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Wednesday, January 28, 2009 10:33 AM CST
Ahhh my baby boy!
I finally got in here to write on your page.
Miss you daily, cry for you daily, and thats the legacy that i have been left with, but in all my four childrens eyes I see a part of you and thats where i find my little haven of peace!
My much loved chocolate loving baby boy!
Love you from here to eternity.
Mummu, daddy, Kee Kee, Tt, Nana Bear & Awi
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Wednesday, September 5, 2007 7:37 AM CDT
Hey baby boy!
You would of been starting your first day at primary school today...... If i close my eyes real tight and could just imagine you in your green blazer and grey trousers.. I think of what would your friends be like, and what parties you would go to and what lessons you would like or hate...
Lewis went to big school today, he looked so smart in his uniform, big boy now. His mummy is putting your picture in Lew's back pack so you will be going to school in some way. I miss you baby.
Your big bro started Secondary school today he looked so smart! and your lil sister started her first day at nursery, they have already rang me saying what a live wire she is! thats a understatement. I think she has more energy in her little body than the whole family put together.
I do feel you around me little man, and mummy, daddy, Niquey, TT, Tia, Amari, Nee Nee and Pops love you so very much.
Mummy
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Monday, February 5, 2007 8:27 AM CST
Hiya Mar Mar,
Finally managed to get my author sign in sorted, had to previously leave my journal in the guestbook!!!
Well, finding it hard, very hard lately,. I think of you every single day, all the time but for some reason i cant get past the sad times, normally i can think of the good times to keep me going. I dont know rambling away.
Your little sister is 18 months now and a absolute terror, into every single thing you would of had so much fun playing with her. Your little bro is 4 and a half months and he reminds me of you so much, probably thats why i keep thinking of you even more cos Amari does looks like you.
Daddy is gonna get your bench when we move and sand it down and put a few coats of varnish on it.
Missing you baby boy
All my love
Mummy
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Tuesday, October 17, 2006 3:20 AM CDT
hiya Mar Mar,
Well its the dreaded day today! 2 years since you left us... I wont be able to get up to your resting place today but i have lit a candle for you and said my prayer and had our "Daily Chat"..... Its funny how people assume as we are 2 years down the line I/we should be over it, sad to say but i will never be over you, how could i be?
Since you left us I have had a sister and brother for you so we are a really big family now but nobody could fill your shoes or take away the hurt and anger.
I love you baby boy, I will be up to your place tomorrow.
/My bouncing Tigger Fat face
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Friday, June 23, 2006 7:30 AM CDT
Hiya my baby boy,
Every day I go into your web page to see your face, it feels like a lifetime ago that you left us but then other times it feels like yesterday.
Missing you is just a aching void that nobody and nothing can fill. My grief is so very personal to me, its a hard place to live in.
I love you baby boy
My bouncing tigger fatface
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Thursday, April 13, 2006 1:14 AM CDT
My precious baby Mar Mar,
Enternally 18 months but in earth years you would be 3 today, big boy!
Every day i wonder,,, what would you look like, what would your favourite foods be CHOCOLATE! what would you be like with Tiana the menace, what would you be like with Martinque & Tyrell? so many things go round in my head but what i am left with is our special memories and they will never fade until my heart stops beating and im laid to rest next to you. Sometimes i feel my grief is like a tidal wave, uncontrollable, with such a force i feel my every breath knocked out of me and other times i just go though my every day life with a picture of you in my head with your lopsided smile and curly hair, and ever dirty smelly duck.
I love you Mar bigger than any rainbow and like life itself, you are so special.
Happy Birthday baby boy, my bouncing Tigger Fat face.
Lots of love
Mummy, Daddy, Niquey, Tyrell and Tiana
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Monday, April 10, 2006 3:48 AM CDT
Hiya my bouncing Tigger,
Three days til your birthday, betcha cant wait.
Mummy, Daddy, Niquey, T and Tiana Banana moved house on the weekend.
I cant stay there with so many horrible memories, even tho you left us with such wonderful ones, you chocolate eating monkey!
Mummy loves you as big as the universe.
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Monday, January 2, 2006 3:58 AM CST
Happy New year my Bouncing Tigger
love
mummy, Daddy, Martinque, Tyrell, & Tiana
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Saturday, December 24, 2005 1:39 AM CST
To my precious bouncing Tigger Fat face
"HAPPY CHRISTMAS"
Lots of love hugs and special kisses on a rainbow to you
Mummy, Daddy, Martinque, Tyrell and Tiana
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Sunday, July 24, 2005 12:27 AM CDT
Our one year Anniversary on Monday, but a year on Sunday til my baby left us. All the family are going to Woodlands to plant a rose bush and have a chat to the little man. People seem to be more careful around me and i have started getting the knowing looks again and i say its just the 365 fith day of not having Mar coming up WHY should it be any different to any other day without Mar? do people think I dont think about him or cry over him every single day and cos its the year anniversary im gonna be worse? Sorry the anger is still very near the surface.
I JUST MISS MY BABY SO VERY MUCH.
I have added a picture of Tiana, Mar Mar's younger sister.
Will update on Monday.
Sam
Saturday, April 30, 2005 12:04 AM CDT
Marcel Michael Hill
I Only Wanted You
If I could have a lifetime wish
A dream that would come true
I'd pray to God with all my heart
For yesterday and you
A thousand words won't bring you back
I know because I've tried
And neither will a thousand tears
I know because I've cried
You've left behind my broken heart
And happy memories too
I never wanted memories
I only wanted you
Mummy Loves you Fat Face Bouncing Tigger
Wednesday, April 13, 2005 1:43 AM CDT
Happy Birthday Mar Mar, Fat Face, Bouncing Tigger!!!
Its 7.44am and you were born 2 years ago at 8.08am weighing in a decent 8lb 7oz. Beautiful black hair with blue eyes, and the first thing you done after being born was FEED! your favourite past time. My precious 3rd born, a gift from God, we didnt plan you but boy you were so adored as are all our children. It all seems sureal that your not here to eat birthday cake and shake your booty.
Im taking your big bro & sis up to your resting place today and were taking up balloons (your favourite) and we have attached messages to them for you.
I remember going to Pizza Hut and when they gave all of you guys balloons, well Mar Mar, the others werent allowed to play with there's were they! as far as you were concerned they were all yours and you would spend days chasing them around the house.......and anybody dare touch them and they would get a stern point of the finger and slap.
So to my Mar Mar a Special Son,
People try to help me
Every one is so kind
But no matter what they say
I always seem to find
They look at me with sympathy
In a caring sort of way
I thank them and attempt to smile
Then as I walk away
The tears start welling up again
Every time its the same
I simply fall apart
At the mention of your name
I know that your in Heaven now
And my heart is filled with pain
But God will take good care of you
Until we meet again
To all who have signed Mar's guestbook "Thank you", and all the support i have received from friends & family "Thank you"
Much love to you all
Sam.XX
Tuesday, April 5, 2005 3:04 AM CDT
Hiya People,
Just wanted to ask people to keep Spencer & Gage in there thoughts and prayers as these guys are awesome battlers against the monster we know as CPC. I check in on all our CPc buddies and send prayers that they survive.
Onto my precious Fat Face, well its 8 days until his 2nd Birthday, on April 13th my Bouncing Tigger would of been 2. I keep dreaming he's eating chocolate cake and playing peek a boo. I wake up sweating and crying, but hey thats grief for you, its not any easy road infact it seems to get harder. I seem to go into shops at the optimum time when there playing a "Marcel Song" but then there are so many I associate with him. I go and buy Tyrell clothes and see the same outfit in Marcel's size and I breakdown and have to leave the shop. Mar's pictures are everywhere and i wanna take them all down cos looking at his face just reminds me of what I cant hold or kiss anymore, but i cant take them down cos it would upset kids. In fact i cant cry when it overwhelms me cos the kids get upset so i keep it all to myself and breakdown and night times and in the early hours of the morning. Its been 24 weeks and 2 days since he's gone and sometimes it feels like a lifetime and i question was he really here at all or was it just a dream with a nightmare ending.
Anyway i have wittered on far too much, i will post on Mar's birthday.
TTFN
Sam.XX
Friday, March 11, 2005 7:04 AM CST
Oh Mar how I miss you, it seems to get harder and harder. Your pictures are all over the house, I carry one in my purse and everytime i look at them it like a knife in my heart. My dreams are of you, I fall to sleep thinking of you and wake up thinking of you. I see a child in a buggy with curly hair just like yours and i think how lucky that mum is to be able to do such a simple thing as push her child in a buggy. It hurts like i never knew i could hurt.
Mummy loves you fat face.
Wednesday, March 2, 2005 4:21 AM CST
Hey two updates in a week!
Well I have some nicer news to let you all know about.
Im 20 weeks pregnant with a little girl, my very own comfort baby. We found out yesterday its a girl, and the name is going to be Tiana Destiny, which means Princess Meant To Be..... So very sad as this little girl wouldnt be coming into this world if my precious fat face hadnt got his angel wings, now im bawling AGAIN.
It was knee jerk reaction to Mar leaving us, I said to Mikes I WANT MY CHILD BACK, and i know I cant have Mar Mar but i just have an deep aching void full of love. Thankfully I fell pregnant straight away and a friend of mine said your gonna have your very own comfort baby, this baby will provide you and the rest of the family "comfort" nice way of putting it. So as im sat here typing this entry and feeling Tiana kick and wriggle in my tummy and my mind is forever on Mar Mar and what would he be doing.
Niquey and Tyrell are totally made up that a new little sister is coming, my due date is 23rd July. What is strange is that Mar Mar was concieved on 23rd July 2002 and the star sign Cancer!!??!! So if Tiana comes on or before 23rd July she will have the star sign cancer!
So to my precious fat face mummy loves you Mar Mar and Tiana gonna know ALL ABOUT her big brother who is in heaven.
To everybody who has or is dealing with any type of cancer, I wish you strength and the will to beat this monster.
To my special CPC buddies Spencer and Gage who have both had relapses you guys are in my heart, thoughts and prayers every single day.
Many blessings
Much love to Tigger Bouncing Fat Face
Mummy aka Sam.XX
Thursday, February 17, 2005 6:37 AM CST
Well its been along time and I would love to say that im in a better state of mind but quite simply "Im Not" every day without Marcel is like a knife twisting in my heart. The anger is stil there, the disbelief is still there and my heart aches with sadness. The one more kiss, one more cuddle, one more smile.
I feel i owe it to Marcel to continue his journal and maybe, just maybe its a place of solace for me to express how i feel and also how his daddy, brother & sister and rest of family are.
I keep updated on the other CPC suffers and feel so sad how the demon of CPC is still wrecking lives and causing destruction, death and pain to anyone in its path.
Since Mar passed I have tried my utmost to get family counselling to no avail even petitioned Tony Blair the PM! im not giving up it just adds to my distress.
Both Niquey and Tyrell are taking Mar's death inwardly which frightens me, and Mikes has so much anger its frightening. My constant crying releases my sadness but for the other family members im scared.
I will update Mar's site more frequently so if you have passed by thanks and please sign our guestbook.
Mummy Loves You Fat Face Bouncing Tigger.
TTFN
Sam.XX
Saturday, November 20, 2004 3:40 AM CST
Well its been over one month since my precious fatface has gone, will I ever feel normal, will my family ever laugh, smile and enjoy life again.
Our loss is so deep im scared of the feeling that grief brings as it is so very over whelming. I see mar everywhere i go, i still buy him things and still smell him on my clothes and in the house. I feel very Raw, I pretend to the outside world that im coping and dealing with Mars death but i know deep down im not, how can I.
Mikes and I went to doctors to ask for some family counselling, that was nearly 2 weeks ago and still nothing! nobody cares, everything just carries on as normal.
I would like to say a massive thank you to everybody who contributed to Mars bench we raised the whole amount of £1,198, thank you, thank you! Also a very very big thank you to Parking Services where my Mum & Dad work, right from the beginning the whole crew were so supportive and kind and you guys & girls have really touched me and my family.
Mars grave has been planted with some snow drops & bluebells in the shape of a M, went up yesterday and the bulbs are just beginning to sprout through the soil. My mum put a Father Christmas on top, in the new year we will be getting a head stone aswell. Its pretty and quiet and beautiful place, rabbits, cows and sheep, horses and squirrels and beautiful trees & wild flowers.
Anyway thats it for me, I probably wont update now for a while as I find it far to traumatic.
Much love
Sam.XX
Tuesday, October 26, 2004 3:26 AM CDT
Hiya People,
Dont quite know how to put this in words and I know many of you already know that Marcel Michael Hill got his Angel Wings on Sunday 17th Oct at 11.25. Born on a Sunday, Christenend on a Sunday, Got his wings on a Sunday and laid to rest on a Sunday. He truly was the Lords child, we just borrowed him for 18 months & 4 days. My heart aches and i feel very very angry. Believe me when I say WE HAD NO WARNING that Mar was so close to death. The scan 28th August was no change! we had found out at 1.20pm Oct 15th that the tumour had grown back, Mar was at that time putting his empty Winnie the Pooh dinner plate on his head! and dancing to the Tweenies! when i got the call from Dr Pople. I went into a state of shock and disbelief as Mar was so very well? eating, dancing, playing and acting the usual clown. He had his bath Friday night, and went to bed quite late at 9.30, I crawled in with him at 12.30 and he woke up and was breathing funnily. Mikes and I gave him vapour rub and all the usual things until about 2ish when we took him to our local A&E department. They discharged us saying it was a chest infection and we felt like we were Prats in making such a fuss. We left A&E at 4.45, drove out of the carpark, I was in the back of the Jeep with Mar on my lap and Mikes was driving. Suddenly Mar went limp in my arms and breathed out and didnt take another breath. That was it, no fight, no nothing just simply stopped breathing. I am being so graphic cos I want everybody to know, it was very peaceful, God has him in his arms for what purpose I will never understand.
What I will say is if we had any tiny idea that CPC was doing what it does best Mar would of been taken to the far corners of the earth to be saved.
I so miss my baby fat face, my hopes, dreams and aspirations for him are laid to rest with him, im very angry and hurt and my heart beats for Mar.
A massive thanks to my wonderful parents who organsised the most beautiful Memorial (Sunday 24th Oct), Mar was laid to rest in a beautiful Woodland, with all manner of wildlife and cows & sheep etc roaming in the fields nearby. He is under a Oak Tree, and we have had donations instead of flowers going towards a Memorial Bench costing £1,197. So we can all go and visit Mar's resting place and just sit and chat to him.
My best friend said before the service that we would see a rainbow from Mar and if you would of seen the weather that day a rainbow was near on impossible OR SO I THOUGHT. After Mar was laid and covered by Mikes and the other men in the family we walked back from the Wooded area and as we came into the open fields a MASSIVE, awesome RAINBOW was in the sky and I heard all the people behind me gasp. There was Mar's slider up in heaven. What a sign.
So I have chickened out of writing this journal but I owe it to all the many people who have supported me and my family throughout the last year.
Much love to you all, love hug & kiss your loved ones, every breath you take is so very precious.
Namaste
Sam.XX
Monday, October 11, 2004 5:59 AM CDT
Hiya people,
Very quick update as I am in work! yikes!
Just to let everyone know Marcel has an MRI scan this Thurs 14th Oct at Frenchay, will post results when i get em.
TTFN
Love, hug & kiss your people
Love Sam.XX
Wednesday, October 6, 2004 6:28 AM CDT
Hiya People,
We have a date for eye surgery! its 29th November 04, however Dr Herod has put us on the cancellation list and has guaranteed that Mar will have his op before 29th Nov! Basically we are on 24/48 hour call, so if somebody cancels then Mar will go in, apparently its a straight forward squint surgery with a little extra, and it only takes 40 minutes in and out same day, BRILLIANT!
I bought Mar a totally gorgeous Pumpkin outfit as he missed Halloween last year cos we were having surgery, making up for it this year! He doesnt like the hat but i will post piccy's on site when he sits still for 5seconds.
We have MRI very soon, just awaiting date but it SHOULD be in next few weeks.
We are 17 days from our CPC dx One Year Anniversary! many times i didnt think Mar would make it, he's baffled all the oncogists and brain surgeons in Bristol!
Tyrell has BIG Tae Kwon DO grading next week, butterfly's already so he has been busy high kicking his sister, hmmmmmmmmm, kids dont u just love em.
Anyway thats all from me, til next time people
Love, hug & kiss your people
Sam.xx
Wednesday, September 22, 2004 6:18 AM CDT
Hiya People,
All is well with us, Marcel has been prescribed Melantonin to make him sleep at night which is total bliss as he was waking up 17 TIMES! now he has his med at 7pm and by 7.30 he's like a little wilting flower BLESS! So I am feeling more "normal", im not happy that we have to resort to drugging him to get a decent nights sleep but its for his own good aswell. Since he's on this med he's like a little bouncing tigger when he wakes up instead of the cookie monster!
Eye hospital have said that operation should be within the month of Oct, scarey or what!
We go to see Prof Stevens next Thursday 30th Oct, this is to keep tabs on Mar and his behaviour, he really is hard work. Im able to type this now cos im at work, whereas when im home i dont get even one minutes peace IM NOT COMPLAINING HONEST.
We had a lovely visit on Friday from Ange & Dave from Scotland, they lost there grandson Ross in Feb 2002 to CPC. Ange has been a wonderful support to my mum, she totally understands what mum is feeling as a Nanny.
I asked lots of questions about Ross and his death and had a bit of a cry and then felt loads better when Ange said how WELL Mar looks, mind you he was climbing on the table while we were all trying to have our lunch! They also brought Mar, Niquey & T alot of chocolate to Marcels total delight he stuffed his fat face and then gave Dave a big kiss when they were leaving!! Mar never, ever gives kisses so Dave was highly honoured.
Niquey and T have been doing really well, I was told by Niqueys footie coach that she is the top 3 in the country for her age as a goalie! now she decided to give up footie and do Hip Hop classes, after i bought the boots etc, etc!
Tyrell is now training for his final belt the Black Belt, so im really proud of ALL my children
TTFN
Love
Sam
Monday, September 13, 2004 7:59 AM CDT
Hiya People,
Well mother and I went to see Proff Stevens on Thursday to chat about the CT scan rsults and Mar in general. Basically his "not sleeping" is down to his bio thingys being disturbed so we have a natural hebal remedy called Melantin, which works GREAT!! Yeah we actually got some sleep Friday night. Prof said CT was too distorted to read properly but short reading is there is no change from what they can see. A full MRI under GA is being scheduled for Oct.
Everything ok, Mar eating, sleeping abit now, playing, having amazing tantrums etc etc.
We have to see Prof every few weeks now which is good cos we kinda got lost in the "system", so we go to clinic again 30th Sept. We also have 4-5 hour eye appt on 5th Oct plus on the 23rd October we are ONE YEAR ON exactly to the day of diagnosis!
Take care people,
Love hug and kiss your loved ones
Sam.xx
Saturday, September 4, 2004 3:52 AM CDT
Hiya People,
Well the letter received from Mr Pople yesterday states that "there is little change from scan on 29th June"???? dont know what that exactly means? is there change or is what Mr Pople said just a figure of speech? I mean this is the Director of Neurosurgery no less! the same man who gave Mar 2-3 months to live on the 4th June. I dunno so i sent a quite strong letter to Proff Stevens stating that Mar hasnt been seen by ANY proffesional since the 27th June, sorry if this offends anybody but he is SUPPOSED TO BE DYING! you would think that SOMEBODY at the hospital(s), would at least pick up the phone and say "How is MARCEL" no its just left that when he gets ill bring him to the hospice and we will sort out pain relief. So much for the "Caring NHS"
Anyway less of the depressing stuff, Mar is absolutely great which is totally the main thing and for which I thank God every single day. At the moment he's dancing to Sugababes "lost in the moment" quite apt! and he's rolling around with his duck without a care in the world. He rarely sleeps and when he does go off he wakes every 2 hours sits up in the bed throws his duck on floor and that's, then his excuse to get outta bed to get it! not much fun at 2-3 and 4 in the morning. Friday morning me and Mikes had red rings round our eyes and massive bags, i seem to spend all of my days trying to get him to sleep and then when he goes its for about 45 mins.
He's happy and although demanding I console myself that if he wasnt so very strong willed he may not have got through this so well.
So thats all from me, as before our next appt is with Eye hospital on 5th Oct.
Love hug and XXX your loved ones
TTFN
Sam.X
Wednesday, August 25, 2004 2:06 PM CDT
Hiya People,
Im so sorry I havent updated earlier, i have just received numerous email's asking how the CT went!! well no news is good news as they say. Mar wouldnt co-operate at all, very long story but with me prancing round the CT scanner singing teletubbies go eh oh! and "where's daddy" finally got the lovely little brat to lie still for 15 seconds. They let us go straight after which is always a good sign, as if its bad news we get a visit from the men in white coats to go and talk in a little side room. So i got Mar kids and Daddy and we legged it to the car before they could change there minds, ha,ha. No joking matter behind my humour lies an emotional wreck but I think if it hadnt been for my sense of humour I would of cracked up by now.
So we wait until the hospital decide that i have been a good girl and I get told the results. I wouldnt be so relaxed if I felt Mar was unwell as you know by previous journals im not one to lie back and let the title "oncologist", "surgeon", "director of neurosurgery" phase me!!! If I felt for one milli second that Mar was unwell I would be at hos stamping, shouting and generally creating. So on that basis im not worried in the slightest, in fact im on top of the world at how Mar looks and is progressing.
When I went back to work on Monday one of the main comments from people who havent seen me for the last few months was "its so lovely to see such a big smile on your face". Or it could be that I have couch potatoed it out for the last 10 weeks with Mar and my face has got that fat!! ha,ha
So as soon as I have the exact CT results(not that the hos is ever exact)I will post on Mar's site straight away.
So til next time y'all
Hug, love & kiss your loved ones
SamXX
Sunday, August 22, 2004 3:32 PM CDT
Hiya People,
Just got back from Tenby, we had a lovely quiet, relaxing holiday. Mar was a total nusiance, and he has bitten his big bro on his cheek leaving teeth marks and drawing blood all because T took him away from the cooker. He also took a shine to a play egg at the apartment and anybody who came close to "the egg" Mar just screamed and screamed and pushed them away. He also woke up between 5 - 6am every morning to watch the teletubbies, deep joy, and as i was on hols and wanted to stay up to have adult conversation this meant I was having just short of 5 hours sleep! I dont know where he gets his energy from.
When we arrived back there was a letter from Bristol Eye Hos, we have an appt for the pre-op consultation at 11am on the 5th Oct. The op should be taking place within 6 weeks of this appt, scarey or what!
I go back to work tomorrow and Mar has a CT scan on Tuesday at 12.15 and kids are back to school in 12 days (not that im counting or anything!) ha,ha
Also I would like to send out my CONGRATS to my friend Corina who has just given birth to her 3rd child Jessica at 9.17pm last night, cant wait for a cuddle!
Also is anybody who has a seriously ill child and would like information of how we helped Marcel please contact me on my email. I cant promise that help will definately be given but I will certainly pass your information onto the "Amazing Man" who helped us.
Thats all from me. TTFN
Love, hug and kiss your people
Sam.XX
Sunday, August 22, 2004 1:41 PM CDT
Hiya People,
Well just got back from Tenby which was a very quiet, relaxing holiday! cant wait til the next! ha,ha.
On our return a letter had arrived from the eye hospital and we have an appt on Tues 5th Oct for our final appt before surgery!!! how scarey is that! so Mar will have his eye corrected sometime in late Oct early Nov.
Also we have a CT scan on Tuesday at 12.15, im back to work tomorrow and kids go back to school in 12 days!! not that im counting or anything, ha,ha.
Congrats to my buddy Corrina who had her new edition enter the world last night at 9.17pm 7lb and 4oz her name is Jessica and I cant wait to have a cuddle. With Mikes looking on saying "NO MORE KIDS".
The most important thing that I wanted to update was the fact that many people close to me know what Michael and I had to do to get rid of this cancer and it isnt orthodox or known about at all. Cryptic i know please bear with me, anyway, we have now been given authorisation by the person who helped us to let other children who are facing this terrible disease have this mans help. So if you want to know more or you have a child who has been given "NO HOPE" or is seriously ill, give me an email and I will put you in touch with Mr Watkis.
As Always LOVE, HUG and KISS your loved ones
TTFN
Sam.XX
Tuesday, August 10, 2004 4:30 AM CDT
Hiya People,
My last update before we go away! not looking forward to the 3 hour car journey as Mar is soooooo totally intolerable on any car journey let alone a 3 hour one, Niquey wants to travel down in her uncle's car to get away from Mar, he really is that bad. We took the kids to Longleat last week and its only 45 minute trip and by the time we got there Mar had stripped ALL his clothing and was having a massive tantrum cos we wouldnt let him get outta the car seat. Hmmmmmmmm lovely child!
Mar still the same, not alot of sleep but the heat has been really unbearable last week. His sickness has been really good only a couple of times, ummmmmmm he's very, very demanding and spends most of each and every day throwing himself on the floor kicking and screaming which is great, especially when you are dealing with the never ending school holidays and bored children.
By the end of last week I was all but at the very end of the line, and thankfully my mum and dad and there other nan and auntie had ALL the kids for a whole 24 hours. If they hadnt i would of been the main attraction at Bristol Zoo GRRRRRRRRRRRRRR.
Today im meeting up with a friend that i made when in Oncology as her son has cancer sorry cant spell the name of it, doh! So looking forward to seeing her and the children.
Thats all from me, update with the news of our holiday!
Much love, kiss and hug your loved ones
Sam.XX
Monday, August 2, 2004 6:26 AM CDT
Hiya People,
Another slapped wrist for not updating earlier! Hope your all totally enjoying kids school holidays, i know i am (smile).
Mar doing well, he hasnt sicked up now for 8 days!! apart from a tiny amount when Mikes decided to throw him up in the air and then do handstands straight after his dinner, SMART, doh! My fat face has had a growth spurt and now looks a good 2 years plus, I keep getting strange looks when he's in his buggy drinking out of his BOTTLE.
Today im off to meet some of the other mums at Vassells park so the kids can do some fishing, good fun, if your reading this Corrina MIDWIFERY is not my Vocation im not listening to twinges!!! scarey!! ha,ha,ha Im sure Wendy will agree with me.
We have a CT scan booked for Tuesday 24th August which is the day after i go back to work, but if i go by how Mar is in himself he is soooooooo very well. He makes so much trouble on his brother & sister, he really does control everything they do. I said to my mum and dad that Marcel totally rules the house in every single aspect.
So thats all from me, were going away in 12 days so kids totally excited.
Take care of y'all, love, hug and kiss your people
TTFN.XXXXXXXX
Thursday, July 22, 2004 4:17 AM CDT
Hiya people,
Well Mar is cool, he took his FIRST UNAIDED step on Saturday, to much applause and mayhem! He has been cruising round the furniture since 10 months but he has lacked the confidence to go it alone, til now. Its gonna be a long journey for him with walking cos the tumour was located in the spinal cord and adjacent area which controls balance and co-ordination etc. So for him to being going this well is a good sign cos whatever has been shown on MRI is in the same area.
I just recounted a story to a friend of mine who is also called Sam, who sadly lost her son Harry Beresford-Taylor to CPC and I said i would post this humourous tale on Mar's site. Well I was in Asda the other day with Mar doing a weekly shop that i usually do online. Well Mar found it highly amusing to throw everything i was putting in the trolley out of the trolley and I was getting extremley agitated & mad with him. Then as i rounded the corner he deftly grabbed the packet of bacon and done a throw a West Indies bowler would of been proud of and it HIT an little old lady round the back of her head!!!! the Shame of it and i was apolgising profusely and she just glared at me. Needless to say by the end of me shopping trip I was exhausted, tearful and I very nearly gave up half way through. I got up my mum's with a massive headache and nearly in tears, and when i told Mum I eventually saw the funny side.
Mikes said i was brainless (thanks) to even consider taking Mar shopping in light of the fact the kid has had absolutely NO BOUNDRIES and is in Mikes words Marcelus Hillus Bratus! So the word NO is in full effect at our house to which Mar takes no notice until Mikes with his deep booming voice says NO which such force it brings me to tears ha,ha,ha! The other night we were sitting down to a roast dinner and Mar wont sit in his high chair so I let him sit next to his beloved sister but then he decided he wanted to climb ONTO THE TABLE midway through dinner, ahem, I pretended I hadnt noticed and the kids were sniggering and Mar was smiling and clapping until Mikes jumped up slammed his hand on the table and said "Sod Cancer this kid has to learn to behave and climbing on the table at any time i will not TOLERATE" titter, titter! sorry i find humour in absolutely everything at mo reckon its my safety mechanism. So I grabbed Mar off table kicking, screaming then holding his breath in temper! I ended up with a cold roast dinner and Mar sulking for at least 20 mins, copping his Dad filthy looks, ha,ha,ha.
So thats me now totally updated.
Til next time, love, hug and kiss your loved ones
Sam.XX
Monday, July 19, 2004 2:52 AM CDT
Hiya People,
Well the long awaited (NOT) school holidays are upon us, long lazy days of rain, bored children & the odd toddler tantrum thrown in for good measure! deep joy.
Well Mar has been sick alot lately, all last week he pretty much threw up after every meal. This makes me extremley nervous and agitated aswell as upsetting for Mar and my other two to watch there brother being ill is scarey. Having said that he is really well in himself and when he was been ill he just carrys on doing what he was doing before, like it is totally no big deal. He is teething horribly love his fat face, and cos he's teethed all over the place the last few are having to push up between gaps which is causing Mar to get quite fretful.
We have a CT scan on the 24th August which seems ages away, but if i had my way he would be scanned 24/7. So as usual a watch, wait and see senario still going on, my instinct says he's ok and if he wasnt throwing up then i would be totally 100% happy with him BUT as always there is a BUT.
So til next time, oh and please pass by Bailey's page as he has an all important MRI coming up this week and prayers and thoughts are always appreciated.
So love, hug and kiss your loved ones
TTFN
Sam.XX
Tuesday, July 13, 2004 1:10 AM CDT
Hiya People,
I cant believe its been since the 2nd July since i posted anything on here!! Sorry all, mum got out her whip and beat me to write a journal, ha,ha sorry mum.
Well Mar is sooooooo very well, his stolen Martinque's tamagotchi and WILL NOt release it, she's moaning saying she needs to feed it and discpline it and i said "yeah just like Marcel". Well Mar can climb upstairs really, really fast and then slids down on his belly, which he finds totally hysterical. We had docs come out Friday and access his development but got to wait results. We have a CT scan coming up in the next 2 weeks and a futher MRI in about 2 months.
So thats all from me thanks for checking in oh and "Thanks" to the Mattesons for your guest book entry as it really means alot to me and the fam that your take time out to read Mar journal! and fingers, toes and everything crossed for tremedor and Spencers good health.
Til next time people, love hug and kiss your people.
Sam.XX
Friday, July 2, 2004 11:47 AM CDT
Hiya People,
Just downloaded NEW pictures of Mar on the other pages of his website so please have a look!
First gotta say a BIG THANKYOU to Wendy, Corrina, & Desiree who are parents at my kids school. They bought Mar a TIGGER that he absolutely loves and I got a beautiful bouquet of flowers "Thanks so much"...:-)
Just to update that the senior pedeatric radiologist "Neil Stoodley" reported on Mar's scan today and said that there is ABSOLUTELY NO CHANGE since 4 weeks ago. This is excellent news obviously cos CPC doesnt just STOP growing??? Our Proff Stevens thinks that the scanner was picking up a kink in the brain stem causing the fluid to back up (hence the symptoms) and the small unexplained thing in the ventricle?? well im not an oncologist, brain surgeon or radiologist BUT being a parent and observing Marcel I would say that right here, now, at this moment in time, Marcel is better than he has ever been since being put on this earth 14 months & 16 days ago. Who knows what the future holds but im damned well sure im not wasting a single solitary minute with ANY of my precious children. So our eagerly awaited first holiday since Mar's birth is going ahead on the 14th August we will be tripping off to Pembrokeshire, Tenby. This is with great thanks to "THE JOSHUA FUND" who have a beautiful holiday home at Pembrokeshire and kindly offered us the use of it for one week! YIPEE!. So im sure my fat face will get an even fatter face by stuffing candy floss, ice cream & chips!!! YUM.
So thanks for looking and keeping up with our never ending rollercoaster ride with CPC.
Til next time, love, hug & kiss your loved ones
Sam.XX
Wednesday, June 30, 2004 3:09 AM CDT
Hiya People,
Ahhhhhh finally managed to download a latest piccy of mar!
This was taken up mum's a few weeks ago doing his favourite activity "EATING" ha,ha. He is also wearing his Daddy's favourite football team's shirt, Liverpool! cant stand footie myself.
Soooooo finally got a phonecall from Mr Pople late last night, and he's says that the scan showed that the tumour hasnt grown???? bizarre or what, and when i asked him if that is how CPC behaves (knowing full well it isnt)he hmmmmmmed and ahhhhhhhhed and then said "Well no, it isnt" he said he would of expected significant growth causing Marcel quite a few problems??? if we all scratch our heads and shrug our shoulders that is what the Surgeon, Radiographer & Oncologist are doing right now! Obviously we are absolutely estatic but as before are we living with just scar tissue OR is something more sinister?? all I can go on is how Marcel is in himself which is really, really well. He is at this moment chasing our poor cat!
So what is happening now is ANOTHER scan in 3-4 weeks time unless anything happens in the meantime.
Thats all from me as Mar has got bored of chasing Kayfer and is now back DEMANDING my full undivided attention.
Til next time
Love hug and kiss your loved ones
Sam.XX
Tuesday, June 29, 2004 6:24 AM CDT
Hey people,
NO NEWS! im really sorry for all u guys that are checking in, I rang Mr Pople's secretary yesterday and she was absolutely "HOPELESS". I reckon we have been spoilt at BRI cos we always have the results 2 hours after MRI, so anyway we went to see Prof Stevens today and he is on the case for us.
Marcel is absolutely bouncing with energy, he is eating well, sleeping (not so good!) and generally terrorising his big Sis and Bro. This morning he decided he didnt want his toast NO, NO, No he wanted Martinque's packed lunch!! and so on the way to school he happily munched her ham sandwiches and I had to rush back home and make some more!! total nightmare. He's sleeping right now hence my undisturbed time at my puter!
Also Prof Stevens is absolutely baffled as to "HOW" & "WHY" Mar looks so well?? Sandy my favourite nurse burst into tears when she seen him cos he looks so well, and she has been so upset since our scan 4 weeks ago.
So still waiting, but i will update as soon as i have any news.
Thank you very much Mr Watkiss for EVERYTHING you have done for us and Marcel.
Peace, love and Many Blessings
Sam
P.S Love, hug and kiss your loved ones
Thursday, June 24, 2004 1:45 PM CDT
Hi People,
Sorry to keep you all in suspense but we will not know MRI Stealth scan results until Monday at the very earliest as Mr Pople is in Ireland.
The Stealth scan took nearly 2 HOURS!!! I was having a total nervous breakdown as the minutes were ticking by, but Mar bounced up after GA wore off and ate for England. We all went up to see my mum afterwards and he was opening all her kitchen cabinets and trying to dismantle her kitchen! this was just one hour after coming round from GA!!
I found out that the Stealth scan is different in a normal MRI because it concentrates on the one specific area, and seeing as he was scanned for 2 hours then we should know everything we need to know.
So thats about all from me and as usual I will update with "The News" as soon as I have it.
Til next time y'all
Love, hug and kiss your people
Sam.XX
P.S Marcel is as im typing destroying the contents of my bag, i.e RIPPING up all important appt cards and throwing behind him!!! bless his fat face
Wednesday, June 23, 2004 4:34 AM CDT
Hiya People,
Just to say we have an MRI Stealth scan at Frenchay tomorrow at 1.00pm!!!!! not a 3D scan but its better than nothing. At least we will know for absolute sure what is going on in Mar's head. This short journal has taken twice as long to type as Mar is sat on my lap smashing hell out of all the keys and destroying the monitor. Ahhhhhhh love him!!!
So next time I update will be with "The News" im not saying anymore for fear of burbling on and on and boring you all.
So til next time, love, hug & kiss your people
Sam & Marcel (aka Fat Face).XX
Sunday, June 20, 2004 11:18 AM CDT
Hiya People,
Sorry its been a while since update, my computer had meltdown and had to be wiped and i have only just got back online.
Ok first I have a few people to thank, first Emma Fuell, Martinque's wonderful teacher, thank you so much for the support you have given Niquey its lovely knowing when she goes to school that your there looking out for her and also a shoulder to cry on, which I know she has been doing this lately. Also to my buddy Marlene (dont see you enough chick) thanks for the lovely poem and last but not least Karen & Corine thanks for the card & bear!
Ok onto my little fat face, apart from a nasty bronchiol infection he is absolutely fine(?????). It certainly doesnt look like a child who's time on this plane is nearly up!!! at this very moment he is banging on the patio windows as his big bro is outside playing ball and Mar wants to go out aswell. Im still waiting on the good ole NHS to give us a scan and when I asked last week to go private to a) speed things up and b)ensure that we actually get the 3D scan, however Janice, Mr Pople's secretary advised me that this would not be necessary as it was in hand. Hmmmmmmmmm, Oh i must also say that Mar can now climb!! so he's has much pleasure in climbing on the setees and then crying cos he cant get down.
I have contacted St Judes but havent received a repsonse as of yet??
Thats all folk, I will update when I have any news til then, as always love, hug and kiss your people.
SamXX
Monday, June 14, 2004 4:05 AM CDT
Hiya People,
This is a ranting journal so be prepared! I havent updated for a few days because i was so angry!
Well I had a phonecall from Mr Pople (brain surgeon) and I was expecting the date for the 3D scan, but NO apparently it takes two weeks to set up the sensitivity of the scanner to be used on Marcel so instead we have been offered another MRI in take a guess??????????/ 4 WEEKS!!!! im mean im no brain surgeon BUT if it takes 2 weeks to set up the 3D scan then why arent we having that in 2 weeks instead of waiting 4 weeks for an MRI! Im so very, very angry and feel so very very helpless, i mean this million pound scanner which both me and my mum and dad donated money too is LIFE SAVING and PIONEERING and yet presented with a child that desperately needs this type of scan and we cant get one!! I have a good mind to ring up "The Sun" and let them read my whole journal and so a "warts & all" story on the sad, sad NHS.
Mar has been great all week until the early hours of the morning when he woke up at 2am screaming the place down cos he wanted to play downstairs and he wouldnt go back to sleep until 9.30 this morning so im sat here bleary eyed with a banging head and feeling totally and utterly depressed. Great start to a new week eh!
So if anybody any good ideas I would much appreciate them.
Til next time y'all
Love, hug and kiss your loved ones!
Sam.xx
Wednesday, June 9, 2004 3:03 AM CDT
Hiya People,
Just wanna say that no matter what the medics say in this country WE WILL NEVER EVER GIVE up on Marcel! I mean if we listened to what the doc's said in Oct 2003 we would have been buying Marcel's casket in Dec 2003!!!! I do not believe he will die and I have total faith in a very special man who has got Marcel through this to date. Everybody can feel im in denial but he's my flesh and blood and i JUST KNOW he will make it, just as I knew he was ill for the last 10 days I knew he would be ok eventually.
If the 3D scan shows it is definately CPC then Harriet of The Sun has kindly said they will do all they can in getting us to America to see "The Best".
I have recieved some truly wonderful emails in the last few days and all my family would like to thank u all for expressing yourself in Mar's guestbook and my personal email.
So im upbeat not because I feel I have to be but because Marcels death is not an option!
If u could all see Mar right now he does not look like a child with 12 quality days of life left!!! he's bouncing up and down to the "The Darkness, I believe in a thing called love"
Anway thats me outta here.
P.S James dont give up on be "i will be back"
TTFN
Love hug and kiss your loved ones.XX
Tuesday, June 8, 2004 4:29 AM CDT
Hey people,
My fat face is doing great, he's happy, playing, kicking football's and generally making a nusiance of himself.
My dearest mother (bless her) contacted our daily newspaper The Sun and requested that they run a story on Marcel in a hope of raising the necessary money to get us to St Judes in America. Well boy didnt she open a huge can of worms!! The Sun contacted Mr Pople's office and in turn i had a "Not very happy" Mr Pople on my telephone for the last 45 minutes. Basically the Sun/Mum's intervention has gotten us a scan on the new million pound scanner which reflects 3D images!!! YEAH!!!! this will tell exactly what/where/how etc is going on in Mar's head. No second guessing, then Mr Pople is looking to insert a drain NOT A SHUNT in Mars head to get rid of fluid and make my fat face a happier bunny.
If you could see Mar right now you would never ever believe we have been told this totally devastating news, he's dancing to D12 my band!!! he's really clingy but then he always has been so for the last 4 days I have absolutely NO TUMOUR signs! no excessive sleeping, no vomiting, no irritability NOTHING.
I dunno, just taking every hour of every day as it comes, mum took 63 photos of Mar on Sunday IN THE SAME POSITION, POSE much to my Dad's amusement! her explaination was she's wait to capture "The" photo???????
Anyway people, today is a good day
TTFN
Love, hug and kiss your loved ones
Sam.X
Monday, June 7, 2004 9:58 AM CDT
Ok people!
This journal is probably as bad as it gets!
Dr Pople rang me at 1.30 this afternoon and both my mum and Michael were present when i took the call. The medical profession has given Marcel 2-3 months to live and 2 weeks left of quality life. Im typing this and it just doesnt seem at all real, im thinking what will i get the kids for tea and what does Michael want? Mikes hasnt eaten since last week Thursday.
Ummm really dunno what to say to everybody?? Thanks Patti for your advice and for helping my family through this, it looks like St Judes is the only option so I will be contacting them and seeing if they would be willing to treat Mar. America seems to have cutting edge technology and unfortunately England is lagging way behind.
Thats about all from me, feel free to email me or write in Mar's guestbook but please dont ring me as im up and down with emotions as im sure you will understand.
Til next time love, hug and kiss your people.
Sam
Saturday, June 5, 2004 1:36 AM CDT
Hi people,
First of all I would like to say a very BIG THANK YOU to all the lovely messages in Mar's guestbook!
Well my dear Mum and Dad have cut short there holiday in Thailand and met me and Mikes at Childrens yesterday, bless them they travelled non stop for 24 hours and even brought there suitcases to the hospital they didnt go home and drop them off first.
Well from the Brain Surgeon's point of view there is no hope now as he explained he operated 4 times on a little boy with CPC and all that happened is the tumour came back quicker each time!!! so basically he said to put Mar through such a massive operation only to have the enevitable happen anyway would be senseless. The MRI scan has shown the tumour to be very tiny not as big as the CT scan showed but hey big or small its still CPC, i think everybody is really appreciating how agressive this cancer is, 3 weeks it spawned and started to invade again! So the surgeons advice really is to take him to a hospice and keep him in a drug induced coma (morphine for pain) until the tumour claims his life, I mean can anybody in the whole world parent or not imagine sitting day after day next to your childs bed watching the tumour stake claim to there existence. Well the saddest fact is many many parents have had to do exactly this and all i can do is pray to God to have mercy on Marcel. The tumour disappeared before and its can DAMN WELL disappear again!!!!!!!!!!!!!!!!!
At the moment I feel very calm, I was hysterical for 16 hours and then I cant explain what happenend, dunno if its cos my mum and dad are home and they always make things right. Or im still in denial and CPC WILL NOT CLAIM my precious fat face.
I am now waiting for Mr Pople (brain surgeon) to ring me Monday to discuss what they are going to do with the fluid build up in the ventricles, cos this is a massive problem at moment. Mar is on a cocktail of drugs at mo, so he's still smiling and playing and eating for England, I wish i could master posting pictures on the site so u could all really appreciate how totally gorgeous he is, bless.
So im here clinging on to a small light in the distant dark tunnel saying that we will be ok and Marcel will celebrate is 18th birthday, 21st, 40th and so on and so on!
I will update my journal Monday with information about the "next step".
Sorry if the above is abit non sensical cos im peacefully strung out! if u know what i mean
Take care y'all and always always love and hug your people.
TTFN til Monday
Sam
Thursday, June 3, 2004 1:34 AM CDT
Hello People,
Well this is probably the hardest journal I have ever had to write, my eyes are swollen from crying for the last 16 nad a half hours! As i said in my last journal i demanded a CT investigation and in 22 days CHOROID PLEXUS CARCINOMA has unleashed itself upon Marcel and our whole family again.
WHY, WHY, WHY we have had clear scans since Dec 2003, what was it hiding? playing some sick game? pretending to give us a normal life? So my precious fat face who at this present time is peacefully sleeping with his Daddy has to undergo a new brain surgery in the next few days followed by ????? I really dunno what to write! We are having a MRI with contrast on Friday to have a real good look at the devil himself, but on CT there is an abnormality the size of a peanut in the lower fourth ventricle this is causing intra cranial pressure, and the symptoms which go with that are vomiting, lethargy and so on! Im not gonna rant on cos right now im totally exhausted.
Can u believe 21 days ago we had a scan showing "NO RESIDUAL TUMOUR" to this! I know CPC grows fast but s***, talk about living with the enemy.
My poor dear parents are at the moment blissfully unaware having there dream holiday in Thailand, they wont be home til a week today. The surgery would be done by then, and i really dont know how or when im gonna break the news to them. This is soooooooo crappy and unfair and AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
Sorry to all my people who find out this way, i just do not have the strength to ring you all, please forgive me.
Sam
Tuesday, June 1, 2004 11:57 AM CDT
Hiya People,
Well Mar been sick alot lately combined with the ventricle fluid I lost it at oncology today which has resulted with Marcel having an urgent CT scan on Thursday! They just wanted to give me anti sickness drugs and that was it, so I basically said I feel the best course of action is to investigate the fluid build up and not give me antisickness as this is MASKING a potentially dangerous situation! if there is nothing to worry about then im an over anxious mother SO SHOOT ME!
The oncologists are only concerned with cancer and because we have only just had a clear scan there not worried! BUT I AM! even Mikes thinks im losing the plot, sooooooooo i got a massive headache, i feel sick to my stomach and nervous as hell. I havenot had a cigarette for 5 MONTHS!!! and guess what??? yep i had a few today! probably why i feel so ill, lol
Anyway people, will update Thursday
TTFN
Sam.XX
Wednesday, May 26, 2004 5:33 AM CDT
Hiya people,
Not alot to update really, Mar doing great, had a little scare last week (understatement) basically Mar scan showed absolutely no disease BUT it did show very slight enlargement of the four ventricles. Well my mum was the one to relay the info as I was in hospital myself, so when i heard I went absolutely mad/insane with worry! after ringing hospital they are totally not worried and just said they intend to scan in July instead of August BUT ABSOLUTELY NOTHING TO WORRY ABOUT. Hmmmmmmmmmmmmm dunno sometimes I think I worry for worry's sake.
Ahhhhh my wonderful mum and dad have offered to have ALL THREE children for me and Mikes to jet off to Ibiza in 4 weeks. Mikes worried I will be bawling for the kids, which i know i will but we sooooooooo need a break ALONE! ha,ha, Niquey commented that we better not come back pregnant!!!!!!!!!! cheeky ***. We are planning on taking kids to Butlins in August so they are fine about us going away without them. Not sure how Mum & Dad will cope, they have just jetted off to Thailand for the best part of 3 weeks, missing them already , i said they need all the rest they can get to cope with their wonderful Granchildren when they come back! Mikes mum and sister helping out aswell.
I think thats me all done.
Love hug and kiss the people close to u!
Sam.XXXXXXx
Monday, May 17, 2004 1:21 AM CDT
Hiya people,
We had eye hos appt on Wed and we have to see a squint specialist Dr Herrod who will perform the surgery. Apparently its a massive operation cos of the muscles at the back of the eye need work on aswell.
We see our onologist Prof on Thursday this week to discuss Mar's progress and discuss the facial nerve transplant which will take place at Frenchay Hos with the plastic surgery team.
At this present time Mar is standing by the sofa with his mouth crammed full of HIS SISTERS toast! he wont eat his own its got to be Niqueys. Mar is the most funny child I have had, he just plays to the crowd with his clown antics, Mr centre stage fat face!
Anway im off to work so have a good week y'all!
Ohhhhhhh thanks for all the messages of support with the MRI last week, sincerely appreciated!
Love & hug EVERYBODY!
Love Sam.XX
Tuesday, May 11, 2004 9:51 AM CDT
YEAHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!
Dont wanna keep y'all in suspense any longer than necessary, I had a message on my ansaphone today at 11.45.
NO TUMOUR NO TUMOUR NO TUMOUR! scar tissue reduced aswell, as u can imagine I was jumping around house, screaming, crying and general looney behaviour.
till next time y'all
love sam xxx
Sunday, May 2, 2004 2:22 AM CDT
Hiya People,
Got the date wrong for MRI, you probably already realised that the 12th May is on a Wednesday! doh! Its actually Monday 10th May, so we are exactly 8 days & 25 mins away. Im totally in a state, Mar been sick alot lately. Dunno petrified, frightened sick to my stomach actually there isnt enough words to explain fully how I feel. Apart from the sickness which the Prof doesnt seem concerned about Mar is good, no he's GREAT, total fat face. The poor cat has a life long friend as Mar will not leave his side, even when poor Kayfer tries to curl up and go to sleep Mar finds him and "Pretends" to lie down and go to sleep with him! this lasts a millisecond and Mar then try's to lie on top of the cat, by now the cat FULLY understands that 12 month old children are to be avoided at all costs. Oh and Mar cut all but 4 teeth, so thats 16 teeth in 5 months!!!! bless
Anyway our desperate wait continues, PLEASE PRAY for Mar.
TTFN
Love, hug and kiss your loved ones every single day!
Sam.XX
Saturday, April 24, 2004 1:54 AM CDT
Hiya People,
Well we have the all important MRI date, so please pray for Marcel. Monday 12th May at 9am my little fat face will have his G/A and praying we have the "CLEAN" results later that day. We also have the eye surgery appointment 2 days later and our other two children both have to see the orthodontist on the 16th so a very busy week.
We are having KAYFER the cat back on Sunday, my mum and dad have had him for the last year but he was becoming a nightmare so Marcel will have a little friend to follow around and pull his tail (JOKE)!
Thats about all from me, til next time.
Love Sam.
P.S DONT FORGET TO LOVE HUG & KISS YOUR PEOPLE!
Wednesday, April 21, 2004 5:27 AM CDT
Hello People,
Well alot going on with Marcel in the next few weeks. First we have our 2 monthly MRI as usual the hospital messed up the date and it should of been 28th April but it will probably the week after.
Then on the 12th May we have an eye hospital appt with Dr Markham to discuss the squint operation and I have been told this op will take place sooner rather than later, because at the end of this year Mar will be having plastic surgery to correct the facial palsy which will graft nerves from another part of his body to his face. We also have an appt with the Prof on the 21st May to discuss how mar's getting on and to outline the plastic surgery and who will be perfoming the op.
Onto Marcel, he now understands when his big sister & brother go to school in the morning that he will not be seeing them for a number of hours. As they are his main source of entertainment he gets most upset when they kiss him goodbye and head out the door! I get a screaming fit for at least an hour, then sobbing and throwing himself on the floor for a further half an hour. By the end of it im quite exhausted and wishing I was at work!!
I took him to look at a new jeep yesterday and he took a dislike to the sales rep and proceeded to throw everything on the poor mans desk on the floor and then kick and scream until he was bright red in the face, I then carted him under my arm to the car kicking and screaming! suffice it to say I wont be going back, the humiliation of it! I said to my mum he is turning into a GRADE A BRAT, Mikes calls him
Marcelus Bratus Hillus! ha,ha!
Life ticking on just great, my friend the other day commented on how wonderful he looks, and how big he is, and then she said "but i bet your always worried about him" this being the understatement of the year.....I told her until im the day I die be it 100 years old I will every single day be "worried, terrified of Mar getting ill"
The Proff said its early days but every single clear scan is another milestone, and we have come such a long way in a relatively short space of time, ESPECIALLY as 20% of the tumour was left in Mars head, this really does hit home that "Miracles" really do happen! I mean how can 20% of CPC disappear?? with only 3 bout of Chemo! well like I said the only proof is the passage of time. I count every single blessing that life has given us.
Thats enough from me blathering on, cant forget to say "CONGRATULATIONS" to my bessie friend who's just confirmed she's pregnant with her 3rd baby!! YEAH you go girl!!
Til next time,
TTFN
Love Sam.XX
Tuesday, April 13, 2004 7:44 AM CDT
Hello people,
Sorry havent updated since seen Prof, firstly all's well, he's pleased with how Marcel looks and his developmental milestones are all passed with flying colours. Prof also wanted him weighed and his size plotted on a graph well from birth Mar was above average, then the tumour took effect and he dropped to just below average and now he's well above average. This is to do with Growth by the way I didnt make that very clear!
Onto the Christening, such a lovely, lovely day THANKYOU to everybody who came along. He had some wonderful gifts and £210 in money which we will use towards activities for Marcel in the garden, i.e swings, tree house. The service was emotional, I really didnt think i would start blubbing but when the Rev mentioned Mar and the tumour and what a miracle he is, that was it, blubbing and trying not to completely lose it on the stage. Also have to say a big thanks to marcel's cousins Karen & Corine, also uncle's Wayne & Steven as they travelled down from London for the day also a very "Special Man" called Rev Watkis came down from London to celebrate the Christening. Without
Rev Watkis & God I really know we wouldnt of got through and be here today with Marcel so happy, HEALTHY and alive.
So that's me all updated, kids driving me insane as they are on holiday and the little darlings are BORED silly! Deep Joy.
L&L
Sam.XX
Saturday, April 3, 2004 0:46 AM CST
Hiya People,
Just updating to say we have an appointment with the Proffessor next Thursday 7th April at 10.20, this is to give us the all important MRI date and also to check Mar is ok, etc,etc. My wonderful Mum is coming with me just in case there is something i forget to ask and also she probably has a few questions of her own!
Mar is great, he can throw a mean tantrum so thats normal, he also has the most wicked sense of humour I have ever known for baby. He has quite a collection of ducks and his other nan (mikes mum)and sister Charlene took him out for a walk in his buggy the other day, well Haz wont take his duck in fear of Mar losing it and i forgot to bring it anyway. To cut a long story short Mar wanted to go to sleep but WILL NOT without his baba, and they ended up buying a new duck and Mar wouldnt even hand it over at the checkout they had to get another one for the checkout assist to scan! He fell asleep straight away and now Mar has a "Duck" in every port!
Well thats all from me, im sure I will see the majority of y'all at the Christening next Sunday.
Take care, love, hug & kiss your loved ones.
Sam.XXX
Monday, March 29, 2004 3:24 AM CST
Hiya People,
Doesnt time fly, i cant believe we are nearly at the end of March! I truly love April not only because its my precious baba's birth but Easter is so special to me.
Marcel is getting bigger, more demanding, more funny every single day. He keeps putting Martinque's hair bands on his head and pulling a really stupid face, he is such a clown! he has us all in hysterics, if he isnt dancing and shaking his booty to MTV he's getting himself locked in rooms, LONG STORY.
Well im at work, Mikes at work and life is well "Great" I really do thank God every single day, but I have always thanked God for my children and there health i have never ever taken "Life" for granted. Now my prayers have even more meaning behind them.
Mar's birthday in 2 weeks 1 day and his Christening Easter Sunday. To anybody who hasnt received a invitation and would like to come please feel free to email and i will put one in the post.
Thats all from me,
TTFN
Love to you all, hug and kiss your loved ones every single day.
SamXX
Wednesday, March 17, 2004 3:17 AM CST
Hiya people,
Seems like a long time since i updated Marcel's journal!
Mar doing absolutely great, he had his first shoes fitted at Clarkes at the mall last week Thursday. The lady commneted on how very strong willed he is, and he then proceeded to throw his pop on shoes at her then wouldnt let her try on his new crusing shoes and when we eventually got them on him he wouldnt take them off! so we left the shop with him wearing the new shoes and Mikes carrying him cos he wouldnt go back into the buggy, whoever said Cancer children are the most spoilt brats on earth are totally right. Oh and the shoe assistant took a piccy of Mar in his first shoes to which he frowned throughout the experience until a little girl sat next to him and then we had "BIG SMILES" teaching him young i know! the assistant said Oh Wow his hands are huge did you give birth to a rugby player, ha,ha.
Well developmentally im real pleased with how Mar's come on, he's now crusing around furniture, he crawls real fast and when he reaches his destination he pulls himself up with a "BIG SMILE" on his fat face. He has all his hair growing back it just looks like I have got handy with the clippers, we went to Asda the other day and i was in the queue and i man behind was making faces to which Mar was chuckling and he then said to me "Why did you cut off all his curls" I ummed and ahhed cos i knew he would be horrified when i told him why Mar hasnt got lots of hair, well when i told him Mar has recently finished Chemotherapy for a brain tumour the guy got all tearful and kept apologising. At first i was sad only because we are so judged on our appearance and Mar has still got a facial palsy and his eye is turned in quite badly, but then i thought well obviously Mar looks so well.
Anyway life abit tad more normal, Mikes back to work tomorrow which of course he is jumping up and down with excitement NOT. Im back to work on Monday, so normality is here, I vividly remember the Monday after we found out what was wrong with Mar I opened the bedroom curtains to see all the kids going to school and parents going to work and i just broke down and wept for about an hour because i would of given anything at that moment to be going "To Work" and doing "Normal" things. At that time I felt I/we would never be a normal family again, I swear I will never moan about having to go to work on a Monday morning again.
Mar's first birthday in 4 weeks and his christening 3 weeks Sunday, I am getting around to sending all the invitations out but if anybody wants an invite and hasnt received one just email me your address and i will post one out to you.
Take care all, hope your hugging and loving the special people in your life.
TTFN
Love Sam.XX
Thursday, March 4, 2004 10:58 AM CST
Hiya People,
Well Hickman line well and truly removed, Mar now sleeping the after effects of Anesthetic off, fat face!
Well we had a brief meeting with Prof Stevens and he is well and truly baffled but pleased that Mar scan is so good, he cant explain it and his parting words were "Whatever Magic you are using it is certainly working" hmmmmmmmmmm! Sister Kate who spent 4 months preparing me for Marcel's death and advising me of hospices for him to DIE IN, came to see us and was totally over the moon with the results! she said Mar will be in Medical journals as "The unexplained one" or "The miracle". We thank God, the power of Prayer. We actually seen the radiographer's result and it said "No Tumour" no "Spine enchancement" and no response when "Contrast" applied. The spinal tap has been clear of malignant cells for 4 months, the spine was never affected but they have to keep checking as the CSF flows around the brain and down the spine. We now go into a monitoring period and because Choroid Plexus Carcinoma is so very agressive we will be having MRI's every 8 weeks. I challenged the Prof about Hematology's diagnosis and he said because of the vascilarity or the tumour there is no possible way that it was anything other than CPC, it was defo not CPP which is the Papilloma version of CPC which is alot less agressive and has alot higher sucess rate.
So our 5 months of tearing out of hair, not eating, crying a river of tears in both frustration and emotion looks to cease for now. Who knows what the future holds but one thing is for sure our family will never be the same, and we never take anything for granted "Life" is too short so hug your loved ones and never miss an opportunity to tell them you LOVE THEM.
To my buddy Lis, I know your watching over Mar and thanks for all the signs, missing you too much to say.
Til next time people
Love, hugs and kisses
Sam, Michael, Niquey, Tyrell & baba Marcel.XXXXXX
Wednesday, March 3, 2004 11:37 AM CST
YEAHHHHHHHHHHHHHH!
It was CLEAR! just rang oncology and Raj the consultant read the radiologist report over the phone "no change since previous scan 18th Dec 2003, post op changes as scar tissue prevailant" when i questioned him, he said in laymens terms there is NO TUMOUR GROWTH, Thank the Lord! The oncologists are in a state of disbelief as we havent had chemo for 7 weeks, CPC is so agressive it grows within days and weeks as supposed to months & years. Also seeing as Dr Pople left 20% of the tumour inside Marcel's head this is nothing short of a "miracle". Dont ever get me wrong stopping Chemo was right for Marcel, for other children Chemo is the only way. We have done things to safe guard Marcel against this cancer its just things im not allowed to talk about on M's website. So please dont think that we thought "Stop Chemo and wait for him to die" we have done shall we say alternative things to get rid of this monster.
Just to update events from 8am to 1.30pm, I arrived at Day beds closely followed by my wonderful, supportive mother (thanks just isnt enough words) we were taken down for the scan just after 10am. Well first Mar was fighting the gas and air?? he just wouldnt go to sleep, as you can imagine i was near on hysterical, in the end the nurses led me out the room to my mum who was outside. We were told it would be about 20mins, so we waited outside the MRI room and the time went on until 30mins had passed and I started pacing and panicking. Eventually at 11.15 Mar was brought into recovery with a "CANULA" inserted in his hand?? I went absolutely ballistic (whats new) and demanded to know who authorised this as he already has a hickman line and we were made to keep the "infected line" in for the last 4 weeks due to this very MRI??? off the nurse scuttled and then as if by magic the Anethetist (spelt wrong) appeared and waffled on about contrast and thats how he does things, blah, blah, blah! Yeah soooooo who's lying then?? one guess, hmmmmmmmm the "Oncologists" give that lady a star, sorry for the sarcasm. Just enforces our reasons for stopping chemo, too many lies, cover ups and economical with the truth people! My mum was horrified, and the nurse who was caring for Marcel advised us to complain, apparently it happens ALL THE TIME!!! Mikes arrived right on cue and he when i told him he went to start ranting & raving but i just shot him a "Shut Up" look and explained all on the way back to day beds. Oh and the reason for the scan taking double the time is because they wanted to do lots of different shots of Mars head to make sure they covered every single angle, me in my paranoid state convinced myself it was because they had found something and continued to totally show myself up in the waiting room! Thank God for my mother!
Onto tomorrow, another anethestic, another op! we go to be in Childrens at 11.30 and Mar goes down at 1.30 for the HICKMAN LINE TO COME OUT!!! YIPEE! swimming here we come, oh and crawling around butt naked! not me I hasten to add.... for all who dont know the hickman line is a line of plastic (dunno technical jargon) that goes directly into Mar's major artery in his chest and burrows under the skin from the collar bone and comes out midway down his chest. It has what they call a double lumen on which they take blood from & deliver chemo through. Anyway another starvation for Mar and anathestic, love him, hug him, bless him, little fat face!
Anyway that's all from me, i will update tomorrow after surgery.
Thanks again for all the wonderful emails i have received & guest book entries, it really means alot to us all.
TTFN
love
Sam.XX
Tuesday, March 2, 2004 1:28 AM CST
Hiya people,
This is the last journal entry until the dreaded scan, I rang hospital yesterday and the scan is definately going ahead. So please spare a thought for little Mar tomorrow cos he gotta be starved from 5am because its a full anthestic. We got to be in childrens at 8am and the scan is scheduled for 10.45, scarey stuff, hopefully the next time I update it will be to advise you all of a clear scan.
Here's to a sleepless night, and pacing of hospital corridors tomorrow!
Take care
Sam.Xx
Sunday, February 29, 2004 11:50 AM CST
Hiya People,
This Journal Entry is Dedicated to LISA ANDREWS 17/10/59 -29/02/2004
Sad journal entry today! My bessie friend Lisa Andrews who I have mentioned in previous journals passed away today at 12.30. I received a telephone call from her hubby John at 1.15pm to say Lis had peacefully passed away.
I have known Lis and her family for the last 5 years and she was a total inspiration to me, we shared love, laughter and tears along the way. Lis was diagnosed with a brain tumour in September exactly 4 weeks before Marcel, the tumour was in the same place as Mar and Lis underwent mass debaulking, radiation & chemo. Throughout her battle with cancer Lis kept an amazing sense of humour and always always asked after "her little man" (marcel) no matter how frail she became.
I miss not having her on the phone nagging me to give up smoking or not to worry about dieting cos she just ate the biggest chocolate bar ever, or sharing a really RUDE text. I have kept the last 3 texts from her on my phone, her last message said "Yo Sammie (Lis is the only person to get away with calling me sammie) you dont think our little man tried so hard to get here, only to go so soon?? he's not going anywhere!
Lis bought me some amazing gifts over the years but the biggest gift she gave me was her friendship and that i cant replace! Love u girlfriend, heaven got one good looking, booty shaking, chocolate eating angel up there just dont give up your hopes of being a Sunday School Teacher.
Angels with dirty faces!ROFL
Im still holding your hand hun!
To the special people Lis left behind, hubby John, son Mike & daughter Nikki. Im at the end of the phone and I can be in the car and by your side in a heartbeat so if you guys need anything you know im here.
Love Sam.XX
Friday, February 27, 2004 5:06 AM CST
Hiya People,
Just to update, we had a call from radiography dept to say
Marcel MRI scan has been cancelled due to staff shortages!
So the nail biting, sleepless nights will go on until Wednesday morning unless of course it is cancelled again!
Who knows?
Oh and Mar's line infection is a staph bug and is resistent to most antibiotics, so my poor little man
having 6 weeks of antibiotics for no reason, ho hum lots of things i want to say but i will rise above it.
TTFN
Love Sam.XX
Thursday, February 26, 2004 5:32 AM CST
Hiya People,
Just got back from our appt with neurosurgeon, well it changed and we actually didnt see Dr Pople as he was operating on a emergency. We did however see Dr Steve Lowis who we have met numerous times and is an expert on CPC! He was the consultant oncologist who was featured on the TV programme this week about the 5 children in Dorset who had the very rare cancer. He looked very suprised at how Marcel looks considering we have had no Chemo for 6 weeks, and in his words there isnt a Chemo protocol in England that has saved a patient with CPC! blah, blah, blah!
He was very diplomatic about our concerns on the protocol but totally agreed with our reasons for stopping Chemo at present and all the oncologists at Bristol Childrens are having a metting at 1pm on Monday with Marcel's MRI scan. There are convinced that the MRI will show regrowth but our lives are in the hands of GOD and I just know the scan will be clear, praying, praying, praying!
Onto one of my funny stories, well with 3 children there are constant funny stories but this was, well embarrasing to say the least.
Tuesday morning I was on the phone to my solicitor discussing very important things and Mar was on my lap, pulling my hair and trying his best to distract me. Well he done a forward roll out of my arms and I had the phone wedged under my chin (trying to be professional) and as I grabbed him so he grabbed the phone and proceeded to BURP very loudly down the receiver, i mean a man drinking 10 pints of beers and eating 2 curry's BURP! to the solicitor!!!! (lawyer for our American friends) Oh the SHAME. Well I grabbed the phone back off of him and my solicitor said "Are you ok, better out than in!!" I tried to explain that it was my 10 month old baby and he just said "oh". When I told Mikes he laughed and said thats the height of deceit burping and blaming the baby! Kids dont you just love em.....
Clic nurse coming out tomorrow to flush Mar's line, oh and Steve Lowis said there are definately NO BLOOD MARKERS with CPC, he is the expert but it still doesnt explain why CT scan being changed to full MRI with contrast? and Why they are constantly taking blood even tho we arent having chemo and his counts are as high as they could possibly be?? strange but true!
Anyway thats all from me if I dont update before it will be when we have the clear results (positive thinking).
Have a good weekend and think of Mar 8am Monday morning!
Love
SamXX
Tuesday, February 24, 2004 8:29 AM CST
Hiya People
WE HAVE A SCAN DATE!!!!! yes shock i know finally I had a phone call from the Radiology dept to say its Monday 1st March. We have to be on day beds at 8am and the scan is booked for 11.30am. Please pray for Marcel!
We also have a appointment with the neurosurgeon this Thursday at 10.20, this is just a normal post operation check up.
Marcel's line is still nasty and three trips to oncology on the weekend finally resulted in antibiotics!
Marcel is now starting to pull himself up to stand on his own and he is taking steps around furniture, he's abit wobbly but he's very determined.
So thats me updated, thank god we have a date FINALLY.
Thanks again for the support
Sam.XX
Friday, February 20, 2004 11:33 AM CST
Hiya People,
I really did think long and hard before adding this journal entry cos im on my "Soap Box" but this is what Mar's journal is all about! our Trials & Tribulations fighting this monster. I thought it would be the cancer that would cause all of my dispair but NO its the childrens hospital AGAIN! We are now 12 days since MRI request, no date, and to top a stressful week the CLIC nurse Ali came out today to flush Mar's hickman and take blood. Well when she saw the state of his line she agreed with me "The Line Needs To Come Out" she said "I will speak to Rav and get a date for next week to operate and take it out" so off she trots and 4 hours later a telephone call to advise me they cant get a date!!!! hmmmmmmm, really, never, sarcasm, sarcasm, sarcasm!
So not only is my precious baba in pain from the line, they cant get a date! I just dont believe a word that comes out of there mouths anymore. I know exactly what happenend, Ali went to day beds, advised the Proff about Mar's line needing to be taken out and he said "Im not taking the line out until we have had the scan" I just know it, what they feel is that the tumour has grown and they can convince me and Mikes to plough on with Chemo! Even Ali said this cancer is so very aggressive Chemo wont get it because 20 f the monster was left in his head, a act of God, a Miracle but NOT CHEMO will kill this monster!
Im in touch with a wonderful mother called Sam who's baby called Harry died of CPC in August 2002, Harry had Chemo, 3 surgeries and Radiotherapy and he only lived 8 months from diagnosis!! So please cut the bull, Ali also admitted what I already know but Docs denied! that some tumours excrete hormones which show up in the blood which would also show whats going on with the tumour. This is why right at the beginning of this nightmare the scheduled CT scan was replaced to a full MRI with contrast do they think we are idiots?.
Also since birth Mar has never had what I would call wet nappies, I banged on and on to oncology until they started measuring his urine output which confirmed Mar was on the very low side but not enough to do anything, then
for the last 3-4 weeks Mar is weeing for England! I just knew this was very significant so when i asked Ali she agreed and said some tumours affect the liver and disturb the normal output! Yipee! so this means we are on the right track.
Im sorry i have gone on and on but as I said before I want to print this out for Marcel to read when he's a big boy and truly understand how we ALL fought this battle with him, each and everyone of us!
Big thanks to everyone who writes messages in the guestbook, and all who email me direct your support makes this nightmare easier to deal with.
Well I have gone on and on and im sure if you have taken the time to read all of this entry your eyes are tired, and your probably thinking i must have writers cramp by now!
I have, and to let you in on a little secret Mar has been on my lap bashing the hell out of my keyboard and destroying my mouse so i have erased line after line....lovely, gorgeous little angel I wouldnt have it any other way!
When your eighteen and reading this just remember Mummy and Daddy love you big as infinety times infinety! always and forever.XXXXXXXXXXX Gorgeous fat face.XXXXXXX
Thats it im done and outta here
Have a good weekend all
Love Sam.XX
Thursday, February 19, 2004 4:31 AM CST
Hiya People,
Marcel good, bit crabby when he doesnt get his own way! as im typing he is destroying one of my magazines, not content in ripping it to shreds he's using his feet to stamp on it aswell.
We went to Weston-Super-Mare yesterday, we showed Mar the beach and put some sand in his hand to feel the texture! His face was a picture (stupid forgot the diggy camera)then we went on the pier and the kids (this includes Mikes) went on the Ghost Train, Slot machines, Air Hockey and a very high ride that went up and down.
STILL WAITING for the MRI date, do y'all see what I mean about the good ole NHS! driving me nuts, im not sleeping, irritable and exhausted. ALL I WANT IS A DATE!, the MRI should of been done either last Friday or early this week. I have rang and rang oncology and now im not ringing anymore! Im crying with frustration.....our whole life has been on hold and its like they want to prolong the agony just that bit more! What is even more frustrating is Mar has had an infection in his hickman line for 3 weeks now the antibiotics are just not working. This means I need to change the dressing (mepore) every single day, and i cant buy the dressings anywhere (i have tried) I have to get them from Children Hos. They are so stingy with giving them out you would think it was money they were giving me!!!
I had to go all the way down there on Monday only to be given FOUR!!! dressings! ohhhhhhhhhh so frustrated! i just couldnt be bothered to say a word, just thanked her sweetly and stomped off to the lift....:-(
So we are in the same place as we have been since last week, waiting a DATE!
Sorry my journal is full of me ranting and raving!
All who know me realise its just whats going on that has got me like this, im not really such a witch!
Also my friend Lisa who I mentioned in prevous journal's has hung on until now, her hubby updated www to say Lis has been unconcious for the last 20 hours, please say a prayer for Lis and her family, John, Michael, & Nikki.
Til next time all
love Sam.XX
Monday, February 16, 2004 2:15 AM CST
Hiya People,
Well I tried to download new pictures from mum's puter but it just wasnt happening...:-( There are some really lovely ones of Marcel and his big brother and sister, oh well I will have to take some on my camera (too lazy)).
Yesterday we went up Mum and Dad's as usual on a Sunday and Marcel took his first real proper steps!!! So chuffed, he is 10months and 3 days old! he had a little guidance but basically done it on his own, we were so pleased. Every milestone is so important because we didnt think we would see any of them.
I had such a vivid dream last night, I woke up and Mar's line had broken in his sleep (he does rumage about alot)!
It was so vivid i was scared of picking him up...
Well onto the week ahead, the kids are on half term JOY!
So we are planning trips to Weston, and Victoria Park out Bath. We cant go too far because the dreaded scan is due this week.
Oh Niquey wanted me to tell you all about Mar in the bath, basically he has just worked out that he can splash the water with his hands really hard they he soaks everybody within 4 feet. This he finds absolutely hysterical, and a totally drenched me last night caused the whole house to find bathtime highly amusing. I got my waterproofs ready for tonight!
Well thats me, will update ya'll when i have something interesting to say.
Til then love to you
Sam.XX
Saturday, February 14, 2004 2:49 AM CST
Hiya People,
Happy Valentines Day to you all!
Please scroll down to the bottom and see the link I finally put on to our friends in America who are battling the same cancer as Marcel. If you do drop by there sites please leave a message in the guestbook for them, it keeps us going reading the kind thoughts people post.
Ok now onto Marcel, well he is very happy, my mum rang up yesterday evening and she could hear him playing in the background and she summed it up when she said "he sounds sooooo happy" this is exactly how Mar is "HAPPY".
Well I had a letter from our Prof Stevens at oncology in Bristol Childrens. He basically outlined our conversation on Monday, and said how the Cyclophosamide is given in doses that would not cause Marcel heart problems, oh and he made reference how Im getting my information via the internet! WELL WHY IS IT THAT EVERY SINGLE CANCER/CHEMO SITE STATES THAT CYCLOPHOSAMIDE causes heart, respiratory, and liver function problems, am I an idiot here (dont answer that one) there is just something im not getting! Oh and that he wants a meeting between Michael, myself our neurosurgeon, and the Prof to discuss surgery and further treatments to the cancer. So i sent a better back, took me all day cos I was so fired up and emotions were high, anyway finally finished it two A4 pages and sent it this morning. I just outlined our exact concerns on the toxicty levels and how notoriously hard this cancer is to treat. When I read it back to my mum over the phone she said it made her wanna cry cos it was so touching. I would love to post the letter the prof sent me and the one i sent him back on this site for all your comments but i havent a clue how to do it!
Im posting some new photos on site tomorrow, cos mum got loads more pictures that i have so im gonna upload them from her puter. So watch this space!
Anyway still awaiting date for scan, should be next week my pyschic powers are saying Thursday! ha,ha
Have a lovely weekend y'all!
Love Sam.XX
Thursday, February 12, 2004 7:52 AM CST
Hiya people,
Thanks for all the support! As in my previous journal we are stopping chemo, waiting for a date for the MRI scan which should be next week.
I had an email from Bailey's mum Becky in America, Bailey also has CPC and is about 4 cycles ahead of Mar with Chemo.
Baileys protocol really put showed me we have made the right decision in stopping chemo. Marcel's protocol is 5 full days of Eptoposide, cyclophosomide and vincristine these are hooked up via drip into his body for the full 5 days. Bailey has 2 days of similar drugs BUT they doc's make sure his heart and lungs are ok before they do anything. Marcel has never had any of these checks which was my prime concern, I know things are done differently in England but even Great Ormond Street Hospital check out the kids vital organs before starting. When i questioned the Professor he just said the doses arent high enough to cause Mar problems, well why is it Bailey has so much less Chemo than Mar but they check him out?? Sorry im just going on and on here but im so tired, angry and hurt with how Marcel has been treated. I no longer trust anybody in the medical profession, which is very sad.
Onto Marcel, he is really well, bottom shuffling, standing playing all the time and generally happy. He has a heavy cold which I now have, joy! Im going stir crazy home all day I cant wait to go back to work.
Well thats me all updated, I will post message when we get a scan date.
Special thanks to my Mum & Dad (bless them), Becky (Baileys mum) and Jackie (who straightend me out yesterday..:-)
Love to you all
Sam.XX
Monday, February 9, 2004 9:02 AM CST
Hiya People,
Well some dramatic news for all who read my journal, as you should know we were due for our 4th bout of Chemo tomorrow. Well I found out some information that really put the cat amongst the pigeons as it were! I have been researching the drugs that the oncologists are using in England for Marcels treatment of CPC. Basically Mar is a test tube rat!, because they have never used this protocol on anyone so they do not know the short term or long term effects. Not wishing to get really technical but to give you all some insight when the drugs are administered they are so toxic the nurses wear protective clothing and goggles, plus anybody pregnant are banned from administering chemo full stop. After having a long chat with our Proffessor we have said in no uncertain terms that until a MRI is done and you can prove that Marcel still has CPC chemo will not be done, instead we want a period of monitoring via MRI's either monthly of 6 weekly. The last MRI showed scar tissue (to be expected a op had only been done 6 weeks prior) apparently the MRI doesnt distinquish between scar and cancer? What the doc's dont know is I got up at 3am in hospital and took Mars medical records as I was sure that they were not telling us the full story. I put them back a few hours later when the nurses were on break and what I found out made for very interesting reading. They had a neuro radiologist the top man in the country read Mar's scan because they couldnt believe what they were seeing and his report stated " scar tissue is prevailant but scan cannot be conclusive that CPC is still at operation site" basically they cant see any visible signs of cancer. So "NO MORE CHEMO", I know there will be loads and loads of people not agreeing with me and we all have our own opinions but please read just one article that finally nailed our decision the link is www.lightparty.com/health/pediatriccancer.html
this is just one parents heartbreaking story.
So basically we will be going for an MRI next week and deciding where we go from there.
Love to you all
Sam.XX
Friday, February 6, 2004 11:11 AM CST
Hiya People
Mar doin really well, took him to see nurses on day beds and they havent seen him for 3 weeks so they noticed a big change cos he's standing and feeding himself, babbling ALOT MORE!
Sad news is that two of the best oncologists are leaving in the next week, John and Amos will be sadly missed from Childrens Hos they really are amazing people and spent alot of time with me and Marcel, especially Amos...:-(
Well Mar's blood results are "stormin" his HB is 10.8, platlets are over 500 and neutrofils are 2.9 so chemo going ahead on Tuesday..;-0
Thats me all updated, to all who read this page have a good weekend!
Love
Sam.X
Thursday, February 5, 2004 6:41 AM CST
Hiya People,
Neuro guy Rob has just left, his results put Mar at 8 months brain development and between 7 - 11 months for everything else. Basically he would expect a 8 month old to do what tasks he set Mar to do which is good considering he was bedridden for 2 months. The other developmental things he would expect a child to do at between 7 - 11 months so on the scheme of things Mar doing great. It didnt help that Mar was so crabby tho, I reckon he would of scored higher if he would of had his co-operating head on! In the end Mikes carted him off to bed, so embarrasing.
We knew he was doing well but its nice for a proffesional to set it in stone as it were! So the next test is in 6 months, all good.
Mar crabby this morning as the 4 & 5th teeth coming through so he's not a happy bunny. Last night was the first night ever that he slept in his own bedroom without waking up once!! He went down at 8pm and woke up at 6pm which is great. First time I shared a bed with Mikes for ages, forgot how he hogs all the quilt reckon im better off with Mar (only joking hun if your reading this..:-))
Clic nurse coming tomorrow to take blood ready for Chemo next week, we go in Tuesday and come out Saturday, deep joy..:-(
Anyway gotta go cos Mar screaming for his dinner.
Love to u all
Sam.Xx
Monday, February 2, 2004 9:44 AM CST
Hiya People,
Well Mar had a really good weekend, playing, laughing, and making trouble on his big sis and bro! eating for England, sleeping like a doormouse and bouncing like Tigger!
Just had a phone call from Oncology who are scheduling our 4th Chemo bout for next week Monday, I just wanna get it over and done with and then we have the dreaded MRI scan straight after. On Thursday this week a neuro doctor is coming out to the house at 11am to access how Marcel has coped with the surgery. Apparently he plays with him and monitors how his co-ordination is, etc,etc so im looking forward to hearing what he has to say on Mar's progress.
Mar sleeping so well in his bed! I had the best night sleep in months on Sat night, i didnt know how sleeping well makes such a massive difference to how i feel...:-) All good!
So thats me about updated, dont wanna ramble on and bore y'all.
TTFN
love
SamXX
Saturday, January 31, 2004 2:34 AM CST
Hiya People,
First a big thank you to all our "Friends" in America who have been giving me kind words of support!
Well i had a phone call (as expected) from Martha Mar's oncologist who was "NOT HAPPY" about us leaving hospital. Apparently Mar IS STILL NUTRIPENIC! the blood test at Frenchay was wrong??? this atounds me and fuels mine and Michaels rage even more. Mar's white cells are .66 NOT 1.4 so we were REALLY stupid to leave hospital. In defence of our actions I expect when something as important as a blood test in an "Oncology" patient is done the results to be accurate!!!! Boiling again! steam coming out my ears !!
Anyway on a much lighter note, Mikes decided Mar's cot had to go as he was not sleeping in it at all, after being spoilt rotten and sleeping inbetween us for the last 3 months. So I advertised it in a local paper and the first person who came bought it, so we then went out and bought him an absolutely beautiful 3ft pine bed compete with side guards. So after "bob the builder" aka Michael assembled it (thats another infuriating story) we rearranged his room, and there was just such a lovely feeling "all warm and nice" sounds mad i know but I think deep in my mind I kept thinking of how I would cope if I didnt have Mar and his room wouldnt have him ever sleep in it! I being honest here!
So I had all the jokes from Mikes bout putting a TV in the room to make it more comfortable for ME cheeky ****, but when I put Mar asleep last night (in his new big boy bed) I was just absolutely overwhelmed and spent a good hour sobbing, divvy I know. Mikes woke me up at about 1am and he spent the rest of the night with Mar cos we get worried about leaving him to sleep alone cos he is still nutripenic.
So all in all this morning I feel like I can climb mountains, swim oceans etc, etc in the infamous words of James Brown " I FEEL GOOD"
So will update site probably Monday now cos thats when I see the lovely Martha..:-)
Oh and lastly but not least we start our 4th bout of Chemo Monday 9th Feb.
Have a good weekend to all.
Love Sam.XX
Thursday, January 29, 2004 4:15 AM CST
Hi people,
Well were home!!
We were rushed to Childrens Hos Monday but they had no beds no we were taken by ambulance to Frenchay hospital. Mar temperature was hitting 39 degrees, and he was vomiting. Anyway he settled during night no temp and was alot happier. We were then transferred back to Childrens Hos ward 33, this was a medicine ward and they had little knowledge to deal with an oncology patient (I was telling them what they should be doing)!! So after spending a sleepless night looking at 4 walls and no tv we left childrens hos at 11am yesterday morning. The reason being Mar wasnt Nutripenic anymore and had no temperature spike for 24 hours. So because we felt Marcel would be better at home thats exactly what we done!!! Oncology not happy to say the least and im sure they will have something to say to us, hey they may even refuse to treat Marcel because we took it upon ourselves to leave, but hey we will face that bridge when we have to....I feel really angry today, sometimes Marcel's illness is just too much to bear and the strain affects all of us. I feel so sorry for my other children, cos this is having a major impact on them and I feel because my time is so taken up with Mar their needs are neglected but they are so very good with him.
I dunno, fed up, stressed, tired, exhausted and just down!
Sorry this makes more depressing reading, im not usually like this.
The day will get better, positive thinking...
Thanks to all who signed Mar's guestbook!! it really gives me a lift reading all your wonderful comments.XX
Love Sam.xx
Monday, January 26, 2004 8:49 AM CST
Hi all
this is very short and sweet! Mar Temp just peaked at 38.5 so we got a life threatening infection!!!! Off at 100mph to childrens Hos update when I can.
Please pray for him!!!
Love Sam.XX
Saturday, January 24, 2004 8:14 AM CST
Hi People!
Well so far so good, even tho Mar nutripenic we havent had a temperature spike as of yet!!! Touching loads of wood! Clic nurse coming out Monday at 11am to check blood counts again.
News to you all please book a date in your diary for Mar's Christening & first birthday party, it will be at Parkway Methodist Church on Easter Sunday which is the 11th April at 10.45 to 12.30. After party will be at the Rose Green Cricket Club from 12.30 onwards.
Thats about it, keeping smiling..:-)
Love Sam.XX
Friday, January 23, 2004 11:31 AM CST
Hi people!
Well not good news, just got his blood results and Mar is NUTRIPENIC!! I knew it was too good to be true, so if my journal isnt updated then you know Mar has got some life threatening infection and we have been rushed to Childrens Hospital.
Anyway im too fed up and stressed to write anything more, just please keep praying for him.
Have a good weekend y'all!
Love Sam.XX
Friday, January 23, 2004 2:36 AM CST
Hi people!
Its FRIDAY!! and im not even working, lol.
Clic nurse came out at 8am to take Mar blood, even she is suprised he isnt Nutripenic...I told her that I have been giving him Maximol but she didnt say anything. All the doc's and nurses think about is CHEMOTHERAPY! I have got to ring Day Beds at 4.30 for the results and I will post on journal.
My friend Lis is still with us!! she is such a strong person, apparently when the docs told her she would be in a coma within days she started singing "And now my time has come, to see the final curtain" love her if anybody wants to see Lis and visit her www its the same as Marcel's well I will just give y'all the link www.caringbridge.org/la/lisaandrews.
Love to you all, im off to see my boss and let him know im still alive!
L&L
Sam.XX
Thursday, January 22, 2004 10:37 AM CST
Hi People,
Not alot of news! Mar doing really well, clic nurse coming tomorrow to take blood to check his counts but he is eating and playing and being a general nightmare! Not alot of sleep last night as he wouldnt go to bed and when he eventually went at 11pm he woke up at 4am and wanted to play!!!! not amused!
My friend Lis who I mentioned in past journal's is still holding on at least she is pain free as the doc's at Frenchay are keeping her morphine high but she is in a coma...:-(
Thats about it, update when I win the "LOTTERY" or something interesting is going on or y'all get bored..lol
Love
Sam.XX
Tuesday, January 20, 2004 1:38 PM CST
Hi All,
Well "ducky" who went AWOL has been found!! abit ruffled from his experience obviously hadnt been thrown up on enough by Mar or discovered the grass isnt greener with another child!
Anyway its going in the wash ready for Marcel in the morning.
I mentioned my friend Lis in an earlier journal and she now has only hours left to live (sob). She has and was such an inspiration for me, especially when she was diagnosed as having a tumour and then Mar 4 weeks later (life can be so cruel) her tumour was exactly the same place as Marcel's.
She is such a tough cookie and even as she is dying the first words out of her mouth when I ring hospital is "How is my little man". She always said to me "Marcel was given to you and was meant to be here, you dont think somebody who fought so hard to get here was gonna leave so soon!" So Lis im sure your gonna be watching over all of us and Love to you mate cos you are/were a true friend.X
Onto Marcel, he is absolutely bouncing i know I keep saying this but its the only word I know to truly express how well he is! the stuff they pumped into his body last week you would never believe a child can look and act so well. When people see us and they know what's going on with him they look at me as if I have been lying and there is nothing wrong with him its quite embarrassing (in a good way tho).
I almost feel as tho I should take of his hat and show people his bald head and the huge scar!
Well this morning he was bawling for his breakfast so I sat him in his chair and went to make it, first Mar was crying and then I heard him chuckling??? WELL when I went in he had managed to roll off the chair and was stood up gripping on for dear life bouncing up and down!!! Does that sound like a child who has undergone INTENSIVE CHEMOTHERAPY!! HE just astounds me every day.
Im off now to bath him and put him to bed! hopefully I will
have a few hours of peace???
Love Sam
Monday, January 19, 2004 10:45 AM CST
Hiya people,
Well marcel doing absolutely GRRRRRREAT! as mentioned last time his counts have been rising???!! nurses dumbfounded, and the professor said we DONT NEED to go in for GCSF, which is absolutely wonderful cos we can be a "normal" family for a while. Clic nurses coming in Friday to check his blood again, but it seems like mar wont be going nutripenic so no mad dashes to hospital at 100mph, well with Mikes driving it is!!! all who know Michael will agree..lol.
We have also had a nightmare yesterday as Marcel's much loved duck has gone AWOL under strange circumstances?? everybody knows what the "duck" means to Mar and he is never seen without the duck close by. This duck has seen more operating theatre's than i've had hot dinners! but Sunday I went to hospital for GCSF and left the duck in the car (div I know) but on my return duck has done a runner (probably fed up with being thrown up on and having runny nose wiped on him!) So the second in command "dog" (thanks Mum) has been brought out, doesnt smell the same (nasty & yukky) and Mar has done a fair bit of crying and looking round for ducky.
Anyway nurses have put up a sign on the ward to PLEASE hand duck in if found....
So thats me all updated.
Love to you all
Sam.XX
Friday, January 16, 2004 1:17 PM CST
Hiya people!
Thanks to all who have left messgaes for Marcel! If you read this Viv you made me laugh more than I have in ages, to all who are wondering why I am called the "Egg and Chip" lady its because when I was carrying Marcel the only food I craved was "egg and chips" oh and spearmint tic tacs! Anyway Viv and crew at the cafe where I work used to cook it every dinner time and rub my belly and shout "HELLOOOOOOOOOOO BABY" wow it feels years ago that happend and it was only 9 months ago! Love to you guys!
Well "WERE HOME" Chemo seemed to go as well as it could do, and a really strange thing has happened but basically without getting to technical Marcel's blood count starts dropping as soon as the drugs are administered and when they "bottom out" we are rushed back in with some serious infection. Well his count Monday was 3.69 and yesterday it was down to 1.65 so we were looking bad already BUT then today when i asked for counts miraculously they have RISEN!!!!! to 2.68??? strange but true, so fingers crossed he wont bottom out. We have to go back everyday for something called GCSF and we usually end up having a blood transfusion and/or platelets but early signs look good! he his still bouncing like Tigger and stuffing his fat face!
A sad day for me in another way but it is major so I will mention it in my journal. My bessie friend Lis was diagnosed with secondary cancer in her brain 4 weeks before Marcel and she is now critical in Frenchay, they have moved her to a side ward and she is unable to talk and move her left side. She is only 43 and has two children of 18 and 15 years and her loyal hubby John. My heart feels heavy and im abit of an emotional wreck, so i will sign off before my tears totally cock up the key board.
Love to you all
Sam.xx
Thursday, January 15, 2004 9:17 AM CST
24 hours of Chemo left!! I must say that the nurses have been absolutely fab, Marcel hasnt been overlooked for breakfast, lunch and dinner...but also because there hasnt been loads of patients in they have more time and are less stressed. We found out yesterday that the consultants are planning to go back into Marcel's tumour site at the beginning of March to see if it is scar tissue or any remaining Choroid Plexus Carcinoma!! not at all happy about that because its such major surgery and it will only be 5 months since last surgery, I mean give him a chance to recover. One of the doc's also said that tumours sometimes behave in a way that they shrink to almost nothing and then suddenly come back bigger and badder than before and dont respond to chemo.....I felt as though I had been punched in the tummy! I just sat in stunned silence, it was said almost as if they are buying us more time until the enevitable happens....So they are still sure that this cancer will take Marcel's life, this is something I just cant/wont accept. Its hard to try and keep smiling when you continue to be brought crashing back down to earth. I just know God is on our side and wont take Marcel away from us as I just couldnt cope without my little man.
Changing the subject totally Michael's work place have been top banana and are totally supportive in his absence, they have put no pressure on coming back to work! and even my parents workplace have said if you need to take time off to support your daughter then that is ok by them. Shame a few of my collegues arent so thoughtful!
Anyway Marcel blood counts dropping rapidly and Nutripenia is just a few days away, as always praying he doesnt get anymore life threating infections.
Love Sam
Wednesday, January 14, 2004 9:21 AM CST
Hospital update, Marcel bouncing round the hospital bed like "Bouncing Tigger" now he's more into things its alot harder to contain him to a bed, he wants to getting on the floor and the Teletubbies video just aint cutting it anymore! He is eating well, crawling around the bed, playing peek a boo and throwing all toys off the bed for me to pick up every five seconds. I dont know if its the drugs (docs reckon not) but he is sleeping ALOT....The skin doctor came over this morning and said his rash looks abit like excema but its definately not an allergic reaction or it could be baby acne?? never knew babies could get acne! hey i didnt realise babies could get cancer!! I know that sounds totally niave or thick (maybe both, ha,ha) when I got to oncology I was totally shocked at the newborns just a few days old with cancer...
Praying Mar doesnt go nutripenic on Tuesday or if he does he doesnt get an infection that keeps us in hospital for weeks on end. Im doing nightshifts and Mikes doing the days, so washing galore!
Thanks to all who are leaving messages in guest book..:-)
Lots of love
Sam
Monday, January 12, 2004 1:21 AM CST
Hiya all, waiting for Mar to wake up! then again if I was him I wouldnt wanna wake up to go to hos and have lots of toxic drugs pumped into me!!
A message to all you people who take the time (thankyou) to visist Mar's site PLEASE leave a message in his Journal, no matter how short!! When this nightmare is over I want to be able to print out his journal and put it in his baby book so when he is older he can see how truly special he is (like his older sis and bro) and he will have a in depth idea of what he and the rest of us went through! SO dont be SHY we wont laugh.....:-) well maybe a small smile! ha,ha sorry when im worried my sense of humour gets really stupid...u know the saying small things please small minds!!!!
Anyway TTFN cos dunno when I will get a chance to get on site, it wont be for a few days anyway.
Love and Light.
Sam.XXXXXXXXXXX
Sunday, January 11, 2004 3:33 AM CST
Our last day of "Freedom" until chemo starts tomorrow. Marcel's appetite is really good at moment and his nan cooked him some liver yesterday and he ate the lot! Im taking
our own food into hospital because Marcel never eats what the nurses bring round and also they keep forgetting him(!) too many times I have gone out to ask when lunch or dinner is being served only to be told "Oh that was done ages ago you missed it!" I mean how can I miss it?? I have been in the same room looking at the same four walls for days on end only leaving when Mikes takes over. Its not like Marcel can speak for himself so it means he has to have soup or weetabix! so after soooo two months of being in hospital im prepared for Monday! Oh and another of my frustrations is the dreaded word "MRI SCAN" Marcel has had 4 MRI scans and we have only been shown 1, even the last greatly anticipated one that showed significant progress we have not been able to see. I have asked, begged, pleaded with docs and nurses but all I get is "We dont know where they are!!??!!" or "You will have to pay for them!!" (not a problem its my child it could cost millions and I would find the money!) or the best one is "You wouldn't understand it!!??!!"GRRRRRRRRRRRRR I mean unless we see the scan we wont have anything to compare the next scan with, don't get me wrong the Oncologists to a fantastic job as do the nurses BUT the NHS in England is in such a poor state its scarey that when they are the only people you can rely on and they fall over what hope is there! the power of prayer and healing thoughts and the miracle of God and the Virgin Mary!!! sorry im babbling now just nervous and emontional about tomorrow.
Anyway on a more positive note Marcel is naughty, demanding, obstinate, tantrum throwing nearly 9 month old! basically a typical baby boy! Brilliant, never was I so happy when I had to tell him off the other day for grabbing my clean washing out of the basket and throwing it on the floor! I was on the phone to my mum and she got all emotional! were a sad lot!
Anyway all being well we will be out Friday and awaiting the dreaded chemo fallout....:-) keeping smiling!
Friday, January 9, 2004 10:45 AM CST
Docs confirmed were in on Monday for chemo, Mar still got nasty rash on face and his chest is sounds bad but the docs more concerned with getting next bout of chemo underway. I just worry about when his counts bottom out which is usually 8 days from first chemo dose, he spikes a temp and were in for weeks. His first bout he got meningitis and his 2nd chemo a small innocent looking spot on his chin ended us into a huge volcano looking mass which went black and a whole lump of tissue type stuff came out and its taken 3 weeks to heal!! oh and we were in hos for a week with it! At least his appetite has returned so im trying to pile him up with liver (ugh) and vit C, apparently it helps stop nutripenia oh and oxygenated water. Mar is happy and I had my first wet sloppy kiss from him yesterday followed by a slap, but at least he is comprehending small phrases wish he would understand NO, DONT TOUCH THAT! ha,ha. I thank god every day that he is alive and will continue to do so for his whole life, as all parents who have a critically ill child will understand when you get told you child has a high chance of dying before his first birthday, your whole world is thrown up in the air and your ripped into tiny pieces and no matter how frantically you try to put the pieces back together again you will NEVER, EVER be the same again or the rest of the family for that matter. Enough of the doom and gloom because since the "Significant progess" MRI the whole family have been elated and im focusing on that..:-)
Thursday, January 8, 2004 3:59 AM CST
Hi to everyone and belated "Happy New Year" to all who read my journal.
Marcel was dx Choroid Plexus Carcinoma on 23/10/2003. Surgery to debaulk tumour was 5 days later and 80% was removed we left hospital 9 days later with NO SHUNT (a miracle in itself) and Mar was eating for England ( thanks to the dexamethadone) and fit and well. We started our first round of Chemo on the 9th Nov and have chemo at 3 weekly intervals. Doc's set up new protocol for Marcel as this tumour is so very rare and very aggressive. We had MRI a week before Christmas and results on Christmas Eve showed "SIGNIFICANT PROGRESS" YIPEE, YIPEE dancing and so very happy. Our 3rd bout of Chemo was scheduled for Mon 5th Jan but Mar got an viral infection so we go in on Mon 12th Jan. Thats most things updated, oh and Mar cut two teeth first chemo bout and two teeth on 2nd bout and he can now sit up unaided and say Mama, Dada, bless. Doc's said everything would be severely delayed but Mar isnt listening to them it seems!!
Marcel has a older sister and brother who are 10 and 7 and totally dote on him as does all the rest of the family.
Im a great believer in the power of prayer and there are people all around the world most of whom i do not know but who are praying for our little miracle, thanks to all other parents who share there stories as this website is truly up lifting...Much love and prayers going out to you all.
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