial treatments in hospital
*Providing routine tests and treatments at a child s home or school, so reducing the number of disruptive trips to the hospital
*Giving support and reassurance to the family at home and in hospital
*Co-ordinating the management of terminal care at home
Help to reintegrate children into school, playgroup and the wider community "
END QUOTE
When in actual fact, the CLIC nurses in our area, are employed by the Hospital Trust/whatever and controlled by their rules.
Not ALL CLIC nurses are able to live up to CLIC's description of their duties and abilities, as they are few and far between, with in our case, 2 CLIC nurses to operate in a very large area, making it impossible for them to visit children at home when needed. Like when Jamie was ill.
The best part of CLIC, I feel, are the CLIC Homes from Home. We couldn't have coped without them, and still feel in debt to the staff who helped and supported us in Bristol.
Although I have resigned as CLIC Chairman in my area, I still intend to support CLIC as before, but in a non-official capacity. I will be sending donations that I receive direct to the departments, i.e.: Paediatric Oncology depts at Exeter and Bristol, and directly to CLIC House Bristol, instead of to head office, to pay for wages and company cars to staff who work for CLIC.
And in actual fact, I think it sickening that some of the fundraising staff at CLIC are actually paid more than CLIC Nurses!!!!!
---------------------------------
This week's been very emotional for me.... we're blaming the hormones of pregnancy. It's funny how all these symptoms get worse once you know you are pregnant!!!
I think that giving up my anti-depressants, trying to quit smoking, and grieving the loss of my son, probably don't help much either!!!
I was thinking back to Jamie's funeral today, and how I didn't cry. I didn't cry much then, I guess I was kinda numb. But now time goes on, and the numbness goes, the pain comes. And it bloody hurts like hell!!
I've cried probably every day this week, including the weekend. And as each day goes on, I cry more and more.
I can handle the photos we have around the house, in frames etc... But when I look at ones put away, that's what gets me.
I cleared the medicine cabinet out this week, and it looked so bare without Jamie's equipment, I just stood and sobbed at a whole empty shelf!!! I kept his Gastrostomy tube cap, and special scissor clamps that we had, in case of line splits, cause I couldn't bare to throw them out!
I sorted through Jamie's photos, to find an index print for my new locket.. That was hard, seeing all the photos, and I even managed to find an old photo of Jamie fresh home from BMT, looking fat, sat crying on the back step..... That photo always made me cry, even before Jamie died, so I nearly threw it away, but David stopped me.
He said that the photo is still important, even if it makes me cry, it brings an emotion, and that's what photos are for.
----------------------------
Charlie got his own bedroom this week... my old Ebay room. We figured that the baby will need the closest room to us, which is currently the Lego room. David rebuilt the bosched Lego that Charlie wrecked!!!
I thought it will be hard for Dave to part with the Lego room, and didn't want to pressure him, so my Ebay room, has been moved into the large room, so that's now a guest/Ebay room!!! I have kept a shelf unit of Jamie's toys, and his Superman suit, and School uniform, along with about 6 monkeys hanging in the window. One of my friends told me not to build a shrine to Jamie... this isn't a shrine, I just can't put all his toys and stuff away, I believe he is still with us, even if not in person, so is still entitled to have his stuff around. I still have a drawer full of his favourite T-shirts, and drawer full of his Pyjamas in there, which will probably stay permanently.. Some clothes Charlie will inherit, but there are some clothes I don't think we could bear to hand down.... it wouldn't feel right to see Charlie in certain outfits and Pyjamas.
----------------------------------
More news.... part of our side fence blew down last week, in the strong winds!!! Dave may have actually drove past the bare patch, on that morning, and not noticed it!!
We have a side patio/type concreted area, where we keep the bins, plants that need TLC, new seedlings, garden toys, washing line etc, and it's fenced, so quite private.
I went round to the bins, in my Pyjamas, as I do, and normally can with such privacy. But on this day, as I stood up from the bin, felt a strange urge to turn around, and there was the neighbours houses, staring across at us!!! And 2 parts of fence, slid down the steep grassy bank, nearly onto the pavement a couple of metres below!!!
I think this was the day after I found out I was pregnant, so I wasn't happy!!! I was like, "It's going to be one of those weeks!!!!"
It still hasn't been repaired! And I still feel quite weird when I potter around in that area now.... I don't feel comfortable. I know the neighbours don't watch me, but it feels open and vulnerable!
--------------------------------
I bought Frodo one of those ball slingers yesterday. I first thought they were for lazy people, who couldn't be bothered to throw and pick up their dog's ball, but soon realised how far you can throw a ball with these things. Being a top "Shot Putter" in my school days, I was confident that I didn't need one, but decided it would be nice to throw further, and thus the dog is busy longer between throws!!!!
Today was the slingers virgin walk, and Frodo was very excited at the prospect of a ball fetch session, as we walked to the nature reserve today.
I should have walked further into the reserve, to the open field before the first launch, but couldn't contain it any longer, and decided to do first launch just as we'd entered the reserve.....
I think my sling might be off slightly, as the ball, after travelling a good 100 metres in the air, landed in someone's back garden, adjoining the reserve...
Frodo did hid best to try and locate the ball, bless!!!!! But we couldn't quite lean over their garden fence enough to reach it... and the brambles didn't help!!!
So we had to continue our walk with a sad empty ball slinger!!! Luckily we didn't come across any other walkers.. it felt as silly as pushing an empty pushchair!!!
I have more balls at home, and will learn my lesson next time!!!
----------------------------------
I wanted to acknowledge some peeps, like a shout out.......
*Thanks to Dylan Hartung. Your website statistically sends Beebo most of his visitors/hits!!!!!!!!!!
*Thanks to Viks, from Postpals, for the balloon release, featured in the guestbook
*"""I miss Jamie.
J
- Thursday, October 27, 2005 11:41 AM CDT""""""" - Author unknown... who are you? Just curious!!!!
*"""Hi I stumbled across your site and have to say that im thinking of you. I lost my son 4months ago to this filthy disease and i know what u mean by the crying attacks. I think of my hansome fun son every min of every day as im sure u do of your beautiful boy. Just to let u know that there are people thinking of u who have some idea what you are going through. X.X.X
Nia """" - Nia, email me, with your email address, it would be great to chat
---------------------------
I had some Google alerts of other UK children with Neuroblastoma....
* LITTLE Lewis Robertson lost his battle against cancer but lived long enough to hold the baby brother he yearned for.
* Kieran, has battled Neuroblastoma – cancer of the nervous system – but doctors say his condition is incurable, so now his family is trying to make his dreams come true – he wants to meet Father Christmas and travel to Disneyland to see Mickey Mouse.
* Parachuting granny raises £500 for fund
This is our famous Tom Ball's Gran!!!
* Isabelle Sanders of Milton Keynes - UK child having to wait for treatment - This was from Tom Ball's Mum funnily enough!!!!
--------------------------
When time allows, I will be opening a "Prayers Needed" Page, for kids who need a little help, so watch this space.
---------------------------------
The Daydreams charity is nearly web-live!!!!!
We have paid for web space, so when the cheque clears, I will be able to move Daydreams from Beebo, to it's own space, at
http://www.daydreams.uk.com
I have printed up business cards already, and keep having to say, "Site's not live yet!!!!"
We would like people, to help out where they can, not with money, but with offers of help... like if you know any famous peeps, or can offer fun stuff... Some kids may want to be a fireman for a day, while others may just want to visit theme parks.
We aim to offer children, with a life expectancy of 6 months or less, special days, like Jamie had.
This will be open to UK children, so help from all over UK would be great.
We already have lots of people on our side, and always welcome more.
Daydreams differs from other wish charities where we specialise in urgent cases, that need 6 months of special times. We don't hand out money, buy laptops, or bikes, we only do experiences for the children to be cherished by friends and family.
We want the children to be happy, and laugh and make each day memorable, like it's their last.
Auntie Jo Jo, is running the Plymouth Branch, and has support of Body shop already, so I will put Jo's newsletter up on the new site, hopefully in the next week
------------------------------------
I have some Baptism photos, which I will scan and post on the Caringbridge photo page after this update.
I also acknowledge trouble that people may have with the Beebo site, since my last tweak!!!! Sorry. On the warriors page, the photos aren't working as links, but the names still do... I will fix ASAP
Also, the About me page doesn't go anywhere, that will be mended soon too!!!
If there are any other blips, please let me know, as I rarely browse my own site, which I probably should!!!
-------------------------------
Here's some quotes I have recently heard/borrowed.....
* When life brings you to your knees you are in the right position to pray
The next was from Spooks, when Harry asked Tom how he feels following the loss of his wife - "I feel like something is broken that can never be fixed"
* "Death leaves a heartache no one can heal,
love leaves a memory no one can steal" - Author Unknown
*"The only way to take the
sorrow out of death is to
take love out of life." - Author Unknown
Then there are a few Poems, which I will put on the Photo page
--------------------------
Consider yourselves lucky for an early update!!!!
I am very aware, and grateful for all the support that's coming in.... even if I don't respond, I'm grateful... sometimes I can't find the right words to reply!!
Sometimes there aren't any words big enough....
XXXXXXXXXXXXXXXXXXXXXXXX
Tuesday, October 18, 2005
I'm having a good day... well it's turned out good, so I thought I'd best do an update while the mood lasts!!!!
I had an annoying experience with an Ebay seller, called Rose_Mae, who I'd won a dress from, back on July 11th. I intended to wear it to my friend Charlotte's Hen night, which I didn't attend in the end, due to Jamie's ill health.
Well I never got the dress, or a refund, after months of emailing her; she finally started ignoring my emails!!!
It's been niggling me for ages, and I keep seeing that she's a Power Seller, and still selling, even though she has a long list of negative feedback, and is obviously sloppy, and ripping people off... probably spent the money and can't afford to refund it!
This morning, after getting her contact details, I phoned and filed a report to the Police, who visited and took a statement, along with print-outs of all the details and emails exchanged. They said that it probably won't come to anything, as she had no intent to steal from me, and has promised a refund, but it might scare her into co-operating.
The Policeman even phoned her, while here, and left a scary message on her answer phone!!!
Then 10 minutes after the Police had left, I got a Paypal payment though for my refund!!!!! Yeah, the world has been put to rights for today!!!!!
I've turned into one of those people, who I used to say to, "Haven't you got more important things to worry about, than £29???? My son is ill with Cancer and your problem is minor in comparison!!!"
Of course now I don't have anything important to worry about, so I have time and energy to be trivial!!!
-------------------------------------------
Dave and I went to see Colin Fry, at Torquay's Princess Theatre, on Friday night. Colin Fry has a show, called 6ixth Sense, on Living TV.
It was busy, and loads of people... No message from Jamie, although I don't blame Jamie for not hanging around, I found it slow moving, and boring, compared to Steve Holbrook!!
What else have we been doing????? Not much really...
My depression is a little better now that I'm actually taking my medication at the right times, although I do feel tired all the time, and often need an afternoon nap, and never want to get up in the morning... but that might be down to late nights on the internet!!!
We're still up and down, with a few good and a few bad days...
It was Cousin Harry's 6th birthday at the end of last month, and the day after my last update, Sunday 2nd October, Harry had a party at Quasar and Bowling in Torquay. It's too old for Charlie, so the plan was, for me to take Charlie to Rainbow Funhouse, next door, while Dave went to Harry's party.
On the way to Torquay, it suddenly hit me, that I couldn't go into Rainbow Funhouse... it was Jamie's favourite haunt... the last time we'd been was for Jamie's 5th birthday party.
I went into the bowling alley with Dave instead, and Charlie enjoyed running around and playing with the arcade machines, while we played bowling, and liked seeing his cousins before they went off to Quasar.
I was fine, doing great, even though there was a bald kid there, attending another party with his young friends, and we talked amongst ourselves, trying to guess what this boy had, and how long he'd had it, by the shiny ness of his bald head!!!!
Then their group sat down to eat, and sung Happy Birthday!!! That was it... like a tidal wave hitting me... the tears and sobbing came from nowhere, and I had to be escorted outside by my mother-in-law!!!!
It's like when you are going to vomit... it surges upon you, and you just can't stop it... not like the feeble tears, you can choke back... these are bad!!! I think only the Angel mums will understand!!! Like a slap in the face from no-where!!!
Bed time is the worst time for Dave, because we used to all go to bed in one giant bed and chat and cuddle.
The worst time for me is the morning, Jamie used to get me up, or nag me up!!! If I get upset first thing, I will have a crap day. I'm very vulnerable for the first 30 minutes before I get up.
Charlie still asks for Jamie everyday, when we arrive home, or when out and about. And he talks about him loads... I've no idea what Charlie is saying exactly, because he speaks babblish!!!!!
------------------------
I apologise to Warrior and Angel mums that the Warriors part of the site isn't up yet.... I ran out of online space, and realised that I am going about my web design the wrong way, and saving each picture in its original size, as well as shrunk size!!!
It's taken longer than I anticipated, correcting, and I have also streamlined the section, so hopefully it will load faster, for those of you not on Broadband!!!
I have nearly finished, and will upload it, then do alterations, like new angels NED etc... afterwards.
Fingers crossed, and bear with me, it is being done.
I am also looking into the Neuroblastoma Warrior and Angel Music CD, and Calendar that has been mentioned, so keep sending the song ideas
Also in the pipeline, is a poem/ inspirational words section of the site, more merchandise, and maybe a link, or page to my Ebay sales.
I have acquired quite a lot of stuff, that I am keen to pass on to other Warrior Parents, such as continence Pads, cancer T-shirt, and hats, so will be listing those, and advertising them on the site too.
Its official, I have resigned as Chairman from CLIC; now CLICSargeant, after struggling to get resources, I still don't even have 1 leaflet since the merge!! New committee members joined, and were going to do fetes, but the insurance certificate for public liability never arrived!
Then, to top it off, the CLIC resources, which I have been promoting during my fundraising, were unavailable to Jamie during his last few weeks.
Instead of having CLIC nurses come and assist us at home, in Jamie's care, we had to take him into hospital everyday for a 20 minute platelet transfusion that took us 3 hours for the round trip. There are only 2 CLIC nurses who cover an area over 100 miles radius, so Jamie didn't get a service that I was stupidly promoting!!!
During Jamie's last days, he was barely awake more than an hour at a time, but we still had to carry him into the car, and parade him through the hospital corridors to get his precious platelets. In the end, when Jamie finally voiced that he'd had enough, I suspect that the daily hospital trips had helped to steer his decision. We wasted countless hours in the hospital, and travelling to and fro, when we could have been trying to make the most of the last days with our precious son.
Angry???? Yes, I am... There are many aspects of the last few months that anger me.... when he came out of BMT, and we were told that he had a small spot on his femur on the MIBG, but it was going to be ignored, as it was too small to be significant... how significant was it?
The countless times I questioned the screening, that we only got a 3 monthly Catecholamine test and Ultrasound with MIBG... I was treated like a neurotic mad woman!
The very last 3 monthly screening was weeks before they actually discovered his relapse!!! Did they miss it?
I remember asking, "Does the ultrasound scanner know what he's looking for?" How can an enlarged Liver be missed 2 weeks before his relapse was discovered?
We were told at relapse, that it had come on fast, and Jamie only had weeks left to live... then 3 months later, Jamie is still alive... was the relapse so fast, or just went unnoticed? If we'd caught it earlier, would he have survived?
Lots of if what's and buts are still going round in my head, and I know that none of the answers will bring Jamie back.
The hospital have offered to meet up with us, to answer any questions we have, but it will just turn into a blaming session, with the doctor getting technical, and me getting more angry... and at the end of the day, I know that sooner or later, we would have lost Jamie anyway, to this evil disease... it's a lot easier to blame the medical system, because they are tangible...
I just feel cheated I guess... Jamie was a great, beautiful child, who never did anyone wrong and never did bad..., why did he have to suffer?
Then I think, maybe it's something I have done, that I am being punished for? That's silly, because it's punishing other good people too.
And I don't accept the bull about Jamie being special, sent to teach us all a lesson, and he's borrowed from God etc... I don't buy that crap, it just all sucks...
--------------------------------------------
Ford finally came to collect the car, after the original date of 28th Sept!!! Our new car broke down on Saturday, thanks a bunch to the bloke who sold it to us... he must have known the started motor was on its way out!!!
Luckily our friend got us a recon started motor, and it was fixed today.
Being car-less meant that Charlie got a bus and train ride yesterday, into Newton Abbot, which he loved!!! We have taken him to the train station to watch the trains; an activity born from Jamie, but Charlie gets upset when he can't actually get on the train, whereas Jamie never seemed to mind!!!
Charlie was chuffed, and sat perfectly on the train to the next station, and I even managed to convince him to get off!!!! Then after a while at Tumbling Ted's, indoor play area, we went shopping, and then returned home on the train, and bus.
I thought Charlie would be knackered, but he seems to have an endless supply of energy and still put up a fight at bedtime!!!!!!
I'm hoping to take Charlie on the ferry to Shaldon this week, he'll love that!!
I do have some more photos, in the pipeline... bear with me, as I seem to have loads on my plate at present, with restarting my Ebay, and other projects
Hopefully will do update in another 2 weeks, unless something exciting happens before!! I doubt it!
Love Kelly
XXXXXXXXXX
www.beebo.info
Saturday, October 1, 2005
Well here it is.... the long awaited update!!!!
I went to see Steve Holbrook, an extremely popular Clairvoyant, in Taunton. The evening started at 7.30; there were around 200 people in the audience, all hoping for a message.
Here is a piece from Steve's Website, explaining what he does....
"It may be useful for you to know that rather than just being clairvoyant, I am mainly clairaudient – in other words, instead of seeing any kind of visual imagery I hear voices, which are sometimes in my head and sometimes as if a person is standing next to me whispering in my ear. These voices can be crystal clear or they can be rather muffled, but either way I know they are the voices of people who have passed on from this life to the next. The information that is given to me, which can sometimes seem rather trivial to an ‘onlooker’, is always so personal to the recipient of the message – because of that, there is no doubt in my mind as to who these voices belong to- Therefore it does provide some very challenging evidence for life after death."
and.....
"I do ask for audience participation, by answering simply ‘yes’ or ‘no’ to my questions but I do not need (or want) anything more than that."
You can visit his website for more info, dates and venues... I highly recommend him, he's fantastic... You truely have to witness it for yourself to believe it
http://www.steveholbrook.co.uk
Just shortly before the halfway interval, I got a message from Jamie!!!! It was spot-on... He answered all my worries, and questions, and made me feel totally at peace, like a weight had been lifted from my shoulders.
He mentioned me trying to close his eyes, after he had passed away, mentioned the monkey soft toy I'd swapped around, told me that his nose was ok; it looked odd when I visited him in the chapel of rest, he said the number 1, our house number, and the seaside!!
He also said a couple of things that I couldn't make sense of totally, maybe Steve misheard him... 1st was, "Wiggly Toes" Steve said that he is wiggling his toes!! This could have been a reference to his wiggly being removed.
2nd was; Steve said "He is sending you a blue heart shaped balloon" This is odd, as mine and Jamie's favourite colour is pink, so it should have been a pink balloon... I do have a purple heart shaped pillow that Jamie bought for me, and Jamie did get his colours mixed up, so who knows!!!
Then we got a message from Dave's granddad, which is Jamie's great-grandfather. We'd told Jamie all about him, and that he'd look after Jamie.
Pat, Dave's mum, got a message from granddad Jim, to say he was looking after Jamie, and not to worry!!
Jamie also said to tell me not to be scared, which made sense, because I'd though I had heard him upstairs a few days before, and had shuddered and been a little freaked out. I took this to mean that Jamie intended talking to me directly maybe, and went home happy, half expecting more surprises at home...
That's just what I got!!!
Charlie and I were sat together on the sofa; he was watching a video while I was online... I thought I saw someone stood in the lounge/hall doorway, and without looking up, assumed it was Dave. Then I went to Beebo's site, and his Zeocast photo show hadn't been working for a while, and suddenly kicked in, very loudly!!
Just then I saw movement and looked towards the door, to see a watery/heat-wave type mass moving my way.
I thought my eyes or contacts were playing up, and looked around, and nope, they were fine. Then Charlie and I both reached out our hands to feel the area/mass, and felt nothing. Then Charlie was getting scared and backing up the sofa, so I tried to shut the music up on Beebo's website, and as I did, the mass disappeared behind my laptop lid!
Amazing, and breathtaking!! I was stunned for a moment, before rushing to tell Dave. While we stood in the kitchen, I kept getting glimpses of the mass again, like it was rushing around us and up and down the hallway. Jamie often ran around like that when he was excited.
Next I saw the same, while sat in the bath... he/it was trying to open the boys bedroom door, but the handle was only moving about an inch, so I guess he wasn't strong enough yet to open it.
Then I saw the same stood in the downstairs toilet doorway, as I sat on the throne, but it was taller... Dave's mum suggested it was Granddad Jim, as they are together!!
Most of the next week was a blur, as we stumbled on...
On Tuesday Charlie started Nursery. He's booked to go 2 half days per week. Originally planned to be afternoons, but I discovered he's too tired for afternoons, so switched him to mornings.
Nursery went well for Charlie... I stayed with him until he was happy enough to play, so I could sneak out.
On my return, he was playing happily with the other children.
He also went on Thursday, but didn't settle, so I had to bring him home again after over an hour. We were due to leave for Holland that day, and I hadn't done any packing!!!
We set off at Midday, and dropped Charlie off with Granddad Jeff in Taunton, before heading to Bristol airport for our 5pm flight.
We got into Amsterdam Schipol at 7.15pm, after an hours flight, and hour time difference.
The airline managed to break the handle on our suitcase, so getting onto a train, then off, and walking the short distance to our hotel in the centre of Amsterdam was a struggle!!!
We had a nice weekend, a lot of walking, seeing the sights, avoiding the weirdo drug dealers!!!
On Friday night we went to The Ministry of Sound at a nightclub called Escape. It took us over half an hour to walk there, and it was hot inside. Dave danced for a while, then I noticed there were silver helium balloons in the club, and some, near the DJ box, had a blue light shining on them, which made them look blue!! My blue heart balloon!!!
Later that evening, we were wandering through the Red Light District; it was bustling with people. As we walked down a narrow alley, we passed another couple, quite young, like us, and the woman had one of the silver heart balloons, like we'd seen earlier. As we passed, it flew away from her, came off its string!!! And floated away into the sky!!! Very weird!!! Cheeky old Jamie!
On the Sunday, we checked out of our Hotel, and caught a train to Haarlem to go to my favourite shop, and an old coffee shop haunt. We left our luggage in a locker at the train station, and stopped in the coffee shop before walking into the centre of Haarlem to my shop.
My shop was closed for refurbishment till the 28th!! And also, there was some type of marathon on, and crowds of people!! We had to go way out of our way to get round the huge event, to get to the other shops, and then took ages to get back to the train station, so we were behind schedule!!
The trains to Schipol weren't every half an hour, as we were told! We needed to change at another station!! At the changing station, we couldn't get on the connecting train, because everyone was stood in the doorways, instead of going into the carriages!! The next train was meant to be 10 minutes, but was delayed for over 30 minutes!!!
We reached the airport, for our 4pm flight, at 3.45!! Needless to say, they wouldn't let us check-in!!
Luckily, we got on stand-by for the next flight, and didn't have to pay!!
We managed to get on the last flight, and were in 1st class!!!
I've spent this week trying to build a daily routine, with me and Charlie and Frodo. Trying to give Frodo 2 walks a day whenever possible.
I'm working on the mornings... it helps when I go to bed earlier!!!
I have been taking my medication regularly, and on time, and I have noticed a slight improvement in my moods, and coping.
Some days are worse than others... I drove past the school while the children were all arriving on Thursday, which I will avoid in future... I remember meeting Jamie from school; his teacher would keep them halfway up the steep path, until parents were in view, then they'd be released.
Jamie would come down, picking up speed from the steepness of the hill, and I'd always remind him, "Don't run!!" cause I was terrified that he'd fall, as kids did every day, that ran carelessly down the hill from the school.
On Tuesday afternoon, I was in the kitchen, when I heard Jamie's voice call my name. I went into the lounge, to find Charlie trying to pull Jamie's Monkey off the chair!
The main site should be back up properly by Tuesday. I have changed providers, and have to reshuffle the files onto the new server.
I will try and update again in a couple of weeks, although it's not going to be very exciting these days!!!
Love Kelly
XXXXXXXXXXX
Thursday, September 29, 2005
Sorry.... I lied!!!!! Well not actually, I forgot that it was going to be a busy day.... have a friend over, so will try to update tommorrow..
The main site is down temporarily until the new provider starts service.... the old host, 1and1.co.uk charged me £60 for extra traffic that came to the site when Jamie passed away!!!! A bit cheeky I think, considering that I have no idea what 50mb of traffic/bandwidth is!!!!
Love Kelly
XXXXXXXXXXXX
Wednesday, September 28, 2005
Still here..... will update tommorrow!!!
Friday, September 16, 2005
This is going to be a long one, as I haven't updated for a week!!
Thank you to everyone who came to the funeral last Friday. I'm sorry if I didn't acknowledge you, or even look at you, I found it easier not to look around, and I wanted to stay strong for Jamie.
I noticed the priest was struggling at one point, and it nearly set me off. I did have a quiet tear or two, but managed to stay composed. I was scared that if I started crying I would never stop, and I wanted to remember the day.
I'm glad I did, it was beautiful, and perfect, and except for the fact we were burying our little boy. I'm sure he was smiling down, pleased with his send off. I heard someone say that not even Princess Di got such a send off!!!
For those who didn't see; we had a carriage for Jamie's small wooden coffin, hand painted with toy soldiers, pulled by two white horses.
We left from home, with Police motorbikes leading, then two motorbikes behind that, then the family cars, with more motorbikes, and police motorbikes at the back.
The motorbikes were there because Jamie won the hearts of the SMR Club (Somerset Motorbike Rally Club). He first met them on his special day on Tuesday 7th June, in Taunton. Then he was invited back on Saturday 16th July, to wave off a huge rally of around 200 motorbikes. Both times the local radio and newspapers were there. Jamie had two special friends from the SMR Club, Dave and Gary, both policemen. Dave had played a huge part in arranging the first special day, and Gary, who had been on holiday and missed the special day, went to the circus with Jamie.
Jamie used to call them Policeman Gary and Policeman Dave. He even made them badges with those names on, which they wore with pride.
We had a service at Our Lady & St Patrick's Church. First Father Jonathon greeted everyone and sprinkled Jamie's coffin with Holy water, and placed a crucifix and book of the Gospels on top. Then everyone sat and listened to Mariah Carey - Hero. After a reading from 4: 7-15 - Untarnished Life, this is ripe old age, we all sang "Be Still My Soul".
Then was a gospel reading from Jamie's Headmistress, Mrs Hall. She read 5: 1-12 Rejoice and be glad, for your reward will be great in Heaven.
After the Lord’s Prayer, Uncle Sean was first up to speak, followed by Grandad Jeff, and Policeman Dave. They all said some word of affection about Jamie.
Father Jonathon then stood next to Jamie's coffin and prayed, before sprinkling it once more with Holy Water and waved incense around it. The incense was almost overpowering and made my eyes water!!
As the Pallbearers carried Jamie's coffin back to the carriage, Celine Dion - Fly was played.
The Carriage, with escort of motorbikes, then went up to the local cemetery for a short private family burial service.
At the wake, a video of Jamie's special days were played, and balloons were released.
Since the funeral, we have mostly stayed at home, having lazy days, or being slobs, as most would say!!
I have done some gardening. And it's true what is said; gardening is good for the soul; I pruned a Honeysuckle to death, and felt much better afterwards!!!
My dad and I went out to look at a new car, which I liked. So we returned the next week and bought it. On the way, we got stuck behind a slow driver, in a Rover. Dad was swearing and cursing at him most of the way, and then he nearly hit a moped on a roundabout, which had right of way! Dad shouted at him, and I got cramp in my toes, from slamming my foot on the imaginary brake pedal on the passenger side!!
On the way home, I drove the new car; a Ford Escort Finesse TD, trying to make sure I didn't drive slow, like a woman, and get moaned at from Dad.
When we got home, Dad said to Dave, "Your wife drives like a nutter!" To that Dave replied, "She's your daughter! And you taught her to drive?"
I didn't nearly hit a moped!!!!
We've had a few signs/messages from Jamie....
1st was in the hospital, while we were in the parent's bedroom, waiting for the nurses to wash and dress Jamie.
I was laid on the bed, with my head on Dave's lap, and I could feel Dave's breath on my face, as he was looking down at me.
Dave's breath smelled of Jamie, and made me feel calm and comforted. I smiled, and after a few minutes, told Dave that his breath smelled of Jamie. Dave may have changed his breathing, as it stopped then.
2nd was Dave hearing Jamie say his name, one night in bed, before going to sleep.
3rd was a message through my friend Mel.
Jamie made friends with a boy called David, while in Bristol Hospital. David had Osteosarcoma, and relapsed, then died in January. Mel has a friend called, whose sister is psychic, called Rosemary. Mel has had a message from David, through Rosemary, shortly after David died. Rosemary had only met David once, many years ago.
Anyway... I had said to Mel that I was worried that Jamie was scared or upset, and wished I knew he was ok.
The same day, at the hospital, when I had signed the forms to release Jamie to the Funeral Directors, the nurse had asked if I wanted Jamie's central line to be removed.
I had said yes, gladly, as Jamie had often said that he would like to go swimming when he had his line out, and I'd had to tell him that he wasn't having his line out, because he wasn't getting better.
Mel phoned me one evening, a few days later, to say that her friend was talking to her sister Rosemary on the phone, and mentioned that one of David's friends had died. Just as she was telling her, Rosemary said she could see a small boy before her. She said he was little, with blonde, rebellious hair, sat cross legged, and smiling. He didn't speak to her, but she said he had nothing on but a pair of swimming trunks.
When Mel told me, I didn't click, and said it must have been his pull-ups, as Jamie hated clothes and mostly just wore a pull-up.
Later when I told Jamie's Nana Pat, she reminded me about his line being removed, and so it must have been swimming trunks after all. Jamie was thanking me for having his line removed.
4th was a message through Dave's Uncle Danny, up country, near Grimsby, from a man works with Danny, but doesn't actually know.
Danny has been approached by this man once before, and given a message for Dave's Nan, from his deceased Grandad.
This time the man said he kept seeing a little boy, with gorgeous blue eyes. He had said that he is happy, and can do all the things he couldn't when he was on the line.
We have translated it to; he can do all the things he couldn't when he had his line in.
I am off to a clairvoyant evening, with Nana Pat on Sunday. I'm hoping for a message, and hope I don't get too upset if he doesn't make contact. This clairvoyant doesn't see but hears, and says that if we think a message he is saying is for us, we should put our hand up, and only reply Yes or No.
I will let you know....
I'd also like to thank everyone who has sent cards and flowers, and signed the guestbook.
I have met a few people, who know me from this website. It's strange to think that people might recognise me, and I don't know them. A few people have stopped me around Teignmouth, to say "Hello" and give condolences. They've said they feel they know me from the website, and struggled to remember that I wouldn't know them!!
It is nice to think that Jamie has touched so many people's hearts. I never really realised how much impact he had on people... I always felt too biased to be able to properly imagine it.
I hope that Jamie has taught people the important lesson that he taught me.... That everyday is precious; treat it as your last. Always tell those closest that you love them, whenever you feel it.
Jamie also taught me to appreciate the simple things in life; a rainbow, sunset, flowers, being with family, laughter, and memories.
He has changed both Dave and I; myself definitely, have chilled out, and I don't worry about things as much as I did before. My new belief is; why waste energy worrying about things we have no control over?
I appreciate more the time I spend with Dave and Charlie; and find myself laughing at Charlie's mischief, when before I would have gone mad!! I'm more inclined to dash and grab a camera to photo the event, which there is evidence of on the Naughty page!!!
I will be putting poems that have been sent to me, and the songs and readings from Jamie's funeral, on the main site soon. One of the poems is all about seizing the day, and telling people you love them before it's too late, and having no regrets.
I had a huge influx of visitors to Jamie's main site, from the day he died, for a week, and as a result, have been charged £60 for excess traffic/bandwidth!!! Cheeky!!! It goes without saying, I am in the process of changing web space providers, so don't worry if the site has a few blips... it's best to save this news page in your favourites, just in case. I am just waiting for a registration authorisation code from my current supplier, so I can transfer. Funny how they haven't sent it yet. I sent them an enquiry the same day as the request for the code. They have answered the enquiry, but still no code!!
Charlie is now registered with a nursery, called Happy Days, and will start Tuesday and Thursday afternoons next week.
He still asks for Jamie, at least once every day. Normally when we arrive home in the car, or when he gets up in the morning. I tell him, "Jamie's gone" and he just asks for Frodo, or Wo-wo as Charlie says it.
Today is Dave's birthday, he is 29!!! Old git! Wow, we'll both be 30 next year; scary!!!!
I bought him a poker table, decks of cards, T-shirts, and a surprise trip to Holland next weekend!!! We leave on Thursday evening, and return Sunday evening. Charlie is going to stay in Taunton with Nana Pat and Grandad Jeff, and Nic is going to Dog-sit Frodo.
We went to Holland for our Honeymoon, and loved it. We stayed in Haarlem, near friends, and ventured into Amsterdam most days. This time we are braver, and are staying in central Amsterdam!!
Wow, I think this is the longest ever!!
I have updated the photos page (Link at top - http://www2.caringbridge.org/europe/beebo/photo.htm) with photos of Jamie's Coffin, Horse and Carriage, Grave and flowers. We have to wait 5 months for the ground to settle before we can put his headstone up, or else it may subside. For now we have a simple white marker, and we will be making a wooden cross. The grave is covered with his flowers, which are gradually dying off, and I have put a couple of windmill thingies, a bottle of Lucozade, and packet of Tic Tacs there.
I also have some new photos of the boy's Baptism, which I will add soon. And I also hope to put some short movies on the main site.
-----------------------------------------------------------
JULIAN - Can you email me, or phone me (get my number from Dave Wallis) I would like a copy of the Funeral footage when it is ready... Thank you XXXXXXXXXX
-----------------------------------------------------------
I will write more in my next update... not more than today, I mean some more!!!!
Love Kelly
XXXXXXXXXX
Wednesday, September 7, 2005
Funeral information is now available
Funeral Arrangements
Thank you to everyone who has sent cards.
And thank you Helen, who sent a Frog on a spring... even though it didn't arrive till this week, Jamie would have loved it, and it made me smile... I've hung it in the dining room window XXX
Love Kelly
XXXXXXXXXXXX
Friday, September 2, 2005
Yeah, we're still here.....
I spent yesterday doing practicalities; speaking to the funeral director, signing forms to release Jamie's body to the funeral directors, death certificate, dog food, laundering Jamie's Batman Pyjamas for the funeral director to dress him.
I managed not to cry until I went to bed yesterday, then it was the whole day catching up on me...
At the hospital, I was asked if I would like Jamie's central line removed, to which I almost jumped with joy, and said, "Yes Please!!"
Jamie had been talking about getting his line out to go swimming, so I knew it is what he'd want.
Later on, I got a phone call from a friend, passing a message on from her medium... Jamie had appeared to the medium, sat cross legged, in nothing but a pair of swim trunks, just smiling, he didn't speak... I hadn't told my friend about his central line.... spooky!
Today I was a bit more tearful, expecting to hear his voice, and see him come down the hallway, half forgetting...
I miss him already...
Father John came over to chat about the arrangements for the funeral service, which I won’t divulge... you've had enough tit bits, and I want the day to be a surprise, as much as possible
Late this afternoon, we drove to Woolacombe beach, with Dave's step-brother Gav, and his wife Kim, and son, Harry, and Charlie of course.
Harry is Jamie's cousin, who is 6 months older.
Dave and Gav went off surfing, while Kim and I watched the 2 boys play on the beach, and in the stream.
Just before the sun set Dave and Gav came out of the water, and we returned to the car park, for a BBQ before setting off home.
Dave and Gav went in Gav's van, and Kim and me took the boys in our car.
On our way through Barnstable, I missed a turn, and decided that rather than turn around, I would "wing it" and try and get back on route by self navigating!! This took us 6 miles out of Barnstable, into country lanes, and a tiny village, with an unpronounceable name!!!
I stopped the car on a hill, to read the map, and snapped the hand-brake cable!!!!!!
I managed, after stalling the car once, to get us going, up hill, without the handbrake, and were soon back on track, only to have to phone the men, and ask if they could find some bricks for us when we got home, to stop the car rolling off our sloped driveway!!!!
Needless to say, we met a humiliating reception of mick taking men on our return!!!!
Right..... Funeral arrangements... These will be duplicated to the main site tomorrow, after update, and I will try and get a map done.
Friday 9th September at Our Lady and St Patrick’s Church, Teignmouth, for service at 11.30am
Parking opposite church, in massive coach car park, same as Baptism. Arrive a little earlier.
Internment/Burial will be private, for immediate family, and by invitation to extended family only.
Wake to be held at Teignmouth Rugby Club, same as Baptism.
Time to be confirmed.
Dress Code= NO BLACK! Children may wear Superhero costumes.
We will be having a balloon release, so please bring eco friendly helium balloon to Wake
If anyone would like to say a few words at the Church Service, or at the Wake, please let me know, so I can fit you into the schedule.
There will be a presentation of photos and video of Jamie during the Wake.
Flowers or Donations (for Oncology Wards at Bristol and Exeter) To T.Clarke Funeral Directors, Teign Street, Teignmouth
We are expecting a huge turn out, so please can people be respectful of Jamie's family. There may not be room for everyone to be seated in the church, so some may have to stand at the back. Please allow Jamie's family and extended family to enter and be seated first.
We will be handing out business sized cards, with a photo of Jamie on, to people that we'd like to come to the burial. Father John will remind everyone that the internment is private, and only immediate family, and those who have been given a special card, will be welcome to join us at the cemetery.
I will put these details on the main site tomorrow, with maps and stuff
Love Kelly
XXXXXXXXXXX
Wednesday, August 31, 2005
The Warrior has gained his wings....
At 3.30am this morning Jamie finally passed away, lying next to me and his daddy in hospital. He was asleep and peaceful.
Funeral arrangements look like they will be next Friday, but it's to be confirmed.
We took him into hospital on Monday evening, where he was put on a Morphine pump, with extra drugs to assist his respiratory system, to prevent distress.
Yesterday evening we notice he was having difficulty breathing, and turned up the morphine slightly. He was still aware of us, and responding, although he had become unable to speak, and we doubted he could see at that point, but he remained comfortable, as we held his hand and spoke softly to him.
The night staff arrived, and we noticed that none of his regular nurses were on; we had a nurse that knows Jamie, but hasn't cared for him recently. This was probably for the best.
In the early hours we knew he was going, and stopped fussing to give him some peace. I lay beside him, snuggled in, and Dave lay next to me. At 3.30am, the nurse woke me to say that Jamie had gone. We stayed with him for a while before leaving to have some fresh air, and nicotine, while the nurses washed and dressed him in his Jungle book Pyjamas.
When we returned to his room, he was looking all fresh and clean, half sitting up in bed, cuddling his monkey, with a happy look on his face...
We left the hospital alone, as we couldn't bear to see the porters take him away.
We are going to have some time to ourselves, please don't feel you need to phone, I know there is nothing anyone can say, so we'd rather no-one rang, just to sound awkward, silence speaks for itself, we know everyone cares....
Love Kelly
XXXXXXXXXX
Monday, August 29, 2005, UK Time =20.39
Jamie is nearing the end of his journey now, we noticed another definite change in him this evening; his breathing has slowed right down, to occasional sighs, his eyes are glazing over and he is hard to rouse/wake.
Today he's been terribly sensitive and tearful, and at one point said he's fed up with lying down all the time.... We try and change his position often to prevent pressure sores, and this upsets him... we also have to try and keep him as upright as possible, to stop his lungs filling with fluid, which would cause him discomfort and difficulty in breathing. When he lies flat for any amount of time, he starts to rattle when he breaths.
This morning we helped him downstairs to his spot on the sofa... Jamie still insists on walking whenever he can... and has become quite stubborn. He sometimes asks to be carried, and it has been awkward lately, as he has lost so much weight, his bum is boney like an old mans, and we've had to adopt a cushion to put under his bum when we do carry him.
I put a video on, as I have done so for a while now; one that I know Jamie used to enjoy... today was "Casper" first.
This afternoon Jamie asked to help make a cup of tea, so I carried him into the kitchen, and he wanted to sit on the sideboard. He swayed, trying to keep awake, while I made a cup of tea. Then Dave brought a chair in from the dining room, and we padded it up with cushions so Jamie could sit with us while we chatted to a friend by the back door.
Then Dave took Jamie into the computer room, and he sat on his lap while Dave played GTA. Jamie struggled to stay awake, but couldn't, so eventually we returned him to his spot on the sofa, where he slept peacefully for some time.
This evening, all the grandparents came to visit, and Jamie sat up and tried to stay awake but kept dropping back off to sleep... it's probably the morphine..
It's been painful to see my baby looking so terrible and thin. Today he's been suffering, and miserable, it was obvious to see by the look on his face. Bless him, he is still fighting, and trying hard to stay with us...
Yesterday he slept for the majority of the day. We managed to persuade him to have a bath with Dave, after he'd refused for the last few days. Dave sat him on his lap, and I washed what hair he has left. Then he stood up and insisted on trying to wash himself, and did struggle, but took it well.
We noticed that he has the start of a pressure sore at the bottom of his back... the skin isn't broken yet, but was red, so we'll have to keep an eye on it. At hospital he has a special mega soft mattress, which we have been allowed to bring home for his bed upstairs, so hopefully it will help.
After his bath, he lay on our bed, wrapped in a towel, and let me change his dressings on his line, and clean his ears out.
On the way to the hospital, we stopped at Pizza Hut, and ate inside, at Jamie's request.
Jamie only managed to eat one small mouthful of pizza, which I don't even think he swallowed, and so the rest was put in a box for us to take home.
Charlie had fallen asleep in the car, and we'd taken him into Pizza Hut in his pushchair, and as we got back into the car, Charlie woke up!!! Typical! So we drove through Kentucky Drive Through to get Charlie some dinner.
I asked Jamie if he wanted some Popcorn chicken, and to my surprise, he said yes and some corn on the cob!!!!
So once at the hospital, Jamie and Charlie sat on the bed together and shared the Kentucky and Jamie attempted to eat some Popcorn chicken and corn on the cob... He probably managed a couple of bites, then lay down and returned to his peaceful slumber.
What happened on Saturday? I am struggling to remember!!
I know that Charlie went off to Dartmouth Regatta, with my mum and Dad, and returned yesterday evening (Sunday)
Apart from our usual trip to the Hospital, it was a quiet day, where Jamie slept again.
Tonight, Dave and I decided to take Jamie into hospital, where he'll go onto a Morphine drip continuously. This means he will sleep and won’t have to wake for medication... it is becoming hard to wake him now.
We feel that Jamie is starting to suffer emotionally, and can't bear to see him this way. He'd be more comfortable in hospital, where we wouldn't have to carry him up and down the stairs, and into the car everyday for platelets.
His HGB was around 10 on Saturday, so I suspect that by Wednesday, it would have dropped to around 8.
We won’t be giving Jamie any more HGB blood transfusions, but will keep giving him daily platelets to stop him bleeding. If he doesn't have platelets, he will bleed from nose, eyes, and also internally, which is horrific.
Jamie is in no state to see anyone; we will only be having close family to see him from now on, unless we have personally invited you.
I doubt I will have a chance to update before Jamie passes, as I want to stay by his side. He'll only be sleeping, and I will fill everyone in ASAP.... I will post the news when he passes when he does, and we return home without him...
Love Kelly
XXXXXXXXXXXX
Monday, August 29, 2005
Sorry for not updating, I've been busy sorting, cleaning and tidying the house.. Although if you saw the state it's still in, you wouldn't think I had been doing so!!!
It seems that as I move to the next room, the last room gets untidy again!!!
Jamie is still sleeping all the time, no change to his condition. We are off for platelets this evening at the hospital, so I will do a proper update when we return.
Love Kelly
XXXXXXXXXX
Friday, August 26, 2005
Please excuse any strange happenings on Jamie's main site, www.beebo.info; I have only just got all the FTP settings to upload changes after I lost them when my laptop died!!!
Funny, I have found 2 or 3 ways to update the main site tonight, all whilst trying to find an IP for the server!!!
I am slowly altering and updating parts, and today posted some photos for a friend of Jamie to copy to her computer.
Jamie has been asleep for most of today. He woke briefly this morning, and Dave helped him downstairs to his throne on the sofa, which consists of a double quilt, folded up to make a bed, with a Scooby Doo cot bed quilt, and Scooby Doo Pillow. It's very soft and comfortable for him.
Nana Teresa and Granddad Paul came over around lunchtime, to deliver a sleeping Charlie, and spent some time in the lounge with Jamie, as he slept.
We've had to wake Jamie for his Morphine tablets today, and stayed asleep for his trip to the hospital for the platelet transfusion. He woke when his suppository was administered, and then was helped to the toilet afterwards.
This evening Nana Pat and Granddad Jeff visited, and Jamie woke up, and sat up to see his Ebay stuff, that he'd won while on an Ebay session with Nana Pat, and they were sent to her house.... There was a Power Rangers T-shirt and figure that he got for Charlie, a Power Rangers Flask, and a Star Wars twin pod racer toy also.
Pizza was demanded, but unfortunately, the Pizza Hut was closed by then, so he settled for a Hot Dog, and ate a small part of the sausage, before lying back down to sleep.
He slept lightly for an hour or so, and sat up a couple of times, to chat to Nana Pat, and shouted at Frodo!
Then slipped back into a deep sleep, snoring sometimes, and sometimes smiling, and talking in his sleep.
Later on this evening, when everyone had gone home, we noticed a change in Jamie's breathing. It has slowed, and has longer pauses between breaths. We checked Jamie's oxygen saturation and heart rate, and they have gone down slightly, which would indicate that his body is slowly winding down.
We have made sure that one of us, at least, is sat with him at all times, in case he decides to slip away, we would hate him to go alone. We've been softly talking to him, while holding his hand and sometimes stroking his head, telling him how proud we are, and what a brave boy he is, and how much we love him, and saying it's ok to go now...
Tomorrow we will take him into hospital, and talk to the doctor about what happens next. If he isn't able to wake to take his Morphine, he will go on a drip, which may mean he has to stay in hospital. This we don't mind, wherever Jamie is comfortable.
We have decided that it's definitely time to stop giving Jamie any more blood transfusions, they would be pointless, and as the last one didn't have much affect. We will continue platelet transfusions, to stop him bleeding, and continue to keep him pain free with morphine.
This is pretty much goodbye to Jamie now, and for those who haven't had a chance to see him recently, it's probably best that way, as he looks nothing like the Jamie we all know, and I doubt he'll wake much from now on.
Of course, family who have regular contact with us may have already made an arrangement, that’s still fine.
Please respect our time with Jamie now, as his family have a chance to say their goodbyes.
Friends and Family of Jamie, and school friends included are welcome to the funeral, which goes without saying.
We have decided to have a balloon release during the funeral proceedings, and would like anyone who wants to release a balloon, to bring one along, polo’s optional.
We've checked with all the relevant authorities, coastguard, air traffic control, and have full permission to do so.
On a lighter note.... Frodo went to the Vets this morning, and has been castrated!!! When we got him, we decided to leave his bits intact, as they don't always require castration, unless they have behaviour issues.
Last week we had behaviour issues, starting when Frodo ran away from me during a walk, and returned to the house by himself, leaving me still out looking for him!!!
Frodo has only ever run off once before, as a puppy when he got scared of some boys at the park. He also ran home on that occasion, quite clever really, but I cringe when I think how he crossed the road to our house from the nature reserve!!!
Since his running off last week, he has whined during the day, desperate to go walkies, and when I have taken him, on a lead, he has gone mad sniffing and spraying/marking, more than usual.
I found out that there were at least 5 dogs in the area, either due in season, in season, or just been in season!!! Females are usually in season for 3 weeks, and we faced the prospect of Frodo being desperate to mate, and running off for god knows how long!!!
Dogs can smell Female pheromones, which they let off when in season, from a mile away!!!!
So we decided it's best he gets the chop!!!
I picked Frodo up from the Vets this evening, and he seems fine, not bothered in the slightest. I'd bought him some giant soft toys to play with, as a sort of "get well", "sorry about your balls" present, and he got lots of love and strokes.
Later on, he began licking his stitches, so after phoning the vet, we gave him some Paracetamol, for his discomfort, and he is now settled and snoring under the stairs.
It's Frodo's 1st birthday on Sunday!!!!!
I will try and get round to more new photos, I promised someone I'd show the photos of Jamie's sunflower that he started to grow at school. It's massive!! At least 8 ft tall!!!! It was too tall for the porch, outside, so we had to move it, and now it's flowered.
We plan to take seeds from it each year, to grow another next year, as I don't think they come back after a year.
If we end up in hospital, I'm sure I will find a way to update news to you. I do it online, and not through a programme anyway, so wherever I can get online, I will.
Thank you all who has signed the guestbook, especially Green Watch, I will read the messages to Jamie, I'm sure he'll be chuffed.
Love Kelly
XXXXXXXXXX
Thursday, August 25, 2005
I nearly went off to bed without updating!!! Shame on me!
I got watching "Basic Instinct" and totally forgot!!
Yesterday we took Jamie to Kingswear, to watch the Red Arrows fly over Dartmouth. Jamie didn't want to go, he said at the last minute, but we were all ready to go, and had arranged to leave Charlie with my mum, who we were meeting there, so we went anyway.. I suspected Jamie was just having last minute nerves.
Jamie watched the Red Arrows from inside the house, where we were, on a hill overlooking Dartmouth across the river, through huge patio doors. Unfortunately most of the display was happening overhead and behind to start, and Jamie got fed up, and asked to go home.
We packed up our stuff, and got into the car to leave, just as the Red Arrows flew low down, and we could see them level with the house!!!!
After stopping off at home, to feed the dog, and grab a cup of tea, we went to the hospital for Jamie's blood and platelet transfusion.
Jamie slept through his transfusions, as usual, and we spoke to the doctor, as we do daily, about Jamie, and his current condition.
We discussed our concerns that Jamie may not understand totally about his cancer, and that he will die soon. Dave had explained to Jamie that when he has had enough, just say, and we will stop bloods. This may have given Jamie the impression that we are in control all the time.
The doctor spoke about child's concepts of death, and how Jamie may be too young to understand. He suggested a different way to explain what will happen to him... that he will become a ghost/spirit, and wont actually leave us. This is what I think would make it hardest for Jamie to let go, the fear of leaving us.
Jamie has watched Casper a few times, and before he relapsed, we chatted about Casper, and ghosts, and it was a concept that Jamie understood, so we decided to use that idea from now on, for Jamie to feel more at ease with the idea of dying.
I said to Jamie this morning, after he wiped a bogey on my arm, "When you're a ghost like Casper will you fly around the house leaving bogeys everywhere?" Jamie said, "Don't be stupid, ghosts don't have bogeys!!"
Jamie's transfusions finished around 2.30am, then we took him home, as the dog was home alone.
Today we woke late as usual, and Jamie was awake for a short time, to see his new Lego arrive with the postie.... Star Wars Jango Fetts Slave.
Dave set him up some cushions on the floor so Jamie could lay and watch him build it. Jamie fell asleep while Dave was building, so was moved back to his spot on the sofa.
Jamie woke for the journey to the hospital for platelets, and kept telling me to shut up in the car... apparently my talking was stopping him from going to sleep.. Dave's wasn't, and I even got told off for saying, "Yes" to one of Dave's questions!!!! At one point, when I was told to shut up, as he was trying to sleep, he had his finger up his nose, so I said, "You're not trying to go to sleep, you're picking your nose!!!"
Jamie slept through his platelet transfusion, the Piriton that he has, to stop allergic reaction to the platelets knock him out!!!
Lee and Angela came to the hospital today, and then followed us home, where Jamie slept.
Jamie woke breifly at 11pm, and went into the computer room to play GTA with Dave, before returning to sleep on the sofa. I spent the evening sat beside him, on the laptop, and watching TV.
I can see Jamie's energy fading, despite a blood transfusion yesterday, when he had a count of 9.3 before it! I can only imagine that he will wake less and less, and soon may be time to stop blood transfusions and let him slip away peacefully in his sleep, before he starts to have fits, or painful complications.
Today we had to increase his Morphine dosage, as he was suffering bad leg pain at the hospital last night, which required vigorous rubbing, and a cushion under his knees.
His Liver tumours are so big now, that his stomach is rock hard, and swelling past his rib cage. The tumours in his face are getting bigger, but can only be felt, and not seen yet. His hair has nearly all gone, and the veins in his head stick out... he looks like a baby chick, with his bruised bulging eyes, and almost bald head... it's not the same Jamie anymore
Love Kelly
XXXXXXXXXXX
Tuesday, August 23, 2005
Another late lie-in!!!! We woke, and then woke Jamie around 2pm this afternoon.... not sure why we're sleeping so long, we're not getting late nights!!
Jamie requested a Hot Dog for breakfast, but didn't eat much of it. He took up his usual spot on the sofa.
Jamie spent most of the afternoon playing computer games with Daddy, and then we went to the hospital for platelets for about 4,30pm.
Dave and I had another talk with Jamie today, and explained to him that the cancer was too strong and the doctors can't make him better, so he will die. We're not sure how much Jamie understood, or heard, as he seems doped up on his Morphine, and is pretty deaf in one ear.
We explained that he will go to sleep and wake up in Heaven, and not to be scared, it won’t hurt, and we promised to stay at his side, and make sure that from now on, at least one of us is by his side.
Jamie told us that he doesn't want to die, and isn't ready to go yet, so we will keep supporting him with blood transfusions as long as he wants to keep going.
Tomorrow the Red Arrows are flying over Dartmouth for the Regatta, and Jamie wants to see them, so we are going to a friend's house, to watch them all together with Nana Teresa and Granddad Paul.
Tomorrow night Jamie is going into hospital to have blood and platelets overnight, then the next day's platelets in the morning, which should save us a trip.
After we finished at the hospital tonight, we stopped to drop a birthday card off to Auntie Kathy, and Uncle Glen came out to the car to talk to Jamie. Jamie was tired, and spoke for a short while before saying, "I just wanna get home!" - I love kid's bluntness!!! Luckily Uncle Glen understood!!!
We picked up Nic & Chris on route home, and were joined by Lee and Angela. Jamie played computer games for a while, before helping Dave to play poker with the boys.
Nana Teresa and Granddad Paul came over and brought Charlie back, as I'd been missing him!!!! We had a bath together before he fell asleep on my lap while watching "Lake Placid"!!!!!
We're hoping for a good day tomorrow, if there's no update it means I'm sleeping at the hospital with Jamie, we haven't decided who's doing it yet, maybe both of us
Please can people remember to email their memories of Jamie? I've had 2 or 3 so far, and have been reminded of things that I'd forgotten, like when Jamie was in hospital, he used to watch videos upside down!!!!
Love Kelly
XXXXXXXXXXX
Monday, August 22, 2005
Jamie and I were up last today. Dave had got up a little earlier with Charlie.
I helped Jamie to get his clean Pyjamas on; Nemo, and I followed him down to the lounge, where he climbed up into the sofa, to return to sleep.
A representative from William & Triggs Stone Masons came to discuss Jamie's headstone design, and agreed to draw a sketch to send with the quote.
Jamie and Dave went upstairs to lie down in our bed while I did boring old housework!!!
After midday Nana Teresa and Granddad Paul came to take Charlie away with them for a few days. They stayed for a cup of tea before the left with Charlie screaming and resisting.....
Jamie didn't seem to mind, as he waved at the fence in the back garden!!!
Jamie was in a good mood, and helped to make a cup of tea for us all, stood on his stool in the kitchen.
Jamie and Dave lounged on the sofa, watching Tom & Jerry on video, while I sorted some photos into frames. Jamie was giggling at the video, which was nice to hear, as he's been so down lately.
Yesterday he said he was sad at being poorly, and feeling rubbish.
We took Jamie into the hospital around 4pm, for his platelets, and discovered that his level was already good, at 53. We decided to give him the platelets anyway, as normal level is 150.
On the way home we picked up pizzas, as normal!!!
Nana Pat & Granddad Jeff were waiting for us when we got home. Nana Pat brought Jamie's Storm Trooper outfit that she'd adjusted to fit Jamie, and was busy knitting when we arrived.
Jamie saw her knitting and requested she knit him a wiggly bag!!! So she had to stop her stuff and begin a wiggly bag for him, while he lounged on the sofa.
Granddad Paul arrived to sit with Jamie for a while, he and Jamie are very close, and Granddad is going to be one of the hardest hit when Jamie passes.
After all the Grandparents left, it was just the 3 of us. Jamie had been mostly asleep during the Grandparent's visit, and remained asleep still.
He isn't awake for long these last few days, and when he is, he's not too happy.
It hurts so much to see my little boy now, compared to photos of him just a few months ago, smiling and himself.
I found some photos of Jamie while he was in BMT in Bristol, and he was really chubby!! I also noticed he smiled through most of his treatment, and this brought tears to my eyes, realising how much he has changed, and how we don't notice when we see him everyday.
Looking at Jamie tonight broke my heart, he's just skin and bones, and looks much like a baby bird in the face... All we've fought for so hard, to get rid of his cancer and it creeps back just when we're looking to the future again...
We doubt Jamie has more than a week, 2 at most left to live. He needs blood on Wednesday, will probably again before Saturday. He has tumours growing in his face and head, which aren't yet causing him pain.
Today we were given a special medication to administer in the event of Jamie having a seizure, something I hope wont happen.
We've decided to that we'd rather Jamie was in hospital when he dies. He needs platelets everyday, and there will come a point when Jamie isn't waking at all, and he will not receive anymore blood transfusions.
He will remain in hospital from this point; we feel it unfair to drive him back and forwards at this point.
Dave and I feel more comfortable being at the hospital with the doctors, and nurses to provide care and any medications necessary to ensure Jamie is comfortable at all times.
Thank you to everyone who has left messages in the guestbook, we appreciate all the support.
We don't know what we would have done without Jamie's site, to keep everyone updated; it gets hard to repeat things to people on the phone all the time. This site has definitely cut down the phone calls we get everyday, now only family phone, which we prefer, and it makes life just a tiny bit easier to cope with.
Love Kelly
XXXXXXXXXXX
Sunday, August 21, 2005
Jamie had a sleepy day today, laid on his throne of cushions on the sofa.
Both sets of Grandparents came to visit, Charlie came home, and Lee and Angela popped in, and Jamie still slept!!
Jamie did wake briefly to ask for pizza, but settled for a hot dog instead. So grandad Paul dashed into the kitchen to make one as fast as he could!!!
About 15 minutes after the grandparents all left, Jamie woke up, and asked to get dressed, in clean pyjamas for the day, or what was left of it!!
I carried him upstairs to his bedroom, where he chose his Superman pyjamas.
He then spent a while sat on Daddy's lap in the computer room, with Lee too, playing Half-Life.
We stopped and picked up a Pizza on route to the hospital this evening, and Jamie at least 1/2, minus crust!!
Then returned to sleep while the platelets ran.
It was a quick visit to the hospital tonight, fast nurse, so we were soon back home with 2 sleeping boys.
Love Kelly
XXXXXXXXXXX
Saturday, August 20, 2005
Today was another happy, special day that will twinkle in my heart when I look back in years to come.
It began when I woke up cuddled next to Jamie, in our massive family bed, at an ashamedly late time of 1.45pm this afternoon. I remember the affection and love that Jamie had shown me at times throughout our sleep together, when I must have come to slightly to feel Jamie snuggle, or grip my hand a little tighter, and his breathing sounding peaceful and content.
Jamie awoke happy, and eager to go downstairs with Daddy and me.
As we got downstairs, our 1st visitor of the day arrived, my friend Charlotte, who Jamie greeted happily.
Jamie happily chatted with us all, as cups of tea were made, and then asked Dave (Daddy) to play Lego upstairs.
Coralee, my other friend joined us next, and the 3 of us (Charlotte, Coralee and Me) Watched Jamie's special movies made at his Marine's day, and his Taunton Special day. We chatted about past times, and looked at embarrassing photos of ourselves.
Lee then arrived, with Angela, and I got more tea made!!! I hate to make cups of tea, and they don't taste nice, but if someone else is making, I can line them up like Beers and drink them all day!!! More visitors = more Tea!!!!
Jamie joined us girls in the lounge, as the 2nd video was 1/3 through, and lay down on the sofa, asking Charlotte not to talk and to move down the other end away from him!!! Charming I know!!! Charlotte didn't mind!!
Dave wanted Jamie to stay awake longer, and had noticed that when kept active, Jamie is less likely to fall asleep, so encouraged Jamie to go out with him, down to the Pier in Teignmouth, an activity Jamie enjoys. So off they went, leaving us 3 girls, chatting.
Charlotte left shortly after Jamie and Dave, leaving Coralee and I. Coralee was nursing a hangover, so sat and chatted with me, as I started to sort and Tidy Dave's junk yard computer room!!!
I had to phone Dave to let him know that Nana Teresa and Granddad Paul were on route, when Nana phoned to say they were coming with Pizza!!!!
And they all arrived back within minutes of each other, so I looked forward to more tea and bonus pizza this time!!!
After the pizza and tea, and chatting, and a little nagging from my parents, Jamie climbed up to his throne of cushions on the sofa, to go to sleep.
Nana and Granddad said goodbye, and headed off home, Dave went out to return a car he'd borrowed to get home the night before, shortly followed by Coralee to go home.
That left Jamie and I the chance to cuddle up on the sofa and go to sleep.... another favourite of my pastimes!!
When Dave came back, he took Jamie to the hospital for his platelets, another 2 hour trip for a short infusion!
On Jamie's return we all went up to bed to watch Thunderbird.... well I'll now be joining them.....
Love Kelly
XXXXXXXXXXX
Friday, August 19, 2005
Jamie treated us to another early morning again today!! 6.30 again, and was in a good mood, and chatty. Dave played computer games with him for a short while, and then he went back to sleep, on the sofa.
A family friend, and school secretary popped by to see us, and we chatted about this and that over a cup of Tea.
Jamie pretty much slept all day, and briefly woke to sit up and take meds, before closing his eyes and returning to sleep again!! He seemed comfortable, and in a good deep sleep.
Dave and I made the most of the sunshine, and sat in the garden together with a cup of tea.
Our friend Chris came over, and joined us in the garden for a chat in the warm afternoon sun.
Jamie woke up at around 3.30pm, shortly before Chris left, and was happy and talkative.
Dave exploited Jamie’s good mood, and attempted to comb and tame went into Jamie and Charlie’s room, and Jamie choose clean pyjamas for the day, and tame Jamie’s scarecrow hairstyle.
Jamie got washed, and chose clean Pyjamas for the day, shortie Woody/Toy Story ones.
I relaxed in the bath, listening to Dave reading Teenage Mutant Turtles to Jamie, in their bedroom. Dave was about halfway through when Jamie had heard enough, and said to Dave, “Don’t read any more”
Just as Dave and Jamie were going down stairs to find something else to do, Lee and Angela arrived, and after a cup of tea, and spent some time with Jamie and Dave, while I got ready to take Jamie to Exeter hospital for the days platelets, and a blood transfusion.
We stopped and got a Pizza from Pizza Hut, on route to the hospital. And I had a chance to talk with Jamie a little, to make sure he wasn’t scared, unhappy or anxious about anything.
After seeing the school secretary today, and hearing that the summer holidays end in September, Jamie announced, out of the blue, to me that he was going back to school in September, and would have his wiggly out.
I discussed with Jamie that he still needs his wiggly to have blood, and asked him if he knows why the oral chemo has stopped. Jamie assumed it was a gap between cycles, so I gently explained to Jamie that the oral chemo was not doing what it was meant to do, and that his cancer was getting worse, and making him more poorly.
Jamie asked me if he was going to die. An extremely difficult question to answer to a child so sensitive, and determined to fight. I explained that it is a possibility. A cowardly answer, but I felt that Jamie would become scared and upset to know this at present. I wanted to talk with Jamie more about the subject of death, and heaven, and try to make it appealing, and special, so hopefully Jamie won’t feel anxious, or reluctant to leave us.
We talked about Heaven, and I assured Jamie that IF he did die, he wouldn’t hurt, or be scared, and that Mummy and Daddy would be right with him, to cuddle him, and make sure he wasn’t scared.
I assured Jamie that Me and Dave, Charlie, Frodo, Cousin Harry, and everyone would all go to heaven too. I had to re-assure Jamie that we would all be there with him, so fast that he wouldn’t even miss us, and described it as “Magic Time”, almost like a “Magic Sleep”
We talked about people who are already in heaven, like his friend David, his great grandfather Jim, who was in the army, and had guns!!I tried to explain that they can see us from up in heaven, so will know when he is coming, and will all be there to greet him.
We have had previous discussions about Heaven, and I’ve tried to paint a picture in Jamie’s mind of this brilliant, special place, where he can play anything he wants, and will have so much fun!!
Jamie has previously asked me what if someone does something naughty in Heaven, and I explained that no-one does anything spitefull, disloyal and bad… I said that when they got to Heaven their bad and naughtiness would be taken away, so they couldn’t do,say or think anything naughty. And that is what makes Heaven such a great place, because every one is nice, kind, caring and considerate, and do nice things with each other. I said that you can do anything you want to in Heaven, like fly helicopters, and fast jets.
I told Jamie that I had to tell him all this, because I don’t’ want Jamie to pass away without being aware that it was going to happen, like we’d not been straight with him.
Jamie is very bright for his age, and we have always been honest and straight with him about his treatment and his Cancer. Dave always talked lots with him, and explained things to re-assure him, and we involved Jamie in making decisions concerning his treatment, to encourage Jamie to feel in control, and that he was actively fighting, while we supported and encouraged him.
We’d looked at the possibility of addressing it slowly and gradually, to try not to frighten Jamie, or upset him, and ruin the quality of life that he is currently having still.
I told Jamie that the Drs are still doing things to help him, and that he was getting precious blood transfusions that are actually keeping him alive.
I said that he is having Morphine, so he doesn’t feel pain, and we will make sure that he is always getting enough so he doesn’t suffer.
I assured him that Dave and I are both still very proud of him, for fighting so well, and that it wasn’t his fault that the chemo didn’t work, he did the best fighting ever, but the cancer is already very strong, and eats his blood up, and makes naughty lumps inside his tummy. So we had to keep fighting back and getting more blood to fill up again.
Jamie asked if he can have the big chemo, through his wiggly, and I explained that he could only have had that if the oral chemo had worked enough to make his body strong enough to have big chemo. I explained that his body is so weak from the naughty cancer, that big chemo would kill him.
Jamie responded well, and didn’t seem upset about it. And I left it at that for now, so Jamie can think about it, and maybe bring it up with Dave, or me to ask questions, and stuff.
We got to the hospital ward at around 6.30, and it was very busy, and there weren’t many vacant beds, due to 2 neighbouring wards being refloored, and most patients from them being treated on ours.
To add to the hustle and bustle, there were extra nurses on the ward, that had come from the neighbouring wards, to assist the temporaily relocated patients, and compensate for an increase in patient numbers.
Jamie ate about a slice of his spicy pork pizza, and was then sick in the toilet, which started a nose bleed!!!! Arrrrr!!!
Luckily, Jamie and I are pretty experienced in coping with sick. I held Jamie’s nose, in a pinch to stop the bleeding, while he made sure he’d finished being sick, before we corriorgraphed ourselves out of the bathroom, and onto his bed, without letting go of his nose.
Jamie’s nose bleeds when his platelet count is lower than 20, and when this happens we have to hold his nose for 10 minutes, and then check to see that the bleeding has stopped. We have prescribed medication to give to Jamie for a nosebleed to assist in stopping the bleeding. I checked Jamie’s temperature, which was normal, and I asked Jamie how he was feeling, and he said he didn’t feel sick anymore, which was good.
Our assigned nurse had been busy with another child when we arrived, and didn’t get round to coming in to Jamie until around 2 hours later!!! While I was patiently waiting, I got some of the other nurses, who weren’t busy, to take blood for a base count, and to page the porters to deliver his platelets to the ward.
Just as one of the nurses had finished giving Jamie his Piriton Dose, to cover him for allergic reactions to the blood products, Ruth had finished with the other child, so all she needed to do was start the platelet transfusion!
The porter is normally paged to deliver the blood, when the platelets start, so that it arrives around the same time as his platelets have finished transfusing, so he could get on and have his blood.
I think Jamie must have had a smaller bag than normal, and it only took around 10 minutes to complete.
I had brought lots to read, with me to the hospital, and Jamie had been playing on his Laptop and went to sleep before 8pm.
I struggled to stay alert, and keep reading, and dispite the noise in the ward, was becoming more likely to fall asleep, but managed to stay awake by tidying the room, emptying my handbag out, and re sorting it, pacing the ward!!
At 1.45am Jamie's blood transfusion finished, and we finally got home at 2am!!!
Good Night zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Thursday, August 18, 2005
On Wednesday morning, Nana Pat and Granddad Jeff were due to come over, and they were bringing Jamie’s cousin Harry to see Jamie briefly before they all set off for 5 days holiday in Cornwall.
Unfortunately their car broke down, on the way from Taunton, leaving nana Pat and Jeff stranded at Tiverton with Charlie, who’s a handful at the best of times.
After 7 hours of dealing with the breakdown recovery service, and waiting for a courtesy car, they rented another car and came to pick up Auntie Kim and Cousin Harry, before dropping in before setting off for Cornwall.
We’d postponed the trip to the hospital for platelets, for Nana Pat and co to get here, as long as we could, and in the end had to go without seeing them!!!
While Jamie was receiving his platelet transfusion, Dave and I talked with the Dr, to assess Jamie’s current condition, and to adjust medication plans as necessary to keep Jamie comfortable. We also discussed Jamie’s impending deterioration, and asked important questions about what we might see happen to Jamie, so we were ready to cope, and that it isn’t a shock for us. Needless to say that there were tears and it was emotionally difficult to address the issues that needed discussing, and to the face harsh reality of what draws closer everyday.
After we’d finished at the hospital, we went down to Teignmouth seafront so we could race his new Formula One Remote control cars, as we needed a lot of space!!!!
We met up with Tony, and spent around an hour there, which Jamie got fresh air, and was able to play with his remote control cars.
We’d totally forgotten what day it was; Wednesday, and Nana Teresa and Granddad Paul were due to visit at 6.30pm. We phoned them when we got home, at 8pm!!! They came straight over, and Granddad spent some time sitting with Jamie on the sofa while he slept. Jamie is not very affectionate lately, and protests at attempts to be close and cuddle, or any type of contact really, unless he initiates it.
Granddad and Jamie have always been close, and Jamie was always very affectionate and cuddly with him, so I could see that Granddad was finding it hard not to get upset in front of Jamie, and tried to find comfort in just being close for a short while.
On Thursday morning Jamie woke at 6.30am, and wanted to go downstairs to play computer games. Shortly after we’d gone downstairs, and began our extra early day, Jamie climbed onto the sofa and went back to sleep!!!!! We managed to resist the urge to return to bed ourselves for more sleep, and pottered around making the most the opportunity to get things done while Jamie slept.
Jamie must have been hungry for Pizza, as he appeared to be sleep-eating. He was using an invisible knife and fork, and was even chewing!!! He then put his arm in the air, and asked Dave to take something off him to put in a safe place!!!
Jamie’s arm will not usually relax, until someone takes the imaginary something out of his hand!!!!!
Jamie doesn’t normally sleep talk and be so animated, so it’s funny to see, especially when Jamie laughs in his sleep. Sometimes if someone laughs while Jamie is asleep, it will cause Jamie to smile, and looks amused.
Jamie went to the hospital for platelets at 2pm. I dropped Dave and Jamie off at the main entrance of the hospital, and went into Exeter for a contact lens check-up, with instructions to stop at Pizza Hut on my return to the hospital cause Jamie wanted a spicy sausage pizza, and had asked for one the night before, but it was late, and Pizza Hut had closed!!!
When I arrived at Jamie’s hospital room, Dave was helping Jamie on the toilet after he’d had a suppository.
Jamie had not opened his bowels for 2 weeks, despite having laxatives every day.
After a few minutes, Jamie came out of the bathroom smiling, and overjoyed to tell me that he’d had a poo!!!!!!
Of course I cheered, and congratulated him. I told him that I was very proud of him for being so brave.
I could see a change in Jamie’s mood immediately, and he was more chatty, and was even chirpy for the first time in ages.
On the way home we had another treat… Jamie sang along to his music CD, “Who let the dogs out” and even did the “woofs”
Dave and my hearts melted and it made me happy to see a little bit of the old Jamie, for a few minutes.
Once back at home, Jamie and I played Top Trumps together. After a while Jamie started to get bored, so I helped him to win.
Dave had popped out for some groceries, so I was enjoying this special one-to-one time with Jamie. It felt good to bond with Jamie, and to have him all to myself. He generally asks for Dave, and often rejects me, and pushes me away, which has been hard to cope with since relapse. When Jamie was a baby we had a very close bond, and spent every waking hour together. As Jamie has got older he has also bonded with Dave too.
When Jamie became ill originally, Dave took on the role as carer for Jamie, as I had baby Charlie, who was just 5 weeks old.
It made sense to work like this, and meant that Jamie became closer to Dave.
Jamie played GTA for a short while, before getting tired and going to sleep on the sofa. He seemed to be very peaceful, and having good deep sleep, with hardly any sleep talking, laughing or other animations.
Jamie needs a blood transfusion tomorrow evening. We hope to visit the Red Arrows if we can. They are refuelling at Exeter Airport and Jamie will have the opportunity to sit inside a real Red Arrow!!!
More new photos on their way….
Love Kelly
XXXXX
Thursday, August 18, 2005
I thought I'd better leave a token message, in case people are worried, and pulling their hair out!!
Jamie is fine, we're all fine!! I didn't manage to update last night, as by time Jamie went up to bed, it was too late, and I was too tired.. We'd had a busy, and emotional day.
I will do a double update tonight.
Tuesday, August 16, 2005
For those people who were upset by the photos of Jamie looking very ill, I apologise. Being with him everyday, I guess we don't notice the dramatic change, and we don't realise just how bad he does look. To us he's just Jamie, still.
Also, we've been in hospital with Jamie, and seen so many other children looking just as bad, so I suspect we've grown immune.
Jamie's doctor suggested we up his MST Morphine (the base pain killer that lasts 12 hours) to 3 10mg tablets twice per day, instead of 2 tablets, and not to give oral morphine 2 hours before each MST Morphine dose. Dave had protested that he didn't think that it would make any difference, and that Jamie would be in pain for at least an hour before the next MST Morphine dose and for a while after, as it took effect.
Dave's theory is that Jamie's stomach, and digestive system has taken such a knock from his first round with Neuroblastoma, with the surgery and high dose chemo, resulting in Jamie being on TPN, then stomach tube feeds for months. We noticed that Jamie eats twice the amount he normally ate before diagnosis and twice the amount for any average child of his age. We think that this is due to the fact that his stomach isn't digesting the food properly, so he needs twice the amount of food to get the effect from one meal. We also noticed that Jamie has a fast digestive system... kind of slap dash really, does half a bodge-it-job!!!
So this is why Jamie is having pain way before he should. The MST Morphine is slow release, and is supposed to last for 12 hours for each dose. But as Jamie was having pain early, Dave was giving Jamie Oral Morphine 2 hours before the end of the dose, which worked great and covered Jamie until the next MST Morphine dose kicked in. Jamie stopped waking up, just because he was in pain, and actually was awake more, and it was obvious he was happier, even though I wouldn't say Jamie's happiness level is his normal self... It's about 6 or 7 out of 10, and he is irritable and subdued.
Anyway, Dave tried the doctor's suggestion, and sure enough, 2 hours before the dose ended, Jamie complained of pain, for the first time in days!!!
Needless to say, we have gone back to OUR WAY, and it just proves that sometimes parents DO know best... after all, we know our children better than anyone! Don't teach us to suck eggs!!!
I like to think that doctors are still willing to learn new stuff, after they've finished University, and that they keep things in mind for the future. Some things you just can't learn in University. And even doctors that are mothers themselves forget the golden rule sometimes... I'm sure they forget that they had kids that age once!!
So poor Dave got up at 6am this morning, to take Jamie to hospital to get his platelets and blood transfusion out of the way, as early as possible. This was so we didn't waste a precious day with Beebo.
I had been worried about Jamie's breathing, the night before, as it was noisy, and suggested to Dave, when he took Jamie up to bed, that he put a few drops of Karvol (like Vic’s vapour rub) on Jamie's PJs. Jamie heard and protested, so I had to wait until Jamie was asleep before doing it!!
When I went up to put some Karvol on his PJ top, Jamie's breathing sounded terrible!! It was noisy Gasps!
After the Karvol had taken effect, Jamie's breathing quietened down, and I was able to go to sleep without too much worry.
Today at the hospital, his oxygen saturation levels read at 96%, which they weren't too worried about. They should be 100%. We were given, on request, a stats monitor, to take home and borrow, so we can keep an eye on his saturation levels, in case they drop any lower. If they did, Jamie would require oxygen.
We were also warned yesterday, after the Doctor said that she thought Jamie was coming down with a chest infection, to keep checking his temperature, and expect it to go up. In this case he would need to go into hospital, and have antibiotics. Or so we hoped. We were worried that the hospital wouldn't treat an infection, and that they would let him die, of the opinion that he's dying anyway.
Dave brought this issue up with the doctor today, and said that we don't want Jamie to die from an infection, as it would cause him to suffer. We want infections treated.
The doctor agreed, that as Jamie is still alert, and awake, and "well" for a want of a better word, that she would treat an infection with antibiotics, but not IV antibiotics.
We would not be trying to prolong Jamie's life, we just would rather he pass away peacefully, in nature's due course.
At present, the blood transfusions, that Jamie has every 4 to 5 days, is the only thing keeping him alive. When he relapsed at the end of May, he only needed a blood transfusion once every 2 weeks, and the gap of days between blood transfusions is reducing.
Once we got Jamie's medication back on par, he seemed happier, and his pain went.
On return from the hospital, Jamie and Dave sat in the computer room and played GTA and Half-Life for an hour.
Jamie's friend Billie had requested to visit Jamie this afternoon, and when she arrived, Jamie had been asleep for half an hour, on the rocking chair in the computer room.
I felt a bit disappointed for Billie, that Jamie had fallen asleep, as she wanted to chat with him.
Luckily, after I'd made a cup of tea, and we'd chatted in the lounge for a short while, Jamie woke up and Billie was able to see him awake, and have a chat. Billie brought Jamie a gorgeous helium balloon, that he hasn't released into the wild quite yet, and a home-made card, which was touching. Billie's mum, Caroline, had brought some photos, of Jamie at last year's Dartmouth Regatta celebration, at the end of August. That's how Jamie and Billie know each other; through Dartmouth Regatta.
Every year, for as long as I can remember, for Dartmouth Regatta, we've been invited to spend the day in Kingswear, at the home of my mum's boss, JC. My mum has worked at Launa Windows, which is a family-run business, since before I was born, and has become good friends with this family. They are almost like family to us.
When I was growing up, I remember going to Regatta celebrations, at this family's house, at Kingswear, and to company Christmas parties, where I would have to stay upstairs in our room of the hotel, while my mum and dad boogied downstairs!!
My mum's boss has a granddaughter, who is around the same age as me, called Joanna, and we hit it off instantly, and became, close friends. We would get into all sorts of mischief at Regatta celebrations, and while in the hotel room at company parties!!!!
Joanna, who I call Jo, is the eldest grandchild, and her first 2 cousins arrived on the scene, Ben and Jemma, when we were around 9 or 10 I think. This was great, as one thing that Jo and I had in common was a love of babies!!!!
At the regatta celebrations Jo and I would take on 1 baby each, pushing the pushchairs onto the ferry, and around Dartmouth. I even have an embarrassing photo somewhere, which I will scan in, of Jo and me on a kiddies ride, with the 1st cousins, Ben and Jemma. We were obviously too old for the ride, and hoping we didn't see anyone we knew!!
Then came Jo's cousin's Charlotte and Jack, and then last but not least Thomas.
As Jo and I grew older, and got boyfriends and stuff, we didn't always go to Regatta every year, with our parents, so lost touch. During this time, Jo's auntie Caroline, and uncle Jem decided they'd better start breeding, and had Billie, Bethany and Polly, and then recently, Jon.
We lived in Grimsby when Jamie was born, and moved back to Devon in December 2000, during Jamie's first year.
I was then invited to Regatta, with Dave and Jamie, along with my mum and dad.
Billie was the eldest at these Regatta celebrations, as the older cousins normally joined us later on in the evening, due to Rugby matches and work, etc...
Billie took on mine and Jo's role, and loved to play with Jamie, and as Jamie got older he looked forward to Regatta, and seeing Billie.
So when Jamie became ill, Billie logged into Jamie's website daily to follow his progress, and sent emails, cards and pictures to Jamie. Even Billie's school friend Stephanie got involved, and sent Jamie a drawing of Stitch, while he was in hospital. 2 weeks after this, Stephanie's younger brother, Christopher, was diagnosed with Leukaemia!!! Freaky!!!!!
So that's the very long and babbling story of how Jamie knows Billie!! The End!!!!
After Billie went home, Jamie ate 1/2 a hotdog, in the bread roll, then 1/2 a hotdog sausage on its own!!!
Then Dave took Jamie out to pick up friends Nic and Chris, to come over and play!!
While they were gone, Charlie was sick, and turned pale! Kim had said a couple of days before, that she thought Charlie might be teething, and after Charlie was sick, I checked his temperature, and it was normal, so it looked like Charlie is teething, his back teeth, which would explain him being sick. But we can't afford to take risks, with Jamie's immune system non existent, so I telephoned Nana Pat in Taunton, very tearfully, and asked if she would come and rescue me, by taking Charlie back to her house for TLC, so Jamie didn't catch anything.
It breaks my heart, because when Charlie is unwell, he likes cuddles, and it's the natural mother's instinct to want to be with them and comfort them until they feel better. But when you have another child, who can be at risk, you have no choice but to put distance between the 2 children. If Jamie wasn't as ill as he is, and if each day wasn't potentially our last together, I would go with Charlie, to the safe house!! At present it is not an option, so I had to entrust Charlie to his Nana, who is well experienced in poorly sick grandchildren.
As it happens, Charlie was due to go away tomorrow anyway, camping in Cornwall with the same Nana, and Granddad, Auntie Kim and Cousin Harry. He will still go, even though he's been sick, he might as well.
It's just so hard, and feels wrong to send my sick child off to someone else! I'll get over it, and I'm sure Charlie won’t have any lasting psychological damage, as he's too young.
When Nana Pat arrived to pick Charlie up, Charlie and I were asleep on the sofa, cuddled up! I packed a suitcase for Charlie, and a few of his favourite toys, dinosaurs and Megazords, and helped Charlie into his car seat, in Nana's car.
Charlie said "Bye Mamma" and gave me a kiss. He left without tears or fuss, bless!!!
Next to visit was my Gran, who hasn't seen Jamie for at least 3 weeks. Jamie wasn't keen to come off his computer at first, as he was having fun with Daddy and the boys in the computer room.
I was out walking Frodo when Gran arrived, with my mum, Nana Teresa, and when I got back, Nana Teresa and Gran were sat in the lounge alone, drinking tea, while the boys were all in the computer room!!!!
Jamie soon came into the lounge, where we were, and laid on the 2 seater sofa, next to me, before demanding, "Kelly, you move and sit over on the other chair!!" These days I laugh at Jamie's cheekiness, as it is a memory of his old self, his bossy side.
As Jamie's disease has progressed, he has become less happy, and has lost his spark. He is very serious, and subdued. He prefers peace and quiet, and not to be talked too much. If people talk to him too much, or fuss, and get in his face, he usually leaves the room, and goes somewhere quiet to escape. Because he is ill, people are concerned, and ask if he's ok, would he like a drink, and generally try and cheer him up. Jamie's much like me, and his Daddy, we'd rather no fuss, if we want something, we make it known, no matter how ill we are.
There isn't much that makes Jamie laugh and smile lately, except his computer games, and tonight I was acting silly, trying to catch a moth in the lounge, and later in the bedroom, for Frodo to eat (another story!!)
The old Jamie has slowly been disappearing. Only a few close people, who see Jamie on a regular daily or weekly basis, are able to see bits of the old Jamie. It is upsetting to see all his great characteristics, eaten up by this monstrous cancer, to know that bit by bit, he is slipping from our lives. I'm glad I have the videos, photos, and memories to keep Jamie forever alive in my heart.
Jamie has had a good day today, he hasn't been awake as much as yesterday, but has been awake a lot, which means we all had quality precious time together.
By 9.30pm, Jamie was tired, after only having a couple of sleeps today.
While Dave drove friends Nic and Chris home, and then onto the hospital to pick up more MST Morphine tablets, that weren't available earlier, and needed for the morning, I got a chance to get some 1 to 1 time, just me and Jamie.
Jamie'd been laid on the sofa, sleeping, with me cuddled up behind him, since around 8pm, so after Dave left Jamie woke and we played GTA and Half-Life for an hour or so, before Jamie got tired again, and we cuddled up on the sofa, with a cup of tea, to watch Lord of The Rings.
Jamie was in a good mood, and we chatted a lot. I asked if he would like special fireworks, with his cousins, and grandparents etc, and he agreed. It was nice to cuddle and be close with Jamie, as Jamie so often goes to Dave, as Dave has been Jamie's main carer throughout his treatment. This was the best arrangement at the time, as Charlie was a baby and too much a handful for Dave, it just seemed right, and worked out great.
The only downside is that Jamie became a Daddy's boy, and I sometimes feel rejected by Jamie, when he chooses his Daddy over me, and often pushes me away. I know its no-one's fault, and that Jamie loves me just the same as always, but it still hurts sometimes.
So I always take the chance to get cheap love and cuddles from Jamie either when he is asleep, or when Dave goes out!!!
Jamie went to bed in our giant co-sleeping family bed, and slept well. There doesn't seem to be any sign of the impending chest infection, so I'll keep my fingers crossed that it won’t rear its ugly head.
Jamie's Neutrophil level has been 0.something, since relapse at the end of May, and apart from that initial infection, which brought it to a head, he has escaped catching anything!! I believe that Jamie inherited my constitution, from my mum’s side of the family. We are rarely ill, but do it in style when we are!!!
I tell Jamie that it is because he's "Well-ard!!"
I hope to scan, and add some more photos, as mentioned in today's super size update - the verbal diarrhoea version!!!
We've no exciting plans to mention for Wednesday, but I will update on tomorrow when Jamie goes to bed.
Love Kelly
XXXXXXXXXXX
Monday, August 15, 2005
Today has been a good day!!
Jamie got up around 11am, after he spent most of the nigh talking and shouting in his sleep, mostly about Frodo, telling him to "get down!"
He was awake all morning, before he went to the hospital for platelets, at around 1pm. He even walked around downstairs!! He mostly played GTA with Daddy and his friend Lee.
After they'd gone off to the hospital I walked down to the town, to the Funeral Directors, and made arrangements for Jamie's funeral, so that it was all sorted beforehand.
I thought it would be very upsetting, but I was ok... We've decided on a burial, at Teignmouth Cemetery, after a service at Our Lady & St Patrick's Church (Roman Catholic). Jamie will have a glass carriage drawn by white horses, and we've chosen a special child's coffin, with toy soldiers painted on the side. He will have his name spelled in Flowers; we haven't decided whether to have Beebo or Jamie.
The Funeral Directors were very good, and they are going to put a notice in the local paper when it happens, for us.
I brought home a brochure, so Dave and I could decide on a headstone, but it won’t be able to go on the grave for 5 months after the burial... the ground needs to settle apparently. We couldn't agree on any in the brochure, I liked the heart shaped ones, with cherub statues, and Dave got all macho, and said it was too girlie!! So we are going to see if we can get a custom made headstone, in the shape of a computer monitor and keyboard!!!
Jamie arrived home from the hospital around 4.30pm; he wanted a Pizza Hut, eat in today, so they were out a bit longer than normal.
I fetched Charlie from his Auntie Kim’s, to come home for a few hours, and Jamie rested on the rocking chair in the computer room, and insisted Dave and Lee played GTA for him to watch... BTW - GTA is Grand Theft Auto!!
Around 7pm Dave & Gary, Jamie's friends from Somerset Bike Rally Club came to see him for a little while. He sat up to talk to them for a few minutes, before he got tired and wanted to cuddle Daddy in the computer room.
I took Charlie and Frodo out for a walk, and as I returned, Dave and Gary were setting off on their motorbikes.
Then to my surprise, Jamie played with his new toy police helicopter for a while... I'd bought it from Tesco for him, on Sunday, and he had been too tired to be bothered then!
And if that wasn't good enough, he then requested to help cook hot dogs, and insisted someone else have one too... Lee was an eager volunteer!! I got his little stool out, so he could reach the work surface, and he assisted Daddy to prepare the rolls and plates. Then he ate 3/4 of a hot dog!! Whoopee!!
The doctor noticed today, that his breathing is quite shallow, and he has begun to cough and rattle. She fears he may have a chest infection coming on! There's not much that can be done, for it, so I suspect that if it worsens, it will be the thing that takes him in the end. Tonight we've noticed he's getting more chesty and coughing, so we phoned the ward, and they've said to keep and eye through the night, as his oxygen saturation may fall, and he may need oxygen.
The plan is that Dave will take Jamie into hospital at 7am for his blood transfusion and platelets, so he has the rest of the day free, from around 12-1 ish.
Jamie's friend Billie is hopefully coming to visit him. Billie is a friend of the family that has watched Jamie's progress since day one. They see each other at Regatta when we all meet at Kingswear.
If any of Jamie's close school friends, who came to his birthday party would like to visit for a short amount of time, please email me, and we'll arrange something. I was going to have a celebration of life party for Jamie, but he's not up to a lot of people here at once, and doesn't enjoy noise, so I've decided it's best if people come separately. I know that he has some close friends from school that are concerned, but be aware that Jamie looks very ill, and dramatically different. Please consider that it may be better to remember him as he was, and it could be upsetting for some. We live with him everyday, so it's not such a shock.
Thank you to Jack M's grandparents, for the Postpal pressie, it was very kind.
I'm hoping we can have some more good days from Jamie in the short time he has left... I would like to start collecting memories of Jamie, and would like people to write or type a personal memory that they have with Jamie, and I will put them all together in a scrap book of some kind. Obviously it's just for people who know Jamie!! If you email them to me, I will print them out, and they will be available to read at Jamie's wake.
Hope you're all enjoying the daily updates
Love Kelly
XXXXXXXXXXX
Sunday, August 14, 2005
We got up early this morning, Jamie included. Early to us is before 11am!!!
Jamie was due to have platelets, so we set off early, leaving Nana Pat still in her nightie!!!! That made a change; it's normally me that's the last one to get dressed!!
Jamie got changed into his Batman Pyjamas, from yesterdays Darth Vader ones.... I'm not sure if I've mentioned it before, but Jamie refuses to wear clothes since relapse. We've managed to cajole him to wear comfy clothes for a few occasions, but these days it's a battle we'd rather not have!!!
Jamie was in good spirits today, and even wiped a bogey on my arm, as I drove to the hospital... it's the little things that mean so much to me!!!
We arrived at the hospital at 10.30, and at 11.30 were still waiting for the platelets to be delivered by a porter!!!
The nurse took a blood count before she started the platelets, and we discovered that his day off from platelets had caused his platelet level to drop to 12!!! His White blood count had risen to 3.something, and HBG was 10.2ish, and Neutrophils are 0.64.
His HGB was 11.something on Friday, so I think he'll need a blood transfusion Tuesday, if not tomorrow night.
At 12.30, two hours later, we left the hospital, after collecting a prescription of Senakot to help Jamie's bowels, as he hasn't gone for over a week!!!
Jamie requested a Pizza Hut!!!! So I couldn't drive faster before he changed his mind. I asked if he wanted to eat in or take it home, and he said, "Take it home... You go in and I'll wait in the car Kel”!!! Bless
when we arrived home, Jamie ate half a slice of Pizza, and had a drink of Loserade (Lucozade) and than had a sleep on the sofa while I did a much put off Tesco run!!!
Nana Teresa and Granddad Paul returned Charlie to us around teatime, and stayed for a while to see Jamie. Then after they'd left, Dave took Charlie over to stay with Auntie Kim, so Jamie could have some quality/peaceful time with Dave and me.
Jamie's been quite awake and happy today, playing Half-Life and Grand Theft Auto with Dave and I. We've asked him to do other stuff, but that's all he seems up to. He isn't keen on going out, and seeing people, except his Grandparents, friends and cousins etc...
When I said that we don't want visitors, I didn't mean close friends and family of course!! I meant others who may want to rush over and see him, I hope you'll understand. Of course please do email me and ask if you are not sure.
He is having short bursts of awake ness and activity, and then having sleeps.
Dave has timed his MST Morphine and Oramorth perfectly, so there is no Gap in Pain care, and Jamie appears comfortable and content all the time.
This morning, and evening Jamie has experienced difficulties in weeing, but after he was encouraged to persevere, he managed in the end. Tonight he weeed like a trooper once he'd started, and then accidentally weeed in his pull-ups!!! Even though he wears pull-ups, he rarely actually goes toilet in them, I think he feels more secure wearing them, just in case, for in the past, after his digestive problems, he was prone to "wet farts" or following through, so has stayed in the habit of wearing them. I think they pad his boney bum quite well too!!!!!
Well I'm very proud of my good behaviour in my first daily update!!! I hope I can keep it up!!!
At present Jamie is sat on the other PC, behind me, playing on Grand Theft Auto, San Andreas... he's trying on clothes!!!
More tomorrow
Love Kelly
XXXXXXXXXXXXXX
Saturday, August 13, 2005
I totally intended to update this Thursday, but fell asleep when settling Charlie to sleep... I take after my father; we seem to have a very mild form of Narcolepsy!!!!
I hope to do daily updates from now on, as I realise people worry, and by a week, I've forgotten what's been happening!!!!
Last Friday Jamie had Platelets, and my friend Coralee came to visit for the day. Coralee was shocked when she saw how skinny and pale Jamie was. We don't notice, as we see him everyday!
On Saturday Auntie Linzi and Uncle Sean came over, but Jamie slept for most of their visit... then My Auntie Sarah came over in the afternoon, with Jack, Charlotte and Patrick. Jamie slept through their visit too!!!
Dave and I had planned to go out to celebrate our Wedding Anniversary (3 Years) which was on Wednesday 10th. We booked into the Travel Lodge at Plymouth and went out to our usual night club Academy. Nana Pat stayed at ours with the boys.
On Sunday Nana Pat took Jamie to hospital for his blood transfusion and platelets.
Jamie didn't want to go to the Red Bull Air show, so we gave it a miss.
On Monday morning we discovered that Jamie's MST Morphine tablets had run out. By the time we got to the hospital for more, his dose was late, and Jamie was in pain and upset. He had platelets on Monday and Tuesday, but didn't do much else but sleep... he was not comfortable, and had a new pain at the top of his leg, where it meets the stomach.
Jamie was much the same on Wednesday, sleeping most of the day, but woke for a while to see his granddad Paul, when they came to visit in the evening.
On Thursday we took Jamie into hospital for a blood transfusion, and platelets. We hoped this would perk him up like it did last time, but it didn't have much difference. Jamie remained uncomfortable and sleepy.
On Friday Jamie was slightly better. We'd been advised to up his MST morphine dose to 2 tablets twice a day instead of 1. So now he gets 10ml twice a day. This serves as background pain relief that lasts 12 hours, and we are to give oral morphine 4 hourly on top for pain.
Jamie was a little more awake and talkative on Friday, which was good to see.
The doctors have said that this is the beginning of his slide downhill. We have stopped the oral chemo, and are now looking at keeping Jamie comfortable and pain free, so he can have a peaceful passing
I would prefer not to have visitors, as Jamie is not himself anymore, he is depressed, and often sad. He doesn't seem to like people being around and fussing, it is upsetting him. He just likes to be left to do as he pleases.
Today Jamie woke late, around 12.30. I think it's because he heard his Granddad Paul arrive!!! He got himself up out of bed, and after a wee, I helped him choose some pyjamas before he walked downstairs.
Jamie's cousin Harry had come to visit, so Jamie and Daddy went into the computer room with Harry to play Half-life 2 on the PC, Jamie sat on Daddy's lap.
At just before 2pm, Jamie tired again, and climbed onto the sofa to go to sleep.
Luckily Jamie doesn't seem to be in pain today, Dave has fine tuned the timing of his oral morphine to cover pain at the end of his MST dose, as the MST doesn't seem to be lasting the 12 hours it should.
We hope to spend the time now, keeping Jamie comfortable and happy, and having some special time with him, to make sure he knows what is happening, and that he can talk through any fears he has with us. And hopefully, so we can say our goodbyes, so Jamie has closure, and can pass peacefully.
We don't plan to go out anywhere, nor have visitors, unless Jamie requests. He looks very unwell, and I would rather people remember him as he was. Jamie doesn't particularly want to see anyone, and we feel we must respect his wishes, rather than treat him like a show and tell.
I will try my hardest to do the photos today... It has been hard with daily hospital visits, and looking after Jamie, and people visiting the house, on top of domestic bliss!!!!
Love Kelly
XXXXXXXXXXXX
Thursday, August 4, 2005
In the last update I said that we would be returning the Porsche on Friday 29th.....
We set off a little later than scheduled, I took Jamie and Charlie in our car, and Dave took Lee in the Porsche.
We hit huge tailbacks at Bridgewater!!! Apparently there had been an accident ahead!! I phoned Dave just to make sure it wasn't him!!!
It took us 2 hours to get to Taunton in the end, which normally takes 30 minutes! Dave phoned the Porsche garage, where the owner kindly offered Dave and Lee a lift home, so I turned around and headed for the hospital, so I could start Jamie off on his bloods.
At Cullumpton I hit another tailback!!! Not my day!! So after taking a sneaky route off the motorway, via Broadclyst we finally arrived at Exeter!!!
Jamie wanted to go to the Toy shop first, and after we'd gone into Thomas Moore’s, we stopped at MacDonald’s for some lunch, before going to the hospital.
Dave and Lee ended up catching a train home from Bristol, as the Porsche owner had offered them a lift home, thinking they lived in Bristol.
Dave stayed with Jamie, as he needed blood as well as platelets, so I took Charlie home for a few hours, before returning to pick them up later.
On Saturday Nana Teresa and Granddad Paul came and took Charlie away until Sunday evening, and Nana Pat and Granddad Jeff had stayed the night before, after watching the carnival at Teignmouth.
Nana Pat took Jamie out with Cousin Harry and Auntie Kim to the pier, and the fair in Teignmouth, while Dave and I relaxed in a child free zone!!!
Jamie returned to hospital for platelets on Sunday, after a visit from my friend Charlotte, and her daughter Claudia. Jamie and Claudia played nicely for a while, before Jamie got tired.
Due to the rate at which his counts are dropping, he will need platelets every day now, and blood was ordered for Wednesday.
On Monday Nick came over to play Lego with Jamie (Nick is our 28 year old friend, godfather to Jamie) and then they all went to the hospital for platelets, and into the Toy shop again!!!!
We had an early night on Monday, for on Tuesday morning www.dreamcarhire.com delivered a red Ferraris 360 Modena F1 for us to borrow for the day!!!!!!
The local newspaper came to take photos of Jamie before Dave took him to hospital in it.... Dave took some amusing photos of the Ferraris parked in a disabled bay with the blue badge!!!!
The plan was to take Jamie to Powderham Castle in the afternoon, where they had Jousting, and were going to knight Jamie. But when he got home from the hospital, he was tired and in pain, so we had to cancel.
We gave Jamie 2ml or Oramorth, oral Morphine, which helped him to sleep for a few hours.
We were afraid that this was the beginning of a downward spiral for Jamie... we had noticed that during the past week he has lost his sparkle, and had become more depressed, and uncomfortable.
Nana Pat had taken the day off especially to come to Powderham castle with us, and was disappointed and concerned to see Jamie so upset. She sat with him while he slept, then he suddenly woke up, full of beans, and demanded Fish and Chips on the seafront!!!!!
Nana Pat and Granddad had just been down for fish and chips, and were setting off for home, so they couldn't come with us... at least Nana Pat got to see him perked up before she left, I think it made her feel a little better.
I questioned his rate of drop in blood counts on Monday, to the Dr, and was told that in her opinion, it was due to disease progression, and that it doesn't look like the chemo is working. In fairness the chemo hasn't been given a long enough chance to see, but it's looking unlikely that it will improve Jamie's condition.
The good news is that the chemo isn't adversely affecting Jamie, so we can keep him on it, while we wait for another miracle......
Yesterday was Wednesday; Jamie had a day of playing Lego with Daddy, before we ate homemade pizza. Then we all went to hospital, as Jamie was due to stay in overnight and have the days platelets, a blood transfusion, then the next days platelets in the morning.
Nana Teresa and Granddad Paul met us at the hospital, and after arriving on the ward, I had to go and get Jamie a spicy sausage pizza from Pizza Hut!!!!
Nana Teresa came home with me and Charlie, and left granddad Paul to follow later after he'd spent some time with Jamie.
This morning, after Jamie and Dave had arrived home from the hospital, to find me asleep on the sofa, in the midst of world war 3, that Charlie had made in the lounge!!! Toys and videos everywhere!!!!! Ooops!! Charlie had been awake early, and been banging a wooden hammer around upstairs, bashing me with pillows, and generally trashed upstairs, so around 9am, I'd had enough and decided to take Charlie down for breakfast, and then pass out on the sofa!!!
We had a surprise visit from Father John, which was very nice, as I had a mug for him, which said "Jesus is coming, Look Busy!!" and I hadn't gotten around to taking it to him. Father John stayed for a cuppa, and looked at the latest photos, while we caught up on the last few weeks events.
Then around midday we went to Paignton Zoo, just me Dave, Jamie and Charlie.
On arrival at the zoo, our first stop was the restaurant, for lunch, while Charlie slept in the pushchair.
Then we did a world record speedy walk around the zoo, not stopping for long to look at the animals, before Jamie demanded we move on!!!
We saw all of the Monkeys and apes etc..., Giraffes, Elephants, goats, peacocks, pot bellied pigs, giant Tortoises, Zebras, Cheetah, and horn billed thingies I think!!!!
Jamie fell asleep on the way home from the Zoo, around 5pm, cuddling his furry snake and Monkey that he'd bought from the Zoo. Charlie had bought a large crocodile!!
We had to wake Jamie up for his chemo and his MST tablet before putting up to bed.
He has been put on a new pain killer, still Morphine, but a slow release, which he only has to take twice a day, morning and night. We have seen a difference in Jamie today, after starting it this morning!!! He has been happier, and more active.
Tomorrow he is going in for Platelets again!! And my friend Coralee is visiting.
Saturday auntie Linzi, and uncle Sean are visiting, so are my auntie Sarah, and Uncle Mark, with my cousins Jack, Charlotte and Patrick, before they go off for a camping holiday. We also hope to see the Shaldon Water carnival on Saturday evening, if Jamie has any energy left!!!!
Sunday we have tickets for the Red Bull Air show, at Longleat!!
My laptop finally died last night, and needs a new hard drive!! I was in the middle of getting some photos together for todays update when it happened, but luckily Dave has some photos stored on his FTP server..
http://www.tsilatnem.eclipse.co.uk/Pictures/PorcheDay.jpg
http://www.tsilatnem.eclipse.co.uk/Pictures/disabledfarrari.JPG
http://www.tsilatnem.eclipse.co.uk/Pictures/farrarijamie.JPG
http://www.tsilatnem.eclipse.co.uk/Pictures/farrariboxter.JPG
JUST COPY AND PASTE THE LINKS INTO YOUR BROWSER TO VIEW THE PHOTOS...they are very big, sorry!!!!!
I will work on some photos for the website and this bit soon, promise!!!!
Love Kelly
XXXXXXXXXX
Thursday, July 28, 2005
I have a good excuse this time!!
On Tuesday, I took Jamie to hospital for his platelets and blood, and so did not get a chance to update, as we were there until 10pm!!
Back to the update.....
Friday 15th of July was the BBQ at Jamie's school, Our Lady and St Patrick’s.
There were a few fun-type stalls, a magician, a band, a bouncy castle, a bouncy assault course, and a bar!!!
Within the space of 40 minutes, Jamie managed to eat five hot dogs!!!
He saw some of his school friends, and teachers, and Daddy and Uncle Sean took Jamie on the bouncy assault course.
Charlie enjoyed the opportunity to run riot, play with the other kids in the big school field.
On Saturday, Jamie was invited to Taunton, where the Somerset Motorbike Rally Club was having a rally.
Gary, who did come to the circus with us before, picked him up at Nana Pat’s house. Jamie had a lift on the back of Gary's motorbike across to where the bike rally was starting. We followed in the car.
When we arrived, there was a long line of motorbikes, all parked up along a road, leading to where everyone was waiting to meet Jamie. Orchard FM was there!!!
Everyone cheered and clapped as we arrived, and Jamie was invited up onto a little stage, where Dave Wallis, head of the club, introduced Jamie to a crowd of about 300 people!! Jamie was presented with a Harley Davidson T-Shirt, and Jamie gave Dave Wallis his present from Legoland.
Jamie was chosen to start the Rally and they all drove past and waved; as we counted over 170 bikes go past.
Jamie stayed over at Nana Pat's house, with Cousin Josh, on Saturday night, and they went to a car boot sale on Sunday. Jamie bought a space hopper at the car boot sale, despite having an accident on one previously, at Jack's house. This time he fell off it backwards and now has a lovely bump on the back of his head, to match the bump at the front!!!!
Cousin Josh then stayed with us for the week.
On Monday, Jamie was at the hospital for Platelets; Josh went along, while I stayed at home with Charlie.
On Wednesday, Jamie went back to the hospital for platelets, and a blood transfusion. After dropping him off, I took Charlie shopping at Tesco, before Dave dropped us home, with Josh, while a nurse sat with Jamie in the hospital, as it would have been too late for me to take Josh and Charlie back later to pick them up at the end of the blood transfusion, which finished around 10pm.
On Thursday, Jamie had a special day. I stayed at home with Charlie, while Jamie went with Daddy, Nic, Chris, Granddad Jeff, and Uncle Sean. Nic has done a report.....
Jamie's helicopter day – a report by Nic Foreman
9:30am we arrived at a football field, opposite the Royal Marine Commando base at Lympston, Devon. Next to a large Car Park, this was being used for a Car-Boot Sale.
We were met by members of the Royal Navy and the Royal Air Force who helped to organise today's event for Jamie. Within minutes, Jamie is inside their M.O.D Land Rover, with the windscreen wipers at maximum speed. Jamie was sounding the horn and squirting what looked like ALL if the wiper-fluid, all over the Land Rover’s windscreen.
A few minutes later, we heard the first of four helicopters approaching. A small Gazelle landed and Jamie's face lit up. As its' engines were powering down, a second helicopter roared overhead, flying low and banking hard.
A certain little boys' face lit up even more (no, not mine.) The people at the car boot sale were either smiling or running for cover about now!!
As the huge Chinook landed and powered down Jamie, his dad and his cousin were
taken over to the first helicopter to meet the pilot and get into the cockpit.
As soon as the Chinook had come to a stop and it’s' doors were down, Jamie wanted
to go over and take a closer look. Off he ran, followed by his cousin, and a member of the armed forces.
Both crews presented Jamie with signed mementos (including his very own named helmet) and gave him a guided tour of the bus-sized helicopter, clearly his favourite.
After a few photographs were taken, the helicopters took off. The Chinook came back
for a fly-by, much to the delight of my Godson.
Soon after, two Sea King helicopters flew in to refuel and pick up a squad of soldiers
going on a training exercise. Before they left, Jamie and his cousin were taken up
to one of the two Sea Kings to say hello to the pilot.
This was the last of the personal flight show but there was one more surprise to come.
In the time it took from the photos being taken in front of the Chinook, the
Marines were hard at work making a framed collection of the best photos.
Jamie made many friends and in his own words he had, a great day.
--------------------------------
Jamie was on ITV news that evening, and has been in the local papers.
Josh went home on Thursday evening.
Jamie went to the hospital for Platelets on Friday.
On Friday evening, we took Jamie to Air Fusion, music festival, at Courtenay Park, Newton Abbot. Jamie went on a bouncy castle slide, bouncy assault course, and a fairground type ride.
On Saturday, Jamie spent the day with Nana Teresa and Granddad Paul. They went to Pizza Hut and into town, and bought a Thunderbird's Tracey island toy, and then they took Jamie to Air Fusion. Jamie managed to con his granddad into taking him on the dodgems, even though we had told Jamie the night before that it was too dangerous for him to be knocked about, unknown to granddad!!! Little tinker!!
Jamie was very sheepish about it when he came home that evening!!!
On Sunday, Jamie went to the hospital for Platelets.
On Monday, we drove up to Bristol, and picked up a Porsche Carrera 4 to borrow for the week!!!!
After a visit to ToysRus, we left our car at Bristol, and took the Porsche to Swindon, 30 minutes away, to visit an old friend, Matt, who we knew when we lived in Plymouth about 7 years ago.
After returning to Bristol, Jamie and Daddy went on home, while I went off to Ikea.
Tuesday Jamie seemed rough, and was very grumpy. We were due at the hospital for blood and platelets, and his blood check showed his haemoglobin levels were down to 6!!! This explained his roughness!!! Jamie slept during most of the hospital visit, which lasted from 1.30 until 10pm, and woke up halfway, through his blood transfusion, around 8pm. The platelet transfusion takes about 20 to 30 minutes, and does not use a pump, as the body draws the platelets in through the central line itself! The actual blood transfusion, which gives Jamie haemoglobin, takes 4 to 6 hours. Luckily Jamie has platelets every other day, and blood once a week.
On Wednesday, Auntie Jo and Cousin Josh came over for the afternoon, and then Nana Teresa and Granddad Paul came over in the evening.
We also had a visit from Dave Wallis, Gary and wives. Jamie asked if they would take him for a Kentucky, so we drove to Newton Abbot, Jamie went in Dave Wallis's car, and I followed behind with Charlie.
We all sat in Kentucky to eat, and then we parted company from Newton Abbot, as Dave Wallis had to go to work that evening.
Today, Jamie was back in hospital for platelets. It was decided that Jamie might need platelets two days running some weeks, as an extra top up, as he is still bruising in between platelet transfusions, and will need blood more often than once per week.
The doctor said that Jamie's condition seems the same as it has for the 8 weeks since we had been told that Jamie had relapsed, which is good. Of course, his bloods have gone down a bit, due to the chemo.
Jamie started his second 3-week cycle of Etoposide oral chemo today.
Overall, Jamie has been well and happy, but has had his bad days, due to low blood counts. His eyes have a yellow, bruise-type colouring around the lids, and underneath, added with a bruising colour some days. This is worse some days than others, and can change throughout the day.
We are not certain what is causing this, it could be low platelet levels, made worse by Jamie rubbing his eyes in the morning, or could be tumours behind the eyes or a characteristic of Neuroblastoma, which sometimes goes to the eye sockets. The doctor is not sure either but says that it would not be treated any differently whatever it is.
Jamie's weight remains around 15.8kg, as it was 8 weeks ago, and his appetite is still the same. His mouth does not seem so sore anymore, and he does not have to spit his chewed up food out as often as before.
He has a bump on the front of his head, which goes up and down, I was assured it was a bump and not a tumour, and the X-Ray did not show anything sinister.
Jamie's mood is up and down, in coincidence with his blood count levels, and he prefers to wear pyjamas on his low-level days. Negotiating is useless, and upsets him, but on good days, he will wear a t-shirt and tracksuit bottoms. Jamie doesn't want to wear jeans, or button up trousers, so I have put them all away for Charlie, and made sure that Jamie only has character t-shirts to wear, which is more appealing. He has Star Wars, Power Rangers, Scooby Doo, Thunderbirds, Spiderman, Batman, Bionicle, and Pokemon. So anyone stuck for gift ideas... character t-shirts!!! He is wearing size age 4, or 3-4 but not age 4-5 is too big. I have been getting them via EBay, as I can get them from the USA cheaper and in designs different from here.
Tomorrow we are returning the Porsche to Bristol, and Jamie is due an extra blood transfusion, to top-up.
We have not yet made any plans for next week yet, except that Dave is having a Ferrari for one day!!! And he will be sitting in a Red Arrow one day, while it refuels at Exeter Airport!!!
Jamie has requested to see some more aircraft, and to sit in a Harrier Jet, so Nic's mum might arrange for Jamie to go on one of the Naval Ships.
Jamie is mad on military vehicles, and aircraft, and really wants to drive a tank, but we have not managed to sort it yet!!
I've nearly managed to sort my antidepressant medication out; dosage wise, but am still not enjoying the side effects of excess facial sweating and desire to eat chocolate at night!! I have been prescribed a different one, but have not started taking it yet, I am a bit reluctant after reading that it causes drowsiness. A drug with a sedative effect is NOT what I really need, it seems to knock me right out for up to 14 hours at a time!!
My laptop is nearly back in full working order. I haven't had much time to edit photos this week, for the site, as the boys have been staying up far too late, leaving me not much time after they've finally gone to bed!!!
We are trying to get their bedtime back to a more appropriate time, as Jamie really suffers from lack of sleep. We would prefer any prospective visitors not to arrive, or stay later than 7pm, except family, so we can wind the boys down and settle them before 9pm.
Tonight we managed to get Jamie asleep before 9.30, and Charlie gave up the fight at 10.30!!!
Thank you to everyone who has left messages in the guestbook, and sent cards and gifts. Postpals web site has Jamie featured, and he receives lots of cards, and gifts. He loves bubbles, and craft stuff that has been sent. One person sent a knitted pink dinosaur, which Charlie has adopted!!!
When Jamie gets a Postpals parcel, he says, "it's a pass the parcel!!!" and enjoys taking off the wrapping paper.
I will try to do a list of things, and sweets that Jamie likes, to give Postpals peops an idea if they want to send stuff, as he has gotten duplicate items. Please, don't send any more Slinkys!!!!!
MESSAGE TO JAMIE's CLASSMATES!!!!!!!!!!!!
---------------------------------------------
Please can parents email me with their phone numbers, and addresses, if possible? Jamie would like to invite a friend round to play during the holidays. Please remember to include the pupil's full name in the email, as I get the names mixed up!!! Thanks
Love Kelly
XXXXXXXXXX
Monday, July 25, 2005
All is well...... Except my laptop went pear shaped and needed backing up and formatting!!!!
That's this week's excuse for not updating!! Please send suggestions for next week!
I am in the process of sorting photos off the digital camera, to let you all know the exciting things we've been up to!!!!
I'll give you a taster before tommorrow.... more helicopters, motorbikes, supercars, newspaper/radio/tv news coverage!!!
Jamie's off for blood at Exeter tommorrow, so I plan to do a full update... with photos!!!!!
Love Smelly
XXXXXXXXXXXX
Thursday, July 14, 2005
I was sure I'd updated before now!! I must have either been dreaming, or made an error while doing it!!!
You must have been going mad with wondering what's been going on!!!! How did you cope?!!!
Since the last update both boys have been baptised, at the local Catholic Church of Our Lady and St Patrick.
Charlie fell asleep on route to the church, which was a blessing in disguise; he doesn't really like people, especially strangers, so we were worried about how he'd react to Father John putting oils and water on him!!
Charlie awoke when Father John poured a bit of water over his head. We'd suggested he do Charlie last, so this was pretty much the end of the baptism.
Charlie coped, and reacted a lot better than we expected!! Father John didn't get hit, or told to "Shut-up!" This was a miracle in itself!!!
Afterwards we all went for a "Do" at the local Rugby Club, where there was a cake, and everyone had to sing "Happy Baptism to You!" at Jamie's request.
Nana Pat had bought a Lego scalectric type toy, which kept some of the kids amused, while the others played on the Rugby pitch, that we later discovered was drenched in raw sewage from the storm floods a week ago!!! Apparently the Rugby club didn't feel it necessary to tell us!!! We had other vulnerable kids there too, as well as Jamie, and it was lucky that none of them got ill!!
I hope to post some photos of the baptism when someone sends me some.... we didn't get a chance to take any ourselves, as we had our hands full.
Jamie went into Exeter hospital for his platelets and blood test as normal on Monday, then again on Wednesday.
On Wednesday, when Jamie arrived home from the hospital, he'd been asleep in the car, and awoke complaining of a headache.
I gave him a cuddle on the sofa, and his headache seemed to be getting worse, and Jamie started crying, then screaming in pain.
We were worried that it was due to a lump that Jamie has developed on his forehead... thinking it was a tumour, so phoned the hospital, where they told us to come straight in.
We dropped Charlie off with Auntie Kim, and Dave drove, while I cuddled Jamie on the backseat of the car. By this time, he was semi sleeping, and not wanting to be moved.
When we arrived at the hospital his temperature had started to shoot up, and antibiotics were given.
We thought this strange at the time, as Jamie had headache, but it turned out that the headache was a symptom of septic shock, through a line infection.
Within the hour, Jamie's temperature was returning to normal, and he was almost back to himself.
We had to stay overnight in hospital until Saturday, when they had cultures back, and had put him on an antibiotic that was working. The infection was from bacillus bacteria in his line, and if it doesn't clear after 10-14 days on antibiotics, Jamie's line will have to be removed, and re-inserted somewhere else (God knows where!)
Luckily Jamie was allowed to leave the hospital for the afternoon, and return in the evening for meds, to stay overnight.
We've been taking Jamie into hospital everyday since Saturday, for his antibiotic, which needs to sit in his line.
On Saturday morning Jamie received a blood transfusion, and then he had platelets on Sunday, Tuesday and today.
His blood counts are holding quite well, and don't seem to have dropped much, if at all from oral chemo.
We spoke to the doctor about the plan of action, with oral chemo, and because Jamie's cycle has been interrupted by his infection, he will need 3 extra days top up at the end of this 3 week cycle, then we will assess how well it's doing at the end of the next 3 week cycle. So he will have a week off, then 3 weeks of chemo, then scans.
We've been told that the chemo can either be working and reducing the cancer, or stabilising it, or not working. If it's working we hope to stick with it. If it's not, we will try the Topless Cyclone chemo, which is stronger, and will go into his central line. This will have to be done in hospital, and Jamie will need to go up to Bristol, as he will have full scans first.
We don't know what we'll do if it's just stabilising it... I'm not sure if we want to burn bridges by moving to different chemo until this stops working altogether... w will have to wait and see.
Jamie has been tolerating this oral chemo extremely well; as only Jamie can... he has had no bad effects, and has kept his appetite, with no vomiting, or hair loss.
He still looks and seems well, although due to his low platelet count, has many bruises on his legs, and one of his eyes looks yellow. Some days are worse than others; he has good and bad days.
On Sunday night Jamie had a very restless night, and woke complaining on knee joint pain. We gave Calpol, which didn't seem to help, so gave Codeine, which didn't help either. Jamie was very distressed, and Dave and I couldn't do anything to comfort him, we each had a leg, either side of him, and were trying everything we could think of to rub, stroke, and position his legs, to relieve the pain.
In the end we had to give Jamie Oral Morphine, which did help, and knocked him out too!!!
Jamie slept till we left for the hospital on Monday, at around 12.30, and then slept on and off all that day!!!!
We are now giving regular Calpol and codeine, in 2 hourly alternative doses, to keep his pain away.
On Tuesday this week, we went to Crealy after the hospital visit, with Nana Teresa and Grandad Paul. Jamie loved it! 1st he went on the rollercoaster, then the pirate ship, followed by log flume twice!!!! Then he had a go on the go-karts, while Charlie played in the giant sand pit, before going on the ride-on-tractors, and ramming some poor boy on another tractor!!! We felt like really bad parents as we stood and laughed almost cheering Jamie on!!!!
The last ride was a little train ride, which Charlie loved, before we went to see some animals.
There was a field of goats and sheep, that people were allowed to go into, so Charlie made friends with the goats, and tried climbing their mini mountain... he needed dragging out when we wanted to go into the barn, to see the horses, chicks, pig, piglets, calves, rabbits, chipmunks, and guinea pigs.
In the gift shop Charlie chose a giant dinosaur toy, which we bought for him, and he insisted on walking it out of the shop, making growling noises!!! Bless!!!
Jamie and I then had the last rollercoaster ride, before we had to leave due to closing!!!!
We have a season ticket for Crealy, so we can go whenever we like.
Today Jamie had platelets again, and then invited his mates, Nic and Chris (aged 25 and 27) over to play Lego and computers!!!!
I've managed to sort and tidy the boys’ room, which is now a guestroom with toys, as the boys both sleep in our room, in a giant bed, made of our double, and Jamie's single!!!!
So how are we coping? Not too bad, some days are better than others. Dave and I seem to bounce off each other, and when he has a bad day, I help him out, and vice versa. Luckily we get a lot of support from our parents, who visit often, and help with housework, and ironing, and dog walking, which I have struggled to do.... my depression has been getting worse, despite me increasing my medication. I am waiting for a doctor's appointment, next week, as I often struggle in the mornings to get out of bed, and to motivate myself, then some nights I have lucid dreams, and shout a lot. I am still struggling with my night eating, which turns out to be a recognised disorder, so hopefully my GP can help.
Please don't be offended if I don't phone, or visit, I am finding it hard at present. I should be happy that Jamie is still well, but I don't have any control over my depression, it rules me, which means that most of the time, I can't bear to talk to anyone, and just want to stay in the house.
There is a lot of good stuff planned for Jamie over the next week or so, and I will try and update more regularly than originally intended, so hopefully it will be shorter easier updates!!! The trouble is that the longer I leave it, the longer the update!!! Then it's a vicious circle!!!
Tomorrow evening we are going to a BBQ at Jamie's school, and then on Saturday we're off to a bike rally in Taunton.
Monday Jamie is off to Brean Sands for a ride in a Hovercraft, then next Thursday he is having another helicopter ride, but this time from the Navy, for an Army/Navy day, to see an assault course, tank, and other stuff, which I can't for the life remember at this precise moment!!!!
Jamie has also been offered a chance to meet a baby elephant, at Whipsnade Zoo, a ride on a quad bike, to drive a tank, test drive in a Porsche, horse riding, meeting birds of prey, special appearance at a joust, a leisure cruise, hot air balloon flight, trip to digger land, flight in a biplane, lesson in ventriloquism, and there is still stuff in the pipeline!!!
We will be planning things a week at a time, as we don't know how well Jamie will be from week to week. We also hope to fit in some more visits from his friends and family too, as well as the boring but necessary hospital visits!!
It has been extremely hectic since the last update, with Jamie being unwell. When he was allowed to stay at home on Saturday, we still needed to go into the hospital every day, for antibiotics, and bloods. We normally got out around 3pm, which didn't leave much time for anything else. By the time we got home, and sorted with his oral chemo, and dinner, the day seemed to disappear!!!
Jamie has wanted to go into school, but we just haven't had the chance! Today he did though, and saw some school friends, and picked up his class photo. I will scan it and put it up ASAP.
So hopefully the next update will be Saturday evening, when we return from the bike rally, I hope!!!!
Love Kelly
XXXXXXXXXXX
Wednesday, June 29, 2005
A thousand apologise for the lack of update!!!!!
All is great still... well as great as can be expected!!!
Technically Jamie should have gained his wings, and should be an angel now, but he seems to be fighting this monster himself, and is still as well and active as before!!!
I will do a proper update of our Legoland trip tomorrow, but I wanted to make sure you weren't all worrying, from lack of news.
Jamie started oral chemo (Etoposide) on Monday, and so far has no side-effects. He has asked to fight this big time, so as long as he is ok on the oral chemo, we will be stepping up the fight and getting the big guns (Topless Cyclone chemo) in the near future!!!
We had a frank conversation with Jamie and explained that oral chemo will only slow the cancer down, if it works, but that he is still going to die.
Jamie said he doesn't want to die, and is willing to fight, whatever the cost!!!
I have posted some photos of Legoland here, and am working on a photo gallery for the main site. I will let you know when it's done
Love Kelly
XXXXXXXXXX
www.beebo.info
Friday, June 24, 2005 4:28 PM CDT
I was meant to update on Thursday, and had loads of new photos, but somehow, in the hecticness of getting ready for Legoland Denmark, I forgot!!!!!
Well we're here at last!!! The journey here was a nightmare!! Lots of turbulance from Plymouth airport, and stuck on a small plane near Keith Chegwin!!!
Then we were treated like shit by Maesk Air, at Gatwick, for our connecting flight!!!!
Instead of having 1st class seats on the plane, we were shoved right at the back, in the tiniest seats, with no legroom, and a fed up Charlie!!
We should have had a meal on the plane, included with the flight, but didn't, so ended up traveling from 7.30am, until 5pm, without a bite to eat, or a minute to spare to sit down!!!
Mind you, Charlie has surprised us, he's coped extremelly well today, better than anyone else!!!
The Legoland hotel has wireless internet connection!!!!!
This was just a quick update to say all is well, not to panic... we're having a great time, and I will update when we get home... so check back on Tuesday or Wednesday for more
Love Kelly
XXXXXXXXXX
Saturday, June 18, 2005
Another week blurred past
I've only just had chance to update, as it's been madness non-stop in this house all week!!
On Friday 10th it was Charlie's 2nd Birthday.
My mum and I took him to Rainbow Funhouse Torquay
http://www.rainbowfunhouse.co.uk/
While we did this Dave and Grandad took Jamie in the other direction, to Exeter Hospital for a Platelet transfusion.
He was given an adult bag, which the nurses were going to stop halfway through but were so busy they didn't so Jamie got the whole bag which won’t hurt him.
On Saturday Jack from Bristol brought his parents and Brother Joseph down to visit again. We went down to the beach, where the boys played in the sand and paddled in the sea. Jamie managed to fall over and got his T-shirt wet, so ended up wearing one of Jack's spares!!
We then went to the end of the pier, and the boys went on some of the rides, before it got too cold and we had to go home.
That night Jamie's line was bleeding quite a lot, so we decided to take him to Hospital.
We had to divert our route due to the road being closed by a head on crash, and then passed another crash on our diversion route!!! This was 3am in the morning!!!
The doctor didn't seem too worried by Jamie's line, so a pressure dressing was applied, and we were allowed to go back home.
Due to Jamie's dodgy line, and our late night we had to cancel our plans to go and visit Auntie Jo and Josh, then Auntie Sarah and Uncle Mark near Plymouth.
On Monday Jamie and daddy went to the hospital for Platelets (Jamie had the Platelets, not Daddy!!) Then they went shopping for more Lego!!!
Grandad Jeff drove up to Newport to get passports for Dave, Charlie and Me. Charlie's failed, because what we thought was his birth certificate wasn't... apparently we only declared him, and the registry office failed to tell us that at the time... we should have gone to Paignton to get him actually registered... cheers!!!
That evening Auntie Jo and Josh came for tea, and I took Frodo to Dog training class for his exam!!
Frodo did better than he does during class!! Probably because there weren't any other dogs in the room!!!!
On Tuesday Jamie went into hospital for a blood transfusion, while Dave and I talked with the CLIC nurses, about future palliative care at home. CLIC Nurses have liaised with our local surgery, and we will get some district nurses when the CLIC nurses are not available. The CLIC nurses cover a huge area, and there are only 2 of them!
While Jamie's blood was going through Dave went off and bought a new camera, as our other one is only 2 mega pixels.
Auntie Linzi kindly went to Paignton to get Charlie officially registered for us, thanks Linz
When we got home, we picked up Frodo the Dog, and went down town, where Jamie and Charlie played in the new play park, with cousin Archie... well Jamie played, while Charlie was chased round by Auntie Linzi and me... he kept trying to get wet in the water feature!!!
Next we went to the back beach, with Auntie Jo, Auntie Linzi, and Uncle Sean, for a quiet drink, and some fish and chips.... that was the plan, but Charlie was tired, and decided to be a pain... I allowed him to paddle in the water, but when he kept trying to go too deep, I had to take him out, and he had one mother of a tantrum!! I took him off, back to the car, still screaming, and drove the car round to the back beach pub, where everyone was, still screaming, where we re-joined them, Charlie in his pushchair, still screaming!!!!
I'd gone off the idea of fish and chips and a drink for some reason, so we all said goodbye and headed for home, where the boys went straight to bed.
On Wednesday Jamie and I had a long lie-in, while Dave took Charlie to Taunton to pick up Nana Pat, and give Grandad Jeff Charlie's birth certificate, so he could go back up to Newport for Charlie's passport.
My Auntie Sarah came to visit, with Charlie's birthday present, then later on Nana Teresa, Grandad Paul.
Nana Pat and Grandad Jeff stayed over, so they could look after Charlie on Thursday for us, as we had an appointment at Exeter with Jamie's Oncologist from Bristol, Dr Foot.
On Thursday morning Jamie went into school, to see his school friends, and have his class photo done. He stayed for 1/2 an hour after the photos, for a talk with Father Martin, and a play in the playground, before he asked to go home.
We met with Dr Foot, and Dr Teresa at Exeter Hospital, where we discussed Jamie starting oral chemo. The doctor explained that it won’t change the outcome, and warned us that it may not even work. If it does work, it could slow things down, and give Jamie some extra time. This is all depending on how Jamie handles the chemo... if it causes him and discomfort or starts to damage his liver we will stop it immediately.
Jamie will have Etoposide, by a daily capsule.
The doctor requested Jamie have an extra blood sample taken to test his liver function, she was concerned that his liver was lacking a clotting agent, which may be the cause of his line still bleeding.
The test showed his liver function was perfect, but Jamie was given a vitamin K anyway.
We got the general impression that the doctors didn't have much hope of the oral chemo having any effect, and that the doctor had given up hope for Jamie. She wasn't even going to see Jamie, until we asked her, and she said, "Oh I could I suppose"
After the hospital we went to Pizza Hut for dinner, before going to see a circus in Yeovil, kindly arranged by Dave Wallis, from the Somerset Bike Club that had arranged the helicopter ride.
Jamie was apprehensive, and didn't want to go at first, but as we were halfway there, persuaded him to give it a try, and that we could leave if he didn't like it.
He enjoyed parts, but couldn't understand the tight rope walkers.... asked why they were doing it... I realised, he wouldn't know that it's hard to walk on a rope... it just looked like a man waving stuff to him!!
He enjoyed the super hero part, where Batman, Spiderman, and the Green Goblin came out!!!
He was sitting there, trying to hide his smile!!!
He even got his photo taken with Spiderman during the intermission, where he was also given a goodie bag.
Yesterday we had a quiet day at home, or at least we tried.
Today Jamie's gone off with Nana Teresa and Grandad Paul, to see his cousins, Jack, Charlotte and Patrick, at River Dart Country Park.
It was planned to be his Baptism today, we tried to re-book the originally planned one for 26th June, but we couldn't get hold of the priest all week, until Friday.
So we have re-booked it for after we return from Legoland Denmark
Next weekend we are off to Legoland Denmark, where we will meet Lego Designer and Jamie will have a special presentation, of the Star Wars Lego Death Star prototype!!
I will try to update a bit more regularly, but assume that no news is good news.... If you want to visit, please phone to arrange first, as we are trying to limit the number of visitors at one time. It's best to phone in the morning, after 10am, we'd prefer people not to phone in the evening. If you don't get an answer just leave a message... please don't keep trying, we may be ignoring the phone for some peace and quiet, don't take offence, the phone never stops ringing, and by early evening I could throw it down the toilet!!!
Jamie's condition doesn't change on a daily basis that dramatically, so phoning for a daily or half daily update really isn't necessary, and puts more strain on us. Trust us we'll ring if there is any news....
For those who don't have our phone number, it's best to email messages, or leave one in the guestbook
Love Kelly
XXXXXXXXXXX
Thursday, June 9, 2005
Well it's been a hectic week, but we all made it through!!!
On Friday we had a visit from Jamie's friend Jack, and family; Paula, Rob and brother Joseph, from Bristol. Jamie was so pleased to see Jack, and was off playing upstairs and downstairs, and all over the house. Cousin Harry came over too, so it was madness, swords and toy guns all over!!
Later on Friday my Mum and Dad arrived back from their holiday in Spain, and we all spent some time together.
The next few days are a blur... we can't remember what happened on which days!!!
Auntie Jo and Cousin Josh came to visit, Auntie Lynne, Great Grandma, Cousin Lana, Charlotte and Claudia, Kim, Gav and Harry....
Nana Pat and Grandad Jeff have been staying here, so they an be lose and support us... they've been great... grandad Jeff cut all our lawns, cleared some junk, walked the dog, and washed the car
Nana Pat's launched into Fundraiser mode, to raise some money to spend, to give Jamie some special times
On Sunday Uncle Glen came and took Jamie and Cousin Harry for a ride in his Police Car!!!! Flashing lights and sirens!!
On Tuesday we took Jamie up to Taunton, to Nana Pat's house. There Jamie and Harry were picked up by Orchard FM's Black Thunder and driven to a field nearby... Wow!! When we got there, there were TV cameras, radio reporters, and newspaper reporters, as well as Somerset Motorcycle club, staff from Asda Taunton, Fire Brigade, and Police!! And lots of people, all for Jamie!!!
1st he got to sit on a Police Motorbike, then the England Cricketer, Andy Caddick dropped by in a helicopter!!! After steering a Ferrari, Tractor, and Rolls Royce around the field, Andy Caddick took Jamie and me up in his Helicopter. We flew over to Butlins, Minehead, across the beach, low, then back. Jamie was given control of the helicopter at times!!!
When we landed, Jamie was presented with a cheque for £2,120, which had been raised since 10.30am the previous morning, by West Somerset Motorcycle club!!!! This was to pay for Jamie to visit Legoland Denmark... Thanks Guys
The Fire Brigade let Jamie and Harry steer a fire engine around the field, and use their hoses... we took the dog with us too, and he and Charlie loved the water!!!!!
Next Jamie got to steer a breakdown truck around, before having a ride on the back of a Harley Motorcycle...
After this Jamie was pretty exhausted, and was given a ride back to Nana Pats, with Harry, in a Rolls Royce.
We thought they would all sleep well, after a day like that, but they were up till gone 11pm at home!!!!!
On Wednesday Jamie was at the Hospital for 8am, to have Platelets before his central line was fitted, then was allowed home in the evening.
His blood counts are good, and he's still making white blood cells, which is good. He has only needed platelets every other day since we returned from Bristol, and is active and seems well.
Today was a quiet day, by ourselves... chance for me to get some cleaning and Ebay packaging done. Charlie played in his paddling pool, while Jamie and Daddy built Lego upstairs.
Then this afternoon, we took a stroll around town, bought more Lego, and went in the arcade for an hour. Jamie loves the penny shuffle machines!!!
This evening Nana dropped by to give Jamie a Lego Millennium Falcon, which was donated by a CLIC supporter, Paul, from Taunton Branch (Thanks Paul)
Dave and Jamie were building Lego all evening, until Jamie fell asleep on Charlie's bed!!!
So we're all fine, bearing up, and trying to make the most of Jamie's time left... trying not to dwell on it, and taking strength from seeing Jamie looking well, and being normal!!!
It's getting hard, having to tell people the news, and the endless phone calls... I'm ok in the morning, but as the day goes on I feel less willing to talk to people, answer the phone etc....
If you're going to phone, best to do it late morning, I'm in a better mood!!! It's not anyone's fault, just part of my depression, which is worsened by the present situation. I have trouble with a lot of people being around me at the best of times, but I've had to cope with it recently, as people need to see Jamie, and we need support from people.
Everyone's been great, and so helpful... I don't know what we would have done without our family's support. Thank you guys XXXXXXXX
We have planned to have the boys Baptised at Our Lady and St Patrick's Church, hopefully Saturday 18th June.
The trip to Legoland Denmark is booked for Friday 24th June; hopefully we'll get our passports by then!!!
If anyone wants to send Jamie gifts and cards, please do so, through www.postpals.co.uk
Any donations are welcome, through Paypal, to atomicblonde@tsilatnem.eclipse.co.uk (it's probably best to copy and paste the email address!!!)
Thursday, June 2, 2005
We arrived at Bristol hospital on Monday. Jamie had a bone marrow aspirate on Tuesday, then Wednesday had an ultrasound.
It's not good guys... I never thought I'd have to ever write such an email ever.....
Jamie has relapsed, in his bone marrow, and Liver... no tumours, no pain
The Dr has said that this time it can't be cured
Today we talked about treatments to ease/comfort him during what time he has left... they could not say long, but we believe it could only be weeks, 3 at most.
Jamie sleeps most of the time, and is awake in 2 shifts, for 3 hours at a time. During this time he is happy, and active, and doesn't appear at all unwell. He doesn't even look unwell, which is why we are so shocked!!!!!
This evening, after he was given some Platelets, we took Jamie home, where we know he'll be most happy and comfortable.
We were given options for chemo in hospital, followed by Bone Marrow transplant from a donor, or oral chemo at home, both will drop his counts, and make him lose his hair, and he will feel crap, so wont want to do much. We want Jamie to have some special happy time, so we have decided not to fight, what is a losing battle. He has 12 isease showing up in his bone marrow aspirate, which is more than when he was diagnosed.
Considering that last Monday Jamie was well, and at school, this is a very aggressive form of Cancer, and has moved very fast. Any intervention will cause Jamie discomfort, so we are going to support him with pain care and blood transfusions, and let him slip away happy and peaceful.
Jamie will need blood and platelets 2 or 3 times a week, for which we will go to Exeter hospital for. It only takes a few hours, and we can be back home again.
Today, Jamie was the most active, and awake for the longest he's been since we arrived at Bristol.
We took him to town, as he wanted a new PC game, and he ate a bit of MacDonalds.
Then when we arrived home, at around 6pm, he stayed awake until gone 10.30pm, playing Lego, and PC games with Daddy and Nic (Daddy and Jamie's friend)
Then when Daddy popped out, Jamie came upstairs to bed, with Charlie, Nanny Pat and I, to our giant bed, which is our bed and Jamie's pushed together. There we watched Stuart Little 2, until Jamie fell asleep.
I haven't had a chance to read any of my emails yet... we've just got home, and my power lead for the laptop is broken, I will get a replacement tommorrow.
I had to phone my mum in Spain tonight, and tell her the bad news, so she and Dad can come home early from their holiday, to spend some precious time with their grandson. My dad will be hit very hard by this, and I feel so sorry that I wont be there when my mum has to tell him.
We have some great stuff planned for Jamie; tommorrow his friend Jack from Bristol (Cancer Buddy) is coming to visit, also cousin Harry, Auntie Jo Jo, and Coralee.
Over the weekend his uncle, a policeman, is taking him for a ride in his police car.
We have started to arrange a helicopter ride, with another uncle, a tank ride with a friend of a friend, we've arranged transport to go to Lego Land, trying to arrange a ride in a firetruck!!!
Tonight, while I was making the giant bed up, I could see Jamie's brain ticking over, he asked why we were all sleeping together, so we explained it's because he's poorly again. We will tell him when the time is right, when we feel he will accept it. I think he is scared to ask just yet, so we will take one day at a time... how do you tell a 5 year old hild that he is dying, and that we can't do anything to stop it?
I will try and do regular updates, to share his precious time, with all concerned. If anyone would like to visit, they are welcome, but please call first, to make sure we aren't due at the hospital, and to check when he's likely to be awake, and at his best.
If you can't come, we understand, some will find it hard, and we respect that.
Love to you all
Kelly
XXXXX
www.beebo.info
Sunday, May 29, 2005
Well I kept meaning to give an update, on how well Jamie has been, and what we've been up to, but we've been so busy that I haven't got round to it.
Jamie's at school full time, and enjoying it, and doing so well, he was awarded "Star of the Week" last week.
Dave has plans to start up business again. Charlie is due to start nursery. I was doing 1 day per week respite, as a volunteer at a local zoo for rare and endangered monkeys and primates, and loving it.
We've pretty much got the house straight.
On Friday night it all started going pear shaped!!!
Jamie's been coughing for a few days. And on Friday, at about 2.30am, I went in to put some Karvol on his PJs, to discover he was red hot, with a fast pulse and noisy breathing!
His temperature read 39.3C, and after my mum, just having phnemonia, I phoned the doctor.
After going to the local out-of-hours GP, and then onto A&E, Jamie had a chest X-Ray, which was all clear. They admitted him over night, till his bloods came back in the morning.
Verdict????????
They checked to see if it's a virus or a bacterial infection, and apparently it's sitting on the fence. They were concerned that his white blood count was low, and his Platelets were 50!!!! But after a phone call to our Specialist in Bristol, they decided it was Normal-for-Jamie!
So we were sent home and asked to return to the hospital for a blood check today.
Jamie charmed the pants off the nurses, with his great manners "excuse me - can I have my Cannula out now?" and his mature behaviour, how he co-operated for all procedures. I never believed exactly how good he is until I had my second child "my punishment for being a nightmare child - Charlie"!!!!!
Since Jamie's visit to A&E, plus overnight stay at the Local hospital, his fevers have almost subsided, but his general health and mood has worsened. He isn't himself, and is tired and very emotional. He's barely eaten, and is having trouble going number 2s!!!
We returned to the local hospital today, as planned, for more blood tests, and the results are not good!!!!
YESTERDAY: Hgb= 9.6, Wc= 4.5, Neut= 2.6, Plts= 37
TODAY: Hgb= 9, Wc= 6.6, Neut= 1.6, Plts=20
The doctor in charge said it's possible that Jamie's bone marrow isn't coping/holding out, and may need support. We were asked to go back 1st thing tommorrow for more tests.
Then we got a phonecall from our specialist in Bristol, Dr Foot, asking if we can go to Bristol early tommorrow instead, as they have all the facilities there, for bone marrow support, testing etc...
On July 28th we would have reached the 2 year mark. And here we are again!!! Weird how things happen!!!
My parents are abroad on holiday, Dave's Parents are in Grimsby; just the same as when he was first diagnosed!!!
I will keep you posted
Love Kelly
XXXXXXXXXXX
www.beebo.info
Friday, April 8, 2005 6:36 PM CDT
For all those who have been checking in.... sorry!! I forgot to mention, since Jamie is well these days, I will be updating just once a month...
Yes, Jamie is still well, and much a different child that left the hospital nearly 1 year ago!!!!!
This time last year, Jamie had just had a Lung Biopsy, and had just come out of ICU, after his Pulmonary Hypertension started!!!
Today Jamie is a very active and noisy 4 (nearly 5) year old, with too much energy!!!
When Jamie was a baby, he never cried, and smiled loads... he was more like a doll, and was no trouble... My mother-in-law used to say that he doesn't know he's been born, and will wake up one day!!!!
He has woken up!!!! I was a hyperactive noisy child, and my mum thinks it's amusing that Charlie is just the same. But now, they both are!!!! HELP!!!!!
The house is sooo noisy, the boys run around, and are always so noisy!
Jamie's definitely over his Flu, and returned to school before Easter break.
On St Patrick’s Day his school attended a church service, across town, and afterwards Jamie walked back to school, with his class... it must be over 2 miles that he walked!!!
We saw his local oncologist on 24th March, for check up, and she was very pleased with him... and didn't even feel she needed to do a blood test! He’s having a urine test though, as routine, to check for dopamine levels and catecholamine (don't ask!) The results take a few weeks.
This tells if the disease is active, I think...
Thankfully, Jamie doesn't spend as much time on computer and video games as he did before... he is very much into drawing and colouring. We do a lot of arty stuff, and he loves to play with his action figure toys.
Charlie has picked up so much from Jamie. Today we saw Charlie doing Jamie's "moves", where Jamie imitates karate/ninja type poses, whilst swinging his sword around... except Charlie looked more like he was doing Sumo wrestler poses!!!!
Charlie's dips in the toilet bowl continue!!! We have noticed that he fills his nappy when he gets in the toilet bowl, so good on him, he's getting in the right direction, although he refuses to sit on the toilet seat or potty!!!
Jamie's been a popular boy lately, and has been invited to 2 parties, by friends in his class!! Last weekend, and this weekend, this is fancy dress... Jamie is going in his army jumpsuit, and wants to take his weapons.
We are waiting for an appointment for Jamie with the Audiologist, as his hearing has been deteriorating, since Christmas. We were told that we had to wait, as Jamie had a cold, and it was thought that it would affect his ears.
His cold has gone, but he still has the constant runny nose, which I think he had before diagnosis!!!
The chemo that he had, Cisplatin, carries a risk of hearing loss, either high frequency hearing, or total loss.
With high frequency loss, it's just certain sounds, like s and t, maybe, so it would appear like selective hearing. We're going to get it checked anyway, and he may need hearing aids, which isn't much of a big deal... it's a small price to pay for his health.
His stomach seems to be on the mend, since his surgery in December for his twisted bowel... today Jamie did his first "real poo!!" It was quite an exciting event, sorry if you don't want to know, just skip to the next paragraph.
Usually Jamie's stools are extremely loose, and very aggressive, which leave a lot of mess in the toilet!! This is why he is still in nappies at night, as pull-ups wouldn't hold it in!!! These days he doesn't do any at night, so we are hoping to get him out of night nappies.
Jamie's appetite is still great... he practically eats all day! And after seeing Jamie Oliver's programs I buy in fresh meat and veg, and we rarely eat processed foods now. Last week Dave and I had our 1st MacDonald’s in 2 months!!!
Pat and I have started an Ebay business, selling craft stuff and books, so do a search for Beebos_crazy_ladys and take a look at our stuff. (You need to go to advanced search, and on the left hand column there is the option to search for items by seller)
I have started Voluntary work, at Shaldon Zoo!! I go every Wednesday, and absolutely love it. It is a small zoo, with rare species of monkeys, 2 Ocelots, and other Primates.
On my 1st day I cleaned out the Porcupines, who share their pen with 2 macaws. Then last week was even better, I stroked a brown lemur, under his arm, which they like, and then hand fed ring tailed lemurs with banana. I then cleaned the porcupines out again, and got bitten by a Macaw!!! To top the day off we spent an hour or so, trying to catch an escaped Potoroo!!!!
Week after next is the merger between CLIC and Sargent. I will be attending the launch party in the Newton shop! We will then be CLIC Sargent!!!!
I will try and post some photos soon, and I'm trying to get some short movies of the boys on his main site
Love Kelly
XXXXXXXXXX
Sunday, March 6, 2005
Well nothing much has changed... Jamie has got his Flu back! The antibiotics worked great the last time, and he was well by the time his mate Jack came to visit on the Friday.
Jamie had a great day with Jack. They played nicely for hours, and then we all went for a walk with the dog, on the beach.
On the Saturday we drove up to Brean Leisure, where we met Nana Pat, Grandad Jeff, Harry and Josh.
That afternoon we all went swimming. Charlie had been out of sorts, and grumpy, and this was the first time we'd seen him smile in 2 days!! He simply loves water.
After dinner we went to see the evening entertainments, where Dave and I spent most of the evening chasing Charlie around! Jamie had a lovely time with Josh and Harry.
The next morning we had another swim, before setting off home.
Jamie became unwell again last week. He started getting high temperatures at night, which would disappear in the morning. He went to school on Monday, and was unwell Monday night.
On Tuesday he woke up with a black eye, and said that James, in his class had hit him! I phoned the school, but no-one seems to know anything!
On Thursday we went to see his Oncologist, who suggested he stay off school until he's over it.
On Monday I went to see a dermatologist, about the itch-ness on my ankle, which started when Jamie was first diagnosed. I was prescribed various creams and some tablets to take at night. I was warned that the tablets may make me drowsy... which was an understatement... they knocked me out cold for up to 14 hours at a time!
Charlie is also unwell... I think it's an ear infection, as he's out of sorts, not eating, or sleeping, and keeps holding his ear. I'm taking him to see the doctor tomorrow.
I'm also taking Jamie along with me, to see our Health Visitor, who hasn't seen Jamie since last year.
It's Jamie's birthday next month, on the 15th. He will be 5!!!! He has requested to go to Rainbow Funhouse, in Torquay again. We are hoping to invite some school friends, as well as his cousins, and his mates jack and Nicole.
Jamie's Cafepress Shops are going down well, he has sold some stuff already, and I am hoping to add more soon.
Love Kelly
XXXXXXXXXX
www.beebo.info
Saturday, February 12, 2005
I’ve quite a lot to update this time!!!!!!
At present Jamie is on Antibiotics… When he returned home from school on Friday, he appeared well, and was running around like mad with Charlie. I did notice that he looked pale, but though he was tired. By 6.30pm, he seemed very tired, and said he had a tummy ache. I helped him to lay don with a fleece blanket on the sofa to watch a video with Charlie. I came into the lounge just before 7pm, and he was sound asleep. As I began to put a nappy on him, I noticed he felt red hot all over, so checked his temperature, and it was 38.4 C!!!!!! Luckily after 10ml of Calpol his temperature came back down to 37 C, and he slept soundly all night.
This morning he woke up, grumpy and hot again, with the same 38.4 C temperature. I gave him 10ml of Calpol, and the temperature came down again. I phoned the on-call GP, just to be sure, as I wasn’t sure if he required Antibiotics for this, what seemed like mild Flu. The GP asked us to come to the local Hospital, just 2 minutes drive, where I played role of Doctor, and told him what was what, and he agreed that Antibiotics are a good idea to be on the safe side. Bless the doctor, he was terrified!! I don’t think he’s dealt with many Cancer/post transplant patients, and seemed scared to cock up, so assumed I know best!!!!
Jamie has done well, not to catch this flu, until now, as Charlie, Dave and I have all been ill with it, with high temperatures. Also, Jamie has been on 400mg of Acyclovir 4 times a day, for over a month, to protect him from catching the chicken pox epidemic at his school!!!! There have been at least 2 children off school with chicken pox, per week, since he started!!
The Doctor said that it isn’t unusual for someone who’s had the Flu Jab to get mild Flu. The Flu jab just reduces the worseness of it when you catch it.
Apart from the Flu, Jamie appears to be in perfect health, and full of energy!!!! His energy levels are soaring; I don’t know how he keeps going!!! He has grown to 100.10cm, and his weight is great, although he still hasn’t moved to a higher clothes size. He was in age 3-4 at diagnosis, and still is now!!!
Jamie had an appointment with his Bristol Specialist of Neuroblastoma, Dr A Foot, who said that it may take a while for his body to start growing again, after all the interference that it has received. There will be a point when they say “Hey, he’s not growing much!” and consider the options, growth hormones maybe.
It is now time for Jamie to start all his immunisations, as he is over 12 months post transplant, and is very well.
Dr Foot said that because of Jamie’s energy levels, and good health, the future looks very promising!!!!!!!
He is due his next load of scan in the spring, around Easter.
Jamie had an appointment with the Consultant Paediatric Cardiologist, regarding his Pulmonary Hypertension, back in January, which I mentioned. I received a letter, basically discharging Jamie from the department… it reads…….
---------------------------------------------------------------
DIAGNOSIS: Resolved Pulmonary Hypertension
I reviewed Jamie in the Cardiac Clinic. He has plenty of energy and cardiac examination is normal. His echocardiogram shows no evidence of right ventricular hypertrophy or dilation. I couldn’t pick up any significant tricuspid or pulmonary regurgitation to accurately predict his RV pressure but the findings would suggest that the right heart pressures are not elevated now.
From experience for Pulmonary Hypertension after chemotherapy is that it is probably not going to recur, but it would be sensible if we do see him again from time to time, just to reassess matters. I have arranged a further appointment for 12 months.
Wow!!!! Things are going great, in Jamie’s department!!!!!!
This weekend he has insisted that he still wants to spend the weekend with Nana Teresa and Grandad Paul. They have been given instructions on temperature control, and medication. Nana may be taking him swimming tomorrow, as she often does with him. The water will keep his temperature down, and the chlorine should clean his system out!
Next week is half term; we are visiting our friends, Alan and Sarah, with Nicole (http://www2.caringbridge.org/europe/nicole/) and Lauren, in Torquay. We shared a flat at CLIC House when Jamie and Nicole were first diagnosed. Barclays bank are presenting CLIC with a cheque for money that they raised, because of Nicole (Alan was an employee at Barclays before Nicole was diagnosed) As I am CLIC Chairman for the Torbay Branch of Fundraising, I will be accepting the cheque, and the newspaper have been invited to take photos, of us all.
Next Friday Jamie’s friend Jack is visiting from Bristol, with parents Paula and Rob, and big brother Joseph. Jamie hasn’t seen Jack for ages!!!! We are looking forward to all going out for lunch again.
Then next Saturday we are having family break, with Nana Pat and Grandad Jeff, at Brean Leisure, for the weekend. Even Frodo is coming!!!!!
Jamie is getting on very well at school, and has started bringing home reading books with WORDS in!!!!! The other week he actually wrote his own name, all by himself!!!! I have scanned it, and it is on the Photo page (Link at top of page) He had been saying for a week or so, that he could write his own name, but refused to show me! Then he just did it!!!
His girlfriend Keris is still nuts about him; Dave caught her gazing adoringly at Jamie across the classroom, one morning when he dropped Jamie off. Dave and I take turns in getting Jamie up, and taking him to school.
I met Keris’s mum, who blushed when she told me that Keris has told her that she wants to marry Jamie!!!
Jamie announced this week that he has another Girlfriend, as well as Keris, called Andrea. Apparently Keris and Andrea don’t get on with each other!!!!! I wonder why?!!!
Charlie is growing fast! He’s proving to be a handful… I’ve dusted all my toddler taming books that I never needed for Jamie. He is a bit like a Tasmanian Devil, rushing around the house, causing chaos. Well that’s not quite accurate…. In the daytime, he is usually very well behaved. When he first gets up, he likes to watch Cbeebies, then he has his favourite videos on, at present they are Scooby Doo and Thomas the Tank Engine. He plays well, and is good, until Jamie comes home. Then he turns into Taz!!!! Maybe it’s a combination of attention seeking, and tiredness that fuels it. His usual mischief’s are to try and get into the fridge, seeking out the dog’s water bowl, to sit in, shutting himself in the toilet and putting toys into the toilet, swinging on the curtains, throwing the cushions off the sofa, trying to get at Dave’s PC, and running around the garden with no shoes on! Just as I am clearing up one mess, he’s running off to make another, or cause mischief somewhere else!!!! Love him!
Charlie has started a tradition, of waking Lee up in the morning, with something different each time. Lee is Dave’s best friend, who practically lives here too. We call him Uncle Lee; Jamie adores him.
Jamie actually started this, as he always taps on Lee’s door when he gets up in the morning, but never goes into his room. Then one morning, while everyone was asleep, Charlie tried to administer a Vic’s type Inhaler up Lee’s nose!!!! The next was toys in Lee’s bed, and then this morning was the best of all…… Charlie tried to brush Lee’s teeth with the toilet brush that he’d found in the bottom of the airing cupboard. I thought this was a safe place for the toilet brush, out of Charlie’s reach, but he has recently grown, and can now reach most door handles!!!
Debbee and Tony came to visit, as mentioned in my last update. It was great to see Debbee; I have missed her since she moved to Holland. She has returned back to Grimsby now, and it is a shame we are so far apart, as I considered her my best friend, despite only knowing her for 5 years. Well I thought I knew her, but it turned out that I don’t, and she obviously doesn’t regard me as such the good friend that I regarded her. Let’s just say that we obviously share the same taste in men. So my taste in friends isn’t for the type that pursue their friend’s husbands, and try to break up a rock solid relationship that has weathered through the worst of storms, and come out the other end stronger than any relationship that she’ll ever be worthy of.
Needless to say, we will not be inviting them to our home again.
Dave is still decorating the lounge!!! He has done the walls, and must have had artist’s block, for he hasn’t done the glossing yet, so it still looks like we’re either moving in, or our, as all the photos and ornaments are still put away!!!!
We dog sat for my Auntie Sarah’s Boxer dog, Ruby, and her 2 puppies last week. It started off very hectic, with Frodo and the puppies fighting, and Frodo not realising that he was a bigger puppy, which was resulting in the boxer puppies getting hurt, then Ruby getting protective. I had to send the Boxer puppies and Ruby to their crates/cages, and let them out in shifts, until the next morning, when they seemed to have calmed down, and Frodo started playing more gently. I think it was a great socialisation experience for Frodo; he really enjoyed having Dog company. I walked Frodo and Ruby together on their last day, and Frodo had a great time, running around with Ruby.
Sadly the Woodleys (http://www2.caringbridge.org/europe/matty/) are moving to France in 2 weeks!!! We are hoping to get together, with them, and the rest of our Cancer Gang, before they go.
The main site, www.beebo.info will be transforming, slowly over the next few weeks. I have signed up with Zeocast, to display photos more easily, and have nearly finished the first phase in updating the Warriors.
I have put some photos on the next page, of the Dog Sitting, and Jamie’s developments. I hope you’ve also noticed that the main picture has been replaced with Jamie’s first ever School Photo!!!!!!!
The next update is due in another 2 to 3 weeks
Love Kelly
XXXXXX
Tuesday, January 25, 2005
I know, I broke my promise about the new photos, sorry!
Ive been trying to get the house straight and finish the roo swap around upstairs and hopefully do up our bedroom, to no avail! Too bogged down with day to day house work and Charlie!!!!
I have more plans for the site..... a page with a theme of "Things Jamie says and does" Which will be the cute and funny stuff!!!! I got the idea from a website called "Things me and Margaret argue about!" - Dont ask!!!
I apologise for any missing letters ... mainly Ys Ms and Cs, as my keyboard is getting old and obviously has Parkinsons or Dementia!!!! Charlie beating it at every opertunity hasn't helped either!!!
Ive decided not to bother asking Jamie about his day at school, as he never seems to be able to remember!!! He always offers a titbit later when the pressure is off!!!
Todays was that he had to go sit on the carpet today for talking too loud..... This is something I pull Jamie up on all the time, he shouts when he's right next to you! But when I asked hi to tell Daddy at dinner and there was a disussion, it turned out that Jamie had atually shouted at a classmmmate, beause he had lied!!!!
Jamie seems to be enjoying school, and has many friends that say hello and goodbye. His energy levels are great, I expected him to be tired, but he's full of energy when he gets home!!! We are planning ativities after school like swimming, and soft play area to drain ore energy!!!
He is keen to do his writing and talk about the letters. I am so impressed by how fast he's learning new stuff at school!
Today he told me he'd made a new friend, called Aaron... who apparently had a poorly tummy and an operation like hi!!! How much of this is true I have no idea!!!!
Frodo has grown loads, and is almost full dog size!!! He's a model citizen lately, and hasn't dug the lawn for a whole week! His only mis-demeanors hae been chewing the back doormat whih he'd pulled out from it's overnight hiding place!!! He was very apologetic though!!! I know what you're thinking how can a dog apologise? Only dog owners will understand they do actually feel remorse, and say sorry!!!!
This weekend Debbee and Tony are visiting from Grimsby!! I a dragging them on a sponsered walk for CLIC on Sunday with Nicole's family, and Barlays branch of Teignmouth!!!
Dave is 1/3 through deorating the lounge - Magnolia!!!! The lounge is bare, with no pictures or ornaments!
We had a new carpet fitted last Wednesday and it snapped Dave into decorating mode!!! The only problem is that when the carpet arrived, its either the wrong one, or we chose the wrong one!!! It is more blue than brown so the curtains look odd, as they are beige!!! The sofas are light green! I am ordering some Kharki curtains to bring it all together....... I will put up photos when it's done!
Beebo.info will be changing again soon, so check back regularly!!!!! I will be adding an NED Warrior section, Things Jamie Says, and general different look.
Love Kelly
XXXXXXXXXX
www.beebo.info
Sunday, January 16, 2005
We're still here!!!!
Slack on the ole updating again... I apologise about that!
Jamie came home from hospital as planned, on 20th December, in time for Christmas... that was a close one!
We had a great Christmas, thatnk you to everyone for all the presents, and apologise for not sending Christmas cards, I didn't get time after Jamie went into hospital so inconveniently!!
Jamie started school on Wednesday 5th of January. We decided to drop him in at the deep end and go full time straight away. So far he is coping well, and loving it!
I will do a better update next time, promise. This one's rushed because I need to get to bed!
Some bad news... Jamie's friend David gained his Angel wings this morning, after relapsing. He was at home, with Mum, and family, and slipped away peacefully with them at his bedside. He will already have met up with Angel Owen, and they are probably getting up to mischeif with stink bombs, no doubt!
We broke the news to Jamie, expecting him not to really understand, and said we'd go to the funeral to say goodbye to David, who wouldn't be there.. we had to explain to Jamie that he'll never see David again, because dead means he's gone. Jamie was upset, and reached out to Daddy for a hug, and said, "But I wanted to give him a hug!"
We said he could give it to David's mum at the funeral instead.
I hope you like the new background, it took ages!!! I have added a photo of David in the Photo Album above, and will be adding more photos to the main site www.beebo.info this week.... promise!
Love Kelly
XXXXXXXXXX
Sunday, December 19, 2004
All is well!!!
Jamie arrived safely at Bristol Children's Hospital, by chauffeur driven Ambulance, accompanied by Daddy, on Tuesday evening. He then went to Theatre, for untangling on Lower intestine and bowel. This took nearly 2 hours, and Jamie arrived onto Ward 34 with an Epidural, nasal gastric tube and cathetar.
What occured to Jamie is due to the scar tissue from his previous abdominal surgeries, sticking together, and then the intestine and bowel twist and sometimes tangle together because of this. Jamie should have been in alot of pain, but didn't appear to be. He has proved to have a high pain threshold and we suspect he is clever, in denying pain to prevent interference.
It became obvious to us quite soon that Jamie was unhappy to be back in hospital, unhappy to have all the tubes, and really hacked off to have a board strapped to his hand, to support his cannula, which was stopping him from playing on the playstation!!!!
We quickly found a doctor to remove the board, and Jamie was able to play on his Playstation, which made him a bit happier.
On Thursday morning Jamie was able to sit up unaided, and the Epidural had stopped working, so it was removed, along with the cathetar, and Jamie ventured to the Playroom for a while.
On Friday evening Nana Pat came and sat with Jamie while Dave and I took Charlie home, to catch up on Laundry, mostly that Jamie had caused by puking, and to get the house ready for Jamie's return, which we were told would be Wednesday before Christmas,
On Sunday morning we received the good news from Nana Pat in hospital with Jamie, that he was allowed home Monday morning, as he'd been eating all day Saturday, and drinking! He'd even returned to his normal self in our absence, and was already driving everyone mad with non-stop chatting!!!!
Unfortunately Charlie was ill Sunday morning, so stayed at home with Nana Teresa while Dave and I went up to visit Jamie for the day, joined by Grandad Paul.
Nana Pat and I went to Ikea, while Dave and Grandad Paul took Jamie into Bristol shopping with Nana Pat's money, that Jamie had conned out of her for drinking!!!!
At present I am at home with Charlie, and Jamie and Daddy will be coming home tommorrow!!!!
I have put new photos on the photo page
Love Kelly
XXXXXXXXXX
Tuesday, December 14, 2004 12:01 AM CST
Just a quick news update......
Jamie became unwell at 1am Sunday night, being sick, and pains in top of leg, so he went into Exeter hospital on Monday, and was admitted for observations.
This morning he started antibiotics, as they thought he had a tummy bug, until they X-Rayed him later today, and discovered that his Small Intestine has twisted, so he's been transferred up to Bristol by Ambulance, with Daddy, for surgery ASAP. Apparently it's quite common for this to happen after the kind of surgery that Jamie has had, even this long afterwards.
I am off this evening, to meet them at the hospital.... we will be on Ward 34, hopefully not for long.
I will update you all hopefully before Friday
Love Kelly
XXXXXXXXXX
Thursday, November 18, 2004
Not too bad, only 4 days late!!!!
Everyone is happy and well!!! Jamie has just started week 2 of his Accutane-on cycle, and so far is coping very well, with hardly any tearfulness, and bad moods.
We kept him off school for the last couple of weeks, because of infection risks, and he also had the runs after going to clinic, where there was Norwalk Virus in the hospital. We had phoned before and expressed our concerns, and were assured, that Jamie would be safe. It hasn't been confirmed that Jamie had Norwalk, but is a coincendence that both Jamie and Dave, who went to clinic, had the same symptoms, at the same time, then Charlie did a few days later. We were told that Norwalk isn't airborn, but I think that's contriversial.
So Jamie isn't getting to Nursery school much, with chicken pox, mumps outbreaks etc... then when it's safe, he happens to be on-cycle on Accutane, and very clingy and not really appropriate to send to school!
we aim to try and send him tommorrow, finger crossed!
Bridgewater Carnival was fun. we walked the circuit before it started, and collected on behalf of CLIC. Jamie was a born collector, he really has the knack!! He would notice people put their hands in their pockets, and shove a collection tin under their nose, even when they were going into pockets for tissues!!!
Things are going well with the new puppy, Frodo, he is a good dog, and hasn't destroyed anything else, apart from one of my trainers! He sits on command, and comes when I whistle!
He had his last jab last Monday, so i have tried taking him out a few times, since last Friday.
It generally consisted of me dragging Frodo around the Cul-de-sac for 5 minutes, then the next time a bit longer, then yesterday we managed to get out of the cul-de-sac!!!
The neighbours must think I'm awful!!!!
Then today we went for the biggie!!! A proper walk!!!
I made the mistake of taking both kids too... Jamie walked, and kept trying to "help" with the lead, Charlie pulling me ahead, while I tried to drag Frodo and Jamie behind me!
Frodo started to get the hang of it by the time we'd taken 10 minutes to get to the edge of the nature reserve, he even looked like he nearly enjoyed it!
The next obsticale was another dog, with owner! I froze, not quite knowing what to do... luckily the other dog was freindly, and just wanted to sniff, and Frodo coped well!!!
After dragging Frodo, and dangling Charlie, down a steep hill, through the woods, into the valley, we entered a open grassy area, with a fenced off playpark. Jamie ran off into the park, while Charlie ran off into the distance!!! Frodo was walking well by now, and definately starting to like it!
After recovering Charlie from the next field, I returned to find Jamie running around with just one shoe on!!! As I recovered Jamie's shoe from gate of the park, Charlie managed to stand in some runny dog poo, which his beige trousers soaked up nicely!
We are now in the middle of a field, I have Charlie's reins in one hand, and Frodo's lead in the other! I am shouting for Jamie to stop running around and "sit down" on the floor so I can put his shoe back on. Frodo was the only one to sit, at which point I heard laughter over my shoulder.. the other dog owner was creased up at my dilemma, and Frodo's misunderstood obeidience!!!
After recovering Charlie from the next feild again, we decided to head for home... Frodo was having a great time by then.. I was hot, stressed and sweating! I thought Dog Walking was destressing!
It took 1/2 an hour to trek up the Valley, to our house, as the boys had to collect sticks and pine cones on their way!!
We reached the residential area, and I remembered that I didn't have any plastic bags for poop scooping! So we spent the last part of the walk, half running, and me dragging Frodo again, to stop him pooing on someone's front lawn!
When we arrived home, Frodo didn't want to go in!!!
So I guess he enjoyed his walk!
I will take Frodo alone next time, or at least with just one of the kids until I get the hang of it!!!
We had a family trip to the dentist today!!! We managed to get registered by saying we lived in Chudleigh! Dodgy, but there aren't any other dentists accepting new NHS patients, and our old dentist removed us from his list wheil Jamie was in hospital, and refused to reinstate us when I explain why we hadn't been for a 6 monthly check up!
Abbey Road Dental Surgery, Torquay, scum of the earth. They will be having a public shaming soon, I have a contact at the local newspaper, who is coming round to do a story! I will post it when it goes to print!!!
We are due to see our Bristol Oncologist in 2 weeks today, so I will do the next update Thursday 3rd December-ish!!!!
Check out the new photos
Love Kelly
XXXXXXXXXX
Thursday, November 18, 2004
Not too bad, only 4 days late!!!!
Everyone is happy and well!!! Jamie has just started week 2 of his Accutane-on cycle, and so far is coping very well, with hardly any tearfulness, and bad moods.
We kept him off school for the last couple of weeks, because of infection risks, and he also had the runs after going to clinic, where there was Norwalk Virus in the hospital. We had phoned before and expressed our concerns, and were assured, that Jamie would be safe. It hasn't been confirmed that Jamie had Norwalk, but is a coincendence that both Jamie and Dave, who went to clinic, had the same symptoms, at the same time, then Charlie did a few days later. We were told that Norwalk isn't airborn, but I think that's contriversial.
So Jamie isn't getting to Nursery school much, with chicken pox, mumps outbreaks etc... then when it's safe, he happens to be on-cycle on Accutane, and very clingy and not really appropriate to send to school!
we aim to try and send him tommorrow, finger crossed!
Bridgewater Carnival was fun. we walked the circuit before it started, and collected on behalf of CLIC. Jamie was a born collector, he really has the knack!! He would notice people put their hands in their pockets, and shove a collection tin under their nose, even when they were going into pockets for tissues!!!
Things are going well with the new puppy, Frodo, he is a good dog, and hasn't destroyed anything else, apart from one of my trainers! He sits on command, and comes when I whistle!
He had his last jab last Monday, so i have tried taking him out a few times, since last Friday.
It generally consisted of me dragging Frodo around the Cul-de-sac for 5 minutes, then the next time a bit longer, then yesterday we managed to get out of the cul-de-sac!!!
The neighbours must think I'm awful!!!!
Then today we went for the biggie!!! A proper walk!!!
I made the mistake of taking both kids too... Jamie walked, and kept trying to "help" with the lead, Charlie pulling me ahead, while I tried to drag Frodo and Jamie behind me!
Frodo started to get the hang of it by the time we'd taken 10 minutes to get to the edge of the nature reserve, he even looked like he nearly enjoyed it!
The next obsticale was another dog, with owner! I froze, not quite knowing what to do... luckily the other dog was freindly, and just wanted to sniff, and Frodo coped well!!!
After dragging Frodo, and dangling Charlie, down a steep hill, through the woods, into the valley, we entered a open grassy area, with a fenced off playpark. Jamie ran off into the park, while Charlie ran off into the distance!!! Frodo was walking well by now, and definately starting to like it!
After recovering Charlie from the next field, I returned to find Jamie running around with just one shoe on!!! As I recovered Jamie's shoe from gate of the park, Charlie managed to stand in some runny dog poo, which his beige trousers soaked up nicely!
We are now in the middle of a field, I have Charlie's reins in one hand, and Frodo's lead in the other! I am shouting for Jamie to stop running around and "sit down" on the floor so I can put his shoe back on. Frodo was the only one to sit, at which point I heard laughter over my shoulder.. the other dog owner was creased up at my dilemma, and Frodo's misunderstood obeidience!!!
After recovering Charlie from the next feild again, we decided to head for home... Frodo was having a great time by then.. I was hot, stressed and sweating! I thought Dog Walking was destressing!
It took 1/2 an hour to trek up the Valley, to our house, as the boys had to collect sticks and pine cones on their way!!
We reached the residential area, and I remembered that I didn't have any plastic bags for poop scooping! So we spent the last part of the walk, half running, and me dragging Frodo again, to stop him pooing on someone's front lawn!
When we arrived home, Frodo didn't want to go in!!!
So I guess he enjoyed his walk!
I will take Frodo alone next time, or at least with just one of the kids until I get the hang of it!!!
We had a family trip to the dentist today!!! We managed to get registered by saying we lived in Chudleigh! Dodgy, but there aren't any other dentists accepting new NHS patients, and our old dentist removed us from his list wheil Jamie was in hospital, and refused to reinstate us when I explain why we hadn't been for a 6 monthly check up!
Abbey Road Dental Surgery, Torquay, scum of the earth. They will be having a public shaming soon, I have a contact at the local newspaper, who is coming round to do a story! I will post it when it goes to print!!!
We are due to see our Bristol Oncologist in 2 weeks today, so I will do the next update Thursday 3rd December-ish!!!!
Check out the new photos
Love Kelly
XXXXXXXXXX
Wednesday, November 17, 2004
All stand by!!!!
There will be an update tommorrow!!!!
Sunday, October 31st, 2004
Wow it's been ages since my last update!!! Sorry guys, as they say time flys when you're having fun!!!!!
We're all well and having a great time!!!
On Wednesday 13th Debbee and Tony, our friends that we met in Grimsby, who moved to Holland, came to visit. They have now moved back to Grimsby.
I hadn't seen Debbee since the week before Jamie was diagnosed, we couldn't seem to match gaps in our calendars!
It was great to see them, and I am looking forward to seeing them when they come to stay for New Year.
Jamie started his next round of Retinoic Acid/Accutane on Thursday 14th Oct... I have found loads of info about the drug, which I will try to post on the main site this week. We've been giving him Vitamin E to combat the dry sore skin on his face, which has helped. One of the other side effects is Jamie's mood changes, and he is very emotional and tearful when on the drug!
on the Friday 15th, Jamie managed to hurt his ankle, falling, or jumping off the bottom stair. It has been hurting him on and off since. We asked that he not do sports at school, so they took him out for a long walk instead and he came out limping, and I had to carry him home from school on Monday 18th October. We have since spoke to the doctor, who thinks he may have cracked a bone, which they can't do anything for, so we will just have to watch it.
We had a quiet week from 18th to 22nd October.Then on Saturday the madness started when we picked up a Golden Labrador Puppy from a kind family near taunton, who donated it for Jamie.
The puppy is 9 weeks old, born 28/08/2004, Male, and we've called him "Frodo". He is very good with his toilet training, but has a habit of chewing things!! He likes wires, and so far has chewed through my Mouse Cable on his first night, then on Friday chewed the phone cable in the hallway, causing NO BROADBAND/INTERNET CONNECTION!!!! We didn't know the cause of the lack of internet at the time, and have spent all weekend, lost, scared, moody, and pining for internet, plus swearing and cursing BT and Eclipse Internet, to whom we apologise to!!!
On Tuesday The Woodleys (Matty and Emma) came over, and we decended on The Bidulphs (Nicole)in Torquay, for a visit with them. Matty and Emma loved the new puppy. Dave gave Matty his Warhammer stuff, and I gave Emma some Avon/girlie goodies.
They stayed over on Tuesday night, and visited Dave in Plymouth on their way home.
Matty and Nicole have sites, listed at the bottom of this page (or will be main page once I add new Journal)
On Thursday The Banks (Jack & Joseph) dropped in, on their way home from a weeks holiday in Goodrington. They all looked well, and loved the puppy. Jamie loves Jack to bits, and they played really well together. It's a shame we don't live closer, Jamie and Jack seem great friends.
Jamie had clinic on Thursday, and saw his favourite doctor, Andrew, how was very interested in finding out more about the Retinoic Acid/Accutane, and side effects.
Jamie's weight is still good, 15.4kg, and everything is fine. Dr Andrew is keen for Jamie to reduce the sugary drinks, because of his blood sugar levels, and the risk of causing himself a fast drop, associated with a fast rise after drinking sugary drinks. We will try!!!!
On Friday evening I met Charlotte and some of her friends in Torquay. We went for a meal at Jingles Mexican, then did a couple of pubs before going to The Venue!! I managed not to get too drunk this time! I didn't puke, or get in the bath with my clothes on! It was a great night!
Jamie went to Yeovil Illuminated Carnival with his Nana and Grandad Freeman, and stayed the night at Auntie Sarah, and Uncle Mark's house. He arrived home tired today.
We are off to Bridgewater Carnival this Friday!! I will be helping to collect money for CLIC... watch out for me in my Pink CLIC T-Shirt!!!
I have recently updated the Photo gallery and Warrior's pages on the main site, www.beebo.info, and plan to do more this week. I intend to add a Christmas list, incase anyone wants ideas for Jamie and Charlie.
The next update is due in 2 weeks - Sunday 14th November, I think!! But please don't hold your breath, you know how slack I am... after all I am Blonde!!!!
Love Kelly
XXXXXXXXXX
Thursday October 7th
Life is great!!!!! We had the best ever news today... well, we suspected that his MIBG scan results were good, but we saw Jamie's Bristol Oncologist, a Neuroblastoma Specialist, and she said that his MIBG scan was ALL CLEAR!!
This doesn't mean that we are out of the woods, there is an 80 percent chance that Jamie will relapse, within the next 4 years. And remember, he still has 20 percent chance of surviving 5 years with Neuroblastoma.
But Hey!! He's done the first year! Just 4 more to go!!!!
Since Jamie had his feeding tube removed, he's had to feed himself, without relying on his night feed. His energy levels have dropped, they were especially low last week, and the begininng of this week, but they are going up, thank fully.
His weight has dropped from 15.6KG to 14.6KG, which is worrying, but we knew he'd loose weight, like he did when his night feeds were halfed, so it's no surprise, just scary when it actually happens! He is looking skinny too, but is otherwise healthy and happy.
He is enjoying the luxury of being able to get out of bed at night, without having to be unhooked from his feed pump first, which brings him independence, and the chance to sneak into our bed. Jamie has truly mastered the art of "Creeping Jesus" and manages to stealth through the house, and get into our bed without detection!!! I wake up in the morning, wrapped around Jamie, wondering how long he's been there, whereas Charlie is NOT at all subtle, and definately makes his arrival in our bed known by all!!!!!
Jamie had lots of fun at Harry's Birthday Party, which was at Rainbow Fun House, Jamie's favourite place. It was the first time we'd been since Jamie's diagnosis.
Yesterday Nannay Rendall and Norman from Grimsby visited, with Auntie Jo and Cousin Josh. Followed by Auntie Kim and Cousin Harry, then Nana Pat and Grandad Jeff!!!!!!! Full House!!! And Oh, Coralee came for the day too!!!
It is so great to be in our New House, which is 4 bedrooms and detatched, so it really doesn't matter if we have loads of people over anymore, the house is big enough to handle it, and it isn't hectic anymore, like it was in our old house in Newton Abbot, which was a small 3 bedroomed, pokey terraced cottage!!!!
We are planning to get a Puppy!!! I have always wanted a dog, since a child, and never been able to get one, as both my parents work full time, and we didn't like the idea of leaving the dog at home all day, it just wouldn't have been fair.
So now I'm all grown up, and at home all day, with the kids, I've decided to get one. We have discussed it lots in the past, and decided to wait until Jamie had been home and well, and not relapsed before Christmas.
Debbee and Tony, from Holland/Grimsby are coming next week now. Debs has interviews, for a job in Grimsby, as they have now moved home from Holland, where they have been for over 2 years.
CLICs Win a Day off Work is happening again this year, so be sure to go to www.winadayoffwork.com for info, and to get your boss to register!!!!
I will update again next Thursday, as we are at Clinic again to get Jamie's next course of Retinoic Acid, and do bloods and a weight check.
Love Kelly
XXXXXXXXXX
Friday, October 1
Well, we returned from Scotland today. We travelled up and back from Exeter Airport. On the flight up, Charlie fell asleep just before we took off, and woke up just after landing. On the return flight Charlie tried his hardest not to go to sleep, and we read "Peek-a-Boo" book over 20 times!!!!!!
We stayed at Malcom Sargent House, in Prestwick, Ayrshire, in Scotland.
the house is 2, converted into one, between Prestwick Golf Club, and the Sea. From our bedroom window we could see the Sea, which was about 500 metres away!
Across from the golf course we had a good view of Prestwick Airport, and the boys loved watching the airplanes landing and taking off!
The weather was mostly crap... lots of rain and wind!! We caught the edge of a passing hurricane at the start of the week.
We mostly relaxed in the house, their was a massive playroom, with a soft play area, and a Playstation area, which Jamie took up camp in. Charlie and Jamie were the youngest ones there, and some of the boys were slightly annoyed when Jamie thrashed them at the Playstation games!!
We caught the train into Glasgow on one day, and went to the Gallery of Modern Art, Jamie slept through this!!! Then wandered around the shops. jamie woke up in time for Burger King!!!!
At the top of the house, they'd converted the loft for the older children, and there was snooker, table tennis, internet, more Playstations, Stereo, table football, and a music room, with guitars, keyboards, drumkit, and a mixing desk, plus loads of percussion instruments!!
Dave spent the first half of the week playing Playstation with some of the older boys, then discovered the joys of table tennis for the second half of the week"!!!!
Charlie was hassled loads by a group of adoring female fans, who were constantly in his face. Whenever
he saw them he shouted "NO!" This became his word of the week.
We've also taught Charlie, when we say,"what do you say Charlie?" and now he says, "Thank-you!", which is more like, "Tank....ooo!" so cute!!!
And also, when you sing, "Who let the dogs out?" Charlie says, "Oo oo oo!" and he even sings it himself, in his own language!!!!
Jamie ate ish all week.. it was hard for him to get used to their set mealtimes, as he normally eats when he feels, and we eat lunch and dinner later than they did.
He made a special friend, called Troy, a brother of a little girl who has Rhabdosarcoma.
We met some great families, and have taken contact details to keep in touch. We're booked in for next year, and hope to meet the families there again.
Tommorrow is Harry's 5th Birthday party at Rainbow Fun House, where Jamie is going as Batman, and we will try and get Charlie into Jamie's old Spiderman costume!!!
Then Jamie is off to his Nana Teresa and Grandad Paul, maybe for the night.
Next week Debbee and Tony are coming!!!!! They've moved back from Holland, and are coming to stay with us for a while. We haven't seen them since just before Jamie was diagnosed, so it should be a tearful reunion.
On Thursday Jamie has clinic at Exeter, his Oncologist from Bristol, Dr Foot will be there, so I will update next on Thursday 7th October
Love Kelly
XXXXXXXXXX
Thursday, September 23
Great News!!!!!
Last Thursday at clinic, in Exeter, Jamie's weight showed 15.6kg. This means that the 6kg he lost in a month, he regained in just 2 weeks!!!!
His tummy tube was still infected, so more swabs were taken, and he was put on another 2 week course of antibiotics.
On Monday evening, last thing, we travelled up to Bristol and stayed at CLIC House.
On Tuesday Jamie went for an isotope injection, for an MIBG scan the next day (Wednesday)
While we were on Oncology Day Beds, we saw Jamie's surgeon, and were talking about the possibility of removing Jamie's tummy tube (Jejunostomy)
It was thought that we may have to stay an extra night, to get Jamie into surgery on Thursday.
The surgeon just pulled Jamie's tummy tube out there and then, right in the waiting area of Day Beds!!!!!
I was so shocked I didn't know whether to vomit or faint!!
Jamie was really chuffed!! The surgeon told us to put a dressing over the hole, as his drink might leak out for a few hours!!!!
The MIBG was on Wednesday. Jamie lay still for the whole hour!! What a star!!
Unofficially the scan operator, compaired the scan to a previous one, and said that it showed signs of improvement! Which is great news!!!!
So we're back home again, and Jamie is tube free!!!! He's a real boy!!!!! And so back to normal, it's great!!
We are so happy that it has gone so well, and looks like last year is becoming a distant memory!
On Tuesday I felt so happy I could have cried!
On Saturday we're off to Scotland, to stay at Malcom Sargent House, for a week's holiday, so I will update on Friday or Saturday, next week, to tell you how much fun we had!!!!
Here is a link to info about Malcom Sargent House:
http://www.sargent.org/wherewedoit/micro_msh.htm
And the Sargent site: http://www.sargent.org/
Love Kelly
XXXXXXXXXX
Friday, September 10th
Sorry for missing an update last week, I just kept forgetting!!!
Jamie is fine, so don't worry!!!! I will probably be updating fortnightly now, as there isn't much going on.
Since the last update.....
Saturday 28th August we were invited to Mrs H's house, in Kingswear, for Dartmouth Regatta. We arrived at midday, and went over to Dartmouth on the car ferry, and took the kids to the fair. I will try to get some photos up on the min site tomorrow night!!!
Jamie went on the dodgems, bouncy castle, and I went on the Topspin ride, with Billie and Bethany, it was great!
We got back from Dartmouth in time to see the Red Arrows display, followed by a BBQ and then the fireworks, before a swim in Mrs H's pool!!!!
On Sunday Jamie went up to the CLIC Fun Day with his Nana Pat, in Taunton. He had a great time, running around all day.
I had some bad news the next week; my friend Emma, from Brixham's baby Ellie passed away on BMT. Ellie had been fighting Ostepetrosis, and was barely a year old!
On Wednesday 1st September we had a family day at Paignton Zoo. Jamie and Charlie had a ride on the train, and we found some Peacock feathers to bring home. The boys managed to walk around most of the Zoo, even though we had their buggies, and they were truly worn out by the time we'd finished!
Jamie went for his first day back at school on Thursday. He has now started mornings, 9 - 12, on Monday, Wednesday and Friday. He went on a Thursday, as it was the first day back, and he was due to Hospital on the Friday.
After school Jamie had Clinic, at Exeter, for his fortnightly check. His weight has now dropped to 15kg, but they are not worried about it yet, as it isn't dropping too fast.
Jamie was proud to show Dr Andrew that he hasn't been biting his fingernails!! On the day before I was astounded to notice that Jamie's nails had grown, and for the first time, since he was a baby, I had to cut them!!!!
On Friday 3rd September we went up to Bristol Children's Hospital for the 3 monthly Pulmonary Hypertension Clinic, where the specialist from Great Ormond Street comes down. Jamie checked out fine. He still has Pulmonary Hypertension, but it is not at a level that needs treatment.
On Saturday 4th, Jamie went to his Cousin Josh's 4th Birthday Party in Plymouth, and came back exhausted, with a party bag, after having a great time, in the wacky warehouse type place.
On Sunday Nana Teresa and Grandad Paul took the boys to Miniature Pony Centre, Jamie took our digital camera, and took lots of photos, of pony parts, and grass!!!! He had a pony ride, and saw lots of goats.
Dave and I went to Widemouth Bay, surfing. I had a go, with my belly board, but the sea was very rough, and the seabed very rocky, with lots of deep pit holes. I hurt my knee!! It was exhausting work, trying to get out in the rough waves, so I didn't surf for long! I got a good tan though!
We all went swimming in the Lido, on Monday afternoon, after Jamie finished school. Jamie swam with a rubber ring, and Charlie refused to go in his baby ring, and much rather splash around without, he's mad in the water, he has no fear!!
On Tuesday this week Dave and I went to Baby Ellie's funeral, at Torquay Crematorium. It was a difficult time. Dr Steward, from BMT attended the funeral, and was pleased to hear Jamie is doing so well. I showed him a recent photo of Jamie with hair.
Jamie's tummy is still inflamed slightly; he started 2 extra weeks of Antibiotics, just to help clear it up. He's eating well, and is full of energy.
He and Charlie get on really well, it's great to see them playing together, they adore each other, and Jamie likes to boss Charlie around, and Charlie follows Jamie like a lost puppy!
In the morning Charlie is normally up first, and we have to shut Jamie's bedroom door to stop Charlie from going in and pulling at his feed pump and tube! Charlie likes to climb up on Jamie's bed!
Someone normally takes Charlie downstairs, where he will happily play for over an hour sometimes. Then when Jamie wakes up, and starts coming downstairs, Charlie gets most excited, and hugs Jamie with joy when he reaches the bottom of the stairs!
They don't get on well all the time; Charlie has a nasty habit of whacking Jamie with a toy car, sword, anything to hand! And Charlie is also a windup merchant; he has great skills in winding up Jamie, who normally ends up frustrated in tears.
When Jamie doesn't want to play with Charlie we encourage him to shut himself in the lounge, for a bit of privacy.
This evening we went up to Taunton, and had dinner at a pub, with Nana Pat and Grandad Jeff. We went to a Brewster’s Pub, where there was a soft play area, which Jamie loved. He made a little friend, but couldn't pronounce his name, so called him "Little Boy!"
I got some more bad news this evening when I got home; Corey, who we met at Bristol, on one of our last visits, passed away on Wednesday. It was a great shock, as Corey was post transplant and doing well, like Jamie. Corey also had Neuroblastoma, and was 18 months old. It's made me worry about Jamie now. I hope our bubble doesn't burst.
On Sunday it's Bristol's half marathon. CLIC has been chosen as one of the 'Official Charities'.
I'm going up, with Jamie to help out, and give support to the runners, some are parents of other cancer kids, and some are nursing and medical staff.
It's Dave's Birthday next Thursday, so I will update next on Thursday 23rd September, just before our Sergeant Holiday in Scotland
Love Kelly
XXXXXXXXXX
P.S - I've added some photos on this news page, follow the link "View Photos" at the top of this page
Friday, September 10th
Sorry for missing an update last week, I just kept forgetting!!!
Jamie is fine, so don't worry!!!! I will probably be updating fortnightly now, as there isn't much going on.
Since the last update.....
Saturday 28th August we were invited to Mrs H's house, in Kingswear, for Dartmouth Regatta. We arrived at midday, and went over to Dartmouth on the car ferry, and took the kids to the fair. I will try to get some photos up on the min site tomorrow night!!!
Jamie went on the dodgems, bouncy castle, and I went on the Topspin ride, with Billie and Bethany, it was great!
We got back from Dartmouth in time to see the Red Arrows display, followed by a BBQ and then the fireworks, before a swim in Mrs H's pool!!!!
On Sunday Jamie went up to the CLIC Fun Day with his Nana Pat, in Taunton. He had a great time, running around all day.
I had some bad news the next week; my friend Emma, from Brixham's baby Ellie passed away on BMT. Ellie had been fighting Ostepetrosis, and was barely a year old!
On Wednesday 1st September we had a family day at Paignton Zoo. Jamie and Charlie had a ride on the train, and we found some Peacock feathers to bring home. The boys managed to walk around most of the Zoo, even though we had their buggies, and they were truly worn out by the time we'd finished!
Jamie went for his first day back at school on Thursday. He has now started mornings, 9 - 12, on Monday, Wednesday and Friday. He went on a Thursday, as it was the first day back, and he was due to Hospital on the Friday.
After school Jamie had Clinic, at Exeter, for his fortnightly check. His weight has now dropped to 15kg, but they are not worried about it yet, as it isn't dropping too fast.
Jamie was proud to show Dr Andrew that he hasn't been biting his fingernails!! On the day before I was astounded to notice that Jamie's nails had grown, and for the first time, since he was a baby, I had to cut them!!!!
On Friday 3rd September we went up to Bristol Children's Hospital for the 3 monthly Pulmonary Hypertension Clinic, where the specialist from Great Ormond Street comes down. Jamie checked out fine. He still has Pulmonary Hypertension, but it is not at a level that needs treatment.
On Saturday 4th, Jamie went to his Cousin Josh's 4th Birthday Party in Plymouth, and came back exhausted, with a party bag, after having a great time, in the wacky warehouse type place.
On Sunday Nana Teresa and Grandad Paul took the boys to Miniature Pony Centre, Jamie took our digital camera, and took lots of photos, of pony parts, and grass!!!! He had a pony ride, and saw lots of goats.
Dave and I went to Widemouth Bay, surfing. I had a go, with my belly board, but the sea was very rough, and the seabed very rocky, with lots of deep pit holes. I hurt my knee!! It was exhausting work, trying to get out in the rough waves, so I didn't surf for long! I got a good tan though!
We all went swimming in the Lido, on Monday afternoon, after Jamie finished school. Jamie swam with a rubber ring, and Charlie refused to go in his baby ring, and much rather splash around without, he's mad in the water, he has no fear!!
On Tuesday this week Dave and I went to Baby Ellie's funeral, at Torquay Crematorium. It was a difficult time. Dr Steward, from BMT attended the funeral, and was pleased to hear Jamie is doing so well. I showed him a recent photo of Jamie with hair.
Jamie's tummy is still inflamed slightly; he started 2 extra weeks of Antibiotics, just to help clear it up. He's eating well, and is full of energy.
He and Charlie get on really well, it's great to see them playing together, they adore each other, and Jamie likes to boss Charlie around, and Charlie follows Jamie like a lost puppy!
In the morning Charlie is normally up first, and we have to shut Jamie's bedroom door to stop Charlie from going in and pulling at his feed pump and tube! Charlie likes to climb up on Jamie's bed!
Someone normally takes Charlie downstairs, where he will happily play for over an hour sometimes. Then when Jamie wakes up, and starts coming downstairs, Charlie gets most excited, and hugs Jamie with joy when he reaches the bottom of the stairs!
They don't get on well all the time; Charlie has a nasty habit of whacking Jamie with a toy car, sword, anything to hand! And Charlie is also a windup merchant; he has great skills in winding up Jamie, who normally ends up frustrated in tears.
When Jamie doesn't want to play with Charlie we encourage him to shut himself in the lounge, for a bit of privacy.
This evening we went up to Taunton, and had dinner at a pub, with Nana Pat and Grandad Jeff. We went to a Brewster’s Pub, where there was a soft play area, which Jamie loved. He made a little friend, but couldn't pronounce his name, so called him "Little Boy!"
I got some more bad news this evening when I got home; Corey, who we met at Bristol, on one of our last visits, passed away on Wednesday. It was a great shock, as Corey was post transplant and doing well, like Jamie. Corey also had Neuroblastoma, and was 18 months old. It's made me worry about Jamie now. I hope our bubble doesn't burst.
On Sunday it's Bristol's half marathon. CLIC has been chosen as one of the 'Official Charities'.
I'm going up, with Jamie to help out, and give support to the runners, some are parents of other cancer kids, and some are nursing and medical staff.
It's Dave's Birthday next Thursday, so I will update next on Thursday 23rd September, just before our Sergeant Holiday in Scotland
Love Kelly
XXXXXXXXXX
Thursday, August 26
Managed an update on time this week!!!!
We haven't done much this week, I've been catching up on boring household stuff, like laundry and sorting out. I still have a few boxes that I haven't unpacked, and a suitcase to unpack from our last visit to Bristol!
Happy birthday to Granny Jean!!! Sorry I couldn't make it on Monday, I hope you understand! XXXXXXX
Happy birthday to Auntie Kathy for Tuesday!!! We hope you liked your Cliff Richard singing card!!
On Wednesday Jamie was due to go and see the Red Arrows, in Torquay with Nana Teresa. I was getting him dressed up smart and ready and he asked me to check his tummy tube, a it felt sore. He sometimes gets crusty bits round the hols, and they dig in to his skin with the dressing that holds it all in place.
When I took the dressings off I saw it was swollen and sore. It had been changed and cleaned the prevous day, and had flared up since then. We phoned the hospital, who asked us to bring him in.
Nana Teresa came with us, and the Dr confirmed it was an infection, took some swabs and sent us off with antibiotics. Sadly the pharmacy took ages to get his prescription ready and we missed seeing the Red Arrows. Jamie was very disapointed, despite us reminding him he would be seeing them on Saturday at the Regatta, in Dartmouth.
As we neared home, at the top of Teignmouth we could see the display of Red Arrows over the hill, they were doing a giant heart in the sky!! This cheered Jamie up loads!!!
Jamie seems well, so he must be fighting the infection himself.
We had a visit from cousin Harry today, the boys played nicely, then we took them down town shopping, and then let them have a go on the bouncy castle, as they had loads of energy!!!
We might get out to the aquarium soon, if we don't have any more disruptions in the next week!!!!
As I've said, we're off to Dartmouth Regatta this weekend, and Jamie's off to a family fun day in Taunton with his Dad on Sunday.
On Monday Nana Teresa is taking Jamie and Charlie out somewhere for the day.
See you next week
XXXXXXXXXXXXXXXXXXX
Monday, August 23
Sorry!!! I know the update was late again!!! it's been hectic, and I just kept forgetting, sorry!!!
You know when you sit down infront of your PC, sometimes all those jobs go straight out of your head, as you surf the night away!!!!!
All is absolutely great!
We had a lovelly time with Paula, Rob, Jack and Joseph, in Bristol. We met them at a family fun day, held at their local Rugby club, it was a nice sunny day, and we spent most of our time chasing Charlie, as he has escapism issues, and loves to run off into wide open spaces!!
It rained on Sunday when we were meant to go to the Balloon Fiesta, so I dragged Paula around Ikea instead! On Monday we went to a place called "Hop Skip and Jump", which is a playcentre for "Special Children" with a host of ailments and problems. It's perfect for oncology kids, because they can play safe away from normal kids germs!!!
Jamie and Charlie loved it, and we met another Neuroblastoma Warrior from Bristol, called Corey, who is about 18 months, and doing very well.
Jamie got his first major injury ever! He was on a space hopper, and crashed into the corner of a brick pillar, in Jack's garden. Dave rushed to help him, and all my first aid training went straight out of the window, along with my colour, which drained from my face, so I had to sit with my head between my knees to stop from fainting, I felt pathetic!!!
Jamie is ok though, he has a scrath down his chin, which looks like a goatee beard, and has pushed 2 teeth inside the gum slightly. He had a fat lip the next day, and looked like we'd beaten him. We'd never beat him so obviously on his face!!!!!
Thursday Coralee came over for TLC and cheering up, so I took her to Torquay for retail therapy, then met Dave in Dawlish, who had taken Jamie to clinic, with cousin Harry. Dave took Charlie home while Coralee and I took Jamie and Harry to se the airshow at Dawlish. We'd missed the Red Arrows, as it had clashed with Jamie's clinic appointment, but the boys didn't seem to mind, as we stood right on the beach, and saw 3 air displays right over our heads. this was after 2 trains came past really close on the sea wall. You can imagine the joy this brings to 2 4 year old boys... WoW!!!!!
Jamie and Harry were so excited by the airshow ahead that they ran into the sea fully clothed!! Hell, you only live once!
Jamie's clinic went fine, everything is good, so nothing to report there. He has an appointment through for the Pulminary Hypertension clinic, at Bristol, where the specialist from Great Ormond Street will be here again to make sure he is still good. That will be Sept 3rd, so I am saving up to go Ikea shopping while we are there!!!
Jamie spent the day with his Nana Teresa and Grandad Paul on Saturday. They took him to his favourite resturant, Pizza Hut.
On Sunday we were host to a "Family Day" to get a chance to see Linzi and Sean, Dave's step sister and her husband, who are teaching in the Lebanon, and off for the hols. They are due to go back soon, and have loads of people to catch up on. The whole family was there, Kim, Gav, Harry, Jo, George, Josh, Glen, Kathy, Archie, Nana and Grandad, plus a few NON family members. The boys, Jamie, Josh and Harry had a great time, despite the fights, bickering and arguing, they love each other dearly!!!!!
This weekend we are off to Dartmouth Regatta!!! We will see the Red Arrows from close up, as we will be on the bank of Kingswear side!!!! Can't wait!
We are hoping to go out doing tourist things this week, just the 4 of us, to the aquarium and maybe the zoo.
I have Tons of photos, and will be adding them to the main site too, plus a link to my Cancer and Neuroblastoma Merchandise Shop, where you can buy Neuroblastoma Warrior T-Shirts, and stuff
Love Kelly
XXXXXXXXXX
Friday, August 13, 2004
Hello again, wow, a week seems to zoom by!!!!
Jamie is still great! he is on 1/2 night feeds now, and coping well, and still eating like a horse by day! We haven't checked his weight yet, but we will do before he has clinic next week.
Today we had a visit from David, his mum Mel, and brother George and 2 sisters, Abi and Steph. They were on their way to the Speedway, which David loves.
David looks really well despite relapsing, and is still walking with crutches. He was happy and carefree.
We gave mel the video camera, that we bought with all your chippings in, thanks guys, we raised over £350!!! there was some left over, so when it is all collected we will get something extra.
We wrote a card out with the names of you guys who chipped in, with the message "Memories are precious". Mel was moved, almost to tears, and is very grateful, she said to thank everyone involved.
That gave us the idea that we could really do with a video camera for Jamie, as the one we used to borrow is broken, so Nana Pat is doing some fundraising for him.
Our new fridge came from Family Fund today, so that was even more excitement!!!
Yesterday Jamie and Harry went to Scott May's Dare Devil Stuntshow ground, out of hours, and had a sit in a Monster Truck!!! They loved it! It was pouring with rain, but they didn't mind. We didn't get any photos, sorry!
On Tuesday was our Wedding Anniversary, 2 years!!!! We had a romantic walk on Teignmouth beach, and fish and chips on the sea front! Jamie was funny.... he was about to go down the steps to the beach, when a bigger girl ran past and nearly knocked him down the steps. He shouted "Idiot!" at her!!!!! Go Jamie!!!!
I must apologise to all my Avon customers, who are wondering where their orders are, or latest catalogues; I haven't had a chance to get out to do them, and am a bit behind, but will get to you next week, promise!
Tommorrow we are off to visit Jack, and family, in Bristol for the weekend. Then on Monday we will be visiting the hospital to say "Hi" and hopefully CLIC house.
I have revamped the Warriors section on the main site, so be sure to check it out
Next update should be next Thursday evening
Love Kelly
XXXXXXXXXX
Saturday, August 7, 2004
Sorry I didn't update on Thursday, we got some bad news. A friend of ours that we met in hospital has relapsed and there isn't anything the doctors can do this time. I've been at a loss for words, sorry.
Jamie is fine. Still eating well, and becoming more his normal self than ever.
On Thursday we met our Specialist fom Bristol, Dr Foot, who came to see Jamie at Exeter Hospital. She is amazed by how well Jamie is, and how good he has coped.
The plan is to half his night feed dose, and rate, and see what his weight does. His potassium has stopped completely now, for the time being. So the only medication he has is Allupirinol, which prevents Gout.
Jamie is on a 2 week break from his Retinoic Acid, then will take it for another 2 weeks. The side effects have begun to show; the skin on his face is dry and peeling, also on his arms, legs, scalp and groin area. I bought some Vitamin E moisturiser from the local health food shop, and it's brilliant. Yesterday I bought some Vitamin E face wipes, plus a lip balm for him, from the Body Shop, as they do a Vitamin E range.
On Thursday morning Jamie was complaining that his legs hurt, and they seemed to be seized up. He was able to walk slowly, on and off all day. By evening he was crying, so we had to give him Calpol. Today they seem normal. It was either a side effect from the Retinoic Acid, or he'd over exherted himself the day before!
Wednesday was Jamie's diagnosis Anniversary. We didn't do anything to celebrate (You know what I mean!) We just had a peaceful day at home.
On Monday we went down to the beach for the afternoon, with Kim, Gavin and cousin Harry. The sea was rough, perfect for surfing, so the boys had a go with their Boogie boards, so did Kim and I. It was my first time surfing, and I caught my first wave, then caught my first wave dump!! I had water streaming out of my nose for ages after!!!!!
On Sunday we went to Bude. Dave went surfing, and I swam in the sea, and in the pool, carved out of the rocks. It was a good day. The tide came in very quickly, and we kept having to move our stuff up the beach fast, every 10 minutes or so! We didn't have the sense to move it further each time, the tide seemed to be speeding up as it came in!!! Many people got their stuff caught by the tide, while they were in the sea, unaware! By the end of the day, we were cut off from our car by the tide! We had crossed over a canal lock, then over the river mouth by a metal bridge, onto the beach. The tide was covering the metal bridge and we had to walk another way, over the sand dunes, and through the town to get over the river to our car!
On Saturday Jamie went to his Nana and Grandad Chudleigh for the day.
On Friday Nana and Grandad Taunton came to see Teignmouth carnival, so we met up with Kim, Gav, cousin Harry, Auntie Kathy, Uncle Glen and cousin Archie on the Den, and Jamie and Harry went on the bouncy castle slide, dodgems, and I took Jamie on some other fair rides.
The kids weren't really interested in the carnival, but they had a good time. We got fish and chips on the way home.
Jamie isn't due to clinic until the following Thursday now, as he is doing so well. He didn't have his blood checked this week, because it was fine last week, so it will be checked in 2 weeks time.
He is due for an MIBG scan in the next couple of months, to check his status.
I have revamped the information section on Jamie's main site, and it will be complete tonight!! So check the site tommorrow!!!!
For anyone concerned, who may have got their wires crossed... No I am NOT sueing Exeter Hospital, CLIC nurses, or any other hospital for that matter! The feature about Bristol Hospital in the Herald the other week was printed without my knowledge, based on comments I had made to a previous article about hospital cleanliness and MRSA!
I would appreciate people didn't "Chew the fat" about it, thank you
XXXXXXXXXX
Thursday, July 29, 2004
Great News!!!!!!
Jamie's test results finally came back, and they were all clear!! This means NO RELAPSE!!!!
The doctor is sooo pleased with his progress, she said it's not borderline, Jamie is WELL!! He has put on another 0.2kg, and will have feeds reduced next week.
Jamie is still swallowing his Retinoic Acid (Vitamin A/ RoAccutane) capsules, and has started peeling, on face and lower areas, which needs Vitamin E moisturisers. This medication is originally for acne!
Today is the 1st anniversary that we were first told that Jamie has Cancer. This was at Torbay Hospital, and the next day we went to Bristol.
This evening we all went to see the Dare Devil Stunt Show, at Dawlish, with Lee, Kim, Gav and Harry. We saw car and bike stunts, involving jumps and fire, with loud bangs, and 2 monster trucks!!!! it rained a bit, but luckily we had brollys, which Harry and Jamie enjoyed sword fighting with!!!!!
Yesterday we went down to the seafront with Kim and Harry and the boys rode their bikes, before we had icecream. The boys got soo messy we just had to wash off in the sea. Jamie stripped down to his red pants, and looked like a Baywatch Hunk!!! They all enjoyed splashing in the sea!
On Tuesday our friends that we met on the Childrens ward, Paula and Rob, brought Jack and Joseph down for the day. We went to lunch at Coombe Cellars, which has an outdoor eating area with a playpark, it was a great day.
We topped it off by walking along the seafront, and an icecream, before visiting the park, for boat and bike rides.
On Sunday the boys spent most of the day in Chudleigh, with my parents,(Nana and Grandad Chudleigh) before coming back for an evening BBQ with Nana and Grandad Taunton.
Nana Taunton bought Jamie a giant aeroplane, which the boys managed to break within 1/2 an hour of playing with. The wings made great swords though!!
On Saturday we took a very long, 3 hour drive, to Cornwall. Thanks to Dave's crap directions!!! And spent the day on the beach at Porthtowan, where there was an Animal surf competition.
I'd bought Jamie a boogie board and wetsuit the day before, so Dave took him for a surf, which he loved! He picked it up quickly, and only went under once, which he didn't seem to mind!
After a lovelly day, and a cuppa at the Woodleys, we took just 1 1/2 hours to drive home, the proper route!
Tommorrow is Teignmouth Carnival, and the Fair is in town!! Nana and Grandad Taunton are coming to stay the night.
Jamie and Charlie are both at Chudleigh for Saturday, and probably Sunday too, so I might go for a swim in the sea!
I am in the middle of editing all my latest photos, and will be updating the photo gallery on Saturday evening. So make sure you check the main site on Sunday.
See you next week, same time same place
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Thursday, July 22
All is well, Jamie's cold and cough has gone!
We had clinic again today, still no results from the urine sample 2/3 weeks ago!!!
Jamie is getting used to the blood tests, and trusts the magic cream now (By the way, you can buy it in Boots, it's called Ametop) And doesn't feel a thing! today he laughed as he watched the doctor stick the needle in!
He has put on 0.2kg this week, last week he was 15.4kg, so this week he is 15.6kg! The doctor is talking about starting to wean him off the night feeds.
Today Jamie started his Retinoic Acid (Also called Accutane) course, which will be 2 weeks on, 2 weeks off, taking it twice a day. This lasts 6 months, and comes in capsule form, with liquid inside. We were preparing to open the capsules and mix it with icecream, but Jamie managed to swallow them first try, and was so proud of himself, he had to phone the doctor to tell her!
His Potassium has now been reduced to 7.5ml per day, and he finishes his Aciclovir and Septrim, as he will hit 6 months post transplant!
Last Friday our feature was in the local paper, you can see it by copy and pasting this link
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=141529&command=displayContent&sourceNode=141513&contentPK=10599407
We went to Air Fusion Friday evening, and Jamie enjoyed a ride on the amusements, and a go on the bouncy castle slide, then we danced in the tent!!!
On Saturday we went to Chudleigh Carnival, which was crap! It lasted less than 15 minutes!!! Jamie got scared by some giant walking trees!!!
Coralee and I took Jamie and Charlie back to Air Fusion afterwards for a while, Jamie went on the rides again, and watched me win a toy on the rifle shooting game, where I was a perfect shot!
Monday, was our CLIC day, where we do CLIC stuff. We had alot to do this Monday, there was a great response from the public after our newspaper feature. We were in Torquay and Brixham, delivering Funrasing packs, and collection tins. When we'd finished we went to see the Golden Hind, in Brixham, with Harry and Kim. The Golden Hind is a replica of Francis Drake's boat. Jamie and Harry loved it!
I was in the paper again on Monday, much to my shock! Here's the link!
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=141529&command=displayContent&sourceNode=141513&contentPK=10613833
Coralee came over on Tuesday, and we went to Torquay, where I had my belly button peirced! I put magic cream on before hand, and didn't feel a thing! It is a bit sore now, I keep catching it, and Charlie keeps knocking it!
Next week I might get my eyebrow peirced!
On Wednesday Harry was here for most of the day, while his mum, Kim, had a hospital appointment. The boys played quite well, but by the end of the day they were both tired and tearful!
We plan to go down to Matty's birthday party, in Cornwall this weekend. It's the first time I've ever driven in Cornwall! I hope we don't get lost!
Next Tuesday Jamie's friend Jack and family are coming down for the day.
It's Teignmouth Carnival next Friday, but we don't plan to go, as the kids weren't at all interested in the Chudleigh one, and it will be much the same. We do plan to take them down to the fair, which will be here soon!!!!
Expect an update same time next week
Love Kelly
XXXXXXXXXX
Wednesday, July 14, 2004
Jamie's cold is in full swing, with lots of snot and coughing!! Yuk! When he sneezes it's gross!!!!
Sadly, jack and family couldn't visit, due to our germs! But they will be visiting later this month instead.
Jamie had a good week at school, on Tuesday, Wednesday and Thursday afternoon, from 1 till 3.30.
On Tuesday we had an ear nose and throat appointment at Exeter, which was brutal! They shoved a camera up his nose, into his throat, without any aneastetic! It took me, and 2 nurses to hold him down, screaming for help, bless, it was awful. Afterwards someone told me that they had anaestetic spray before theirs, and they are an adult!
Sports Day was cancelled due to rain, but we went to the school BBQ on Friday evening, where Jamie went on a bouncy castle!!!! He loved it! Charlie was too chicken to go on, so stood at the side, jumping on the shoe mat!
We had to wait for over an hour for Jamie to get his face painted like Spiderman, at the face painting stand, then on the way home Jamie smeared most of it off, wiping snot!
On Saturday we went down to Plymouth, to the Forces weekend at the Hoe. We saw tanks, jeeps, helicopters, harrier jets, a Red Arrow!!! Jamie and Dave climbed up inside the lighthouse, while Charlie and me watched an air display.
After this we went SWIMMING!!!!!!!! At the Pavillions. This was our first ever Family swim session, Dave has never been with us before, and Jamie hasn't been able to go swimming for over a year, since he went to Ibiza before diagnosis. He still had confidence in the water, so did Charlie, and we all had a great time.
On Sunday we all went to a family blessing/naming ceremony for Jamie's baby cousin, Archie. All our boys sat very still in church (Harry, Jamie and Josh) and did us proud! Then we had a little "Do" at the Yacht club, where the boys all played quite nicely with a box of toys that someone was clever enough to think of bringing!
We saw Auntie Linzi, and Uncle Sean, who have been teaching in the Lebanon since last year, and are back for the holidays.
The day was finished off with a lovelly walk along the sea front, with Harry, auntie Kim, Uncle Gav, Auntie Linzi, and Uncle Sean.
On Monday Nana and Grandad Chudleigh came and picked Jamie up and they went on a "Round Robin" trip, which is a steam train from Paignton, ferry to dartmouth, and boat trip. Jamie had a great day, spending quality time with his grandparents, and was asleep when they brought him home!
Tommorrow, Jamie has clinic, so I will update you if there is any news on his tests he had recently
Charlie had his jabs last week, and after had a high temperature, and was very unwell. He couldn't walk because his lags ached where they injected him!
He is better now, and off with Nana and Grandad Chudleigh till teatime.
This weekend is Chudleigh carnival, and then a BBQ and Disco at the Coaching House. My auntie and Uncle, with cousins Jack, Charlotte and Patrick are coming down from Yeovil, which will be nice to see them.
Also this weekend, is "Air Fushion" a live music festival at Courtenay Park, Newton Abbot. Jamie went last year, just before he became ill, and loved the dance and techno tents. He has asked about dancing in a tent in the park ever since. This sort of marks a landmark for us, surviving a year to make the next one. Air Fushion has kindly agreed to donate some of the money raised to CLIC! Thanks Guys!
Jamie and I are going to be in the Herald express during the next week, about Jamie's last year, and me doing CLIC, so watch out for it!
I am off to update Jamie's main site, and add new pages, and hopefully new photos
XXXXXXXXXXXXXXXXXXXXXXXXXXXX
Monday, July 5, 2004
Jamie's had an excellent week!!
On Tuesday he started Nursery, at the school just down the road. To start with, he will go from 1 - 3pm, then after September he will go up to 5 afternoons.
Dave stayed with Jamie for his first day. Jamie enjoyed it, and they did some practise for their school sports day, which is this Thursday!
On Wednesday I stayed with Jamie for 1/2 an hour, before making an excuse to pop home for something, and then waited at home for the dreaded call to say that Jamie was upset and wanted me. it never came, so I walked down and picked him up at the end of Nursery.
On Thursday I only stayed for 1/4 an hour, until Jamie said to leave!!!!
Jamie had clinic on Thursday morning. We got the results of the urine test, which showed high levels of Dopermine. I have no idea what this means! The nurse took more sample for another test, which will tell us more, hopefully this week.
On Thursday afternoon, Jamie returned to the hospital for a Cardiology appointment, with Dr Martin from Bristol. The good news is that Jamie's heart and lung function have returned to normal, and heart muscle has recovered. Jamie is due for another check in 6 months.
On Saturday Grandad Paul came to visit. Then on Sunday we went to a blessing, for my cousin's second son, Lewis.
Jamie has finally come down with that cold!!! The rest of us are on week 2 of it, and Jamie has really bright green snot!!!! On Friday night he had a high temperature, which we kept down with lots af Calpol. he slept through most of Saturday, then woke up much better in himself.
We're hoping he shakes it in a couple of days, as we are due a visit from Jack, and his parents, from Bristol. Jack was in hospital in Bristol with Leukaemia over new year, and he and Jamie really hit it off.
Tomorrow Jamie has an Ear Nose and Throat appointment, at Exeter, don't ask!!!!
Charlie has his jabs on Wednesday, and then on Thursday it's Jamie's sports day at school!
Sunday, June 27, 2004
We are full of cold at the moment. All except Jamie, who doesn't seem affected at all!!
Jamie's weight went up slightly this week, and rests around 15.9KG, which the Oncologist is satisfied with.
Last Thursday the CLIC nurse struggled to access Jamie's central line, to take blood, so she arranged for a CLIC nurse to come to the house on Monday and put Urikinese into his line, in hope to unblock it.
On Monday our CLIC nurse, Helen, couldn't get any Urikinese into Jamie's line. She took a urine sample from Jamie, to test for relapse of Neuroblastoma, as we were concerned about Jamie complaining of leg pains in the morning.
Before Jamie was originally diagnosed last July he suffered leg pains, and would wake up at night crying in pain. Hed never suffered morning pain though, we hoped it was over excercise and stiff muscles this time.
The results are due in a week.
On Tuesday the CLIC nurse returned with special bungs, which have a resevoir in, and managed to get 1ml into each line.
It was clinic day on Thursday, and Jamie's line was still blocked, so Jamie had to have bloods taken via the traditional route, needle!
He didn't have magic cream, just magic spray, and was very good. He did cry, but then stopped after, and admitted it wasn't as mad as he'd expected!!!
The decision was made to have Jamie's line removed the next day.
We had instructions not to let Jamie eat anything after evening meal, no gastro feed, and only clear fluids till 6.30am, in preparation for the general anaestetic at 9am in the morning.
Friday we got up at 6am, to get Jamie to the hospital for 8am. Jamie appeared anxious, and we had to re-assure him that we would go home after the short operation, and it wouldn't hurt etc...
Jamie seemed hot and flustered, but his temperature was fine.
The aneastatists came to the ward to ask routine questions, and said that Jamie was first into theatre at 9am. Then came the surgeons, who asked the same questions!
Then a nurse came and said that Jamie would be second, after a laproscopy... fine!
Jamie had had a late night, and early morning, and seemed tired and whingy. He also seemed clammy, so his temperature was checked... it was fine.
David took Charlie to the playroom, while Jamie and I had a lie down on the bed for a hour. I had a snooze, and so di Jamie, although he often woke, and cried out about his back aching, or wanting to go home!!!
Then another nurse announced that another patient who needed his line replacing would be next! I assumed he was pushing in so he could get on with his chemo in his new line, as his was blocked too.
At around 11am, Dave returned with Charlie, so I was about to take Charlie for a walk to the entrance to have a cigarette (Me not Charlie!!)
Dave said that he was sure Jamie wasn't right, so I said I'd get a nurse on my way out. I was drowsy from waking up, and didn't notice that Jamie was acting strange. dave said to mention that Jamie seemed to be passing out halfway between sentances.
I told the nurse this information, and she agreed to check him out, and I went out with Charlie for my cigarette, thinking that maybe Jamie was anxious, and his oxygen stats might be low linked to his Pulmonary Hypertension, which is solved by a bit of Oxygen wafting near him.
I returned from my cigarette to a room full of nurses and doctors, all crowded round Jamie lying on the bed!
Jamie was in and out of consciousness, and a doctor was trying to get a cannula into a vein, while another was putting some liquid into Jamie's mouth!
It was quickly explained to me that Jamie's blood sugar had dropped to 1.1, and he needed glucose asap.
Hypoglycaemia, it's called.
After 3 attempts, the doctor asked if another doctor could be called to get Jamie's cannula in, the doctor was shaking, and one of the nurses was trying to stop Jamie fall asleep, trying to keep him talking.
Gradually Jamie slowly became more awake, but seemed drunk, and sleepy.
After the cannula was inserted into Jamie's hand he was pumped with over 90 mls of glucose straight away, and may I add, Jamie didn't once flinch or complain about the attempts to put a cannula in!!!!!!
Jamie started to talk silly nonsense, and said "woof" to a few nurses!! His blood sugar levels began to rise... phew!!
Apparently this was due to Jamie being starved from so long, since 7pm the following night!!
Maybe if he'd gone to theatre at 9am he would have been ok?
Or what if he'd had this attack under anaestetic? He would have surely died!
I can't believe how they nearly managed to kill Jamie! This was one of the less risky operations, compared to what Jamie's had, so we had no idea we might loose him!
He's on night feeds, because he is malnourished, surely they might have realised this?
It makes me remember the countless times that theatre was booked, while in Bristol, then cancelled or perlonged, and Jamie sometime had to go and starve again! Hospitals are doing this all the time, and sometimes don't realise how tough this is on the kids!!
A Doctor said that this couldn't be helped, because there were emergency operations, more important than Jamie. That wasn't true, as we knew what had been before Jamie!
I think it's lack of communication between the hospital team, responsible for Jamie's welfare. Hopefully they will all consider this in future!
This isn't the first time we've been unhappy with Exeter Hospital. The Doctors are great, so are most of the nurses, but it's not an oncology ward! And not all of them are trained for oncology patients.
On Friday we had a student nurse. I know that she wouldn't have been asigned to Jamie without supervision, but we rarely saw a qualified nurse. maybe if we did, Jamie's problem might have been spotted earlier!
It goes without saying, Jamie wont be having any more surgery at Exeter!
After all the gurfuffle, Jamie eventually went to theatre and had his line removed. It took less than an hour, an when Jamie returned he was happy and chirpy, ignorant of the earlier drama!
There were no incisions made to remove Jamie's line, and he was NOT in any pain!
I don't know whether it's just us, but Jamie has seemed alot more like his old self, since Friday. He has been lying on the floor, playing for ages, something that he hasn't done since before diagnosis. He has been to my parent's house today, for the day, and didn't cry to come home once!
Tonight we thought, maybe his central line was restricting Jamie's movement? It might explain his head movements? We'll have to watch and see.
So Jamie can go swimming in 8 days!!!! He will enjoy the Scotland Holiday now he can go in the pool.
He will still have weekly blood checks, but via needle. We have taken home some magic cream to put on at home on clinic days, but we think the build up will cause Jamie more anxiety, it's best to use the magic spray and get it over with.
I will update you again soon, Jamie has appointments for checks on his Heart this week, and the urine results are expected, but I think they'll be fine. Jamie hasn't complained of anymore leg pain, I think it was aching muscles after over excercise.
I'm off to put photos on Jamie's main site http://www.beebo.info
Love Kelly
XXXXXXXXXX
Thursday, June 17
Yes, we're all still here!!!!!!!
We've had a busy 2 weeks, catching up on stuff, and still trying to get the house straight!
Charlie's had his 1st birthday, and is walking all the time now!
Jamie is very well, and still eating well. his weight has started to settle around 15.9kg, which the doctor is pleased with.
His mobility seems alot better, he can go down stairs alone, and is running and jumping like normal.
We went for a walk on the beach the other evening, and Jamie was jumping off steps, onto the sand!
I still feel paranoid about the neuroblastoma creaping back up on us. The doctors said to wait for symptoms, which made me feel worse when Jamie complained on leg and arm pain.
Luckily he can be tested by a urine sample, which we intend to do for Monday, when the CLIC nurse visits.
Jamie had clinic for blood check today, the same as every week. Today his lines were blocked, so the nurse left Urikinese in the line, which will be removed on Monday.
My CLIC fundraising is going well, I attended an awarding of trophies at a charity skittles match at Teign Village Social Club, where over £4000 has been raised so far, then went to Hennock Primary school, to talk to the children, and accept another donation, raised by the children, who put on a play at Christmas.
Next week Teignmouth Community College is holding a fundraising week, in honour of their fellow classmate, Ryan, who lost the fight with Leukiemia previously.
We are all booked to go to Scotland in September. We are going the same week as Mel and Dave from Plymouth, so that will be a nice chance to catch up. Dave is having a party to celebrate getting well, in Plymouth on Friday. We are looking forward to seeing him with hair.
I will try to get some time to put more photos up before next week
Monday, May 31, 2004
Had a great week, all is well.
Jamie lost 1/2 Kg since last week. Every Thursday he goes to Exeter Hospital for blood count and weight check.
The good news is that Jamie is off 2 of his medications, so only takes Potassium and Aciclovir.
Coralee came for the day last Tuesday, and we had a good time in the garden, while Daddy mowed the steep bank at the back of the garden, in the hot sun. It took him 6 hours!
On Friday jackie, Andy, Emma and Matty came up from Cornwall, and pitched a tent up in our front garden! Matty has his own site at
http://www.caringbridge.org/europe/matty
On Saturday Alan, Sarah, nicole and Lauren joined us from Paignton. Nicole's site is at
http://www.caringbridge.org/europe/Nicole
we met these families at Bristol, where they have been affected by Cancer also.
Anyway, we all went down to the seafront for a walk along to the pier, where we had ice creams and played some arcade games, before going to the park.
The kids, and Alan went on the bumber boats, and a good time was had by everyone.
We finished off with a BBQ
We also had some sad news.... Owen, one of our buddies from Bristol got his Angel Wings on Thursday after a long fight with AML.
Owen had a bone marrow transplant, while Jamie was halfway through his stint in BMT. His family live in Devon.
This was a shock to us, Owen will be missed.
We are planning to go to Scotland, Malcolm Sergeant House in September. This is a respite holiday for Cancer families.
Also, we would like to go camping in Cornwall within the next couple of months, when we can afford a tent!!!
On Wednesday we are off to Paignton Zoo with Harry and Kim, I will take photos of baboons doing it!!!
I am in the process of improving Jamie's main site, and photo gallery. If you see some weird changes bear with me, I will be experimenting!!!!
Sorry the update is late, and sketchy, I'm watching Big Brother!!!!!!
Monday, May 24, 2004
All is well!!!!
Jamie is still eating, and has not lost any weight, thank god!!!
We've been having a lovely time; enjoying being home, playing in the garden, cousin Harry's been over loads, outings to Crealy, walks on the seafront, arcade games with daddy, been in the park, Jack from Bristol has visited, Grandad cremated the BBQ!
I have taken over Torquays branch of CLIC, for fundraising, from Nana Pat, as she now lives in Taunton, so will be Taunton Chairman. So any of you locals, who would like to join the team, and do as little or as much as you can, please let me know!!!
I'm having a Mare with Jamie's main site, it is down, so when I've sorted it, there are new photos!!!!!
Tuesday, May 11, 2004
Updates will be weekly now, as life as settled, but not boring yet!!!!
We're no where near unpacked!!! We still have a room full of boxes!!
Jamie is doing great, he is still eating, and keeps saying how good it is to be at home. When I say still eating, I mean Jamie eats all day, like he's on steroids. We think he's making up for lost time..... He eats cereal for breakfast, sometimes followed by scrambled egg, drowned in HP sauce, then before lunchtime, has normally had something with chips, then vegetables and gravy for lunch, more chips in the afternoon, and then dinner. In between meals, Jamie is eating icecream, jelly, and ice lollies!!!! Plus he is drinking around 1 litre of fluids per day!!!!
His vomitting reduced to about once per day, until 3 days ago, when he hasn't puked since. His bowel movements are much less runny, and we've stopped cheering when he goes to the toilet and we hear a proper plop!!!!!
Jamie is visiting clinic once per week, for bloods, and weight check. he isn't loosing weight, so his Jeujostomy feeding is only 1000ml max per night, at 82ml per hour, just Peptide 1+, without all the extra additives, which we found was a great help to reduce his runny poos. I know it's a gross subject, but it was soooo runny, his nappy would leak, and if we went out, we were taking 3 changes of clothes, and plus the car seat needed regular washing. It even went through the inco pads!!!!!!
But now Jamie is enjoying being a brother, and is starting to appreciate Charlie, and they play, which is nice to see.
I keep hearing Jamie telling Charlie off, and saying, "How many times have I told you?!" which makes me chuckle. The funny thing is that Charlie takes more notice of Jamie, and actually does what he's told!!!
We went to Teignmouth seafront yesterday, and into the Pier and park, where they both had loads of fun.
I am putting more pictures in the photo album on www.beebo.info tonight, so be sure to take a look
Monday, May 3
WOW!!!!!!
What a great weekend we've had at home!!!
On Saturday Nanny Pat and Grandad Jeff sneaked off and got married in secret! Congratulations, about time too!!!
Also on Saturday, Jamie ate!!!!!!!!! He had chips, Garlic bread and tomato ketchup. And what's more, it stayed down!
On Sunday we had a family BBQ (cooked on a lean grilling machine!) Jamie's cousins came over.
Jamie has really enjoyed being home. He rarely vomits during the day, when not on his feed. And is back to his old self.
He ate twice on Sunday, chips and Garlic bread. Then today, more chips, with gravy, and at dinner time he had Bob the Builder shapes from a tin, which he promptly puked in his sleep. Jamie was so tired today, as we've been out to a Day out with Thomas, at Buckfastleigh. We cancelled original plans to go this morning, due to bad weather, but it brightened up this afternoon, so I took Jamie by myself for an hour, and left Charlie with Dave.
Jamie was falling asleep while eating his dinner tonight, but was determined to keep on eating, but gave up in the end! He did very well.
Hopefully we can start to reduce the tummy feeds, now Jamie is eating. We've discovered that the feeds make him vomit, and runny poos, very frequently, so we are trying to just have him on tummy feeds when he is asleep.
Jamie is drinking very well, and seems to have a drink obsession, he drinks nearly a litre per day I reckon, and it stays down. We have to buy a drink wherever we go, and now Jamie has his own cupboard with his many different bottles of drinks, along with his variety cereals and tins of food he chose today at Tesco.
Saturday 1st May 2004
Happy Birthday Nanny Pat!!!!!!
Guess what...... WE ARE HOME!!!! AT LAST!!!!!
And that's despite a sabotage effort from Dave, who decided inconsidersately to have his appendix out last Saturday afternoon. He started getting pains on Friday evening, and I practically ignored his woes, and made suggestions about him farting for relief!!!
At 3am I drove him to A&E, and then got a phone call at 5am, to say he was being admitted!!! ooops!
So I struggled, but Nanny Pat took Charlie home on Saturday, leaving me able to finish packing.
Dave was discharged from hospital on Monday, he would have discharged himself anyway!!
I went to learn how to make Jamie's feed on Monday, in the milk kitchen. And we also saw Jack, Jamie's friend, on Oncology Day beds, which was nice, before we went home. Jamie thinks the world of Jack, and will miss him.
On Tuesday I don't know how I managed, but somehow got all our stuff jammed into the car, and we came home.
Jamie has been so much more his old self since he was discharged from hospital. His hair is growing fast.
On Wednesday we went into Dawlish to have a walk by the river and feed the ducks, then had to go to hospital, as Jamie's face swelled on one side like Mumps. The doctor didn't seem too worried, so we went back home, and the swelling's gone down, God knows what it was!
Thursday I attempted Trago Mills with a double buggy and vomitting child with frequent poos!!! Bad idea!!!!
Yesterday Jamie had a blood count and check from our Exeter Oncologist, who seems pleased with his progress, despite the hard time we've had. She said she doesn't know anyone who has spent that long in Bristol Hopsital!
After we finished, we met Auntie Tim, and picked up Harry from school to go into town. Jamie chose blue welly boots, and asked to wear them straight away. Then he walked for quite a while around town with us.
Jamie's walking is still not quite right, he seems to drag one lag, but it has improved since we got home. He is due some physio to find out what's going on down there.
I apologise again for my slack updates!!!! Hopefully they will be more frequent, not that there is much to update now we are home. I shall probably do weekly updates.
The good news is that we get a 1 meg connection next week, which is faster than broadband, so I will be doing stuff to Jamies official site. I intend on adding a photo gallery to replace the lack of news, which I disposed of..
I will be taking some nice photos, and intend on putting them up for view, honest!!!!!
It is very hectic at the moment, so we would prefer no visitors for at least another week.
Jamie, Charlie and I are enjoying our morning routine, which consists of: waking up and going downstairs, watch CBeebies, we empty the dishwasher (And the floor!!!), Jamie helps to make cups of tea, Charlie finally gets breakfast, Jamie and I have a bath together, as Jamie likes to help wash my hair. Jamie is becoming more and more himself every day. It is great to see him so happy and well.
Friday, April 23, 2004
GREAT NEWS!!!! WE ARE COMING HOME ON TUESDAY!!!!!!
We need to go to the milk kitchen on Monday, and learn how to make Jamie's feeds up, then physio at 3.30, then we are free!!!!!
Jamie was officially discharged yesterday, and today we went to see the Cardiac Specialist, who came to Bristol from Great Ormond Street Hospital.
She said that Jamie's Pulmonary Hypertension seems to have improved, although there is still an issue of pressure on Jamie's heart, although not enough to require medication.
The specialist suggested we wait and see how Jamie goes. He will attend Exeter Hospital next month to see the Respiratory Doctor, who visits once a month from Bristol, and also we will have to return to Bristol before then for Jamie to have a sleep study done. There is the suggestion that Jamie may have large Adenoids, causing this.
Jamie is well as he is ever going to be, he seems happier when off his feed, which is 20 hours long!
He is still not keeping any liquids down that he drinks, and hasn't eaten.
We have loads of medication and feed to take home!!!
When we return we would like a week to ourselves before visitors, and we ask, could people phone first, and not just turn up on our doorstep.
Wednesday, April 21, 2004
Just a quick update..... I will post up some photos as soon as possible.
I have lost my key to the teenagers room, so have been unable to update!!
Jamie had a good birthday on Thursday, thanks for all the cards and money.
The Doctor took him off his prostoglandin therapy, and we all went into town, where Jamie chose a "Mini Cooper Paddling Pool" from Early Learning Centre, some tapes, and a helicopter from Gadget Shop.
We bought Jamie a Scooby Doo birthday cake, and he enjoyed being sung Happy Birthday, and blowing out the candles. All the nurses came round to sing and watch him blow his candles.
That evening Jamie was allowed to stay out at Sam's House.
On Friday Nana Pat came over and slept with Jamie in hospital, to prepare for the family arriving on Saturday.
Jamie's cousins, harry and Josh came for a few hours on Saturday, and we had food, and a birthday cake.
Jamie was a bit overwhelmed and kept having to lie on his bed every now and then. Jamie enjoyed seeing his cousins.
We bought Jamie a Nemo cake, and all sung Happy Birthday, and let Jamie blow the candles out again.
On late Saturday afternoon Rob and Paula brought Jamie's friend Jack to Sam's House to see us. Jack has just had a BMT, so he and his family are allowed in Sam's House.
On Sunday Nana Teresa and Grandad Paul came for the day, which we spent at Sam's House. Carl, another child from the ward had his 6th Birthday Party.
On Monday jamie came off his TPN, and has been staying at Sam's House. His feed through the stomach is going very well, and he is getting at least 1000 calories per day. His weight has stayed around 18.4KG! We see the specialist for Jamie's Pulmonary Hypertension on Friday, hopefully she will confirm that it is no longer a problem. We are hoping to be sent home next week!!!!!
Yesterday we went to visit Jamie's friend Jack, at his home in Bristol. Jamie had an absolutely brilliant day. he was happier than we've seen him for ages. He had a few hours off his feed, and was running about with Jack.
Today we have popped home to Devon, as Charlie has some vaccinations that I didn't want to miss. Plus we took a car load of junk home, to lighten the load when we are discharged.
Wednesday, April 14, 2004
Hello!!!!
It's been a good week!
Jamie seems to be getting better everyday, he is having an echo scan each day, and his Prostoglandin therapy has been gradually reduced since Saturday, and today it is 0.4mg per hour!!
We've seen a great difference in him, both personality wise, and with more energy. he is vomitting only about twice per day, and is keeping his feeds down, which is great.
Today he weighs 18.4kg, and he has hamster cheeks!! I think that he is being plumped up for another attempt to take him off the TPN and let him try just his Jejunostomy feeds.
We hope that he will be off the prostoglandin by the time the specialist arrives, and maybe he wont need any further medication!
That's just one more step closer to home!!!!!!!
On Sunday evening, some dosey bank nurse tripped over Jamie's Jejunostomy line, pulling it out 7 inches! That's the most it's come out so far! So Jamie was crying, and in pain. Dave had to clean it and push it back in, which is just as painful, to prevent infection. jamie was soooo brave, and then thanked Dave for pushing it back in!! Bless.
Every three or so days Jamie needs a new cannula for his prostoglandin therapy, as it cannot go through the central line without being in saline. He is so brave. The nurses put magic cream on all prospective areas, then a bit later the doctor comes, and Jamie asks for "the magic spray" which also numbs the spot. After a little ouch scream, he soon forgets about it, and asks me to take his old cannula out.
For the last 3 days, Jamie has been allowed out to Sam's house for a few hours. We take the prostoglandin pump with us. jamie attaches his pump to a trike and has been peddling around the house.
I've put some more photos up for you to see. he has more hair now!!!
Tommorrow is Jamie's birthday, and on Saturday his cousins are coming up to see him, for a mini party. we feared that Jamie wouldn't be up to seeing too many people, and it might ruin his enjoyment of the day, so his cousins are only staying for a few hours, in case Jamie gets over tired.
Saturday, April 10, 2004
Jamie's lung biopsy results were inconclusive, doctors mentioned something to do with the blood vessels in Jamie's lungs, and will talk to us in more detail soon.
Jamie has been well and happy all week, back to his old self, I'd say.
We have been increasing his feed by 2ml every 6 hours, and he is coping well. He is sick at least 4 to 6 times a day, but we hope that it will die down soon.
The doctors reduced his Prostaglandin Therapy IV drug, for his Pulmonary Hypertension, as Echo scans showed that the pressure on his heart had reduced. He came down to 1.1ml per hour. At the end of April, a specialist in Pulmonary Hypertension is coming down from London, and will see Jamie to decide on what course of action to take, and this is the only doctor allowed to prescribe oral drugs for Jamie, so we can eventually go home.
Hopefully we should have sorted his feeding out by then, and be ready to go, fingers crossed!!!
We've moved out of our private cubicle, into the main ward, as it is more social for Jamie, even though there is only one other family on the main ward besides us!! It's also better for Charlie, who returned from his holiday in Grimsby yesterday.
Tuesday April 6th, 2004
Happy Birthday Charlotte!!!!!
All news has been re-located permanently to the Caringbridge site, as I find it a lot easier to store and update from there.
Jamie's Lung Biopsy went well, and we await results tommorrow. They managed to do it by keyhole surgery, and Jamie only needed a little morphine when he first came out of surgery, and oxygen for a few hours.
Sunday, April 4, 2004
Jamie is due in theatre 9.30am tomorrow morning for a lung biopsy of the right lung. The surgeon wants to take samples from the top and bottom of the lung, and hopes to do it by keyhole surgery, so that Jamie will have 3 small cuts. One is for the staple to stop air supply to the lung while they work. It should take 1 hour, and providing it is managed by keyhole, Jamie will not need a chest drain.
Jamie has been in good spirits over the last few days. On Friday he was un-barriered, as his 3rd culture showed no signs of Norwalk Virus. So we opened Jamie's door, so he can have communication with the outside world, and shout "Bogies!" to passers by!!!!
He went to the playroom on Friday afternoon, when Grandad Jeff arrived. Nana Pat came up for the day, before taking Charlie off to Grimsby for a few days, so we can concentrate on Jamie.
I've been staying in the hospital with Jamie all week, to give Dave a break before Charlie comes back, but tonight is my night off. I don't get a lie-in, as Jamie is in theatre first thing, and I want to be there when he comes out!
Nana Teresa and Grandad Paul visited today, as usual. Nana Teresa and I did some retail therapy, at the Next Clearance shop (Crap) and Cribbs Causeway.
This evening we had a visit from Stephanie, Emily and their mum, from the ward next door. Stephanie's brother has been admitted there. Stephanie goes to school with Billie, a close friend of the family, and Stephanie drew Jamie a picture of Stitch after visiting his website at school. When Stephanie visited, Jamie had her picture on the wall, and said thank-you.
Thursday, April 1, 2004
Jamie came out of ICU on Tuesday, after an un-eventful stay in ICU.
On Tuesday evening his Prostaglandin IV wasn't put up properly and the next morning it was discovered that Jamie had gone 10 hours or so without this drug (The one that widens the artery to his lungs)
I had noticed on Tuesday night, how chirpy, and well Jamie had seemed, and assumed he was on the mend, then on Wednesday realised that the absence of the Prostaglandin made him feel better.
We pointed this out to the Doctors, that it must be the Prostaglandin making Jamie feel so tired and be sick all the time, but it was felt that until we know the cause of the Pulmonary hypertension, it's best to stick to the Prostaglandin therapy. So the drug was restarted and 30 minutes later Jamie returned to vomitting and sleeping, and generally feeling sorry for himself!
We are still waiting for the results of Jamie's MIBG scan.. the Consultant from Radiotherapy said that they need typing up, how long does that take? And doesn't he realise how important these results are to us? Our doctors have been harrassing him to speed things up... I have a right mind to go and type them up myself, it may be quicker!
The Respiratory Doctor came to see us yesterday, and said he would like to take a Biopsy of Jamie's Lung/or Lungs to try and find out the cause for his Pulmonary hypertension, so we can start treating the cause instead of effects.
They feel it could be caused by the Chemo he had in BMT, Veno Occulsive Disease, an infection, or something else!!!
Our surgeon visited today, and said he would try and fit Jamie in some time next week, to be confirmed.
So then the doctors are looking into whether Jamie's Prostaglandin drug can be changed, to help him till next week, as this one makes him vomit, and feel lousy.
It is Jamie's Birthday on 15th April (Thursday) and he will almost definately be here for it, so we are planning a Party in the playroom, so well friends can come and help Jamie celebrate his 4th birthday. We've decided to try and keep presents to a minimum, unless people know something in mind that they would like to get Jamie. We have run out of present ideas, and space for toys at home. Jamie hasn't even played with most of his Christmas presents, and really isn't well enough to do anything more than watch videos... so videos could be a good idea!
We are opening a building society account for Jamie to put all his birthday money in.
Sunday, March 28, 2004
Sorry the update's late... When I returned on Friday evening, I asked the nurse if one of the Doctors was going to come and see Jamie to find out why his breathing was strange, so a Doctor was called.
At 12.30am Jamie had a chest X-Ray, which suggested that Jamie had a chest infection, so antibiotics were started, and Jamie was set up with moist oxygen near his face, to keep his oxygen stats up.
Last night his oxygen stats were struggling to stay above 80%, and we were worried that the moist oxygen may be causing more damage than good, so the nurse agreed to swap it for dry oxygen until I could chat to a doctor today.
The doctor sent Jamie for another chest X-Ray today, and said that his lungs looked better, but was not happy, as his oxygen stats were still low, and he had started to sweel, like he was retaining water.
An Echo was done, and then a CT scan, and Jamie was transferred to ICU (for a couple of days, they said) So he can have a special drug, Prostaglandin therapy, which will widen the artery from the right side of Jamie's heart to his lungs.
Doctors suspect that Jamie has Pulmonary hypertension. Here is some info:
Pulmonary hypertension (PH) is a rare lung disorder. PH can occur with or without an identifiable cause.
When a person has PH, the blood pressure in the pulmonary artery rises far above normal levels. The pulmonary artery is the blood vessel carrying oxygen-poor blood from the right ventricle, one of the pumping chambers of the heart, to the lungs. In the lungs, the blood picks up oxygen and then flows to the left side of the heart, where it is pumped by the left ventricle to the rest of the body through the aorta.
Hypertension is the medical term for an abnormally high blood pressure. This abnormally high pressure (pulmonary hypertension) is associated with changes in the small blood vessels in the lungs, resulting in an increased resistance to blood flowing through the vessels.
This increased resistance, in turn, places a strain on the right ventricle, which now has to work harder than usual against the resistance to move adequate amounts of blood through the lungs
--------------------------
So Jamie has been moved to ICU, he is awake, and doesn't seem unwell, except he is sleeping a bit more often than usual. He has a private room, due to him still having Norwalk virus, with a TV and Video.
This drug he needs is given over a 24 hour infusion, and we will know more in the next couple of days, as to the seriousness of this, and how long it is going to last, whether it is permanent or temporary. Jamie will have regular Echos to make sure the drug is working.
Because Jamie is on TPN, and needs antibiotics, and was having a blood transfusion tonight, the doctors needed to insert a cannula into Jamie because this drug needs it's very own line, and Jamie's lines were all "busy". One of the doctors put a cannula into Jamie's foot, after he'd had "Magic Cream" and I was soooo proud, he never even flinched!!!
So please don't worry, Jamie is very happy, and the nurses love him to bits, as most of the ICU patients are babies, and too poorly to interact! And Jamie is chatting, and being funny, and demanding attention, they are thrilled, as it must be boring for them there at night!
They've allowed Dave to stay with Jamie on ICU, so Dave's either going to sleep on the bed with Jamie or crash on the floor with his sleeping bag! That's if they go to sleep, when I left at 1am, Dave was setting the laptop up for Jamie!
Friday, March 26, 2004
Here's an early update, as I'm sleeping at the hospital with Jamie tonight.
Yesterday morning Jamie had an isotope put into his central line, for the MIBG scan today. When we arrived back the Doctor announced that Jamie's cultures had shown positive for the Norwalk Virus. This was after we'd taken him into the main BRI hospital, into the shop, and cafe!!! So if there is an outbreak you'll know why!!!
One of the nurses has said that it is airborn, and another has said that it isn't!!!!
His feed was changed yesterday to Pedisure 1, but taken down last night due to him going poo like mad and vomitting. his poo is runny anyway, because of the TPN, so it is difficult to tell if he has the runs or not!
Today he had his MIBG, we should have the results back next week some time. The person scanning Jamie was different from the ones we've had before. he wasn't too nice, and pulled Jamie about at one point and hurt his Jejunostomy! Jamie said loudly, "I don't like that man!" and then said to him, "I'm not your friend anymore!" Bless.
When we arrived back from the scan, Jamie's oxygen stats had dropped, so he has an oxygen mask near his face while he sleeps.
Dave and I went to the new cofee shop opposite the hospital for an early lunch, while Jamie slept. On the way back we were waiting for a lift, and a man got into the Theatre and Emergency lift, when there were blatently other lifts coming down. So when the door had closed, Dave pressed the "lift call" button, so the door opened again. dave did this 2 more times, and then I did it the last time. The man got so frustrated that he stormed off up the stairs!! I don't think he knew it was us, maybe he assumed he needed a special porters key or something! After he left me and Dave mnearly wet ourselves laughing, it made our day!!!!
Wednesday, March 24, 2004
Since the last update, Jamie's ward has been closed, due to an outbreak of the Norwalk Virus. luckily, Jamie's cultures came back negative, so he doesn't have it!
It's been quiet on the ward, with onlt 4 or 5 patients, all moved to private side rooms, and barrier nursed just in case. We've had 2 confirmed cases of Norwalk on the ward, and it has been deep cleaned, and will hopefully be opened again by tommorrow.
Jamie's been more like his old self every day. He has been cheeky, and funny, and happy. He's even been eating!!! Yesterday he ate 1/2 an orange, and requested sweets, which I forgot when I went shopping!! So I've bought 2 packets today!!!
I went to the Sugababes concert at Plymouth Pavillions on Sunday with my Mum and Dad, they were great!
On Monday I brought Nana Pat up to Bristol, where she has stayed with Jamie for 2 nights, to give me and Dave some time together.
Today Jamie has a kidney function test, called a GFR, where he has a radioactive substance through his central line, and then they take blood every hour or so, to measure it filtering out through his kidneys.
Tommorrow Jamie has a thyroid blocker through his central line for a MIBG scan on Friday... This is the important scan that will tell us if he is in remission or not; so fingers crossed everyone.
They still haven't figured out Jamie's feeds, without him puking or pooing lots, but they are close, so we should hopefully be home before Jamie's Birthday; 15th April.
We've decided that Jamie has far too many toys. He got loads for Christmas, that he still hasn't played with yet, because he hasn't been home. So if anyone is wondering what to send for his birthday, please send money (Cheques) so we can open Jamie a Building Society account so he can save for big stuff he wants.
It's my turn to stay with Jamie tonight, so I'm off to the hospital.. I will update again on Friday, and will have photos of Jamie's hair growth!!!! He looks like Action Man!! And he has eyebrows and eyelashes!!!!!
Saturday, March 20, 2004
Good news!!!!!!
I spoke to our specialist today, and she explained about Jamie's future treatment options; radiotherapy, or not, and retinoic acid. And she said that Jamie is in partial remission!!!!!
We hope to get a MIBG scan asap, to find out if the 3 remainding spots have disapeared, and if they have, then Jamie is in Full Remission!!!!
Jamie's procedure on Monday, is called a Jejunostomy, where his Gastrostomy tube was extended into his lower intestine, so it bypasses the stomach. I mentioned the excess tubing, before, and the surgeon said it is normal, and will prevent the tube pulling out of place if it is pulled, so he has safety slack!!!!
So Jamie no longer has a Gastrostomy, it is now a Jejunostomy!!!! This will stay for quite some years we think, and we will be trying to encourage Jamie to eat, and hope he can tolerate real food!!!
On Wednesday his tube shot out 6 inches, causing him alot of pain, so it had to be pushed back in by daddy, and tapped with elastoplast securely to his tummy. He was given dydrecodiene (spelt wrong) for the pain.
We have noticed the "Old Jamie" coming back gradually, day by day, and it's so great to see him happy, and being cheeky to the nurses!!! He's excited about the prospect of coming home, whenever, we don't yet know!
He still vomits about once, maybe twice per day, but it's only a small amount, usually in the morning, and after he's drank.
His walking is still wobbly, but with time, and more excercise, it will improve.
In the early hours of Friday Morning Dave became ill will sickness and thr runs (can't spell diareheoa!) So I had to spend the day with both Jamie and Charlie on ward. Luckily Nana Teresa and Grandad Paul came up a day early, and Grandad Paul is staying with Jamie tonight, and Nana Teresa has taken Charlie home to Chudleigh to give us a night off.
I'm off to see Sugarbabes in concert at Plymouth Pavillions tommorrow night, with mum and dad, and Nana Pat will be having Charlie.
Monday I plan to go to Trago Mills!!!! And sort some things out at the new house, before coming back to Bristol. Nana Pat has kindly offered to have Charlie for a few days (Thanks Pat!) So I can stay with Jamie for the odd night.
Tuesday, March 16, 2004
Sorry it's late!!!!!!
Great news!!!!!!
Jamie went to theatre today to have his Gastrostomy tube extended into his lower intestine. Doctors believe that this will help him not to be sick. We still need to wait and see if he still gets reflux though, and he may possibly need another operation to solve that.
On Thursday we took Jamie and Charlie to Explore @ Bristol, which is a "Hands on" science museum. It was too old for Jamie to understand, but he still enjoyed wandering around and playing with the exhibits with Daddy!!!
On Friday we had a quiet afternoon at Sam's House, then Dave went down to Devon for the weekend, with Charlie, while I spent some quality time with Jamie.
On Saturday I pushed Jamie up St Micheal's Hill, which is very steep, to Sam's House for a few hours before returning to the ward. Jamie had NO TPN on Saturday night.
Doctors decided to stop his TPN, and see what happened, whether Jamie lost too much weight, ate, was sick less...
On Sunday morning, after puking in my hair, while I was lying on his bed with him, Jamie asked for a drink!!!! And has been drinking quite alot since!!!
Unfortunately this meant he has been being sick alot more often!!!
This brought doctors to the conclusion that maybe his stomach was filling up, and the food wasn't draining down to the lower intesine, for some reason. Then as the stomach was full, it had nowhere else to go but up!
Hence the surgery today, to sort of by-pass the stomach.
This wont be a permanent solution, we hope. The sugeon warned us, before Jamie had his tumour out in November that Jamie may have to be fed through Gastrostomy for a few years. I like to think this by-pass will give his stomach a chance to heal, after the bashing it has got from his top up chemo after surgery, then high dose chemo before stem cell rescue.
Also, while not on TPN, Jamie lost 1kg, so he was put straight back onto it, until the other issues are solved (sickness)
Jamie was in theatre for 1 hour having the surgery today, by endoscopy, which is through a long tube, down his throat, so he didn't need to be cut open.
When he came back, he was drowsy and tearful, but cheered up within an hour and was soon back to the old Jamie that we haven't seen for months!!!
After being sick this evening, Jamie had an X-Ray, to check that everything was in place. The X-Ray showed spaghetti junction inside, which looks like his Gastrostomy tube is going round the houses, before it gets to where it's meant to be!!! This might explain the trouble Jamie has had, being sick. We have to wait for the Doctor to see the X-Rays and tell us what's happening before anything is done. I will post an update tommorrow night.
And wait..... he requested food!!!!!! Kentucky! Which wasn't the best thing for post BMT, but hell, better than nothing. So I got him popcorn chicken and chips, and he ate one chip and a bite of chicken!!! It's a start!!!!
My friend Coralee has been visiting for the past 2 days, we haven't seen each other for ages, it was great to see her... Hi Corals, you old Tart!!!!!! ###########
Our friend Dave, from Plymouth is back on ward, in the next-door bed to Jamie, which has also cheered Jamie up. Dave should be going home "All Clear!!!" in a few weeks.
Wednesday, March 10, 2004
Well, Charlie enjoyed his first ever swim on Monday. He was very confident, and kicking and splashing and laughing, until he choked on some water!!!! I decided to take him out after that. He also enjoyed the shower.
On Monday Nana Pat arrived, and stayed in hospital overnight with Jamie.
I had a full body massage on Tuesday morning, courtesy of CLIC!!! It was great! Then that afternoon we went for a walk, with Nana Pat, down past the harbour to the Industrial Museum, where Jamie saw a model railway, green double decker bus, concorde cockpit, helicopter, boat parts, he loved it. I haven't seen him enjoy something this much for ages!! There are some photos on the photo page.
On the way back we stopped in a cafe for a drink, and Jamie had a sip of my coke!! Then Jamie and Daddy flew a model airplane, outside.
I stayed in hospital with Jamie last night, while Dave stayed at Sam's with Nana Pat and Grandad Jeff.
Jamie was thinking about food yesterday, he asked to have a look in the food cupboard, but didn't fancy anything, which is a start! Today he asked for a sweety, and chew one for a while!!! He is only being sick once or twice per day now. His Gastric feeds are 25ml per hour, at 16% concentration for 18 hours, and he has 12 hours TPN, instead of 18.
Today Jamie had Physiotherapy, and she was happy that we are encouraging Jamie to be active, and he rides the trike at Sam's. She said his leg/limp seems to be imporving, and said that we don't need to see her again, unless we have a problem.
This afternoon we picked up the new car, and took it for a drive. We were worried we weren't going to have it today, as the garage found the battery was flat, as it had been stood on the forecourt for 2 weeks, and needed to be bumpstarted. The computer onbord needed rebooting. Luckily it rebooted ok.
Tommorrow we hope to have another outing, either Zoo or Explore @ Bristol
Sunday, March 7th, 2004
Not much to report.. We took Jamie out for new shoes on Saturday, as his feet have grown!!!
Jamie has put on 4kg since his December!! He was around 13-14kg, and he is now over 17kg!!! He looks like he ate all the pies, and even has a double chin!!!!!!
Today Grandad Paul and Nana Teresa came, and were pleased that Jamie is back on the ward, so they didn't have to change to daft green outfits!!!
The baby from hell arrived on the ward on Friday morning, at 6am!!! Everyone was still asleep, what a time to arrive at hospital, they weren't due any treatment till later that day! Talk about eager, or maybe they just ran out of electric, or milk?
Jamie played outside today, and rode the trike up and down the corridors in the house.
We are trying to stop him being such a wimp with Charlie, as he crys easily if Charlie bumps him with a car, or takes something off him... Charlie is a thug!!! We are encouraging Jamie to tell Charlie off, instead of whinging to us! Charlie was upset today when Jamie insisted he share a car with him.. you go Jamie!!!!
Jamie had a bath at Sam's again today, he insisted I have one with him, and we ended up painting ourselves with green soap paint, Jamie enjoyed himself, which is strange because Jamie is always reluctant to have a bath. I think it might have been because I said that Grandad and Daddy have a bath every day!
Nana Pat is coming up tommorrow, for a couple of days.
Also, I will be taking Charlie swimming for his first ever time tommorrow!!!!!!! I will let you know how it goes, he will love it, as he loves baths!
Friday 5th March
Sorry again for lack of updates!!!
Jamie was allowed out again on Monday, Tuesday and Wednesday.
On Tuesday Jamie saw the Physiotherapist, who is going to do some work with Jamie, as he walks awkwardly on his left leg.
Yesterday we went to look at the new car, at Ford, and got a phone call from BMT saying that Jamie had a bed on Ward 34!!!!
So after a trip to the train station, we moved Jamie down to bed 9, David’s old bed, but previously Jamie’s old bed too!!!!
So today, Jamie has been able to get out of bed and go to the playroom, which he has enjoyed. Then this afternoon, Dave brought him up to Sams House, where he played in the garden, inside with Charlie, had a bath with Charlie (I don’t bath him on the ward as I feel it is not very clean in their bathroom). Then Jamie, Charlie and I curled up to watch old Disney Cartoons, in bed.
Jamie is allowed out most days now, between 3 and 7pm, which is a nice break for him.
He is still on 18 hours of TPN, and also 18 hours of Gastrostomy feeds, at 40ml per hour, pre digested feeds.
Jamie is still unable to eat because of his Oesophagitis, which has caused painful ulcerations of the inside of his throat downward below the oesophagus, so we believe. Until this heals, he will be unable to tolerate food through his mouth.
So we need to gradually increase the rate and strength of his gastric feeds, while reducing his TPN.
So far Jamie is still being sick at least twice per day, but it doesn’t make much difference what strength of gastric feeds he is on.
Sunday 29th February
On Thursday Nana Pat came up and stayed the night with Jamie on BMT, then went home on Friday.
It also snowed here all day Thursday, and during the night, and we had about 3 inches of snow!!!
Jamie wasn’t able to go out in the snow, but he made a snowman with cotton wool indoors.
We were told on Friday that Jamie would be moved down to Ward 34 over the weekend, probably Sunday, as there were staff shortages on Saturday.
This morning we got the news that Jamie’s bed had to be given to someone coming in from A&E, so god knows when we will move now!
Thankfully Jamie was allowed out for a few hours, to Sam’s house, where he had a great time.
He had more energy than we expected, and went out in the play park in the garden, and rode on a trike. I bet he’ll sleep well tonight!!! Hopefully he will be allowed out again.
Wednesday February 18th
So far so good. Jamie’s Gastrostomy has been a success. He started on 9 hours of feed through it last night at a rate of 10ml per hour, and didn’t vomit. The usual rate is 60ml per hour for 12 hours, I think.
Tonight he is having 9 hours at 15ml per hour, and it will be increased each night gradually.
Jamie has been having temperatures, and is on antibiotics, but doesn’t seem unwell at all, so we will wait and see.
He has been awake all day today, cutting up paper, playing with his army men, and airplanes, on the laptop, and watching Dinosaurs, Scooby Doo and Treasure Planet videos.
Dave is down in Devon moving furniture into our new house; I will be going down on Friday afternoon to sort out the loft!!!!!
This will make you laugh… Jamie asked to wear my eternity ring today, so I tried to take it off, for the first time in over a year. It wouldn’t budge, it was stuck tight, and leaving a mark on my finger!! I tried fairy liquid to lubricate, but I couldn’t get it anywhere near the knuckle!!! In the end my finger was purple and swollen, so I went down to A&E, where a nurse kindly cut it off!!!!! I still have a mark, and sore finger!!!!
Tomorrow, Dave is returning from Devon, with Charlie, who has his Polio vaccine in the afternoon, bless.
Monday 23rd February
Sorry I didn’t update last night as promised, Jamie vomited on the laptop yesterday, so it had to be switched off and dried out!!!! I can still smell vomit now; Dave couldn’t have cleaned it up very well… the aroma drifts up, as the laptop gets warmer!!!!!!
Charlie had his Polio on Thursday, and only cried for a second. Thankfully he didn’t have any after effects.
I went down to Devon to dejunk the loft, and finished moving our stuff into the new house at Teignmouth.
Jamie’s been doing well on his gastric feeds, he was started on 10ml per hour for 9 hours, then 15ml per hour for 9 hours. Then from then on he has been on 18 hours per night, in 2 parts, and the ml per hour increased by 5ml every 9 hours. Does that make sense?
He was fine until he reached 35ml per hour, and they got too ambitious and changed the type of feed, and since then Jamie has been vomiting for Britain.
This is the only thing keeping Jamie in hospital, so far, his Gastrostomy healing and feeding issues; once it’s all sorted we will be allowed home. I think then we will have a break before the next phase if it’s needed.
I have no idea if the doctors plan to do scans and tests to see the progress of the treatment. We are hoping there will be space to move down to ward 34, so we can all be together again.
BMT is very nice, the staff are great, but as Charlie isn’t allowed in, it is difficult.
On Sunday Nana Teresa and Grandad Paul came to visit. While I was out shopping with Nana Teresa, Grandad Paul thought it would be clever to shoot the fire sensor with a suction dart gun, setting the fire alarms off!!! The hospital had to be evacuated except patients, and one person was allowed to stay per patient. 5 Fire engines arrived and Jamie was visited by lots of Firemen.
Grandad and Dave decided to point the finger of blame at Jamie, and only later confessed to the nurses that it was actually Grandad Paul!!!!!!!!
Today I left Charlie in the Play centre for an hour and went up to visit Jamie, who was asleep for the whole hour I was there!!!!!
Monday 16th February
Sorry over a week has passed between updates!!!! Jamie uses the laptop a lot, and now I have Charlie back so there hasn’t been much opportunity to do updates. I have requested to have the laptop on Wednesday and Sunday evenings, so hopefully updates will be more regular from now on.
Last Sunday Jamie’s newly repaired central line could be used, so the cannula was removed from his hand. This and a visit from Grandad Paul cheered him up.
On Monday I went down to our house in Devon to pack all our stuff into boxes for the move to our new house in Teignmouth. Tomorrow Dave is going down to move the packed boxes and furniture into the house, where Nana Pat and Grandad Jeff are living. They have bought a house in Taunton, closer to where Grandad Jeff works, as a teacher. Our new house has 4 bedrooms, a large lounge, dining room, downstairs toilet, garage, and central heating!! Nana Pat and Grandad Jeff have redecorated and are replacing the downstairs carpets, so it will be all fresh, when we finally get home!!!!!
Blood counts dropped during the week, but apparently it was expected. They soon shot up at the end of the week after GCSF, which is a medicine that stimulates the stem cell pools to generate white blood cells. People have this before they donate bone marrow also.
Jamie has been allowed to come out of his room, and walk around the ward, providing he doesn’t leave the ward. On Friday his friend jack was admitted, so he was allowed to visit him in his room, in non-isolation.
During the week Jamie was weaned off the steroids, which had originally played a part in reducing his temperatures. After this his vomiting increased, and he has had a few temperature spikes also. Doctors aren’t too sure why this is happening.
Today Jamie went to theatre and had a Gastrostomy and a biopsy of his oesophagus. Doctors suspect Jamie may have oesophagitis, which is inflammation of the oesophagus. We shall get results soon. The Gastrostomy was a success, and over the next few days, once the Gastrostomy has had a chance to settle, Jamie will be weaned gradually from TPN to gastric feeding. I have updated the info section with gastric feeding info.
When are we coming home? Good question!!!! We are not sure, we have to see how Jamie gets on with his new feeding regime, and there is talk of letting us move to ward 34 for a while before allowing Jamie out to Sams House (Our accommodation) We can’t make any plans, as things are changing all the time, but doctors are amazed by how well Jamie has coped with treatment, and how tough he is.
Saturday 7th February
Great news… Jamie is much better. He hasn’t had a fever for over 48 hours, and is back to his old self.
Doctors have said how amazing Jamie is to get through such a bad case of Mucositis, that just disappeared over night!
They still never got to the real cause of Jamie’s temperature… one doctor said it was Septicaemia, another said it was because of the Busulphan, and there was some talk of it being a phenomenon of Graft Verses Host, which isn’t normally presented with an Autograft (= stem cell rescue with the patient’s own stem cells)
Jamie is well, and his blood count is rising fast.. I bet his Neutrophils are at least 1 by Tuesday. After 3 days of a positive blood count doctors may let Jamie out to visit Sam’s House for a while, and then over the next couple of weeks, gradually wean him out till they let us go home.
There is still the issue of Jamie not eating. He has been on TPN since October, and has hardly eaten anything during this time. The option of nasal gastric or Gastrostomy is still to be addressed.
Yesterday Jamie had a rotten day. First his line was tugged accidentally as a nurse lifted him off the scales. Then later while he was asleep a sample was aspirated from his nose, to test for the RSV virus, as he has symptoms of a cold, which are similar to RSV virus. This upset him, and was a rude awakening.
Then later his line split, while being flushed. Probably weakened by the earlier tug. So it needed clamping off, and a doctor was called to repair it.
In the mean time a cannula had to be inserted into his hand, to continue giving medication. First the doctor put some magic cream on his hands to numb them. Jamie was asleep when this was attempted, and woke up unhappy again!! He was very good when the cannula was inserted, I managed to distract him, and I was proud of how well he coped.
Jamie had a very unsettled night after his crappy day, and was very wakeful. We both felt tired today, and Jamie was moody and tearful all day.
The line was repaired by Jamie’s favourite doctor this morning, but can’t be used for 24 hours, until the glue dries properly!!!!
Wednesday 4th February
Fingers crossed, Jamie has turned the corner, and is improving…. The Mucositis has completely gone, leaving him slightly wheezy.
The last resort antibiotics have seemed to work, Jamie is having fevers less often, and is much more well, and back to his old self. He is still on IV Paracetamol, but his Morphine is being reduced because he doesn’t need it now the Mucositis has gone.
We thought we’d sussed a pattern in his fevers. He was vomiting, and then would have the shakes, then his temperature would start to rise, and so when it peaked the nurse would start IV Paracetamol, which takes 20 minutes to bring his temperature down. By this time, Jamie would have fallen to sleep, and would sleep for 2 to 3 hours, then wake up feeling fine. 8 hours later the Paracetamol would run out, starting the cycle again.
I expected Jamie’s temperature to start rising at 2am this morning, but when I woke at 6am, it hadn’t!!!! Trust Jamie to be awkward!!!!!
He even asked for something to drink!!!!!
Yesterday I bought him some micromachine cars and helicopter, which he played with, on his bed for most of the afternoon. Whilst I was in town buying them, the play lady came in and sat with Jamie, he seemed happy, and didn’t even bother that I was going!!!
Last night Jamie was up to mischief…. While I’d popped out a nurse had helped him go wee, and he’d told them to put the used wee bottle up on the shelf where we keep the new ones… later on I went to get one down, and nearly got wee all over my head!!!!!!!
Jamie had an Echo to check the chambers of his heart today; we should get results in a couple of days. Then tomorrow Jamie will have to go down to the BRI for a CT scan of his chest.
I will keep you posted….
Monday 2nd February
On Friday we found out that Jamie has Septicaemia. Alternative names for this are; Blood poisoning; Bacteraemia with sepsis. Basically it means; the presence of bacteria in the blood.
Here is some info:
Septicaemia is a serious, rapidly progressing, life-threatening infection that can arise from infections throughout the body.
Septicaemia can rapidly lead to septic shock and death. Septicaemia associated with some organisms such as meningococci can lead to shock, adrenal collapse, and disseminated intravascular coagulopathy, a condition called Waterhouse-Friderichsen syndrome.
Septicaemia can begin with spiking fevers and chills, rapid breathing and heart rate, the outward appearance of being seriously ill (toxic) and a feeling of impending doom. These symptoms rapidly progress to shock with decreased body temperature (hypothermia), falling blood pressure, confusion or other changes in mental status, and blood-clotting abnormalities evidenced by hemorrhagic lesions in the skin (petechiae and ecchymosis).
Since my last update, Jamie has mostly slept, and only been awake for short periods of time, and has been bringing up a lot of blood and mucous. He is on Morphine, loads of antibiotics, as well as his TPN, and IV Paracetamol. He has also developed a raised heat type rash, where he was red and sore from the Busulphan, under his arms and around his groin.
The doctor said it’s the worst case of Mucositis that he has seen for a long time.
On Saturday afternoon Jamie suddenly perked up, and sat up in bed for a few hours, playing with the digital thermometer, shooting the ear guards at me, until we popped to the hospital shop and bought him a gun that shoots spinning discs.
On Sunday Nana Teresa and Grandad Paul visited. Grandad Paul went in first while I went shopping with Nana Teresa and baby Charlie, who was brought up for visiting rights, giving Nana pat a well-earned break.
Jamie was awake for most of the day, but fell asleep half an hour before Nana Teresa went in, so he was asleep for the whole of her visit!!!!
The doctors don’t know what is causing the temperature to continue, despite Jamie being on every antibiotic possible.
Today Jamie was very bright and seemed to be well for most of the day, until late this afternoon, when his temperature soared up, and he began to shake, and his oxygen saturation fell, so he needed oxygen for a while.
Lots of doctors have been in to see Jamie today, and have discussed the danger that Jamie is in; they must find the cause of his fevers. The blood cultures keep coming back fine, including the samples taken from his central line.
Tonight they will try one last antibiotic, and steroids. If that doesn’t work Jamie’s central line may have to be removed, which will be risky having surgery with no counts.
Jamie is sleeping at present, so fingers crossed everyone that tonight is the turning point!!!
Thursday 29th January 2004
Sorry for lack of updates…
Jamie had a good few days after his transplant, and was climbing the walls at one point, with lots of energy.
On Sunday Nana Teresa and Grandad Paul came to visit. Only 2 people are allowed in Jamie’s room at once, so it was difficult juggling us about!!!
That evening after they left Jamie’s temperature went up to 37.8. Later the same evening the decision was made to put Jamie on antibiotics, and blood cultures were taken.
On Monday we found out that Jamie also has Mucositis… Here’s the science bit!!!…
The mouth and digestive tract are composed of cells (mucosa) that are more sensitive to chemotherapy. The lining, or mucosa, of the gastrointestinal tract, which includes the inside of the mouth and throat, is one of the most sensitive areas of the body. Thus, during or after chemotherapy, a cancer patient may present with mouth problems, ranging from dryness to ulcers. Many chemotherapy drugs can inflame the lining, a condition called Mucositis.
Mucositis appears as redness (inflammation), sores (ulcerations) and associated discomfort and pain.
These mouth problems are most often due to chemotherapy but can be caused by other medication. Three to ten days following chemotherapy, patients may experience a burning sensation, followed by ulcers. When ulceration develops, treatment is mostly supportive until the cells regenerate themselves, which takes about 7 to 14 days (most commonly associated with a low white blood cell count). This can impact on oral comfort and nutrition, but adequate care can minimize these effects.
This will of course take longer to clear up with Jamie, as his counts will be down for a few weeks. The doctors have put him on Morphine, so he is sleeping for most of the day.
When he wakes up he is slightly spaced but happy, and sits up and plays on the laptop.
Our car was found on Tuesday, at Yate, 12 miles away. Luckily my car seat was still there, plus my glasses, sunglasses and disabled badge!!!!! Unfortunately the pushchair was gone, and the inside is a mess.
There was a wheel missing, plus damage to the door, ignition and glove box and visor broken. The garage said it would probably cost too much to repair, for the car’s value, so it looks like we will get a mobility car; we’ve been looking at the Focus C-Max.
A lot of the other oncology children have a virus called RSV, a bronchitis type thing, and Ward 34 is closed!! Jamie had visited a friend down there before he went into isolation, so he was tested for the virus, but luckily the tests came back negative. The blood cultures haven’t showed what’s causing the temperature yet, but doctors don’t seem too bothered, they say it’s expected when his counts drop, so we’ll take their word for it!!!!
Wednesday January 21st
Jamie has done well so far; he has taken his medicine like a star, and had his last dose of Busulphan on Saturday, then a dose of Melphalan on Sunday.
We found a way to get Jamie to take his meds without too much bother… to bribe him with money…. So far Jamie has filled a small pot, and has just got a bigger pot to put his pennies in!!!!! Jamie has started eating ice poles; he likes the green one best…
On Sunday Nana Teresa and Grandad Paul came to visit, and Jamie was allowed out for a few hours to Sam’s House (Our accommodation provided by CLIC), where he got to see baby Charlie, who has been staying with Nana Pat while Jamie’s in BMT, as Charlie isn’t allowed on the BMT Unit.
On Monday morning Dave went outside to discover that someone has stolen our car, from outside Sam’s House!!!!! It had the car seats, pushchair, my glasses, and hands free mobile thingy, and disabled badge inside!!!!!
Bristol Evening Post newspaper have run a story to try and shame whoever did it, and to see if anyone has spotted the car.
CAR STOLEN WHILE PARENTS VISIT SICK JAMIE IN HOSPITAL
11:00 - 21 January 2004
A Couple staying in Bristol while their three-year-old son receives cancer treatment have had their car stolen. The blue Ford Escort was stolen on Sunday night from Royal Fort Road, off St Michael's Hill, in the city.
It belongs to David and Kelly Rendall, from Devon, who is staying in Bristol while their son Jamie receives chemotherapy for Neuroblastoma.
Jamie has already had a large tumour removed from his stomach and kidney and now faces a bone marrow transplant.
His mum Kelly, aged 27, and said: "This is the last thing we need right now.
"Jamie is having really intensive chemotherapy.
"He's doing pretty well and is in high spirits. He doesn't understand what's happening.
"The thing that upsets me is that the car had a disabled badge in it, which has a photo of Jamie on it. I thought the thieves might have had a conscience - but obviously not."
The car, which contains a distinctive green corduroy American child's seat, may have now been abandoned.
Anyone who sees the Escort, with the registration number K877 PAB, is asked to contact Bridewell police station on 01275 818181 or Crimestoppers on 0800 555111.
So far we haven’t heard any more about the car!!!!
Today we were moved into isolation, and then Jamie was given his stem cell transplant, which looked just like a blood transfusion. He was given Pethedine, Calpol and an antihistamine before hand.
The transplant went well and Jamie has not had any ill effects yet, just tired. He smells of sweet corn, which is something to do with the stuff that is used to preserve the stem cells, which gets secreted out of Jamie. This will last at least 48 hours after transplant.
I will try and get some photos of Dave and I in our special isolation outfits!!! Green, nice!!!!!
Wednesday January 14th 2004
We are on day 2 in BMT (Bone Marrow Transplant Unit) Jamie had his first 2 doses of Busulphan (Chemo Drug) Today. He had to take them orally (By mouth) and did so well.
So far he hasn’t vomited, if he was going to, he would have by now, so that’s good!!!!!
On Friday last week, Coralee came to see us. We went up to CLIC House and had Peanut satay chicken for dinner.
On Saturday Charlotte brought Claudia (Her daughter) to visit Jamie in the ward. Nana Pat also brought cousin Harry.
After lunch Jamie was allowed off his TPN, so we went to Clifton Suspension Bridge and then Jamie and Harry played in the park, and got a bit muddy.
On Sunday Nana Teresa and Grandad Paul visited.
On Monday Jamie was discharged from Ward 34, so we went into town and had dinner at Pizza Hut, before going back to CLIC House. We visited Sam’s House, and dropped off some of our stuff to our new room.
Jamie asked to go to bed around 9pm, he was so tired. He slept in our bed with us, and in the morning drank 3 glasses of juice! Then we lazed in bed until 12, eating chocolates.
Tuesday afternoon, Jamie was admitted to BMT, where he has settled in well. The nurses all seem very nice.
Thursday 1st January
HAPPY NEW YEAR!!!!!!!
We spent a quiet new years eve in the ward, just Jamie, Dave and myself.
Charlie has come down with a viral infection, so Nana Pat has kindly taken him to Teignmouth for a few days, till his rash goes away.
I am missing him like mad, can’t wait to get him back.
Jamie was allowed to stay with us at CLIC House on Tuesday night. He slept in the bed with Dave and I, and thought it was a real treat. It’s a good incentive to get him to eat, if he thinks he can do this more often.
Jamie’s eating is greatly improving day by day. He is asking for food quite a lot, and eating small amounts. We are not pushing him, or we fear he will stop eating again.
We suspect that this is the result of the steroid ant sickness drugs that he has been on, and will be sad if the effect wears off, as I don’t think he will be on them for much longer.
Yesterday was Jamie’s MIBG scan, which shows up the areas of cancer in Jamie’s body. The day before the scan, Jamie has a radioactive isotope liquid injected through his central line, which sticks to the cancer cells in his body. Then the MIBG scanner shows the cancer cells. Each area that is scanned takes 20 minutes. Jamie must not move an inch during this time.
Monday Dec 29th
Sorry for lack of updates, it’s been a tricky few days!!!!
On Saturday Dave spoke to one of the doctors, about Jamie’s strange head movements and vomiting. The doctor was concerned that there was a possibility that Jamie had symptoms of a Brain Tumour.
We’ve had a very worrying weekend, until Jamie’s CT Scan today at 3pm, which came all clear!!!! Thank God!!!
Jamie was put on a steroid ant sickness as a precaution, with mind of the suspected brain tumour, and it has given him a slight appetite!! Today and yesterday he requested food! When the food was presented to him he didn’t eat more than a mouthful yesterday, but today ate quite a lot!!! Then vomited and requested more!!! GO JAMIE!!!!!!!
Christmas was OK…. Jamie wasn’t quite better for Christmas Day. Nana Teresa and Grandad Paul came up. He opened a few presents then went to sleep for a good 6 hours. Then he woke up and finished off his presents, and asked for more!!!!!
His friend Jack came in on Christmas day, which seemed to cheer him up.
On Boxing Day he was a little brighter, and was allowed to CLIC House for a couple of hours to see his Nana Pat and Grandad Jeff. He fell asleep for most of the time, and was grumpy when he woke up!
Over the weekend Jamie’s vomiting has been less often, and his mood has been slightly better. We found a pattern to his behaviour… he is grumpy until he vomits, and then is happy!!!
Cousin Josh and Auntie Jo popped in today on their way home from Wales. Jamie perked up as soon as he saw Josh and they were running about shooting nurses with their guns!!!!
Tuesday 23rd December
Sorry I haven’t updated, it’s been hectic with Christmas coming!!!!!!
On Saturday Nana Pat came up and we went into town to get presents for the CLIC Party.
On Sunday Nana Teresa and Grandad Paul came up.
Yesterday Jamie wasn’t himself in the morning, and nurses suspected he was coming down with something. Then sure enough, around lunchtime his temperature went up and he started to complain of tummy ache.
Some blood was taken for cultures, and Jamie was started on a course of Antibiotics, and Calpol, for the pain and fever.
Jamie slept on and off for the rest of the day, only waking to cry, he curled into a ball in pain.
By 11pm Jamie was started on Morphine, and spent the night vomiting. Dave stayed with him in hospital.
This morning his Morphine was increased, so he slept a lot.
Nana Pat, Grandad Jeff, Auntie Kim and Cousin Harry arrived around 10.30. Jamie sat up in bed briefly before going back to sleep.
Cousin Harry played with Grandad Jeff and another child on the ward while Nana Pat, Auntie Kim and I went out to buy more stuff for the CLIC Party on Boxing Day.
Loads of stores have donated vouchers, money, and goods so that the CLIC House families can have a nice Christmas. Nana Pat will be cooking on Boxing Day and it’s my job to wrap all the presents!!!!
We would like to say a big THANK YOU to: Sainsburys, Asda, Tesco, Gadget Shop, The Entertainer, Wilkinsons, Stokes, Dewhurst, Trago Mills, Thorntons, House of Marbles, and Body Shop for their kind donations.
When we got back from shopping, Jamie was still asleep, and waking in pain, so his Morphine was increased some more.
The doctors say that Jamie has an infection in his stomach, and this is normal when his blood count is so low, after the chemotherapy. Hopefully it should pass, but I doubt he’ll be well on Christmas Day. We will save all his presents until he is well enough to appreciate them.
This evening Dave reported that Jamie sat up and seemed happy for a while. His temperature went down for about 1/2 an hour and he played on the laptop before returning to sleep.
Friday 19th December
We had the results of Jamie’s acidity test today, not as bad a we’d suspected. Jamie has mild reflux, and has been put on a higher dose of Ranitidine, plus a drug called Maxilon, which should help.
The surgeon said that Jamie is still ok to have the Gastrostomy, but the oncologist thinks that Jamie would be at higher risk of infection while in BMT having high dose treatment.
They will review the situation at the start of January, but don’t want to do it until the end of the next phase. Jamie will be weighed twice a week, and hopefully we can get him to eat before then.
After Jamie finished his TPN we went into town and Jamie went to see Father Christmas, at the Galleries. I think this is the first time Jamie has met Father Christmas.
We had a 1 1/2 to spare before Jamie was due to go back on TPN, so we went to CLIC House for a while before returning to hospital.
Tomorrow Nana Pat is coming up, with Grandad Jeff.
Wednesday 17th December
Jamie has been vomiting a lot this week, due to his chemo, which finished yesterday, and he still isn’t on his Ranitidine.
Yesterday Jamie had music therapy in the playroom with Little Dave, and Katie, he had a go on the guitar, once we could persuade him to put his keyboard to one side. He kept pressing the demo button and everyone was getting fed up of Jingle Bells!!!! I think he really enjoyed it.
Today the doctor came to do Jamie’s acidity test. The doctor said she suspects that Jamie has oesophageal reflux caused by the surgery. This test needs to be done before Jamie has his Gastrostomy tube inserted.
Jamie was sedated with Midazolam, which was a bit of a fuss, as he had to swallow it, we suspected he would vomit it straight back up, but he didn’t. The nurse helped by giving lots of praise.
When the sedative had taken effect the nasal probe was inserted. Jamie screamed, and had to be held down, despite being sedated. The nasal probe is like a wire, which is connected to a monitor, that Jamie carries in a rucksack. This must be kept in to collect 24 hours of data from Jamie’s stomach.
After Jamie returned from an X-Ray to check that the probe was in place he seemed drunk, and was very silly and chilled out!!! Typical for the sedative to kick in late!!!!!
For the rest of the afternoon, Jamie has been unhappy, crying about the nasal probe, he doesn’t like it one bit. Dave is staying with him tonight to try and stop him from pulling it out!
Charlie had his non-live Polio vaccine yesterday, and has had a high temperature since last night. Plus he is teething, so his nose is running and he is dribbling for Britain. He has been very miserable today, so I took him home early.
We have been given new dates for going up to BMT. This is because Jamie’s counts are taking longer than expected to come back up after chemo. Instead of going up on 5th January, we will go up on 13th January, and he will start high dose chemo straight away, and then have stem cell rescue on 22nd January.
Between then and now we have to wait while Jamie’s counts drop, then rise, and the doctors will be arranging more tests to see how well the chemo has worked.
Sunday 14th December
Charlie has been unwell since his immunisations, he has had a high temperature and has slept a lot.
He is ok now though.
Jamie started chemo on Friday, this is the last round before we go to Bone Marrow Transplant unit, where Jamie will have Mega high dose chemotherapy, then stem cell rescue, which is giving him back his bone marrow juice that was collected in November. This is because the mega chemo is so strong it destroys Jamie's bone marrow. That is why we will be in the Bone Marrow Unit, in isolation, because Jamie will be unable to fight even the smallest infections. We have to wear special theatre pyjamas, which are green!!! And Charlie will not be allowed in. Jamie is only allowed 2 people in his room with him at a time, and is allowed 4 permitted visitors, which will be grandparents.
Jamie's indigestion medication was stopped yesterday, so the acidity test this week will get a true result of the acidity level in Jamie's stomach. Also the chemo that he is on this time is a higher dose that he had at Exeter, so the combination of this and no indigestion medication is causing Jamie to vomit loads.
The doctors have said not to put pressure on Jamie to eat or drink, as he is on TPN, he is getting all the goodness he needs. After chemo has finished this week, and the acidity test, we can try to get back on track.
After this last round of chemo Jamie will have more tests to see if the chemo has worked in reducing the Neuroblastoma around Jamie's knees…. Fingers crossed!!! I will try and get some photos of Jamie having the various tests, so you can see what he goes through, and how well he copes with them.
Today Grandad Paul and Nana Teresa brought my cousin Patrick to visit Jamie. We went up to CLIC, where Jamie and Patrick watched "Finding Nemo", played Battleships (Sort of!) and played computer games, before Jamie had to return to the hospital for a blood transfusion.
I HOPE YOU ARE ALL GIVING BLOOD WHEN YOU CAN!!!!!!!
I will be giving blood and Platelets, and joining the Bone marrow Donor list as soon as Charlie is 9 months old, as I am not allowed before then.
Chudleigh Constitutional Club is holding a prize draw, and all proceeds are being donated to Jamie.
THANK YOU CHUDDERS PEOPS!!!!!!
Here are lots you can do to help… If you have a shop you can sell CLIC Teddy Bears, just let me know and I'll arrange for some to be sent to you. Nana Pat is Head of Torbay Branch of CLIC, and is doing lots to help this great Charity that has done so much for us. Keep up the good work Nana Pat!!
Friday 5th December
I seem to have come down with a viral illness, sickness and diarrhoea type thing, but with no sickness, and very little diarrhoea… my good constitution!!! So I am not allowed onto the ward until 48 hours after the diarrhoea stops… Monday lunchtime.
The psychologist came to see Jamie today, she is happy that Jamie has a good understanding of what is happening to him, and was impressed by his intelligence for his age!
Jamie asked for toast today, and ate it!!!! We will be trying the no pressure approach, and the doctors will see if they can reduce his TPN more.
Thursday 4th December
This week has gone very fast! I keep thinking it’s Wednesday!
Yesterday Jamie played with Jack, in the next-door bed. They played with the pirate ships and island. Both Jack and Jamie have their own pirate ships.
Today Jamie did feet painting with Dave from Plymouth and Sam, the play lady.
He didn’t eat very well today. The dietician says Jamie should be having 1500 calories per day, and Jamie is barely getting 300 calories. It is almost certain that Jamie will have the Gastrostomy when the surgeon comes back in a few days. He will also have his last round of extra chemotherapy next week. So fingers crossed, we should be home for Christmas!!!
Our doctor came to speak to us today. Jamie’s bone marrow was 100% cancer free!!! She said she’s sure she’s told us this before, but I can’t remember!!!
Today we found out that there is another Neuroblastoma Warrior on our ward. This is the first time we have physically met anyone else with the condition.
The psychologist is coming to speak to Jamie tomorrow, about eating and taking his medications. I wonder if this will work!!!!
Monday 1st December 2003
Jamie’s oncologist is back today, so things should get moving. We are starting to reduce Jamie’s TPN feeding gradually; this can’t be stopped straight away, as it will make Jamie unwell.
Today Jamie weighs 15.1kg!!!!! That’s 0.6kg heavier than last week!! Jamie was 13.8kg at diagnosis!!!!
Jamie had a break from TPN from 12 noon till 6pm. We didn’t go to CLIC house, as Jamie was enjoying playing with his friend Dave from Plymouth, who came down from BMT last night. They played XBox and on the laptop.
Jamie has an eye infection, swabs were taken this morning, and he is starting eye drops tomorrow, more battles!!!!
Jamie was very tired this evening and was asleep before 7pm!!!!!
Sunday November 30th
On Friday Dave and I picked up baby Charlie from Nana Pat, who has had to put up with 2 weeks of him teething and poorly with gastroenteritis… Thanks Nana!!!
Jamie behaved himself while we were gone, thank god!!!
Saturday wasn’t much different from any other day, TPN, CLIC House, then back to the hospital!!!!! We lead an exciting life!!!
Today the Freeman Grandparents came up to visit, we all went up to CLIC for dinner and played games on the laptop and Playstation 2.
Jamie did very well with his eating today!!! For breakfast ate some Co-Co Pops, then for lunch he had turkey, potatoes and veg with gravy. When we were at CLIC he asked for more vegetables and gravy, which he also ate most of!!!!!
Tomorrow we hope our oncologist and surgeon are back from vacation, so we can get moving with Jamie’s progress… we suspect that the other doctors don’t want to make any decisions without them, so we are in Limbo!!!!
The doctor suspects that Jamie has an eye infection, and may need eye drops… great!!!!!
This evening Jamie took his medicines then promptly vomited them back up on purpose, so Dave made him take them again!!! We shall see if Jamie try's to pull this stunt again!
Thursday 27th November
Today started well, I popped into town and bought peppermint flavoured Gaviscon for Jamie, and after he had struggled to eat 1/2 slice of toast, he took his Ranitidine. He was very reluctant to take his Gaviscon, but after tears, bribes and threats, he agreed to taste a bit, and liked it, so he took it (the whole 5ml!!)
Jamie was so proud he had to tell the doctor of his achievement!!!!
We then went into the playroom, and did spinney painting (dropping paint onto a spinning piece of paper, on a wheel), and played Mario on the console.
At lunch time Jamie decided he didn’t like cottage pie, which he usually does, and ended up eating just 4 teaspoons of baked beans… remember he hasn’t eaten much since November 3rd, so his stomach must have shrunk.
Then he refused to take his Gaviscon, and got so worked up he made himself vomit his lunch up!!!
Pleased with his accomplishment he rolled over and went to sleep for 2 hours!!!
I then took a look at Jamie’s chart at the end of his bed and discovered that his HGB level had dropped to 7.8 on Tuesday… Jamie should have a blood transfusion if it goes below 8! !!!!! The blood was ordered and Jamie is due to have a transfusion tomorrow!
Jamie was released from his TPN at 2pm, but his temperature was 37.7, so we I was advised not to take him out just in case.
At 6.30 Jamie’s temperature went down slightly, to 37.3, so the nurse said it was ok to take Jamie to CLIC House (She said I am sensible enough to keep an eye on him and bring him back if his temperature goes up)
Sadly Jamie’s little friend Dave has gone home, so he had no one to play with at CLIC. Luckily Daddy had set up the laptop and Jamie’s new PS2, so Jamie wasn’t too bothered.
Grandad Paul came to stay with Jamie tonight, so Dave and I could go home to pick up Charlie… the last report at 11.30pm, was that Jamie was still awake, but behaving!!! I hate to imagine what he would be like with a normal blood count!!!!!
Wednesday 26th November
When I arrived this morning, at 8.30, Jamie was awake, sitting up in bed, with a bowl of Co-Co-Pops in front of him!!!! I’m not sure if he’d eaten any, but he asked for Marmite on toast instead, when he saw me.
The nurse said that Jamie had taken one his reflux medicines for her just before I had arrived!!!
Jamie ate 1/2 of his toast, then after a lot of fuss, took his Gaviscon (Well most of it!!)
The doctor came round and spoke to Jamie about having a nasal gastric tube again if he doesn’t try and eat, and Jamie seemed to understand. The funny thing is, every time he sees this particular doctor he asks him, “Dr, would you like to see my bum?” This is because the doctor saw him when he had a boil on his bum!!!
I voiced my concerns about the anti-sickness not being given on time and the length of time it took to prescribe the reflux medication, the doctor said he’d look into it!! Yeah right!
It was oncology play session in the main hospital play centre, when only oncology children are allowed in. Each ward has it’s own playroom, then the hospital has a bigger room for the whole hospital and siblings. Jamie stayed there for 2 hours while I went into town to get nappies, and a Happy Meal for Jamie’s lunch.
Jamie insisted on eating his chips lying down, then choked and started trying to vomit. This is when I realised that he is doing it deliberately, and managed to persuade Jamie to stop.
At 2.30 Jamie was released from his TPN drip to go out of the hospital for a few hours. He wanted me to walk him up the hill to CLIC House, which I refused, as I didn’t want to walk back down in the dark later, so as Jamie wasn’t neutrophenic we walked into town, into Wilkos, where Jamie chose a machine gun toy, and was firing it at everyone and everything on the way back up to the car!!!!
At CLIC Jamie played with little Dave, as well as making “Bob the Builder” cakes from a mix.
Little Dave may be going home tomorrow, so Jamie and Little Dave had a hug before Jamie had to return to hospital. At CLIC Jamie ate a cake, plus 2 slices of Garlic Bread.
When we got back to the hospital Jamie had a bath before he was put back onto TPN.
Jamie took his Ranitidine reflux medication, and then refused to take the Gaviscon!! It tastes of aniseed, which I think is the problem. I will go out and buy peppermint flavour tomorrow.
Grandad Paul is coming up to stay with Jamie tomorrow night, so Dave and I can go pick baby Charlie up. He’s been staying with Nana Pat for 2 weeks. We didn’t plan to leave him so long, but he came down with gastroenteritis, so had to stay longer.
Tuesday November 25th
On Sunday my parents came up to visit, nana Teresa and Grandad Paul. We spent most of the day at CLIC house, Jamie didn’t eat much, maybe a packet of crisps.
On yesterday things started going pear shaped… The surgeon came round and said he was thinking of putting a permanent tube into Jamie’s stomach, called a Gastrostomy, for feeding, and said he would prescribe some medication for Jamie’s reflux. (He seems like he’s trying not to be sick all the time, the surgeon says its reflux!)
Jamie had yoghurt for breakfast, and vomited it back up even before he’d eaten 1/2.
He was then scared to eat anything and just wanted to lie in bed.
Around 1pm Jamie was taken off his TPN drip for a break and we had to move out of the private cubicle into the bay, after his blood cultures showed he didn’t have diarrhoea infection (Like I’d said all along!!!) So we moved back to the bay, to our original bed space 9, next to our mate Travis, who we met when we first came to Bristol, (Travis is 2).
Dave phoned to say he has a chesty cough and can’t come to the hospital, so I went into town and got him some cough medicine and took it up to him. Jamie went to the playroom and did some painting with the play lady while I went.
On return I chased up Jamie’s new reflux medication, which had not yet been prescribed, the doctor said he’d chase it up, and then went home!!!! He did manage to let me know that the surgeon is giving Jamie 7—10 days to start eating properly before he puts the Gastrostomy in.
Later I asked another doctor about Jamie’s reflux medication, and it still wasn’t prescribed!!!
Jamie then ate a packet of Quavers, which he then vomited back up!!!!
Today Jamie vomited his morning medication up, so I asked again about his reflux medication, saying that it is hindering his process.. It was then prescribed but not actually written on his chart, so the nurses still couldn’t give it!!!!
For lunch Jamie managed 3 chips and 1/2 a chicken nugget, which stayed down!!!!!
After we both had a nap we went up to CLIC house to see daddy and we watched “Finding Nemo”.
We arrived back to the hospital at 7.30 to find they had actually written his drugs on his chart!!! Whoopee!!!!! He’s been prescribed Ranitidine and Gaviscon. We also discovered he hadn’t been given his anti-sickness at 4pm!!!!!
Jamie had his anti-sickness then an hour later had his reflux meds, which came straight, back up!!!
The doctors are threatening to put the tube back in his nose, which we do not want… I can’t help thinking that the doctors and nurses aren’t really helping matters, if Jamie had his reflux meds earlier maybe he would have started eating without vomiting by now!!!!! And if nurses gave him his ant sickness
On time, he wouldn’t be sick!!!
I will be having words with the ward manager tomorrow and then speaking to our oncologist when she returns from her vacation.
Saturday November 22nd
Happy Birthday Grandad Paul… 50 Today!!!!!!
Today was much better… the doctor said to let Jamie try to eat some food today, instead of putting his nasal gastric tube back in.
For lunch Jamie had 1/2 a cheeseburger and chips from MacDonald's, then this evening ate 1/2 tin of Scooby Doo pasta and sausages, and a bit of KitKat.
I will try him with a vegetable bake tomorrow.
Fingers crossed he kept it all down!!!!!!!
Jamie was much happier today.. It helped not having the tube put back in!!! He had some more chemo; Doxorubicin, Vincristine and Cyclophosphamide.
In the afternoon he was allowed out to CLIC House, where he played with Little Dave, and Little Dave’s Dragon Mega Blocks set, for a while, then played with another little boy (Who was too shy to tell us his name) in the playroom on the Brio train set.
Jamie was asleep around 7.30 tonight, back at the hospital.
Friday 21st November
Wednesday wasn’t much different from Tuesday.
On Thursday Coralee came up to visit, we spent most of the day Christmas shopping before Jamie was allowed back to CLIC House for 5 hours, where he slept for most of it!!!!!!
His chemo is starting to kick in now, and he gets tired easily
Charlie has come down with gastroenteritis, so he will have to stay with Nana Pat until it has cleared up! Poor old Nana is having a hard time, with Charlie teething, up all night crying!! Thanks Nana
Today was awful!!! It was my turn to go down to the hospital first thing (We leave Jamie at night when he is well, and the nurses will phone if he wakes and gets distresses, which he never has done yet)
The alarm clock didn’t go off at 7.30, so at 8.30, when Dave woke me to tell me of this, I rushed down to the hospital, where Jamie was still asleep. The nurse was about to start a new chemo drug, called Doxorubicin, which looks like Tizer, and changes the colour of his wee!!!
He also had TPN running and nasal gastric feed.
After the nurse had started chemo we were told we had to move to a private cubicle, as Jamie has diarrhoea! Jamie has had diarrhoea since his surgery, and we don’t believe this to be an infection, as he is on a pure liquid diet!!! I spoke to the doctor about this, who agreed with me that Jamie is not ill, and no need to move him, but the move was already in process, and the boy in the cubicle that Jamie was to be moved to was already being wheeled out, so we got a private room, but not barrier nursing.
Then Jamie decided he wanted to poo for Britain, and had 3 poos, on a bedpan, in a row. During the 3rd poo, Jamie puked all down himself, and also puked his nasal gastric tube out!
I was stuck, holding Jamie so he didn’t fall off his bedpan, I couldn’t reach a sick bowl, or nurse buzzer, so I had to yell for assistance, the smell was so bad, of pukey vanilla flavoured nasal gastric food!!!!
Jamie felt very sorry for himself after this and had to be cuddled for nearly an hour.
When daddy arrived with the laptop Jamie perked up for a while, and played happily for a few hours on battlefield, so Dave and I went into town for a bite to eat.
Around 6.30 Jamie was released from his drips for long enough to have a bath, which he was reluctant about at first, but soon got into the spirit of things, with his new apple body paint.
His mood was soon dashed when the nurse came in with a new nasal gastric tube to shove up his nose.
The first attempt failed, and I’ve never heard Jamie scream so loud in all my life! It was awful… then after some coaching from daddy and I, we managed to get Jamie to swallow on a sponge soaked with orange juice while the nurse pushed the tube up his nose. This worked and the tube went down to his stomach.
Jamie finally settled to sleep just before the nurse came to supervise me hooking Jamie up to his nasal gastric feed (a procedure we must learn to do, so we can take him home to feed him nightly) I managed to get it going, then Jamie started pulling at his nasal tube, semi asleep, and after a little struggle with daddy, trying to stop him, he pulled his tube out again!!!!!
By this time, Jamie was hysterical, crying and coughing and gagging… Dave had to leave, as it was too much for him, so I tried to calm Jamie enough to put a new tube in but he was so upset I told the nurse he’s not to go through it anymore, they will have to sedate him tomorrow to try again.
After I calmed him down he finally fell asleep, bless….
Tuesday November 18th
Happy Birthday Grandad Jeff!!!!
After yesterdays yoghurt eating being unsuccessful, the surgeons have said that Jamie must only have fluids (Not fizzy) for now, and the TPN will be slowly reduced throughout this week, and then Jamie will be fed through his nasal gastric tube, with special nutrition liquids.
Jamie started the day doing educational stuff in the playroom, in his pyjamas, as he refused to let daddy wash and dress him!!! They practiced writing, and made a rocket and satellite!
At 4.30 Jamie had finished his days chemo; Cyclophosphamide and Vincristine, so the nurses released him from his TPN until 6.30, so we went to CLIC House.
At CLIC House Jamie played on the Playstation 2 with big Dave, little Dave and Billy (Little Dave’s brother) then played running around and shooting with little Dave.
Jamie’s walking has improved today; he is less wobbly on his feet.
Monday November 17th
Nana Pat and I took Charlie car booting on Sunday morning, he wasn’t too impressed, but we bought some real bargains; a Teletubby scooter for £3, a lap tray for 60p, a baby walker for £3, a sunblind for the car for 20p (which I lost), plus loads of videos.
Nana Teresa and Grandad Paul arrived at midday and Jamie was allowed off his TPN (Total Parental Nutrition) for 3 hours, so we all went up to CLIC House.
Jamie spent most of his time on the laptop at CLIC House, but hey, at least he got a change of atmosphere!!!
Before we went back to hospital Grandad Jeff came to take Nana Pat and Charlie back to Teignmouth for the week, to give Dave and I a break while Charlie is teething, plus we hope to be going to daybeds next week from CLIC House, so Charlie will be happier and more settled with his Nana.
Jamie was asleep by 7pm, and slept till 9am this morning!
The surgeons came round today and said to aspirate Jamie’s nasal gastric tube every 3 hours, and let him start eating, so Jamie had 3 teaspoons of fruit corner yoghurt, as he is only allowed mush to start with.
2 hours later Daddy aspirated the yoghurt back through the nasal gastric tube, so that means his stomach isn’t processing it correctly yet.
The doctors came round and said that Jamie will stay in hospital while he is on TPN, this will be until his digestive system is working, and he will start chemotherapy tomorrow; Vincristine, Cyclophosphamide, and Doxorubicin.
Today Jamie did some gluing in the playroom and then played on the laptop with David from Plymouth, before being allowed to CLIC House for a couple of hours.
Jamie had 1/2 a fromage frais, which also came back up his nasal gastric tube!!!!
Tonight Jamie was asleep before 7pm!!!!
Saturday 15th November
Well, I’d say Jamie is back to his old self today, much happier, and playing with children on the ward.
Oh by the way, we were moved back down to our original ward, 34 on Thursday, where Jamie seems much happier around people he knows. He was so pleased to have a bed next to his friend David from Plymouth.
Yesterday we saw Jamie start to be his old self; he and Dave were being silly, taking funny face pictures with the digital camera…. Here are the results
Today Jamie and I did some educational stuff in the morning, then Daddy brought the laptop in and he played battlefield with Dominic and George (David’s brother) for the rest of the day.
Jamie still has the nasal gastric tube up his nose to drain his stomach, but he started to poo again yesterday, which is a good sign that the digestive system is picking up, and he is getting less out of his nose tube also.
We hope he can start eating on soon.
On Monday we will hopefully be starting Jamie’s extra chemotherapy, planned as an outpatient, which means Jamie will be allowed to be discharged to CLIC House. Then after 5 days of chemo we hope to return to Devon and have the next chemo at Exeter hospital, then back to Bristol in January for scans, and to plan the rest of Jamie’s protocol.
Jamie will still receive High Dose Chemo and stem cell rescue in BMT as planned, but not as part of the clinical trial, and the drugs may be different. This is just a minor setback, and we are confident that Jamie is over the worst and on the road to a full recovery!!!!!!
Sadly my cat Daisy died last Monday, she had small kidneys! She was skinny and in pain so the vet put her to sleep! I broke it to Jamie today and he said, “Well Nana can get another one” and I replied, “I don’t think she will” so Jamie said, “She can buy Pepsi, he wont die!”…. Pepsi is a neighbour’s cat!!!!!!!!
Wednesday 12th November
Jamie is 90% now, although he still has the nasal gastric tube draining his stomach, and is still being sick in the evenings. He seems happier in himself, and has been more active, and smiling, but is tiring early, and crying at the slightest thing.
I gave Jamie a strawberry lip balm last night, and he was so chuffed, then the nurse gave him a blackcherry flavour, so he was sat with one in each hand and thought he was in heaven!!!! He is still Nil By Mouth.
Our Oncologist came to see me today, to let us know that Jamie doesn’t fit the guidelines to continue the clinical trial, as he has too many remaining spots of Neuroblastoma around his body, from the MIBG scan, even though it is 50% reduced, and he is doing good progress.
This just means he won’t be a guinea pig, but will receive same standard of treatment.
Monday November 10th
Jamie is doing much better.
Over Saturday and Sunday he was feeling very sorry for himself, and was crying a lot, between sleeping, as he was in pain, and feeling bloated with air in his stomach.
This is being drawn out with a syringe through his nasal gastric tube every 2 hours.
On Saturday around 6am Jamie’s epidural was switched off, and his heart rate went up, his temperature was 38.5C and his oxygen saturation was falling, so suspecting something had split inside, like his bowel, he was sent for X-ray on chest and abdomen, which turned out ok. The doctor put it down to pain and arranged for the “Pain Doctor” to come and arrange pain care.
The Pain doc finally arrived at 3pm, and asked for his epidural to be removed and also the cannula from his had, and to give Jamie oral morphine, via his nasal gastric tube.
At 5pm, I asked the nurse if she was ever going to do this for Jamie, and she did!!!!!!
Jamie was slightly more comfortable after this.
Jamie's stomach is draining out through his nasal gastric tube, into a “bile bag”. After he was moved for his epidural to be taken out the bile bag inflated, and when the nurse deflated it she said it smelled of orange Calpol that he’d had earlier!!!!! (Fart in a bag!!!!!)
On Sunday morning Jamie did a poo!!!!! This means his bowels and digestive system have started to work, and he will be able to eat as soon as his stomach stops kicking out green stuff through his nasal gastric tube. Then as they were changing Jamie’s bed, he was sat on Dave’s lap and pooed again, all over Dave!!!!!! This would have been bad, except we were all cheering when we heard the great news!!! Poor Dave!!!
Nana Teresa and Grandad Paul came to visit on Sunday, and he looked happier, especially as the nurses took his catheter out.
I stayed with Jamie last night, and he was unhappy and crying, so I fetched a doctor, who prescribed Pethedine, to lower Jamie’s high temperature and make him more comfortable.
Jamie was knocked out by the Pethedine and slept well, and woke today much happier… nearly his normal self.
He smiled and laughed a little today, and played Dave up this afternoon, by being indecisive!!!!!
Friday 7th November
Jamie's surgery was a complete success. The surgeon removed the entire tumour, plus the left kidney as planned. The left adrenal gland was totally encased in tumour, and couldn't be found!!!!
His blood pressure has returned to normal now his bad kidney has gone, and he spent 24 hours in ICU, to make sure that the right kidney was functioning ok, then moved him to the surgical ward.
Jamie has slept mostly, and been awake for the odd minute, but today was awake more, and once he had his cannula removed from one hand, played on the Playstation!!!!!
He is Nil By Mouth, and has a tube up his nose, to drain his stomach, as his digestive system has taken quite a knock, we don't know IF or WHEN that will ever recover. Jamie is being fed through his central line.
I have put some photo's of Jamie yesterday in ICU, but he looks brighter today, and has been smiling and made a joke… he said to Nana Pat "I'm gonna kick your big bum!!" when she was bending over to pick something up!!!!
He also pulled his nasal tube out last night, but after nurse put it back he said he wouldn't do it again, as he didn't like them putting it back in!!!!!
I am staying with him tonight, and will work on the website while I am there, so when I update it next I will put new pictures of him looking brighter today.
Wednesday 5th November
Dave was woken at 7.30 at the hospital by the fire alarm!!! These were still going off at 8.30 when I arrived, until 9am!!!! Jamie slept through it!!!!
He was a bit brighter today, but annoyed as he wasn’t allowed to eat after 6.30am, and no-one woke him up to have breakfast before this!!!!
Dave spent the evening at the hospital cleaning the parent’s kitchen, which was filthy again by this morning, and stinks of mould… apparently the cleaners refuse to clean it, as they believe the parents should!!! Oh excuse me while I go get my hoover and rubber gloves from the car and clean the parent’s kitchen, while we pay our taxes for the cleaners to do it!!! Dave also fixed the PC in the playroom!!!!
Jamie was on the PC first thing today, and then went on the PS2, before we took him into town for a bit of fresh air, and to take his mind of Nil By Mouth while everyone was eating their lunch on the ward. We went to “The Works” where Jamie chose some cars and stickers, then returned to the ward.
Jamie went down to theatre at 1pm, and was a bit upset when he went to sleep, as they used his cannula, drip in his hand, and it was a bit sore.
We have come back to CLIC house to return around 5.30pm to the hospital, to meet Jamie in ICU. I am smoking like a train, and can’t stop cleaning and tidying!!!!
I shall stay overnight with Jamie in ICU, if they don’t kick me out, and Dave will return later to CLIC, where Nana Pat is staying for a few days to help with Charlie.
Dave and Pat will notify direct family of Jamie’s progress, and I will update the site if I come back tomorrow, so, please don’t everyone phone, assume no news is good news.. If something bad happens I promise I will let everyone know
XXXXXXXXXXXXXXXXXXXXX
Tuesday 4th November 2003
Jamie had a good weekend. Coralee came to visit us at CLIC house on Saturday. Coralee and I went to Ikea and then we had Burger King for dinner, before I dropped Coralee back to her car at Gordano service station.
Jamie has really enjoyed being at CLIC house this time. He is always eager to go downstairs in the morning and play with his new mate, “Little Dave”, whose brother is in Bone Marrow Transplant. Jamie and Little Dave play really well for hours, and have the same interests, even though Little Dave is 4.
On Sunday Grandad Paul came to visit on his own, as Nana Teresa had a cough. He and Jamie played “Burnout 2” on the Playstation 2. Jamie hasn’t got his own Playstation 2 yet, but we have some games. We’ve borrowed Matt and Emma’s Playstation, but they go home next week, so we will have to see about getting our own!!!
Yesterday we went to Bristol Airport to watch the airplanes take off and land, as Jamie’s blood count is well up:
HGB = 10.3
Platelets = 348
NEUT = 2.41
Then Jamie stayed up till 9.30 playing with Little Dave.
Jamie had to wake up at 7am this morning, to eat breakfast before 7.30am, as he was due for his stem cell harvest by bone marrow aspirate today at 1.30pm.
We arrived at the hospital at 11am, and Jamie had fallen asleep in the car by then!!!
Dr Spicer, the surgeon, who will be doing Jamie’s surgery tomorrow, came up with the consent forms to sign… Jamie may have digestive problems after tomorrow, which means he will have to be fed through a tube in his stomach. This may be permanent damage, only time will tell. There is a 5% chance of mortality with this surgery, also risk of his right kidney failing, which means the left one, which works at 12% will have to stay instead of being removed. I don’t know what will happen if this occurs. Jamie will spend at least one night in ICU before returning to Ward 31.
Jamie came back from his aspirate and wanted to eat his Haribo sweets straight away, despite the nurse’s warnings that he would vomit or choke. He did neither, thank god!!!!! He then ate marmite on toast, crisps, and a yoghurt before going back to sleep!!!!
Fingers crossed for tomorrow please, between 1 and 6pm
Saturday 1st November
We had a Halloween party at CLIC house last night.
Jamie has been having a lovely time at CLIC House, with all his new friends. He is dying to get downstairs in the morning, and has made friends with a 4 year old boy called Dave, who's brother is in BMT (Bone Marrow Transplant)
His blood count would have dropped, so we've been keeping him in. Grandad Paul is coming up tomorrow, on his own, as Nana Teresa can't come because she has a cough. We might go out somewhere quiet, maybe to watch the airplanes taking off, near the airport. It wouldn't be a good idea to take Jamie inside the airport, and risk him catching something from people coming back from abroad!!!
We hope to have a quiet few days and let Jamie have some fun before he goes to have his bone marrow aspirate for stem cell collection on Tuesday and then Surgery on Wednesday.
Thursday 30th October
Jamie’s CD34 count didn’t rise enough so the doctors have decided to harvest stem cells through a bone marrow aspirate on Tuesday. This will be done on Day Beds, it takes slightly longer than a normal bone marrow aspirate, and Jamie should be back to CLIC House early evening.
Jamie was discharged yesterday, to CLIC House, where we were given a bigger bedroom, 2 floors up. This was knackering carrying all our stuff up 4 flights of stairs!!!
So Jamie is at CLIC House with us until he goes for surgery next Wednesday…. We hope to visit Bristol Airport, or the train station, before his counts drop.
Tomorrow we are having a Halloween Party here at CLIC House. There are about 4 or 5 other families here, so it will be nice.
Saturday evening we might go to the Fireworks Fiesta on the Downs, providing Jamie’s counts are good!!!!!
Monday 27th October
Jamie finally got his ultrasound on Friday morning, after even more cock-ups!!!
He has been on GCSF, to stimulate his bone marrow stem cells for stem cell harvest next week, and his blood count has gone up very well!!! I have added a Blood Count page, so you can track Jamie’s blood counts.
Doctor said Jamie’s surgery to install Lumen line in neck (for collection of stem cells) will be Sunday instead of Monday, so I rearranged Nana and Grandad Chudleigh to come and see us on Saturday instead.
So Nana and Grandad Chudleigh (Paul and Teresa) came up on Saturday, and Jamie spent the day playing with Grandad while Nana and I went into Bristol to buy Jamie a decent warm coat and woolly hat. We bought him a navy puffa from Gap and a navy hat with a dinosaur on from Next. I also bought a new jacket (Pink of course!!!)
Sunday arrived and the anaesthetist came and gave Jamie his pre-med, then the doctors came round and said he wasn’t having surgery today, as his CD34 count (Something to do with blood) wasn’t high enough, so Jamie will have surgery Monday.
Today his CD34 count still wasn’t high enough and they were thinking of scrapping the stem cell harvest and doing a bone marrow harvest. We are trying GCSF for one more night and if the CD34 isn’t high enough tomorrow we will do bone marrow harvest after surgery to remove tumour.
Dr Spicer, our surgeon came in to explain the tumour surgery today. The tumour has shrunk 50% and he thinks he will be able to remove it all through stomach, and shouldn’t have to open Jamie’s chest. His left kidney may be removed, as it is more trouble than it’s worth. Dr Spicer will unwrap tumour from vessels supplying the right kidney first and if the right one is ok, he will remove the left kidney. The tumour is wrapped around the Aorta and Vena Cava (major vessels between heart and vital organs), Spleen, and extends up into his chest cavity.
We were not aware of the full extent of his tumour until today, and it’s suddenly sounding scary!!!
Surgery is due next Wednesday, it will take about 4 hours, and then Jamie will spend at least one night in Paediatric High Dependency Unit. He will be catheterised; will have a nasal gastric tube to keep his stomach empty, nutrition through central line and a few other drips into hands. Dr Spice said he will have a cut right across his stomach and it will take him about a week to recover.
Jamie was reportedly snoring last night, due to his cough and slight cold. We have been banished to a side room and Jamie isn’t allowed out. We will have to spend the next week in here even if Jamie doesn’t need to, as we can’t take him to CLIC House where there are other oncology children who might be neutrophenic. Plus Matty has just come out of Bone Marrow Transplant, and we don’t want to risk making him ill.
Thursday 23rd October
We’ve had a busy few days, sorry for lack of updates… Charlie is teething, and hasn’t given me any peace to do updates!!! He is off to Grimsby tomorrow so I will be doing lots, I hope!!!
Monday Jamie finished his chemo hydration. We discovered a boil on his bottom.
Tuesday Jamie had a GFR, which is a kidney test where they inject a radioactive isotope and take blood after a few hours to test filtering out of his kidneys. The boil on his bottom was worse so he was put on antibiotics, just in case.
Wednesday Jamie had a bone marrow aspirate, and was very tender afterwards. He started GCSF to get the blood ready for stem cell collection. We spoke to the Bone Marrow Transplant unit where he will go mid November for 5 weeks in isolation for his high dose chemo and stem cell transplant after surgery.
Today Jamie had 3 appointments, all at 10.30am!!! CT scan, Ultrasound and MIBG injection!!! In the end we rebooked the ultrasound for 3pm, and then sat in a side room, as Jamie isn’t allowed to sit and wait with general public and their germs. The receptionist failed to tell the doctor where we were and he went home, as we were the last on his list. We were sat in this dark side room for 1 hour!!!! So after that cock up Jamie has his ultrasound at 8.30am, then MIBG scan at 9.15. We hope to take him still asleep, so he will lie still.
Jamie became unwell this afternoon, he just seemed out of sorts, and the Doctor said we’ve had a very easy ride, with Jamie being so well, and this is how he should be. He said after all the antibiotics; GCSF and chemo Jamie will feel like shit. Plus he is constipated too!!! Jamie doesn’t like taking his meds lately, as the lactulose makes him urge!
I will update you on test results as we get them!!!!!
Sunday 19th October
Before I forget… Jamie’s kidney function test showed that his right kidney is working at 88%, so the left is working at 12%. They should be 50/50. The Dr is going to compare it to other tests and talk to us further this week, so we don’t really know what that means, good or bad!!!!
We arrived at Bristol last night and got to the ward to discover that Jamie’s chemo isn’t due to start till 9am this morning, so we persuaded them to let us take Jamie back to CLIC house overnight, and Dave took him down this morning.
We have quite a small room, with 2 single beds, and a cot bed, with 3-inch gap space between!!! But the bonus is, we are on ground floor level, in a private annex flat with just one other family, so we don’t mind. We pushed the beds together and Dave, Jamie and I slept in what was a giant bed!!! Charlie joined us during the night, as he was cold!!!!
Jamie started his last round of chemo today, and is well, eating well, and happy, especially as he can go into the playroom here. His buddy Dave is in the next bed. Dave is 9, and was here last time we were in Bristol, he lives in Plymouth. Jamie was playing Playstation games with him yesterday, sat on Dave’s bed!!!
All Jamie’s tests start tomorrow, so I will keep you posted.
I have altered the site slightly. Jamie’s Journal link will take you to recent news, instead of the start of his journal.
I will be doing more to the site, now I have no housework, and more spare time.
Wednesday 15th October
We went to hospital yesterday and Jamie’s HGB had gone up from 8.4 to 8.6, and he was well and full of energy, so the doctor didn’t feel it necessary to give him blood transfusion.
That afternoon Jamie had a quiet day indoors, playing with his toys.
Tuesday evening Nana Teresa and Granny Jean came to visit.
Today Jamie had another lazy day, and stayed in his pyjamas all day. Some days he insists he doesn’t want to get dressed, so if we aren’t going out we let him keep his pyjamas on!
I’ve been packing for Saturday’s trip to Bristol; god knows how we are going to get everything in the car!!!!
I have updated the Angels & Fighters page, and added 21 new children!!!! There are still a few more to add!!!!
Tomorrow we are seeing our oncologist from Bristol, Dr Annabel Foot, she specialises in Neuroblastoma. I will let you know how it goes.
We still haven’t got any results back from Jamie’s kidney test.
Monday 13th October
Not much news really. Jamie came home Sunday afternoon, his HGB was 8.4, so we had to phone the ward today and they told us to take Jamie in tomorrow for a blood transfusion. This should take 4 to 5 hours, once they start it!!
Yesterday Jamie saw both sets of Grandparents, and Coralee came down from Honiton to visit us. Today Charlie had a check up with the health visitor, all is well. His non-live Polio vaccine had arrived, but it needs to be given in 3 monthly intervals, and we are leaving for Bristol on Saturday, so we will have to continue it up there. Charlie has his first jabs this Friday.
We all went to the train station and watched the trains for an hour today, which Jamie loved. He was a bit cold though, so we going to the park, and went home, where Jamie ate a bowl of spaghetti bolognaise and then a bit later he ate 2 rounds of toast!!! For lunch he’d had a vegetable bake with gravy!!
When we go to Bristol I will still update you, as we have Internet at the CLIC house, and I’ll have my laptop.
As we said before, please don’t ask to visit us at Hospital in Bristol, it may be a difficult time for us, and Jamie may be in isolation at times. Only Grandparents are permitted, so to save embarrassment and disappointment, please respect our wishes.
Saturday 11th October
Jamie is still in hospital, due to finish treatment at 4am Sunday. So providing he doesn’t need a blood transfusion we will be home by lunchtime tomorrow.
Dave has taken his PC to the hospital, as Jamie isn’t allowed to leave his room while on chemo, and isn’t allowed in the playroom, as it isn't an oncology ward. Dave bought Jamie a Scooby Doo game to play today, but he wasn’t too impressed and preferred GTA!!! Jamie asks if he can borrow people’s cars on the game and apologises when he runs people over!!! Sweety!!
Next week is our last week home; we will be leaving for Bristol on Saturday lunchtime, as the ward would like to start his pre chemo hydration on Saturday evening.
Our oncologist from Bristol will be at Exeter hospital on Thursday to see us, so I’ll let you all know what she has to say.
We have packing to do, and I’m worried we wont fit all we need in the car!!!!!
Please say a prayer tonight for Justin, who is loosing the fight against Neuroblastoma.
Thursday 9th October
Jamie went into hospital today for the second to last round of induction chemotherapy; Cyclophosphamide, for two days, Etoposide for two days and Vincristine for one day. Cyclophosphamide takes 48 hours, as it is a 24-hour drug plus 24 hours hydration afterwards, so we expect to be here until at least Monday. Especially as the pharmacy cocked up, and didn’t have his chemo drugs prepared when we were due to start!!!!!
On Thursday next week, we meet with Dr Annabel Foot, our Oncologist from Bristol, who is coming to Exeter. Then on Friday we travel up to Bristol to continue treatment there.
We will be staying at CLIC house on Fremantle Square; I will give contact details when we arrive.
Tuesday 7th October
Jamie’s blood count for Thursday 2nd October was:
HGB = 11, WBC = 1.40, PLTS = 23, NEUT = 0.07
Saturday we went back to the hospital for another blood count, which was:
HGB = 11.7, WBC = 1.26, PLTS = 38, NEUT = 0.09
This was after a platelet and blood transfusion on Thursday!!!
Jamie spent the weekend at his grandparents, and yesterday the CLIC nurse came to the house and did a blood count, which was slightly lower than Saturdays, platelets were 37 and HGB was 9 something.
Today Jamie had a kidney scan. We went in around 10am for an isotope injection, went home for 2 hours and returned for the scan. Jamie fell asleep on the way back to the hospital, and slept through the scan, then woke up when we got back home!!!
Jamie's blood count today was low; I forgot to write it down!! I can remember:
HGB = 9 something
PLTS = 22
Friday 3rd October
Today we went to my work place, Didworthy Grange, to see my work friends, Sharon, Pearl, Liz, Ken and Mike, plus the clients. Sharon and Pearl had bought Jamie a Humvee Play set,
Which he loved, and a box of chocolates, which he has carried around all day!!!
This evening Jamie played on the computer before we had a bath together and played with his dinosaurs, before going to bed. I had to read Topsy and Tim, meet the Police, and go to school.
Charlie has been so good lately; he seems like a different baby since we got him into a routine. He rarely cries now, and is happy, smiling and laughing a lot. I weaned him last week and this week he’s decided he can’t be bothered with solids, except milky bar buttons and milky bar yoghurt!!! Which isn’t a good diet!!!!
Tomorrow night Dave and I hope to go out for the night, with Coralee and Jim, it will be the second time we’ve been out in over a year!!!!
Thursday 2nd October
Jamie got his platelets transfusion today. When I arrived at 2pm he was rosy cheeked and full of energy after his blood transfusion last night.
We weighed Jamie and he is now 14.2kg!!!! Probably all those fluids they’ve been pumping into him!!!
We got home early evening and Jamie wanted to go straight on the PC to play Battlefield, as he hadn’t played any computer games in the hospital, so we let him. He alternated between PC, TV and playing with his toys, and insisted he wasn’t tired at bedtime, but he fell asleep almost as soon as his head hit the pillow!!!
We need to return for a blood count on Saturday morning, as Jamie may need more blood and platelets, then return on Tuesday for kidney function test.
Jamie would like to say “Hello!!!” to Billie, Bethany and Polly, who regularly come to the site, thank you for your support.
Wednesday 1st October
Jamie finished chemo today, and is waiting to have blood and platelet transfusions tomorrow.
His blood count is:
HGB= 5.5
WBC= 0.90
PLTS= 39
NEUT= 0.13
We have decided to refuse consent for the nose tube feeding, called Nasal Gastric feeding, next week, as we don’t think Jamie is overly skinny for his height, and it will just upset him unnecessarily. Sparks may fly tomorrow when we tell the doctor this!!!
Tuesday 30th September
I have updated the site and added a page of links to fighters of Neuroblastoma. These are all people from my Neuroblastoma Support group online, where I get loads of advice, support and encouragement. I just post a question and loads of people lend advice and experiences. I don’t think I could have coped without it.
Jamie is having a platelet transfusion tonight, and a blood transfusion on Thursday morning.
If Jamie hasn’t reached 14.5kg by Monday, the doctor wants to feed him through his nose, and we expect to be in all week, with chemo and kidney test too!! We were hoping to take Jamie to Yeovil Navy Base to sit in a helicopter!!! Jamie weighs 13.9kg, and has done throughout treatment. He eats very well, but just doesn’t gain weight.
I don’t think we will make the goal by Monday, and we are negotiating better terms!!!
Baby Charlie spent the day with us at the hospital today, he was good as gold, he didn’t make a fuss once, ate all his dinner and took his bottles well. It was nice to enjoy him away from the housework. We are planning to include Charlie in every hospital visit as long as he seems to enjoy it.
Friday 26th September
Jamie had a blood count yesterday…
HGB= 9
WBC= 1.20
PLTS= 126
NEUT= 0.55
Which means he is Neutrophenic (When NEUT= 0 or under)
Our Oncologist at Exeter, Dr Parkyn is very pleased with Jamie’s progress, and said that his tumour feels smaller, although we haven’t had the test results back from Bristol yet.
When we go up to Bristol on 20th October for the last round of chemo, we expect to be there over Christmas!
Also, they will be harvesting his stem cells to rescue him after High dose chemotherapy, so he will not have any immunity to infection, we will be in isolation room, and will not be allowed visitors, sorry. I will keep everyone updated while we are there.
We hope to celebrate Christmas with the family when we return.
Jamie had his car wash after we’d been to hospital.. He enjoyed it; we had a Gold program (Hot Foam wash, Under Chassis wash, Wax and dry!!!!)
Later Coralee came over and we went to the Jay Jay Jet Plane ride outside Tesco, but it was broken!!!
Today we were very lazy, and stayed in all day, watching TV and playing computer games.
I managed to tidy the house (sort of!!) and tidy Jamie’s toys at last.
Charlie’s feeding is going well, he seems a lot happier on solids, and we are puppy training him into a set routine, which seems to make life easier for us all.
Monday 29th September
As you may have noticed, the site was down over the weekend, my cock up, sorry!!!!
Jamie had a good weekend, at grandparents, and has gone into hospital today until Wednesday, possibly Thursday for chemotherapy. He is having Cisplatin, which is 24 hours infusion, then 24 hours fluids, then Vincristine, with is a short injection into his line.
His blood counts are:
HGB= 8.2
WBC= 1.4
PLTS= 32
NEUT= 0.08
He needs a blood transfusion also; I will post his blood count tomorrow, as I’ve left it at the hospital!!
His results came back from Bristol, the bone marrow aspirate showed no signs of disease in his bone marrow, although the doctor said it is not accurate until they do a more accurate bone marrow scan. And as we knew, his tumour has shrunk!!
He has to go back into hospital next week for a kidney test on Tuesday and last chemo before we go to Bristol. They also want to feed him through a tube up his nose, but we aren’t too happy about that, Jamie will hate it, so we will discuss it further, and see if we can agree an alternative.
Wednesday 24th September
Not much news. It’s been a quiet 2 days, I’ve been trying to catch up on housework!!! The housework still isn’t done!!!
Charlie had first solid foods today!!!! Pear and apple, as he has been having trouble with bottles and poohie nappies, so the health visitor suggested it. Fingers crossed he might sleep better!!! He’s also in his own room now, due to him being noisy in the morning, and shouting at his toys before it’s a reasonable time to get up!!!
Jamie has been usual energetic self. He is due for a blood count tomorrow at Exeter, and I’ve promised him a trip to the car wash, and a ride on Jay Jay Jet plane ride at Tesco!!!!!
Monday 22nd September
Jamie had a great time at his Nana and Grandad Chudleigh this weekend. He went to a Tractor show just outside Chudleigh on Saturday afternoon, and was so worn out that he asked to go to bed at 8.30pm!!!!
On Sunday he went for a walk with Grandad, and we picked him up in the evening.
When we got home Jamie, Charlie and myself all had a bath together, we managed to upset Charlie by being a bit too loud, we were making Jamie’s plastic Teletubbies wee in the bath!!!
Today we went into Exeter hospital, because Jamie’s central line looked like it was coming out, so we needed it checked. They might have sent us to Bristol to get a new one.
Luckily it does come out slightly and after an X-Ray the Doctor said it was fine, and we could go home.
Jamie’s Blood Counts are good:
HGB= 10
WBC= 1.61
PLTS= 201
NEUT= 1.17
I cooked roast pork, with Yorkshire puds, broccoli, roast parsnip and cabbage. Jamie ate a huge plate of it!!!
I have updated the photos on About Us page, and added some of Dave and some Wedding snaps.
Tomorrow I intend to clean and tidy the house, as it’s looking a bit like a bombs dropped!!!
Saturday 20th September
Jamie finished chemo yesterday and came home. He is limping, and a bit stiff after his bone marrow aspirate. Apparently this happens on the second one if they use the same site as the first. It will take a little longer than before to heal up.
Jamie is still full of beans; he stayed up quite late, playing computer games last night!!!
Today Jamie has gone off to Nana and Grandad in Chudleigh till tomorrow afternoon.
In have scanned in all latest photos, and they can be found on Jamie’s Photo Album. I hope you enjoy them, as much as I did looking through them!!!
Thursday 18th September
Jamie went in for more chemo today, Etoposide today and tomorrow, which is a 4-hour drip, Carboplatin, which is an hour drip and Vincristine, which is just a straight injection into his central line.
He woke up grumpy and tired (Not a morning person) and went to sleep in the car on the way to hospital, and didn’t wake till 2pm!!! By then his chemo had started!!
He has been happily playing with his new toy soldiers and dinosaurs in bed today. We hope to come home tomorrow afternoon.
Wednesday 17th September
It was Dave’s 27th birthday yesterday, so as a treat he spent the morning in bed!!!!
I the afternoon we popped to see his mum, before returning home.
My mum brought Dave a present over, a Danger Mouse T-shirt and some jeans, which were too long!!!.
Auntie Jo Jo came over and we all had a Chinese takeaway. Jo bought Dave the first series of Spooks on Video.
Jamie, Charlie and I got Dave an air hockey table, “I don’t do Mingers” T-shirt and one of those games where you have to get the ring around the wiggly wire without touching the wire, except instead of it buzzing you get a shock!!!! Not for kids!!!
Today Jamie was at Bristol Day unit for a bone marrow aspirate and an ultrasound.
All went well and we are home again, ready for round 5 of chemo at Exeter tomorrow.
I will let you know the results of today's tests when we get them.
Monday, September 15, 2003
Jamie's Blood count is up!!!!
HGB: 11.2
WBC: 5.4
PLT: 142
NEUT: 4
So he is not neutrophenic at the moment!!!! Still full of energy, been baking cakes at Nana Pat's today.
Tomorrow is Dave's birthday!!!!!!
Saturday, September 13, 2003
Jamie came out of hospital after his blood transfusion, finally at 4pm!!! He has been full of beans ever since, and still hasn't stopped talking!!!!
We went to Paignton Zoo on Friday, with baby Charlie and Nana Teresa. It was exactly 2 years and a day since Jamie last went to the Zoo. It was September 11th last time we went!
Jamie was very excited to see Pigeons, seagulls and a rabbit at the Zoo!!!! He kept asking if he could climb in the enclosures with the animals!!!
Today we had a move about. We moved the computer desk into the middle room and moved he sofa back to the lounge, so we have a posh lounge now!
Then we went to a BBQ at Nana Pat's
Jamie is going to Nana and Granddad Chudleigh tomorrow morning, and I am doing another car boot sale, this time at Exeter WestPoint, to raise so more money for The Neuroblastoma Society.
We still need good toys to sell, so get on the phone!!!!
Wednesday, September 10, 2003
Jamie finished his chemo today. He is still in hospital, he was meant to have a blood transfusion tonight, but one of the nurses fucked up and didn't order the blood in time! So he will hopefully have it in the morning, if it comes!!!
He is coping well, and has put on more weight!! Only 0.4 of a kg, but that's something. They ideally want him to get to 16kg, by mid November, and he is 14.3kg now, so nearly there!!!
Jamie has been playing GTA Vice City on the laptop for most of the day, sailing boats and flying helicopters!!!
Monday, September 8, 2003
Jamie's back in hospital today for round 4 of chemo (I might have said round 5 before, but I was wrong - "you see I get all mixed up!!")- Sorry private joke, Didworthy peops will know what I mean!!!
His blood counts are low, as expected, his Neutrophils=0, Platelets=83, HGB=8, WC=0.19. We are expecting him to
have a blood transfusion before he goes home.
This time he is one Cisplatin, which is a 24-hour drip with fluids running simultaneously, then 24 hours of fluids after as a detox, and Vincristine, which is an injection straight into his line. Fingers crossed he hasn't been sick on any chemo yet, and hasn't had any infections, when they have expected him to! I said he is a fighter!!!
Hi to all staff at Didworthy Grange, especially Sharon (Du Management), Pearl, Emma and Michelle - thank you for your message in the guest book - I miss you guys!!!
Sunday's car boot sale raised £49 for The Neuroblastoma Society!! We plan to do another at Exeter next weekend.
Saturday, September 6, 2003
I haven't got the other photos from the processors yet, as Dave was poorly on Thursday night with this tummy bug... I won't go into gory details!!!! And Friday I had both kids to myself, and Jamie isn't allowed shopping, as he is Neutrophenic (Low blood count)
Jamie is fine.. Gone off to Grandparents for the weekend, as we want to keep normality as much as possible, and Jamie always goes to Grandparents at the weekend.
I tried to have a bath this morning, while Dave was out helping a mate move house and Jamie decided he wanted to get in! So I put his wigglies in a moneybag, securely taped to his shoulder as not to get wet, and we both got in, and played with the foam alphabet letters, making words. Then Charlie kicked off and he ended up in the bath too!! It was quite a sight, and our bath isn't very big!!!
Thank you to the Red Arrows, who sent Jamie a goody pack, of posters, postcards, stickers and a cap!!!
Jamie is back in hospital on Monday for round 5 of chemo, and he will probably need a blood transfusion too, so give blood when you can, every drop helps!!!
Thursday, September 4, 2003
Lots of new photos added, see the previous page, for the day out at cousin Josh's!!!!!!
CLIC nurse came and took blood today for blood count; HGB=8.5, WC=0.7, Platelets=110, Neutrophils=0.4!!!!!
We went to visit Coralee today, who isn't too well, in Honiton. Jamie played Dreamcast Evolution and kicked ass on Mortal Combat!!!!!
He is full of energy and still eating well, we are going to Paignton Zoo tomorrow!!!!!
Also I get 2 more films back from processors!!! If any of you want individual pics sending, just let me know.
Tuesday, September 2, 2003
Here is a news story on CBS News about a little girl with Neuroblastoma, who has raised over $110,000 for research, which proves anyone can do anything if they put their mind to it;
http://www.cbsnews.com/stories/2003/09/01/eveningnews/main571034.shtml
Jamie has had another good day, his energy levels are hitting the roof, he never shuts up!!!!
We are going to visit cousin Josh in Plymouth tomorrow, on Jamie's request, to give him his birthday present.
We had problems with DLA today, our doctor had to send a form to them explaining Jamie's condition so we could get DLA under special circumstances instead of having to wait 3 months. Our regular doctor is on holiday, so another was asked to fill the form, which was very reluctant, and didn't believe Jamie's condition is potentially terminal within 6 months without treatment. She sent the form anyway, and now we have been turned down for DLA after whatever she put on the form! I phoned the doctor's surgery today and complained, and the nice receptionist is getting our regular doctor to phone us tomorrow to sort out sending another form. Silly moo!!!
Monday, September 1, 2003
I will probably not be doing daily updates while we are home, as there isn't much news, and I will begin being boring and repetitive!!!!
Today Dave took Jamie to the park and train station in his battery car... the station announcer doesn't like Jamie riding his car on the platform, when they get in the station, as if by coincidence his voice comes over the tannoy, "We remind passengers that cycling and skateboarding on the platform is illegal" good job Jamie is driving a car and not riding a bike eh!!!!!
Jamie has been full energy today and hasn't stopped talking since he got up; actually he talks in his sleep also!! It's been non-stop babble all day. We had a funny moment while we were in the garden; Jamie was inside talking on his pretend mobile phone to our friends Nic and Chris. Jamie only ever talks to Nic or Chris on his pretend mobile, and usually says things like "shall we play cars Nic?" "Can I boss u about Chris?"
Jamie has done a bit of painting today; he only usually wants to do this when he sees me cleaning up his paint palette!!!
Baby Charlie appears to be teething, we have had a few hours screaming from him this evening!!
I was telling Jamie about Disney World today and trying to describe it.. All I could think of saying was, Mickey Mouse will be there, but Jamie doesn't know Mickey mouse, so I had to think of Disney characters he will know, so I told him he could see Buzz Light-year! Jamie said he wants to see Zurg, so I really hope they will be there!!! I also had trouble getting him to understand how long away it will be before he goes, and I ended up saying "When you are 4"!!!!!
We hope the weather is good enough to go to Teignmouth again tomorrow, get some use out of his car before winter, god knows where we will store it then, at the moment it is in the middle of our dining room, and anyone who has been to our house knows how small our dining room is (the middle room attached to the kitchen) every time we come down from upstairs we can hardly get through the door, and have to walk round it to get to the toilet!! I tripped over it in the dark last night!!!! Who's idea was it to get him that?
Sunday, August 31
I went to pick Jamie up today, he is home until next Monday, and so we are going to have a couple days peace and quiet.
Good news, Jamie's blood count is up and he's put on another 0.3kg!!!!! Not much, but it's something!!!
We didn't do much today, Jamie played on the computer a lot and ate 2 bowls of spag bog, chips and lots of crisps!!
Tomorrow we are going to the park, and hope to see Coralee this week.
Saturday, August 30
Today was much the same as yesterday... Jamie still taking chemo well, no sickness yet! He has eaten well today and been playing Grand Theft Auto on the hospital's laptop. We hope to get him a laptop to take into hospital for himself, one of the cancer charities funds them for children, so fingers crossed.
His chemo finished at 0.55 last night and he had to have 24 hours of fluids and Mezna, which protects the lining of his bladder from the chemo drugs.
I spoke to Dave around 9pm and he was asleep already! I will be picking him up tomorrow and we will have at least 2 days at home to ourselves before venturing out.
Jamie isn't due back to hospital for next chemo until Monday 8th September, and CLIC nurse is coming Thursday to do a blood count.
I missed a comical moment earlier when I popped outside to use the phone, Jamie decided to jiggle about whilst weeing in a bottle stood up and got wee all over the bed, but missed Dave this time!!!!
Friday, August 29
Another good day today. I arrived at the hospital at 9am this morning after dropping baby Charlie off to his nana's to find Dave and Jamie still asleep. Apparently the nurses woke Jamie every 2 hours to make him have a wee! This is because of one of the chemo drugs he is on, just to make sure he isn't getting kidney damage.
Jamie was in good spirits again today, and played with his pirate ship play set, and toy cars in bed. We also watched "All good dogs go to heaven", well most of it, until Jamie discovered the remote control, and started channel hopping until we found "Chips" on UKGold. Wow motorbikes!!! So we watched that for a while, and I had to explain to Jamie about the programme, which was about racing car drivers!!!
All the nursing staff and doctors comment on how good Jamie is and how well he copes with chemo, most kids puke and are really poorly, while Jamie wants to play fight and is eating like a horse... he was ordering toast at 11pm last night, while he and Dave watched Lord of the rings 2!
Jamie is mostly in bed while receiving chemo, as he is not allowed to take his drip trolley out of his room, in case of spillage, but when he is just on fluid drip he can explore the hospital. He usually stands on the base of is drip trolley and Dave pushes him around the corridors!!
He has a special card that allows him free meals and pudding from the hospital restaurant upstairs, when there is nothing he likes on ward, so we take him upstairs to choose a meal to eat away from the ward for a change.
We are doing well with Jamie's "Playstation 2 fund" Thanks to Auntie Jan and Uncle Len for the donation.
In case anyone wants to send stuff, please be aware... we can't have flowers or plants, due to bacterial risk, but Jamie loves Helium balloons! Please try not to send toys, we have a small house and already have no space for any more toys!!!
We are going to set up a savings account with Abbey national, who have teamed up with Charity CLIC, to start saving for trip to Disney Florida when Jamie has completed treatment, we will post details when it is up and running
Hi to Telewest Plymouth, who are running an article about Jamie in their contact centre magazine, and are helping to raise money for Jamie's Florida Trip. This is thanks to my friend Al and editor Ian Canty... Cheers Guys!!!
Just a last note to make you smile... Jamie's quotes of the week are; "I've been such a good boy!" and "I did fluff" (Fart!)
Thursday, August 28
Jamie went into hospital today to have his 3rd round of chemo. We expect to be in for 3 to 4 days this time.
When we arrived they took some blood for a full blood count which is; haemoglobin=10.1, white cells=4.5, platelets=92!!!!! And Neutrophils=1.46!!! Which means he isn't neutrophenic at the moment, great!
Also, he has put on weight, he weighed 13.1kg on 18/08/2003, and today weighs 13.6kg!!!! Well-done Jamie!
Jamie has had a good day, and has been in good spirits, and very hyperactive, despite being in bed all day! He has eaten well and taken his medicines like "Such a good boy"
I phoned the Red Arrows and asked them to dedicate the heart shape that they make during their display at Dartmouth today to Jamie, they said they would see what they could do.
Wednesday, August 27, 2003
Our health visitor came to visit today and weighed Charlie, he is 12lb 9 oz now!!! We had a nice chat and a cuppa tea.
Then Sergeant Social worker came to help us get benefits we are entitled to.
Jamie ate a good lunch then we all went to... you've guessed it, Teignmouth seafront again!! This time just the three of us, as nana pat was stuck at home full of cold!
We had a sandwich sat outside the sandwich cafe in the triangle before flying a kite on the den.
Parents, asking if their kids could sit in Jamie’s car, harassed us! Dave had already said yes to one lady, who came over and I said yes as long as her little boy didn't have a wet nappy on, as Jamie is neutrophenic, so you know what she did? She took him a few yards away and made him have a wee on the grass on the middle of the den, where Jamie was flying his kite with his daddy!!! Some people!
Jamie is back in for his 3rd lot of chemo tomorrow, so he's making the most of using the PC before he goes to bed!
His hair is almost all gone now, all that's left is light blonde and short, like arm hair, and he doesn't seem bothered
Tuesday, August 26, 2003
Unfortunately I started getting symptoms of a tummy bug at 5am this morning, and funnily enough, so did nana Teresa!
I was banished to stay in bed, while Charlie went to nana Pat and Dave looked after Jamie today.
From reports Jamie has had a good day, eaten like a horse again; cereal, yoghurts, 2 bowls of spag bog, crisps and chips.
The CLIC Nurse came to test Jamie's blood today, his count is up, Neutrophils are 1.20 and platelets are 55!!! That's better!
Monday, August 25, 2003
Another good day today, we had an early visit from granddad Paul, who had bought us a new strimmer to replace the other one that broke from the strain of our long grass!!
Jamie and I watched a Simpson's video for a little while, before we all went down Teignmouth seafront again, and Jamie drove his car around on the promenade.
We had to put factor 60 sun block on his head, as nearly all of his hair has gone now, it's going dark in patches as the hair follicles are dying.
We were due to return to Teignmouth tonight to watch fireworks after the fairground finished but Jamie fell asleep in the car on the way home, so we put him straight to bed.
Jamie had a lovely day, he seems well, his appetite is improved, and he turns a lot of heads with his battery-powered car.
We had one nasty comment today from a lady, who was sat nearby with her husband and kids... The kids said, "Look at that little boys car mummy!!" and she said, "Spoilt Brat I expect!” Nana Pat soon corrected her and explained that he is actually poorly and can't walk very far. We wouldn't have got the car for him if he were well! They get up and walked off quite soon after that, without finishing their drinks... embarrassed I think!
Some people huh?
Sunday, August 24, 2003
Fridays Blood Count; Haemoglobin=11.2, White Cells=3.4, Platelets=52, Neutrophils=0.07
Today's Blood Count; HGB=10.6, WC=3.22, PLTS=46, N=0.21
Jamie has had a really good day, he has eaten really well, cereal and 2 yoghurts for breakfast, spag bog and scarlet bread for lunch, turkey burgers, chips and sweet corn for dinner, plus sweets, jaffa cakes and a bunch of grapes!!!
His hair is falling out fast, we are finding it everywhere, and it gets down our throats!!!
Saturday, August 23, 2003
Yesterday Jamie had to pop into Exeter Hospital for a blood test. His count is still low, even after the transfusion, so we have to return on Sunday to check it again, in case it keeps dropping.
Jamie had an excellent afternoon, driving his car up and down Teignmouth seafront. His cousin Harry joined him, and they played nicely, taking turns to drive Jamie's car.
Jamie isn't allowed to go onto the beach, or swim, but he didn't seem bothered about it.
Today Jamie has had a visit from his other cousin, Joshua. They played in the garden and on the computer, and then Jamie's grandparents came over and took him, and his new car over to their house for the weekend.
He has eaten really well today, and his nana phoned earlier, so Jamie could tell me he ate 2 fish fingers, chips and baked beans for dinner. He said, "Mummy I'm such a good boy aren't I!"
We'd just like to thank everyone, who has sent cards and gifts for Jamie, we hope to get round to sending thank-you cards soon.
We are in the process of de-junking the house, and tidying up the garden, which is a bit overgrown since we've been away. The strimmer broke under the strain, and we have to cut the long grass with scissors!!!
Thursday, August 21, 2003
After a blood test today Jamie was allowed home, until next Thursday, when he needs his next lot of chemo.
His blood count was; haemoglobin=10.6, White Cells=2.59, Platelets=61, Neutrophils=0.12
We need to return to hospital tomorrow for another blood test, Jamie may need more Platelets, but they only take 30 mins or so, so he wont have to stay in over night.
We all went down to Toys R Us in Plymouth today and bought a battery powered car for Jamie, from money kindly sent from Nanny Trixie, Auntie Elaine, Auntie Jo Jo, Nana Pat. Thank you guys!!! We are saving the rest towards a Playstation 2, to keep Jamie amused in hospital.
Jamie's hair began to fall out yesterday, in clumps. It was only noticeable by Jamie being covered in hair, and hair all over pillow, as he has thick hair. Jamie didn't seemed bothered by it, but today we shaved his hair short, so it won’t look so weird when it falls out more, and Jamie has bald patches.
Wednesday, August 20, 2003
Jamie received lots of fluids through IV today, to flush through the chemo.
His Blood count yesterday was: Haemoglobin= 7.2, White Cells=1.8, Platelets=41, Neutrophils=0.14, so he is to have a platelet transfusion and a blood transfusion before he can go home.
Just for reference, his blood count on 8/8/03 was; Haemoglobin=9.9, White Cells-5.61, Platelets=306, Neutrophils=4.27!!!!!
Jamie still seems his happy self and doesn't appear to be in any pain, which is good. The doctors can't believe he is so alert, happy and active for such a sick child.
Tuesday, August 19, 2003
A very good day today!!!!
Jamie is responding well to Chemotherapy, the doctor says that the lump in Jamie's tummy doesn't feel so prominent, so I guess it is shrinking already!!
Jamie's blood count has gone down again, so he will need a blood transfusion and platelets transfusion before he can come home (Hopefully home Thursday)
We had a funny day yesterday... Jamie had to do a sample wee in little pot, and when it was full I said "Stop!" and swapped it for the wee bottle, and told Jamie "Carry on!” I leant over to put the sample down and Jamie's thingy slipped out of the bottle and he weed all over Dave!!! I had to drive home and get him clean trousers, he was not amused, but Jamie and I found it funny!!
Then today the nurse did exactly the same and poor Dave got weed over again!!!!
Jamie is borrowing a Playstation 2; until he gets his own, and has quite few games, so he has been very happily playing Crazy taxi, Bob the builder, etc..
Thank you everyone who has signed the guest book, it is great to know you are all there for us
Monday, August 18, 2003
Jamie spent the weekend with nana and Granddad. On Friday we went to the top of Haldon and watched the Red Arrows over Dawlish, which made Jamie's day!!!
Arrived at Exeter today... Jamie's white blood count is 0.14, which means we can't risk visitors in case of infection.
Jamie took well to today's chemo, he has enjoyed being in a private room, and not having other children upset around him. The nurses here are great and have a lot of time for us
Tuesday August 12th, 2003
Discharged from Bristol to go to continue treatment at Exeter, closer to home. Visited Exeter on way home.
It feels good to be at home again
Sunday, August 10th, 2003
Jamie allowed to stay at CLIC house overnight!!!!
He played with Josh and other children there, and enjoyed himself.
Saturday, August 9th, 2003
Jamie allowed out to CLIC house for few hours!!!
He was a bit overwhelmed by all the other people there and asked to return to the hospital!!!!!
Friday, August 8th, 2003
Jamie woke in a good mood, and ate an early breakfast before being allowed to come to the hospital cafe with me.
His audiology appointment went well, Jamie was enthusiastic and the results were fine.
Dietician came and gave us some supplement shakes and Polycal powder for Jamie to help get his weight up. Jamie didn't like the "Tasteless" flavour!!!!!
More Chemo today.. I arrived to find Jamie crying hysterically. Apparently the anti sickness drug contains steroids which explains Jamie's violent behaviour!
Jamie put on drip as output low
Thursday, August 7th, 2003
Chemotherapy started, Vincristine, Etoposide and Carboplatin. He was given an ant sickness drug, which has made him violent and hysterical, he cries whenever one of us leaves his bedside.
Finally he falls asleep, and then HTV come to film the magician for a TV program on Bristol Hospital.
Wednesday, August 6th, 2003
Jamie lay still for a whole hour while he had MIBG scan.
Monday, August 4th, 2003
Test results came today; Dr Annabel Foot led us to a quiet room and told us Jamie has Stage 4 Neuroblastoma.
I remember asking how many stages are there? Dr Foot said 4, and I broke down.
Jamie has a 25% chance of survival; the cancer is widespread in his body.
It is not known how long Jamie has had this and Dr Foot assured us it has nothing to do with anything we have done, i.e.; smoking during pregnancy
Jamie will need 12 weeks of chemo, followed by stem cell harvest, as chemo destroys stem cells for bone marrow. Then if the tumour is small enough he will have surgery to remove it, then high dose chemo, radiotherapy, then different ion therapy.
Jamie will be infertile after treatment.
Saturday 2nd August 2003
Jamie still in pain, morphine increased, he slept most of the day.
I returned to CLIC house and Dave stayed with Jamie tonight
Friday 1st August, 2003
Jamie Nil By Mouth again for Biopsy, Bone marrow aspirates and line insertion.
Nurse came to take blood from Jamie's hand and hurt him, he cried and screamed, which upset Dave and I.
When Jamie went down to theatre he screamed and cried in anaesthetic room, as he was scared after being hurt by blood nurse before. I left crying after he'd gone to sleep.
2 hours later I was called to recover to meet Jamie. He was in a lot of pain but refusing nurses to help him. At one point he looked up at me and said "I love you mummy"
He was put on a morphine drip and eventually allowed back to ward after they had stabilised him.
That night the nurses on ward allowed us both to stay with Jamie, as his stats were poor.
Jamie had restless night, in much pain until they got the morphine dosage right.
Thursday July 31st, 2003
Jamie Nil By Mouth for MRI scans. It ran late and Jamie played up and cried, as he was hungry. He needed General Anaesthetic for scan.
When Jamie came out he didn't want to wake up and cried
Wednesday July 30th, 2003
We all walked into town to buy some bits, and had a Burger King lunch, then set off for Bristol.
We met Dave's mum just outside Bristol, and they directed us to the hospital.
I stayed with Jamie that night, Dave stayed at the CLIC House.
Monday, July 28th, 2003
We went to a doctor’s appointment, as Jamie has not been right for 5 weeks now.
We've seen a doctor 3 times now, and both have said that Jamie has a virus, making his gland in his stomach swell.
Dr Raby said that 5 weeks is too long for a child to be ill, and Jamie had lost so much weight, he sent us straight to paediatrics Torbay.
After examination the doctor said that Jamie's spleen was enlarged, which pointed to Glandular Fever.
Jamie had a blood test, which showed anaemia and hepatitis, then an x-ray.
We were then sent to an ultrasound, where the ultrasound operator looked scared and phoned a consultant, who she said would talk to us on the ward.
Dr Sainsbury, the consultant met us on the children's ward and broke the news to us that Jamie has a cancerous tumour growing from his adrenal gland and squashing his kidney, we were to go to Bristol Royal Children's Hospital.
My parents cried down the phone when I broke the news, so did Dave's mum.
We were allowed home, to travel to Bristol the next day.
Mum, dad and Gran came to visit, and I phoned a few people to spread the news, everyone cried down the phone at me.
That night, I hardly slept a wink. Dave slept downstairs and I slept with Jamie in our bed. I was so scared to go to sleep; I just lay and watched him for hours.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |