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Saturday, December 30 2006-January 2nd, 2007 0:51 AM CST

January 2nd 2007
Double click on the 4 Candles link below... It is truly awesome! Wait for the first 3 candles to go out then watch the 4th candle...
4 Candles
Click on the link above I hope it works


December 30th 2006
Ryan and I were in a local shop and saw statue of a Native American man with Eagle wings
Ryan said we had to get it as the “man part of the statue was so strong and proud just like Jake and with the eagle headdress and wings it was meant for us
Ryan and I both fell in love with it and decided to put it on lay buy
The woman behind the counter commented on how beautiful the Statue was, I explained the significant of the “Angel” with eagle wing was for us ,as Jacob had said if he was ever able to come back he would be an eagle so we call him our Angel with the eagle wings (and soccerball ;-)

She had tears in her eyes as I finished saying this and said that she had lost her first born to cot death
And that her little one would have been 26 this year …the pain in her eyes from the loss of her baby was so raw still…. As we both embraced each other two mothers who will always have a share in a pain that can’t be shared with other’s…
I realized that no matter how fast each day seems to pass us how many years go by that the pain of losing Jake will not diminish and it should not diminish that loving and missing him is nothing to be ashamed of or hidden we will always remember Jake with love laughter and even tears as this is the love and respect we have for an amazing strong proud young man
Flying high on his eagle wings… my Jake

Monday, December 25, 2006 7:45 PM CST

Merry Christmas
It is Christmas morning here in Australia
Jacinta ,James and I were out by Jacob’s pond while James played with Bonnie (Jake’s dog)
I was taking photo’s (as Usual) and saw on the plant a Butterfly that had just immerged out of it’s cocoon drying it’s wings in the Morning sunshine ( you can see the cocoon under the leaf)
Our Christmas miracle sent by Jake… I like to think
Merry Christmas in heaven Sunshine we miss you to the galaxies and beyond infinity plus 1

Have happy day

Wednesday, December 20th, 2006 6:36 PM CST

Dear Brenda
How can I ever thank you enough for this
beautiful Christmas background you have made for my son
I thank you with every beat of my heart

Please visit Brenda's page
Brenda's Dad's 2nd anniversary in heaven is Christmas day
Brenda resenty lost her Aunty Dianne
and still found the time to make this back ground for Jake
http://www2.caringbridge.org/ca/daverurka/index.htm

16th December 2006
A Christmas card from Jacob” 18 months an Angel

I was going through some old papers the other day and came across this Christmas card that jake had made me in school
I laughed when I saw that he had written “MOM” in the American spelling instead of “MUM” the Aussie way ;-)
On the back he wrote
Dear Mom
Have a great x-mas and a Happy new year.
I love you with all my hart.
Have happy dreams
Love from your son Jacob
I cried when I realized he had also drawn an angel on the back
By the hand writing I think he wrote this in 4th or 5th grade
(Did he know something we didn’t know)
I miss him with every single beat of my heart I never thought it posible to miss someone as much as I do Jake
my sunshine boy …..
Have a great Christmas in heaven fly high on your eagle wings and soar pain free and know you are loved

Cool Slideshows

Cool Slideshows

Wednesday, November 22,, 2006 3:47 PM CST

as you can see we are trying to get into the Christmas spirit
Christmas was always Jake's favourite time of the year
he loved christmas carols his fav was Little drummer boy
when he was little he would play that song over and over and over again
He love "johnny mathis" sing it ;-) (over and over;-) )
He also loved me to read "it was the night before Christmas"
Please remember our Angels on the 10th of December

Thank you To Brenda My loving Dad for the drummer boy music for jake's page
you will never know how much it means to me

Tuesday, November 14-16, 2006 9:04 PM CST

16th November 2006
2 years ago today Jacob received his gift of a new bone marrow
We weren’t allowed to know who donated his marrow but we do know she is from Victoria
Here in Australia and has five children
Technically Jake’s new marrow grafted and was working well but unfortunately there were Leukaemia cells still hiding in Jake’s body the hospital had decided because he (seemed) to go into remission after one round of Chemo to changed his protocol without discussing it with us even though they knew how aggressive Jake’s leukaemia was …..
Still we will be forever grateful for Jake’s donor we had 7 more months with him in our lives

Today also is 1 year and 5 months since Jake received his angel wings ..I want pretend that it’s getting any easier …I guess now it’s just accepted
They say there are 5 stages of grief ( I guess that also depends on what minute of the day it is )
I find “acceptance” the hardest….



15th November 2006
Happy Birthday Luke

Cool Slideshows

Cool Slideshows

Thursday, November 9, 2006 2:45 AM CST

10th November 2006
Ryan’s graduation ceremony
We almost missed Ryan’s graduation ceremony. Ryan, who can at times be very blonde had given us the wrong date thankfully one of his mates rang in the morning and reminded him
250 ,year 12 student graduated this year it was wonderful to see them all get up to receive their certificates
During the principals speech she was mentioning some kids names that inspired her and others, I was so surprised to hear Ryan’s name mentioned and of course then the tears started to flow (both Jon and I ;-)
She said he was an inspiration facing such a hard time with such dignity. (with Jake) then she went onto mention our family I was so touched and a little embarrassed ,I must admit (to be mentioned at Ryan’s schools graduation) I was also so proud that Ryan was one of the kids singled out there were others too that fought against the odds and graduated their parents must also be so proud
Fancy my Ryan leaving school who would have thought Thirteen years of schooling would go this fast
I can still remember his very first day of preschool (he jumped the fence to go home with Jake and I) and High school he was so little … when he was selected for the soccer excellence at Kelvin Grove State Collage I wasn’t very comfortable with him going as it meant he would have to catch a train then a bus into the city(an hour trip) …I will never forget the first day I put him on that train at 12 with this huge school bag laded down with books and his soccer gear he was so tiny it took all my nerve Not to drive him into the city everyday to school ….now at 17 he is almost all grown though he will always be my Little boy ;-)
Congratulations Ryan we are so proud of you

It’s been a busy couple of weeks with presentation nights for Ryan he received his clubs “most consistent player” award
Soccer excellence he received a medallion and certificate and the school award night last week he received a silver medallion and certificate for metro and rep
ryan's formal is on Tuesday night

Thursday November 9 2006
April's Run for a cure
Just when I feel like Jake has been forgotten that he is just a memory that belongs to our family
Someone does something so kind that brings his memory back to life
Logan’s Mum April has signed up for the” American cancer societies run for life” and has sponsored a
luminaria in Jacob’s name (they are lit on the night of the walk) we are so honoured and touched by Aprils act of kindness for keeping our Jacob’s memory “alive”
Thank you April
You can visit Aprils run site and sponsor her at Aprils run page
Or visit LoganLogans page
It’s for a very good cause

Also Thank you Viks from Post Pals for the beautiful Angel from Angels of hope thank you so much for thinking of us and also remembering our Jake





Remember the children

Saturday, November 4, 2006 1:46 AM CST

Joseph is home ;-)

Royal children’s memorial day
Jon ,Jacinta, Ryan and I attended the memorial day at the Royal Children’s Hospital today
I will admit to being a little apprehensive about attending but.. I’m glad I did now
We caught up with little Leo’s family we haven’t seen them since Leo’s service it was good to see them to hear how they are all going
Leo’s brother said to me that he remembered Jake and that Jake was Leo’s “Best friend” I was so touched by those words Leo and Jake spent a lot of time together at both hospitals and seemed to have a real bond even with the age difference ,it was lovely to hear that Leo felt the same way
Jack (Leo’s dad) has an amazing strength and faith his other four have grown so much, I could see Leo in his brother’s eyes it was like looking at Leo himself
I also met three other angels families as we were decorating candles to light at the service
Little Hayden who received his wings at just 10 weeks old Lincoln who received his at 6 and ws going to play cricket…and Katherine just three with a cheeky smile
It’s sad to meet more families that have had to live with the loss of their beautiful children …
Though the Royal will never be my favourite place I think it’s a beautiful idea to have the Memorial Day
Be good stay healthy



Happy Birthday
Happy 21st Birthday Teagen 6th novemberhappy Birthday Jon (jake's dad) 8th November
Luke have a happy birthday 15th November
2 years since Jacob's bone marrow transplant 16th November
Happy Birthday James 26th November

Wednesday 1st November, 2006 10:23 PM CST

1st November 2006
Three years today since Jacob was diagnosed with leukaemia.
20 months later our beautiful vibrant energizer rabbit is in heaven
There are so many things I would change about that time in Jacob’s life
I would not have taken the Doctors words as gospel I would not put my full faith and energy into believing that they had all the answers
We as a family did everything we were told like little puppets we followed to the letter everything we were told to do
We never missed an appointment even when we had other plans we would cancel so that Jake would have the best chance of living
We spent so many days, nights, weeks months in the hospital, at the hospital or waiting for Doctors
I would in hind site now have encouraged his mates to visit more (I was so scared of germs, colds etc)
I wouldn’t have canceled holiday’s, weekends away…..Jake would have had more quality time
Once Jake was invited to meet the “Matilda’s” (Australian woman’s soccer team). He was going to be able to sit on the bench during a game he was so excited about that …but the DR’s had scheduled something on that day so we cancelled the meeting with the team. He was so disappointed but I rationalized it to him that it was more important that he gets well
Well doing everything we were told being where we were suppose to be at the Hospitals beck and call got us no where we lost our beautiful son who also believed if you have faith and trust everything will be ok the 1st of Novemebr will be forever a day I wish I could forget..
Jake’s counts at time of diagnoses
HB 8.6 WC 4.0 platelets 222 Neutrophils 0.28 Blast cells 3.26
‘Normal’ Healthy counts are in the range of
HB 10-14 WC 5-10 Platelets 150-400 neutophils 1.0
And of cause there should be no blast cells (leukaemia)

Just some of Jake’s favourite nurses
we owe so much to each of these amazing people each one treated Jake as if he was the only Child they were looking after, for treating him as if he was the most special child in the world we will always be grateful unfortunately I don’t have photo’s of all of them

Happy Birthday
Happy 21st Birthday Teagen 6th novemberhappy Birthday Jon (jake's dad) 8th November
Luke have a happy birthday 15th November
2 years since Jacob's bone marrow transplant 16th November
Happy Birthday James 26th November

Friday, October 27, 2006 2:26 PM CDT

Happy Halloween

Jake in his Irradiation mask
Jake thought his irradiation mask was really “sick” ( which is a good thing ;-)
I remember the day he was being fitted for the mask he had the women in the room
Laughing so hard they had to tell him to stop cracking them up so they could do their work ;-)
The mask was made by a net like material heated up then molded so that it would follow exactly the contours of his face and head the clamps were bolted to the table so he wouldn’t be able to move during irradiation
As they were placing the “material” on his face he is saying “silence of the lambs ..” in a scary voice
And quoting some of the lines from that movie …also “I am NOT an Animal I am a human being”(from the elephant man) Jake could find some sick sort of humour in most situations
He had us all in stitches
He never got to go trick or treating (it’s not a custom here in Australia) though I know he would have loved to he had tried a few times to con me into allowing him to …..

Saturday, October 21, 2006 3:41 PM CDT

Joseph's Doors open
I recieved this email from Joseph's (bob the builders Mum)
it's fanatstic news ;-)

Just a quick note to say that the doors were opened today and after a quick sprint up to the nurses station and back (they weren’t too keen on us going any further, I think they thought we’d escape),
Joseph feels like a new man!!!!!!! You could see his spirits lift.
Hopefully this little taste of freedom will help him get his appetite back.

Will keep you updated. Take care, thinking of all of you.

Jenny
Please continue to send positive healing energy and prayers Josephs way
be good stay healthy
Congratulation
To Rhiannon and Luke expecting their first bundle of joy on the 28th of June 2007
We are so pleased for you both
May you have a happy healthy pregnancy
We can’t wait to meet our newest niece or nephew

http://home.att.net/~scorh/

Monday, October 16, 2006 4:12 AM CDT

Our Beautiful Boy
Jacob, you were always a hero
in ours and everyone's eyes
You took life by it's wingtips
and up and away you did fly
You knew your life's situation
and lived it with all your heart
The memories you left us with
will live forever and never part
Your smile was like the sunshine
spreading warmth where ever you went
On cloudy days when the sun peeks in
we know from you Jacob, it was sent
In the afternoons your pond is beautiful
with the sun rays dancing there on
The flickering of lights reminding us
that your spirit is there and lives on
Sweet Bonnie, who misses you dearly
now has comfort in those times of day
She chases the flickering rays of light
just like when you and her used to play
And when on those nights we dream of you
it always fills our hearts with joy
You are healed and happy and full of life
our hero Jacob, our beautiful boy
Copyright ©2005 Island Princess

Joseph
Please continue to keep little joseph in your thoughts and prayers continue to send positive healing energy and prayers his way
Josephs counts are starting to come up which is fantastic new
bob the builder the little whip cracking champion we love you and send you heaps of positive energy

Happy Birthday24th october
Happy Birthday Bailey and Ebonie
have a wonderful day I hope you are so spoilt rotten ;-)

Thank you
Saralyn for the halloween tag for Jake

Monday, October 2, 2006 10:51 PM CDT

Friday, September 29, 2006 7:19 PM CDT

Ryan’s biopsy
Ryan had the biopsy done on Wednesday
Ryan handles it really well they did a needle biopsy without even a general anaesthetic
Luckily we had some “emla” cream left over from Jake so we put some of that on
Ryan said he didn’t feel the needle go in until it hit the Lump and then he felt it..
he said it wasn’t that bad
(But I think he is just being brave for his mum ;-)
Ryan doesn’t seemed at all worried about the results (we know it is going to be fine)
It will just be like the scare we had with Jonathon earlier,
We are, as you can imagine, a “little” paranoid when it comes to the kids and their healthy

results came in this afternoon All Clear ;-) ;-)
we are all breathing a sigh of relief we still don’t have an explanation for the lumps though
but that’s Ok because there is No cancer

please remember to keep Joseph in your thoughts and prayers day plus 2 (BMT)



Spring
It’s spring here in Australia which also means
“Magpie season” this is the time of year the Maggie’s start swooping at every person that walks pass
(needless to say I never walk the dogs this time of year ;_)
I can remember so many times the boys would come riding down the hill after school all excited because they had been swooped
( I keep saying boys are a very strange breed of people ; )
Most afternoons I would wait for the boy’s at the back of their school where it was easier to get a park also it gave them time to walk over the oval with their mates and chat..
During spring they not only have to contend with the “Magpies” but also the Plovers who were also nesting...
I use to watch (and laugh) at the kids as they would run and duck the birds
Jake though ,would just walk through their nesting area oblivious to their squawking and diving
Jonathon and Ryan would be running flat out and Jake would dawdle in his own little universe
I would yell out to him to watch out for the “Plovers” and he would say “what Plover’s?
(As they were dive bombing him and screaching ……

Thank you
Thank you Sue-ann ^I^ Lee’s mum
for kindly adding Jacob To Lee’s Angel’s page
It was so sweet of you ,
you will never know how much it means to all of us that Jake isn’t forgotten
Sue-ann’s son Lee also lost his battle with Cancer please visit his page’s
Angel Lees page

Happy Birthday Kye for tomorrow

Monday, September 25, 2006 5:47 CDT

Prayers and Positive healing Energy
Please keep Joseph in your thoughts and prayers on Wednesday as he receives his new bone marrow
Prayers and healing energy that his counts bounce back quickly, His new marrow starts right away
Doing it’s job , he has just the right amount of GVH
That he is up and about really soon

Also on Wednesday our Ryan is going in for a biopsy on a lump found in his groin (he pulled a muscle playing soccer a couple of months ago ) it’s probably a “hernia” but they want to double check because of Jake’s AML Though the two are not connected
His blood work is all perfect so we are NOT going to worry
The Doctors are just doing it as a precaution


Dreams a Jacob story
Recently Jacinta had to have some minor surgery (wisdom teeth) she was, as you would expect a little apprehensive about being under the anesthetic
Then she remembered that Jacob always seemed to be so relaxed when he went down to surgery
(He had many)
I remember once one of the kids asked him why he seemed “eager” when we went down to surgical when you would think it was something he should be dreading
Jake said he had “the most amazing dreams when he was under, he hated it when they would wake him up.”…He always cocoon his head under the blanket when the nurses were trying to get him to wake up he said it was so he would have more time to remember what he had “Dreamt”. Sometimes he would tell us what he remembered mostly it was about colour’s and music ;-)
The doctors say that you don’t dream under the anesthetic but you couldn’t tell Jake that he would just smirk as if he knew something they didn’t ;-)
Jacinta was a little disappointed after her surgery she didn’t have any dreams she had hoped maybe Jake would have visited her ;-)

Friday September 22, 2006 5:09 PM CDT

Congratulations

To Kelvin Grove State Collage Soccer Excellence Team(Ryan’s School team ;-)
for being the “Metropolitan Open Boys Champions 2006”
Brilliant game yesterday boys Jake would have been so proud of you all
a well deserved win ;-)

Frog that lives in Jake’s pond ;-)
Two years today since Jake’s first relapse
And our nightmare began again
I will admit the” if only”thoughts are with me today…. If only we didn’t have to transfer to the RBCH
“The faulty tower’s” of hospitals would our Jake be here today
If only “Jill” and Leane Lockwood didn’t rush him into transplant telling us over and over again that we were taking up a bed that could have belonged to a ‘Royal patent if only they had of use the correct protocol if only………I could go on forever
We miss you Jake to the moon and back the galaxies and beyond infinity plus 1


Prayers and positive healing energy

Please keep Joseph (bob the builder) in your prayers as he travels the transplant road

Happy Birthday
Happy Birthday Douglas 21st september
Happy Birthday Kye 30th september have a great day both of you

Sunday, September 17, 2006 6:21 AM CDT

15th –17th September 2006
“living with grief weekend”
Day 1
Jon and I were invited to the Leukaemia foundation’s Living with grief weekend
Set in the beautiful hills outside of Malaney.
The first thing that struck me when we arrived at “Heaven in the Hills” the colour’s of the garden bench the trimming around the house and cabins were the exact blue Ryan and I painted the wall at Jacob’s pond ;-) I was very apprehensive about this weekend and only came because Jon wanted to go, group things are usually way out of my comfort zone but seeing “Jake’s blue” everywhere made me feel it’s was going to be Ok
There were wallabies on the lawn with Joey’s and the beautiful king parrots coming down from the tree’s it was all breath taking and our cabin was stunning
We all met for cheese and wine by the camp fire as each parent arrived we introduced ourselves
I was so pleased to see little Tammy’s mum and Dad as I hadn’t seen them since just before Tammy received her angel wings (they are now the very proud parent of a new son Joshua 12 weeks old ;-)
And to finally meet Fletcher’s Mum after swapping emails for awhile now
Sitting by the campfire was the perfect way to start the evening something about campfires seems to make you feel safe and mellow
We all had more in common than just having our own “angels” most of the children had had AML or a cousin(?) to the AML family CMML and JMML what struck me the most was how similar yet unique all of our stories were there was no “my child was worst off than yours” each parent respected and understood each others story
I also realized how “lucky” we were with Jake’s journey … we had him so much longer than some, we also have years of before “Leukaemia” stories some didn’t have that…. I will be forever grateful that at least we had 12 ½ healthy years….
We all had to bring a symbol the summed up “our Child” I was going to bring an “Onion” (because Jake had so many different layers )but.. I though people may think he was “Shrek” (green and ugly ;-)
So we took an eagle statue his “Goofy hat” soccer ball and photo’s these were placed on a mat with each parent saying something about the symbols and what they meant (maybe I could have done the onion thing ;-) ;-)

Day 2
Jon and I were up early so we went for a walk watching the wallabies and a small Joey feeding
The hills were covered with low clouds it was beautiful
So far every one seem really nice
I’ve gotten to meet all the Angel’s through asking stories about each of them
Some of them were so little when they received their wings …
It makes me feel both Lucky and also a little guilty to have had our Jake for 12 ½ healthy years …guilty I guess because so many families didn’t … we were able to see Jake develop ,hear his dreams his thought about things …. I know there is no reason for me to feel guilt, maybe guilt isn’t the right word …I do wish with all of my heart their parents had also had the same… though of causes. Each and every little one had their own unique personalities they were their own little person , I wish their Mums got to hear their dreams too
This has been a very intense day..
Day 3
I as usual woke with the sunrise so I took a blanket out onto the verandah and curled up on the day bed just watching the wind in the trees and thinking and listening to the birds singing
Another wallaby bounded pass and I couldn’t help but think how Jake would have loved it here..
We had another work shop more talk about feeling our journey and the children
One exercise we did at first seemed so silly sitting on the floor drawing pictures as we listened to music and Christine telling us what to draw (as in symbolic) ….Jon and I sat on opposite sides of the room as we did the exercise when it came time to talk about our drawing of the “journey”
It totally blew me away that our drawings though different to look at (cause he can draw and I can’t ;-)
Were almost identical it was uncanny that we seem to be in the same place in our “journey” being the journey of loosing Jake
Then it was time for the closing there wasn’t a dry eye in the house
I feel honored blessed even for being in the presents of these amazing parents getting to “meet” their amazing “Angel’s” feeling like I knew and loved them all too
Thankyou all and Thank you “Shirley “ for giving us this opportunity
Be good stay healthy

Our Precious Angels
Tammy who loved the colour pink and pooh bear
Fleatcher who loved to stoke his mummies eyebrows ;-) and his crystals
Amy who loved to write poetry and was a very strong young lady
Rebekah who collected Teddy bears and hated the colour Pink ;-)
Jesse who love cars and fire trucks
Tallie with her amazing smile curly hair
Jacob our ray of sunshine
We were all honored to have your spirits with us


Happy Birthday
Please visit Fletcher’s page it’s his 3rd Birthday tomorrow and his first in heaven
Fletcher
Prayer's needed
Please keep Joseph in your thoughts and prayers hopefully he will be well enough to start his conditioning for his BMT tomorrow (Monday)
positive healing energy and prayers for you "BoB the builder" we all love you

Saturday, September 9-16th, 2006 2:21 AM CDT

A Jacob memory
Jacob was near the end of the preschool year all the kids are assessed to see if they are ready to move up to primary school “Big School”
At the end of the assessment the parents are called in to have meetings with the Teacher’s and the person who does the assessment tests
She started off the meeting with the fact that Jake has scored very well on all the tests etc except one very important one so she was not going to recommend he go up to grade 1
We were of causes concerned with that I asked her what was the test he failed on..
She said all children at Jake’s age should know their “full names!”..
I remember feeling puzzled by this and said “he does know his name!”
she said (very uppity ) every time I asked him his name he says “Jacob Michael Scott” and that is NOT his name…
I said “well actually it is HIS name”
She came back with “His name is Jacob McLeod-Steinmetz!!!!!!!”……
Jake was busy doing a puzzle in another room as this was taking place so I called him in to where we were…
“Hi mate can you tell mummy your name?” Jake looked at me as if to say are you serious?
So he said my name is “Jacob Michael Scott” …I said what’s your surname he put his hands on his hips the way he did and said “McLeod-Steinmetz”
Just to top it off I then asked him “ where do you live” He rattled of his address right down to the suburb and post code “what’s your phone Number ? He rattled of our phone number and than said my mobile number as well
By this time I was feeling like turning around to this woman putting my fingers in my ears and going “NA NA NA narna”;-) (but I’m a grown up and we can’t do the sort of stuff ;-)
He then went off to play probably thinking all adults were nuts
The look on this “professional “ person’s face was priceless I said to her “next time try asking the kids their last names and they will tell you (and I will admit I felt very smug, ;-) Jake got a treat on the way home ) ;-)
He was promoted up to grade 1 ;-)
Be good stay healthy
Happy birthday Erin

Ride for cancer
The last couple of days I have been transferring some of our old home Video’s onto DVD
At the end of one of the tapes was a “news bulletin” about kids doing a ride-athon to raise money for “Cancer”
There was Jon,Jacinta Jonathon and Ryan (in the baby seat)all participating in the ride It just seems so ironic that 15 years ago my kids were in there fund raising for “cancer” Three months before Jake was born!


I wonder if we had of known then that “cancer was going to take one of our own Kids “
be good stay healthy
16th september 2006
15 months in heaven
Dear Jake
I thought of you with love today
But that is nothing new
I thought about you yesterday and the day before that too

I think of you in silence
I often speak your name
All I have are memories and your photo in a frame
Your memory is a keep sake with which I will never part
God has you in his keeping I have you in my heart

Love you to the moon and back the galaxies and beyond infinity plus 1

Love Mum

Poem by anon

Please remember to keep Joseph in your prayers as he prepares
For him BMT
Be good stay healthy

Sunday, September 3, 2006 2:34 AM CDT

Sunday 3rd of September
Father’s day
The Kids spoilt Jon rotten again this year
We had a picnic at a park spending most of the afternoon there
With the dogs as well ;-) this is Jon’s second fathers day without our Jake
The Kids made sure there was a card and gift from him (jake) as well
I’m so proud that they always remember to include Jake in someway or other
We miss him so much especially when we all have family time ….

Happy father’s day to all the Dad’s especially my Dad (Leo) who recently had to have emergency surgery on a hernia ( he is doing well ;-)and my step father Ron
I hope you both had a wonderful day
To all the father’s whose child has received their angel wings
My heart breaks for you all but know that your baby is there always in your hearts and memories

Prayers and healing energy
Please keep Joseph in your prayers he has a cold so isn’t able to have his BMT
This week ..
He is otherwise feeling well
I was talking to him on the phone yesterday he is such a character and always has me laughing
He is like a little wise old man in a child’s body ;-) everyone should have a “Joseph” in their lives ;-)
Positive healing energy and prayers Joseph

Happy Birthday
4th September Morgan and Lakota have the best birthday’s both of you
I hope you are spoilt rotten ;-)
9th Erin, happy Birthday Erin party hard sweetie cause this time next year you will be an old married lady ;-) ;-) ;-)

Be good stay healthy
5th september 2006
Fair Dinkum Aussie
Steve Irwin February 1962- September 2006
Yesterday (4th ) Australia lost a fair dinkum, true blue Aussie Icon
Steve Irwin was a conservationist an over the top passionate man
There are not many “true blue Aussies “left in this world Steve was like the crazy Uncle most families have the one all kids aspire to be… it’s a sad day

Two of my nieces Kye and Bianca worked for a time at the “Australia Zoo” with Steve Irwin
Kye worked with the animals Kye said the Steve you saw on the telly was exactly how he was in real life ..he was so proud of her when one day the “otter’s bit her” (that made her a real keeper then ;-)
She wasn’t as happy about the bite mind you ;-)

We went to the Australia Zoo the first time in 1993 before it was as huge as it is now the kids loved it especially the boys all my kids are animal lovers (except Jacinta about birds ;-) I was scared to death about how close the croc enclosures were (can’t say I was a fan ;-)

We went again a few years later after all the renovations Kye had gotten us passes (this was just before jake's transplant) Jake just loved it there that’s was where we had the photo of him holding the eagle and the baby alligator Jake didn’t get to meet Steve but meet his wife Terry though he (Steve)did do the croc and tiger show that day

Australia’s are so in the minority here now the old fashion true blue ocker has long gone Steve Irwin was one of the last
Our thoughts and prayer to his family especially his kids Bindi and Bob
Steves wildlife warriors>

Be good stay healthy
Ps Ryan said Steve Irwin dying is like being told that "superman" had died because "Superman can't die

Thursday 31st August , 2006 3:37 AM CDT

Thursday 31st August 2006
Happy Birthday
Happy 6th birthday today to Joseph (“bob the builder”)
Have the best Birthday Joseph
prayers and positive healing energy
Joseph goes into hospital next week for his bone marrow transplant
Please keep him in your thoughts and prayers
It’s been a long hard three and a half years for Joseph and his family
They still have a long hard road to travel
Positive healing energy and prayers that he breezes through Transplant and comes out stronger and healthier

Babe Jake and Bob

this is a extract from an assignment ryan did for school (i have his permission (Reluctantly;-) to put it on Jake's page


Reflection On Last Year
This is only a brief description of last year.

Last year was a very hard year for me and my family, My younger brother Jacob had been suffering from leukemia for a few years and we were told that they couldn’t do anything for him. When my brother was told he didn’t cry or even ask why him, he was more concerned about my family, he comforted us all that day and I believe that showed how strong a person he was. What amazed me more was his will to live and keep fighting the leukemia this made me even more proud to be his brother because many of us would have given up but he kept on fighting.

We fitted in a lot of things that year, we went to Disneyland in America and we went to New Zealand,
I will never forget how happy he was and the way his spirits were lifted something we hadn’t seen in a long time.

Jacob past away before his 14th birthday on the 16th of June at 5:08pm at home, I held his hand as he past with me and my family beside him. It still doesn’t seem as though he past away but feels like a dream and it never happened and it still feels that way. Jacob wasn’t just a brother to me but my best friend and it feels like I have lost two people at once.

This whole experience has left me a bit disoriented,
like I am constantly in a state of Insomnia (not quite asleep but not quite awake) this has made me unable to concentrate in school that is why I don’t do as well in school anymore.
I wish he were here every day.

Ryan McLeod-Steinmetz

Sunday, August 27. 2006 8:56 PM CDT

Thank you Brenda
Thank you Brenda for the new back ground for jacob's page it's wonderful ;-)
jake's background had been deleted from his cb page (I don't know why)
those of you who are regular CB visitors would know that Brenda visits many of our pages and leaves lovley messages
I'm truly greatful for jake's new background thank you
My loving Dad


Run for a cure
Jon ,Jacinta Bonnie ,Bejay and I all participated in the “Queensland Cancer associations “
Annual “RUN FOR A CURE!” today (Ok to tell the truth we didn’t actually Run! )
I suppose I should have said we participated in the “Walk for a cure” ;-) still we did in Our Jacob’s memory
We started off with the rest of the crowd but it wasn’t long before we were walking at the back Jon ,Jacinta and bejay taking their time Bonnie wasn’t impressed with them walking so slow ..she kept looking back for them and would go until they caught up ..they rate they were walking we would still be there ;-)
This years walk started in the park across from the court house in Cleveland (QLD) we walked along the side of the road pass the Ibis sanctuary and back into the park it wasn’t as scenic as last years walk
Which was up at the Cleveland point
Bonnie and I walked through the walk way into the sanctuary it didn’t add much to the walk but it was a lot cooler in there amongst the trees
I wonder how our poor old legs are going to feel tomorrow ;-)

Thank you ;-)
We would like to Thank “Carole” from “All Trades Queensland” for your amazing sponsor ship
Carole donated $1000.00 in Jacob’s memory and the girls in Jacinta’s office donated $100.00
Thank you all That’s $1100.00 going to the Queensland cancer research
“All trades Queensland help Apprentices find Host to teach them their trades they are a wonderful company (Both Jacinta and Jonathon work for them ;-)

be good stay healthy

Hey Jake! did you catch the balloons we sent to you ?
Love you to the moon and back the galaxies and beyond infinity plus 1

Monday, August 14th 2006 8:47 PM CDT

I received an email today from Jenna’s father Dan
Dan and Jenna have created a site called “Jenna’s Angels”
We are honoured to say that our Jacob has been included on the “angel” page
Jenna’s Angels
This is a small extract of the email from Jenna’s Dad
I do NOT wish to bring up bad memories and my sincerest apologies if I have, I just KNOW that I MUST "pay it forward" - our Jenna is still with us through the will of the Divine...
I would like to ask you all to please look at the page and see if it is ok with you to go ahead and publish this page, linked FROM jenna's caringbridge page:
Humbly and respectfully,
Dan Marcella


Thank you Jenna and Dan for your kindness
you will never know how much it means to us that our Jacob hasn’t been forgotten
Be good stay healthy

Happy birthday
15th Jordan happy birthday mate have heaps of fun ;-)
18th Don you old ricket ;-)
31st Joseph little Bob the builder happy 6th birthday mate, have the best Birthday ever

16th August 2006

It’s been 14 months since we lost Jake
When we released his ashes in June I felt lighter as if releasing his ashes somehow lifted some of the grief and loneliness of his leaving us ..
I don’t know if it was the thought of “him” being out there in his favorite places made me feel as if I had done for him the last thing he asked for…
Though I will admit since going “home” the other week to see my Mum sick in hospital has brought back so many memories and now the missing Jake has become almost over whelming again
I try so hard to honour Jacob’s memory by not dwelling on my own grief by remembering the happier times not the sad… I guess now for the rest of all of our lives there are going to be times when the loneliness of missing our Jacob will be over whelming, times when we just have to allow ourselves (or maybe Myself) to just miss him and let the tears flow and stop trying to hold them back as they are tears of healing as well..

The other day for the first time in a long time I watched the DVD that was played at Jake’s service
Seeing all the photo’s of Jacob growing up running, laughing and playing ..watching him walking and hearing his voice I just wanted to reach into the telly and pull him out, hold him and tell him how much I love him just to feel his cuddles hear his laugh …what I wouldn’t give for all of that back…..
At his service the celebrant read out a letter I had written after Jake died in the letter I said that I wouldn’t have asked him to stay because of how sick he was and how much pain he was in …
There is still so much I needed to say, to show ,to learn I know there was so much more Jacob had to teach me also, as I learned so much from him especially in those last years …what an amazing man our Jacob was going to be…
I love you Jake to the moon and back the galaxies and beyond infinity plus 1

Wednesday, August 9, 2006 7:00 AM CDT

9th August 2006-08-09
Today is Jacinta’s 22nd Birthday

22 years ago today at 1.35 pm our beautiful baby girl was born weighing 7pounds 3oz 19” of perfection
I will never forget the moment she was born as she laid on my tummy I reached down to touch her
Her little hands wrapped around my finger and my heart was completely hers (she has had me totally wrapped around her finger ever since)
I love you Jacinta my beautiful baby Happy Birthday


Tonight we all gathered around the table for Jacinta’s birthday dinner
again there was one member of our family missing
I wonder if there will ever be a day when I don’t feel the sadness of missing our Jacob at every get together
Jake you were there in our hearts ..
we miss you our Sunshine boy and love you
To the moon and back the galaxies and beyond infinity plus 1


up date on my Mum
Mum has been released from Hospital ;-) hopefully she will stay out for awhile
She has decided that she isn’t coming to live with us in Queensland she really doesn’t want to leave Wagga
At least she is feeling a little better that’s something to be Thankful for

Happy Birthday
6th Rhiannon Have a wonderful birthday sweetie ;-)
9th Jacinta happy 22nd birthday mickey you sure are getting OLD mate ;-)
11th Leonie have a great day don’t party too hard ;-)
12th Sarah May happy 4th birthday sarbear
15th Jordan happy birthday mate have heaps of fun ;-)
18th Don you old ricket ;-)
31st Joseph little Bob the builder happy 6th birthday mate, have the best Birthday ever

Thursday, August 3, 2006 7:32 PM CDT

3rd of August 2006

Thank you
Thank you to everyone for your prayers and best wished for my Mum
I drove down to Wagga Wagga last week to see her with my sister Leonie
We arrived home yesterday

Mum is doing a little better the doctors have said there is nothing more they can do for her
Other than make her comfortable
I’m trying to talk her into coming to live with me as the warmer weather we have here in Queensland would be so much better for her
After years of living in the country and on farms not being able to have her animals with her in a nursing home would kill her. I think at least if she stays with us she can have her dogs here too
I don’t know if I will be able to convince her to leave Wagga Wagga and everyone she knows , she can be a stubborn person sometimes ;-)

I thought the hospitals here in Queensland were bad the Wagga Base is so old and grotty looking I don’t know how anyone get well there ,
they talk to the older patience as if they all have dementia
My mother must be so frustrated as she definitely has all her marble and is still as sharp as a tack
I hated leaving her there …..
Hopefully in a few weeks she will agree to live here and I can go down to get her

My sister Marree has been looking after Mum beautifully she must be so tired as she works full time too (kindergarten kids) Thank you Marree ;-)

Wagga Wagga hasn’t changed at all since we left when Jake was two, it was like going back in a time warp. as we hit the NSW Boarder all we could get on the radio was rural news or 7o’s music ;-).
The street I grew up in is exactly the same, I almost expect Mrs Pulos to be in the Fish and chip shop (she would be over 100 by now ;-)

I went for a walk to the botanic gardens one day and walked through the animal enclosures (they are still free );-) I could almost see my four when they were little running to feed the animals, Jake falling over and skinning his knees but was in to much of a hurry to get to the farm animals to have time to cry and let me look at them. Jacinta being chased by the peacocks clinging to my legs ,me trying not to laugh at her (she is scared of birds)
I sat in the play ground where generations of our families have played …
I was able to see the most beautiful sunset, it’s been so long since I have seen a proper sunset. in the city it just doesn’t have the same vibrant colours
I had forgotten about county driving though I almost hit a cow on the “highway” there was a few times we had to slow down for mobs of cattle and drovers along the roads it was an experience ;-)
I was glad to be home
This was the first time I have been anywhere with out Jon and the kids

Be good stay healthy

Happy Birthday
6th Rhiannon Have a wonderful birthday sweetie ;-)
9th Jacinta happy 22nd birthday mickey you sure are getting OLD mate ;-)
11th Leonie have a great day don’t party too hard ;-)
15th Jordan happy birthday mate have heaps of fun ;-)
18th Don you old ricket ;-)
31st Joseph little Bob the builder happy 6th birthday mate, have the best Birthday ever
A new Angel in Heaven
I Have just visited little Skyler's page
Skyler received her Angel wings on Tuesday 1st of August she was three
please visit her site and leave a message for her family
www.caringbridge.org/visit/skylerSkyler
Fly high sweet Skyler ^i^

another child the AML monster has taken
we need more research into Childhood AML
it's about time we Demand more research
so no other family has to watch their baby die ...

Sunday, July 23, 2006 7:50 AM CDT

Prayers needed for my Mum
My Mother (Lola) has been rushed off to the hospital
She has had a lot of breathing problems for the last few years
The medications she has been on are starting to take their toll
Prayers and healing energy that she makes it through this setback
And for a change the Doctors do their jobs and get their act together and make her well

A new Angel In heaven
Little Kaitlyn recieved her Angel wings on Sunday the 23rd of July 2006
after a brave battle with Cancer
(Kaitlyn is from Lebenon) Kaitlyns little Brother Pio also recieved his Angel wings on the 2nd of June 2006
Our Hearts are breaking for he family
please visit her page and let their parents know that they are in everyones prayers www.caringbridge.org/visit/kaitlyns Kaitlyns page

Remembering Rhianna
Simone and kane you are in our thoughts as you remember your Rhianna tomorrow 1 year in heaven Rhianna

16th March 9 Months in heaven

Dear Jacob
It now Nine months since you left us Jakey..
I was remembering the day you were born and how much I just wanted to hold you and never let you go ..I remember the first time I fed you and how your little hands reached up towards my face …you always did that ..as a baby, touched my face or slip your hand next to my heart when you fell asleep.. I use to love to watch you sleep and would be in trouble for never putting you in your cot …probably spoilt you rotten ..but you were my baby and I love you ..
Watching all your “firsts” how determent you were to walk before you had even crawled how you would follow the other kids everywhere ..
I remember your first day at school, I so didn’t want you to go (I never told you that did I?)
The first time you went to a mate’s place to play (without me) so many firsts
How much mischief you got into ;-)remember jumping of the balcony onto the trampoline when you were two ?…I nearly had a heart attack that day;-)
I remember that mop of snow-white hair that I could never keep tidy,
Those “Cheeky” eyes that could suck me in every time..
I remember your cheeky grin
Your sense of humour do you remember sing “Phantom of the Opera” while we were waiting at the pharmacy? …I miss hearing you sing
Yes I even remember your temper ;-)
I know at times we drove each other crazy, it’s because we are so alike you and I Jake, we are both stubborn and like our own way… how I wish I had given in more and not always been so strict
My job was to protect you ,make sure you grew up safe and a good person
Did you know my greatest fear was that something awful would happen to one of you kids? And it did!
…..You were taken from us .. you know Jake, it really sucks big time…

I wish you weren’t the first to go Jake, I wish I could have been there to take your hand and shown you the way ..That’s how it was suppose to be…
I so hope you weren’t scared.. That there was someone you knew to take you over …
You always had to be first (ratbag)
I love you Jake to the moon and back the galaxies and beyond infinity plus 1
I miss you Jake to the moon and back the galaxies and beyond infinity plus 1
Xxx Mum xxxx


Please Visit Andrew click on this link it will take you to his page Andrews page
be good stay healthy
Ryan and Soccer
Liam one of Ryan mates talked him into going to some training sessions over the summer holidays
Ryan has decided to play soccer this season though he found it to hard to go back to the club Jacob and he played for (which is a shame as they were so good to us while jake was sick) I understand why it was so hard for him though…
I have been watching the trail games and every field we go to has a “Jacob” memory
I love to watch Ryan play but my heart says Jake should be there too….
Last weekend was the first game of the season ….
Ryan had wanted to play in Jacob’s number(# 14) but it was already taken …
Ryan in his own quiet way has worked out how to honor Jake, he has a photo of Jacob
(Playing soccer) in his left boot….. I had to stop myself from crying when he told me
Nothing will ever break the bond the two of them have


Be good stay healthy
Please sign Jake’s guess book so we know that people read Jake's page

Thursday, March 9 2006 11:46 PM CST

“Prayers needed”

Prayers are needed for Andrew .
Andrew has just been diagnosed with “osteosarcoma”(this is a bone cancer…)
Andrew has recently loss his little brother “Brooks” to the same cancer
Please send positive healing energy and prayers for Andrew, His Mother Susan and family
Susan had started a page for Brooks his page address is Brooks page please leave a message for them both
Hold you kids tight tell them how loved they are each and everyday

Happy St Patrick’s day to all our Irish friends

This photo of Jacob and His favourite “Irish” nurse Helen
“Helen” could walk in the room with her huge smile and that beautiful
Irish accent and the room was full of sunshine
Be good stay healthy
New baby !
Congratulations to
Lesley (from Rabbit photo Capalaba) and Hubby
on the birth of their new baby Girl “Alexis Clair” 5pounds 10oz
Both Mum and baby doing well

Sad news today there is another sweet Angel in Heaven her Name is “Dakota Rose Smith”
She is 4 ½ years old..
little Dakota closed her eyes and flew to heaven at 9.30am on Friday the 30th of December
she is now pain free no more hospitals no more pain in heaven with our Jacob painting pictures
Fly high baby girl
I will never forget the first day I saw Dakota, she was in room 26.. this tiny beautiful blonde surrounded by toys it was hard to see where she began ;-)

Jacob use to call Dakota “Pixie” he said she has a “pixie face and tiny pixie voice” Our Hearts are breaking for her Mum Madonna, Dad Trent her little brother Zayde

Trent would sometimes come into jake’s room and talk soccer with him Dakota’s and Karta’s dad’s are both soccer nuts too Jake loved to talk about soccer with them..

Jacob and Dakota Mater Childrens

1st January 2005
Jacob's site was given this award today
Thank you to everyone that has voted for his page

Congratulations! Jacob's site finished in FIFTH PLACE in Remembering Our Angels for the current quarter. I am attaching your award.
Hugs,
Saralyn

there are new photo's in the album
Jon's tattoo

This is the tattoo jake was saving for ,for when he turned 18 (and that I was hopeing he would grow out of the Idea by then ;-)

Sunday, December 25,-29th 2005 6:25 AM CST

29th of December 2005

I have changed Jake’s music to “Ain’t no sunshine when he’s gone” sung by Christina Christian
"Sunshine" is one of Jake’s nicknames …I would sometimes call him “sunshine” when he was cranky when he was little..But then when he smiled or laughed it was all Sunshine
This song is also the theme song for the “Queensland Cancer society” for melanoma… every 7 seconds
Someone in Queensland is diagnosed with a melanoma so “slip slop slap “ (slip on a shirt slop on sunscreen and slip on a hat)
Be good stay healthy
Little jayden's mum is having a hard time at the moment jayden's angel date is soon please visit his site Jayden>
25th December 2005

statue Ryan gave me for Christmas (in God's Hands)
I hope everyone had a happy Christmas day
Our day was easier than I thought it would be…
I had a present from Jake for all of the kids.. Jake loved to hand out the presents and would be giving the next one before you even had time to look at the last ;-) he loved Christmas ;-)
The house was very quiet for a Christmas morning it’s usual full of music and noise
Today was a scorcher so the kids went swimming Jon and I watched a movie and fell asleep in the air-conditioning like old fogies ;-)
We missed him today ( we miss him everyday) another first is over ..Christmas without Jake just wasn’t Christmas

There is a problem with Jake’s guess book for some reason the page is linked to another child’s web page I’m hoping it will be fixed soon
There was a message on there I would like to share
Dear Deanne and Jon
We sadly said goodbye to a little friend of ours on Thursday. Her name is Daliah and she was 1 1/2. Another beautiful angel watching over us. I am comforted knowing that she will have your Jacob to guide her and comfort her. Her favourite song was "Bananas in Pyjama's" Do you think Jacob would mind singing it over and over again.... she never tired of hearing it.
We wish you and your family a peaceful Christmas Day. You are never far from our thoughts.
Berni, Shane, Jake and Hayley.
Cairns
though we didn’t know little Daliah our hearts are breaking for her Family..I knew Jake would have loved to sing Banana’s in Pajamas to her he loved the little ones
I remember once we were sharing with Little “Karta” she had been listening to “Barney” all day ;-)
Jake woke in the middle of the night and sighed I asked him what was wrong ..He said “I can’t get that song out of my head!” I aked what song and he started sing “Don’t let the water run” w e both started to laughed… here he was a big “13”year old sing “Barney song’s ( we knew all high 5 and the wiggles too)
Be good stay healthy take a minute to think of a new Angel in heaven “Daliah”

Saturday, December 24, 2005 4:13 PM CST

http://www.geocities.com/linda50ish/JacobStienmetzchristmas05.gif




some of the beautiful christmas graphics sent to jake

Thursday, December 22, 2005 2:30 PM CST

I envy those people who are “word smiths” those that can write beautiful poetry .lyrics to a song or write a story that can touch you to the soul
If I had that ability I could explain what our life is like since Jake left us
There are time’s I miss him so much I feel I will never be able to breathe again there are times when I feel surely my heart has to stop beating its so broken …
There are times when I feel a light breeze on my face and I close my eyes I can almost hear him say I love you mum..I ache for one of his cuddles.. he would cuddle you like that was exactly where he belonged… he would just melt into a cuddle and you would feel so loved..
Jake was a passionate person.. he wore his heart on his sleeve, he could be easily hurt though he had his tough side and a temper .when needed he was strong and loyal you knew he would defend you with everything he had, he was a child of many contradictions.. at times I would wonder how he would be when he grew up and at other times I knew he was going to be a man I would be proud to call my son
I feel robbed of watching him grow, robbed of seeing him graduate, get married, have kids…he talked about being a “Dad “in a presentation for his grade 7 graduation…
he saved every stuffed toy he was given from the time he was diagnosed… he wanted them for his kids when he grew up as they were all special to him.. Now they are in a box for his nieces and nephews when the kids have kids of their own.. these “future” kids are robbed of an Uncle that would spoil them rotten and love them with all of his heart.
I wish I could explain what it’s like to never be able to catch your breath. to feel your heart beat without pain I wish I was able to share how amazing our Jacob was ..How I feel that a part of my soul has gone and I will never get it back again
I wish I could share his laugh his sense of humor… his spirit….My Jacob, my youngest, my baby

Sunday December 18, 2005 5:50 AM CST

"URGENT" Prayer's and positive healing energy needed for DakotaDakota'S Page
Please pray sheis able to spend her little Brother's first Christmas with Him pray she isn't in too much pain and give strenght to her parents madonna and Trent

Jake and Dakota
Little Rhianna’s Mum Simone, her Nana and little brother Kane popped in today
They brought two tea light holders in the shape of a fish and dolphin for jacob’s pond
They look beautiful lit up on either side of the “waterfall”
Thank you Simone we are so touched by your thoughtfulness

Also thank you Michele for the star for Jacob for our Tree


Happy Birthday Christmas eve for little Chloe
Chloe turns 6 and is doing very well (it’s Chloe’s hat Jake has on in his “Leukemia sux banner”)
Which will lead into another funny story for next time ;-)

happy sweet 16 for Christmas day Philip and happy 100 days post transplant for boxing day Philip
fantastic you are doing so well xxxx Philips page>

Another Jacob memory
Jacob and God
(Not a Christmas story but maybe appropriate ?)
When Jacinta was in 5th grade she broke her arm (in two places) playing net ball..
We were at the hospital waiting for her to go into surgery, (she had to have her arm pinned.. my kids never do things by ½’s ;-)
Jake had been very restless All day (and was being a pain in the butt)
While Jacinta was in surgery I was going into the Chapel to pray.. Jake asked where was I going
I said, “in the Chapel” (Jake)”what for?” (Me) “To talk to God, do you want to come in with me?” Jake’s eyes opened really wide and whispered Is God in there? “God is every where Jake he sees everything and is everywhere “
Jake looked really worried I held his hand to walk into the Chapel he dug his heels in and said he wasn’t going in because he was scared I was really puzzled at why he would be frightened
I said there is nothing to be frightened of ..Jake said I can’t go in cause Gods going to yell at me”
“Why is God going to yell at you?”.. “Cause I’ve been a pain in the butt today”…. I laughed so hard ;-) he looked at me with that look he gets on his face (he came in to the Chapel and was very relieved that God didn’t yell at him)

Which of cause leads into another story
When the Kids would drive me nuts I would often say “please God give me strength “ (this I did very often;-) one day when Jake was little he asked me who was I talking to..I said “ to God” Jake walked around the room looking for him

Jake also use to look forward to religion class at school, he use to get heaps of merit card from the teacher I asked him one day why he didn’t get as many merit card from his other teacher
He said cause the other teachers were really boring and the religion Teacher made up the best stories ;-)

One day at the “Mater” Hospital Jake had to go to the Adults for tests. “Ellie” one of the nurses had to take us over ..Jake was concerned because every time we went to the Adults Hospital he liked to sit in the Chapel there (it’s beautiful) he was worried That Ellie would be in a hurry and he wouldn’t be able to go in.. After his test he asked me to ask if he could have a few minutes by himself in the chapel..
Ellie was wonderful she wheeled him in a left him (she waited outside.) I was so touched that she took the time to allow him to do this.. Jake always seemed to feel better …(he preferred the Chapel at the adults as the one at Children’s didn’t feel like a church (to him) he said

Have a wonderful healthy and happy Christmas
Olivera Street (America)
While we were in L.A in April we were taken to a place called Olivera Street
They have some lovely stalls and shops there
Across from the town square there is a beautiful little Spanish church (I can’t remember the name of it )
Jake and I like old buildings and Churches so we all went across to have a look, There was a mass in progress so we weren’t going in thinking it would be disrespectful to ,
a Man came to the door and beckoned Jake and Jon to go in… they sat down and listened for a while (it was all in Spanish so they couldn’t understand what was being said)
After the mass some people came over to Jake and said that the “Priest had asked them all to pray for him ) Jake came out of the church with a tear in his eye and told me what they had said he was so touched .. We were then told to put a photo of Jake on the prayer wall, which we did (there have been many miracles associated with the prayer wall and by drinking the water)
Though we didn’t get our Miracle… This is a lasting and most touching memory of our time there.
Miracles happen you just can’t give up be good stay healthy

Sunday, December 11, 2005 2:09 AM CST

A Jacob story
This ones for Evon ;-)
Those of you who are regular visitors to Jacob’s page by now would know that our Jake was very much an unique person.;-) and had a wicket sense of humour ;-)
When we first moved to Queensland Jacob had just turned 2.. And hated being in the pram (he was always very independent ;-) the malls here were huge compared to where we came from (we had already lost him in one and that was with both Jon and I) I had to take all four kids shopping one day so I borrowed a pair of “Toddler reins”..
As I was getting the kids out of the car I showed Jake the reins and said he was going to wear these so Mummy wouldn’t loose him…he looked at me with those huge blue eyes and shook his head “Me not puppy mummy!” “No Jake your not a puppy it’s just so mummy won’t loose you” ..reluctantly He allowed me to put them on him…I carried him across the car park into the shop’s …put him down so he could walk.. Jacob dropped to all fours started wagging his “Tail’ tongue hanging out panting and barking like a puppy.…Jacinta and Jonathon walked off and refused to walk near us I could feel my face burning it was so red… people were laughing and the more they laughed the more puppy like he went…
(Needless to say I never used them again)
be good stay healthy



16th of December 2005 six months (½ a year)


½ an year with out our Jacob, 6months! It’s impossible to believe that we continue to exists without him
The world turns, people get on with their lives season come and go and Our Jacob isn’t here…
It’s almost Christmas everyone is happily preparing for the festive season and the end of the year..
You know that time moves on, it’s natural, but everyday takes Jake further and further away..
I’m told that heaven is wonderful that he is with Jesus and will have a wonderful time ..
But how do people know that time travels in the same way as it dose on earth? I sometimes wonder if he feels we have moved on and left him behind ..
Each day we have to face the day and move into the next
Until hopefully one day if we deserve it maybe we will meet again..
6 months is to long Jake we miss you more with every beat of our hearts…We love you to the moon and back ,the galaxies and beyond infinity plus one
Have a wonderful pain free Christmas Jacob you are sooooo loved.
Give your kids an extra long cuddle


WHY?

Why must my heart keep grieving,
Why do I feel so alone?
Why did you take my loved one God,
Why couldn't he stay at home?
Why did he have to feel pain,
Why did he have to die?
Why can't I go to sleep at night,
Why do I have to cry?

'My child,' said God, 'please understand,
I know your grief runs deep,
I've heard your many questions
In your prayers before you sleep;
I promised all eternity,
No death shall shadow you,
Your loved ones dwell with me above,
Up in those skies so blue;
They live with me in Heaven,
This place is their real home,
Their time on earth was through,
They learned to love, I called them home.
Your loved one is an Angel now,
Watching closely over thee,
There is no fear or pain up here,
Their soul is roaming free.
I let your loved one visit you
As you lie down in your bed,
He holds your hand and helps you pray
And gently strokes your head.
So please stop asking why he left
And dry your weary eyes,
For he is safe from harm on earth
With me, in the Heavenly skies.'
By Dawn Glenton c)2003
Dawns poems
Prayers and positive healing energy are needed for Dakota and Ryan J's granma she has just been dx with Leukaemia (AML)
A Bereaved Parents Holiday Wish List
1. I wish my child hadn't died. I wish I had him back.
2. I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.
3. If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
4. I wish you wouldn't "kill" my child again by removing his pictures, artwork, or other remembrances from your home.
5. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.
6. I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.
7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.
8. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.
10. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.
11. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.
12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
13. When I say "I'm doing okay," I wish you could understand that I don't "feel" okay and that I struggle daily.
14. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.
15. Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.
16. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
17. I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.
18. I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.

19 please add our childrens names on Christmas Cards you have no idea how much it hurts when you don't
I found this on http://www.l4jesus.com/view/?pageID=250538

Thursday 8th, December 5 2005 5:36 PM CST

Thank you to Linda “Tina’s mum for making the beautiful Christmas graphic for jacob
Linda makes these for all the “Angels”having Christmas in heaven please visit her page and see
All the beautiful work she has done
Angel gifts>

Prayers and positive healing energy for Kane as he undergoes test today we hope all results are clear

We survived putting up the tree;-)
It wasn’t as bad as I thought it would be..I had thought putting all the photo’s on the tree would be hard
But I always seem to find more peace with every photo I see with that big cheesy grin of his (I know I’m strange ;-) our Jake had the most amazing spirit..
Ryan dragged Jon and I to the pictures to see “Harry Potter”
I had been avoiding going as this is another “Jacob and me thing “ I’m the “harry potter fan” Jake would come along with me.. The last movie Jacob and I had a break between hospital appointments we went to the movies at south bank . there was three bus loads of kids arriving and we almost didn’t go
I remember when “Hermione hit Malfoy” all the kids clapped… Jake just rolled his eyes (the way he did) and said, “as if ya would!” Meaning clap in the middle of a movie I thought it added atmosphere (but what do I know, I’m Old ;-) I think he actually got a kick out of it though (at 13 he was too cool)
We then had a picnic at south bank and watched the river cats and did a little people watching before he had to go back..
The funny thing was when ever Jon and Jacinta come to the movies with us they always get lectured from Jonathon and Jake NOT to talk during the movie.. Jon as usual start talking asking (silly) questions Ryan (who is our quiet one ) told him to “shut up" Jon’s jaw just dropped and I started to laugh It was so Jacob like ;-)
Be good stay healthy
5th december 2005
Please keep Dakota in your thoughts and prayers

We put up some of the Christmas decorations this weekend..
We haven’t gotten to the tree yet.. The tree is still the hardest to do
When the kids were little there was always the call of who’s turn it was to put the
Angel on top… so one day being smart I worked out whose turn it was until 2050 ;-)
I just don’t want to see the paper in the box saying who’s turn it is and when …it was Ryan’s turn last year.
So that means it’s Jacob’s turn this year…maybe if we put the tree up we just wont put the Angel on top on the years it’s Jake’s turn…
Jonathon came home from a weekend away camping and was not impressed that we have decorated the house…
Christmas lights are up everywhere… we would go for a drive in the car when it was to hot to sleep and look at all the lights the kids use to love all the different way’s people would light thier houses..
For the last two years we didn’t have time to put up our lights (Jacob was just released from hospital both years the day before and the first year we had to go in Christmas day for meds) we haven’t bothered this year either… maybe next year..
I will be so glad when this month is over … There is the part of me that wants to celebrate Christmas for the reason’s that Christmas should be celebrated… then there is the part of me that say’s how can we have all these happy decorations up and prepare for a celebration when our Jacob want be here!…

Be good have a healthy happy safe Christmas

I had this poem sent to me it's lovely

“I’ll lend for you awhile a child of mine”
"I'll lend to you a little time
A child of mine He said.
For you to love while she lives and
mourn for when she's gone.
It may be six or seven years
Or twenty-two or three.
But will you till I call him back
Take care of him for me?
he will bring his charms to gladden you and should his stay be brief,
You will have these precious memories
As solace for your grief.
I can't promise he will stay,
Since all on earth return.
But there are lessons taught on earth
I want this child to learn.
I've looked this whole world over
In my search for teachers true and
In the crowds that throng life's land,
I have selected you.
Now will you give him all your love
and not think the labor vain?
Or hate me when I come to call
To take him back again?
It seems to me I heard them say
"Dear Lord~Thy will be done"
For all the joys thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may.
And for the happiness we've known
Forever grateful stay
by Edgar Guest

big brother Ryan and baby Jacob ;-)

Sunday, November 27-3rd December, 2005 8:39 PM CST

Thank you to Kris Bradly's Mum for
making this Christmas graphic for
JacobChristmas Angels
It's just beautiful please visit Kris site

We have had some sad news..One of the little ones from the "Mater" has relapsed She isn't doing very well..Please send healing energy and prayers "Dakota's way" our thoughts and prayers are with her family..
Also I learned resently That Little Brandi lost her battle with A.M.L
our heart break for her Mum Tina and family
Brandi would play "Uno"with jake and I in Outies she had so much energy I thought she would be one of the ones that made it....
give your kids an extra cuddle today
"Cancer SUX"

”Ice Santa"
Christmas day would start before the crack of dawn. Jacob would hand out all the presents after dragging everyone out of bed… (even last year when he just got out of hospital Christmas eve after having his port put in after Transplant) Jacob handed out the present because the other three just are not “morning people” ;-)
Every year Jacob would make a “Ice Santa” for the Table
He would freeze 3 balloon’s of different sizes full of water and Christmas day just before we would sit down to eat he would make his center piece
Christmas in Australia is very hot so we don’t have the “traditional” hot Christmas food
In our house it’s mostly prawns, seafood, salad and cold chicken ham etc
We still have “Christmas cake” when the kids were little they would call the Christmas cake
“Jesus’s Birthday cake” we would have candles and the kids took it in turns to blow them out and wish Jesus a very happy birthday and Thank Him for the presents
(I know not your usual Christmas tradition but I always say we aren’t your “Normal” family;-)
be good stay healthy


Jacob’s song
By Morgan Travanion
To lose the one you love: is a pain in the heart.
Sharp like a storm and it’s cold like the rain.
So young in life So young and flying through like wind in the trees.
How you did try to stop the tears your Mum cried.
Telling her it’s all going to be all right.

Don’t want to say Goodbye
Don’t want to cry.
Don’t want to say good bye
See you later sounds just fine.
How we did pray for you to stay
I guess thee is something else that will come your way
I know it will be hard
I know there will be times were you just wont to lay down and cry
But I think of the good
Don’t think of the bad
We will see each other again so don’t be sad

Don’t worry loved ones Please don’t you cry
Go on with your life, wipe your tears to the side.
I’m up here watching.
I hope that everything for you is going to be alright
Please father give us them the strength to lay their pain aside
I know it will be hard, harder still to go on with their life

You don’t have to forget me
You don’t have to cry
I’m in your heart
And you are in mine
I’m up here and I’m praying for you
That you will be all right
So it doesn’t really mean we have to say goodbye
It doesn’t really mean we have to say goodbye

Thank you Morgan for your beautiful words


Thank you to Jason's mum Ann for the beautiful christmas Graphic it was so kind and thoughtful of you ..once again I'm blown away by the kindness of strangers
Thank you with love
Jason's page
Be good stay healthy

Monday, November 21, 2005 5:48 PM CST

“Jacob’s pond”
Jacob’s pond is almost finished I was able to work out a way for Ryan to have the waterfall he wanted.
(Very clever even if I do say so myself;-)
The Animal have all decided that it’s better to drink the pond water then the water out of their boring Old bowls;-) The fish have gotten very friendly they will nib at the cat’s tongues as they are lapping the water the look of surprise on the cats face is priceless ;-) Jake would have gotten a good giggle out of watching them.
When I have moved rocks and things in the water they come and swim around my hands Jonathon sometimes sits with his feet in the water as they really tickle.
Unfortunately this has proved to be the poor things undoing.. We had a visit from a stork the other morning wading happily in the pond having it’s breakfast…the rotten thing ate 5 rosy barbs, 10 mountain clouds, 10 goldfish. The poor fish that are left are so traumatized they wont come out from under the crocodile…
So I have rearranged some of the rocks and have put a couple of tubes under the water so they will have more hiding places..
Jacinta went to the pet shop and brought more fish……..
This morning the bird was back. (the joy of living near the bay)
Be good stay healthy


A Jacob memory
The last story reminded me of another “fish story”
before he was diagnosed Jacob has always had fish of some sort.
He had four gold fish in a bowl next to his bed.. They all had names
(Golum, smegal, leglass and argon (lord of the rings of causes)
Jacob was diagnosed on the 1st of November but due to a whole heap of complications with his first round of Chemo it was over a month before he had day release from the hospital..
The night before it was my turn to stay home.. When I walked into Jake’s room one of his fish had died…
(Because none of us had thought to change the water and everyone had been feeding them)..
The next morning after cleaning the bowl and moving the remaining fish into the bigger tank. I didn’t have time to go to the pet shop to get another fish so I left a note on the table
With a photo of the “fish” for one of the kids to run up to the pet shop and replace it for me…
Well….Ryan saw the note rode his bike up to the petshop and brought a Fish…Jonathon also saw the note drove to the pet shop and brought a Fish…
That day Jacob was able to come home for a few hours ..he was to sick at first to notice there was an extra fish …and by the time he did we had made up a cover story (after what he had been through we didn’t want to upset him… He never caught on ..(so don’t read this out loud ;-) ;-)
Everytime we remember that day we all have a secret giggle to our selves ;-)
Be good stay healthy

Jacob’s Bonnie
Bonnie has finally stopped looking for Jake…she use to break my heart every morning she would run up to his room cry at his bed then go into the lounge room and smell the lounge…run down to the front door looking for Jacob… even when The Three kids were home she would go from one to the other.. then sit at the front door waiting…

Christmas
We still haven’t decided what to do about Christmas Jacinta and I would like to go bush and just let the whole holiday period pass us by…Ryan wants to put the tree up at least as this was Jacob’s favourite part of Christmas (other then the presents of cause)
Jonathon’s easy either way he said he will just work on his car…
The hardest part will be the Tree .. every year I have a photo of the Kids either with “Santa” or in front of the tree reduced and put into a frame to hang on the tree…this will be the first year we wont have all four kids… I thought maybe if they hold a photo of Jake then he will still be in the Christmas photo.. I just don’t know yet.. Another hard thing will be that Jacob brought for me for mothers day (When we were in Disneyland) a beautiful Christmas village he and I both love “Christmas decorations”
I collect angels …how do I put them out now that I have my own Angel in heaven?
Be good stay healthy

Jacob's favourite christmas song "johnny mathis's The Little drummer boy" turn up your sound and enjoy

Wednesday, November 16th 2005 4:49 AM CST

Tuesday 15th November
happy Birthday Luke have a wonderful day
with love

16th November 2005
Today marks the 1 year since Jacob’s transplant…
We had decided to make Jacob’s transplant day a day to remember ..
The hospitals gardener opened the door to the garden outside Jacob’s isolation room so we could put balloons in there.. We had 13.1 for each year.1 pink one as his donor was a “Girl”;-) 1 with a skeleton on it (for Bone marrow ;-)
We were making it “happy Transplant day” Ryan had the day off school Jacinta’s boss gave her the day off also, Jonathon had to work but he was to be there at the time they were going to do the transfusion.. Because it was “happy transplant day” we had to have present of cause! wrapped in plastic (as they has to be disinfected and paper wasn’t allowed in the room) Jacob was in wonderful spirits we had smuggled in some “party food” all wrapped and sterilized
I think the staff though we had all lost the plot Jake had his music going we were laughing and determent that as much positive healing energy there could be would fill the room..
As usual the world at the hospital doesn’t run on normal time and instead of a late afternoon transfusion of his new bone marrow it had arrived early we had to ring Jonathon so he could make it on time (as he had to shower before he could come into the room) we also broke the “rules’ by having all 6 of us in there.. it was to important to our family to do this as a family for Jacob! We didn’t really care what they thought
Jacob was cracking us all up with some of his sick jokes..
Like “I can go into the girls changing rooms now and not get kicked out!” or “My DNA is over 18 I can go to the Pub!!!”he really thought that one was brilliant
..He has such a warped sense of humour our Jake ;-) he could drive me crazy at times but he could always make me laugh ;-)
Jake did so well in Transplant and even in the lead up to transplant day..he was on A.L.L protocol 8 which wasn’t near as potent as the U.K protocol 12 for A.M.L so he wasn’t sick ..the irradiation didn’t seem to effect him either he just looked like he was a bit pink from the sun..
We were sooooo optimistic that Jacob was going to win this battle and still be here to crack us up (our little clown ;-)


"Congratulations to"
Jackson and Little Rhiannon (mooie) (both went through transplant with Jacob) they have made their 1st year Bone marrow working and leukaemia FREE.. Jackson is now 4 and little Rhiannon is almost 2 both kids have beaten the odds and have won ;-)
I’m so pleased for them both as they are amazing kids and send love and cuddles to them and their Mum’s
Be good stay healthy

16TH November 2005
5 Months since Jacob received his Angel wings
I can’t believe our Jacob has been gone for 5 whole months…it still feels like just yesterday he left us..
I can’t say it’s any easier, I don’t think the sadness will ever go ..I worry sometimes he is disappearing I struggle to remember his laugh and the sound of his voice this I find the hardest of all. That one day he will have disappeared completely and we will not remember what it was like to have him here with us..
But then something, a place, a song on the radio will remind me of Jake and I know it’s impossible for him to ever disappear for me
I love you to the moon and back the galaxies and beyond infinity plus 1
I miss you Jake to the moon and back the galaxies and beyond infinity plus 1

so many visit and don't sign.
the messages mean more to us now than ever

Tuesday, November 8, 2005 8:06 PM CST

A JACOB STORY

Spider’s
I’m the first to admit that I’m a total scaredy cat. when it comes to anything with more than 4 legs
Luckily none of my kids share this trait ;-)
Tonight a huntsman spider ran across the floor and as usual I’m on the lounge with my feet as far off the floor as I can get them yelling for help!..
Usually when this happens Jacob would (after teasing me unmercifully) get a jar and paper catch the spider and take it outside and let it go.. OK AFTER CHASING ME AROUND THE ROOM TO “SHOW”it to me) tonight only Ryan came out to protect his poor scared mum ..He just looked at the spider said it’s ok it wont hurt me it’s Just a “Huntsman” and left the room …how was I to get off the chair with this huge hairy spider looking at me?
Just one of the many reason’s I miss my Jake..

Our trip to Sydney
Jacob brought this huge hairy(toy) spider at the gift shop at the Zoo
As we were going through the scanners at the airport they pulled his bag aside ..
Asked us did we have any “live stock” in our possession?”
.. Jake and I looked at each other dumb founded
We didn’t have a clue what they were talking about.. They very carefully pulled this (Toy) spider out of his bag.. the Security guy had to ask his supervisor if we were able to take it on the plane..
It was almost confiscated …;-)
We finally returned to Brisbane (spider and all) Jacob would have this rotten hairy arachnid put in places where I was sure to get a fright.. The other day I was looking in one of the cupboards and just out of the corner of my eye there was Jake’s “spider” I couldn’t help but laugh


Snake
Okay I don’t like snakes either ;-)
One morning The Two older boys had to be at school early for choir and concert band practice
So Jake and I took the dogs for a walk.
We were walking along chatting away not really looking where we were going (well I wasn’t anyway)
Next thing Jacob grabbed the back of my shirt and said “Don’t move Mum!”
When I looked down there was this 10 foot long snake (ok not that big) slithering across the path
As kids we are all taught when you see a snake to stand still or if you can to back away slowly..
Well you really don’t remember these things when your confronted with a humungus snake…
Jake was slowly backing away… He said I looked like the roadrunner running on the spot in mid air
After we were away and my heart finally slowed down “my Hero Jacob was rolling on the ground laughing at his poor old mum..
Sometimes I think I’m just around to amuse my kids ;-)
Be good stay healthy

Friday November 4-8th2005 4:57 AM CST

Tuesday 8th November 2005
today is Jacob's Dad Jon's birthday
****** **********
Sunday November 6th
Happy 20th Birthday Teigen we all hope you had a wonderful day
***** *****

Saturday 5th November
Jon and Jacinta attended the remembrance ceremony at the royal today
They both said it was lovely..they decorated candles and released balloons as well after the service
Jon was able to catch up with a couple of the Nurses that looked after Jake...
Alison (the soccer nut) said that her team had had a loosing streak lately.
On Friday night they wore black arm ban in honour of the kids ..The team asked”Jacob” to help them win a game ….well they won their first game in weeks she said the whole team looked up to the sky and said “Thanks Jake” even in heaven he’s still winning soccer games ;-) they dedicated the Game to him.
Ryan and I released our Balloon’s at Capalaba soccer grounds, (Ryan wanted to do it there) on the main field were Jacob played his last game. .it was a very windy day and the sky was full of clouds the balloons flew up to the heavens and because of the clouds and the bright colour’s of the balloons we could see them go straight up for ages. Each Balloon had a name tag If I knew the favourite colour that was the colour Balloon I got for them of cause jake’s was NSW blue
Be good stay healthy

Friday 4th November 2005
Tomorrow Jon and Jacinta are attending the memorial service at the Royal
For all the kids that have received their “Angel wings” this year and in years passed
Ryan and I have decided not to attend… it’s to soon for us to return to that hospital
So we are going to buy balloons for all the kids that we knew write their names on them and release them at a park ..this way we are a part of the service and remembrance in honor of our Jacob and the other kids
Jonathon has decided not to attend either as he said he doesn’t need to go to a service or release balloons to remember Jacob, nothing will bring Jacob back and he doesn’t need a ritual to think about him…I fully resect his point of view I’m sure he respects our need to do these things ..
Please if you have a minute to stop and remember some amazing kids on Saturday between 10am and 12pm
Say their name’s out loud

Jayden aml
Tammy (aml)
Daniel(b.c)
Rachel(T)Jarryd (B.T
Sarah(m.t) Dylan
Leo(aml{M/RC }Jacob C(m.t)
Jacob M-S (aml){ M/RC}
Rhianna(b.t)

“Love doesn’t end with dying
or leave with the last breath
For someone you’ve loved deeply
Love doesn’t end with death”



Thank you to Heidi’s mum for adding Jacob’s name and photo on Heidi’s site (Page 3)
heidi’s friends in heaven

(On Jacob’s page there are links to other angel site’s just click on the picture’s)

be good stay healthy

Tuesday, November 01; 2005 1:36 AM CDT

1 November 2005 Happy melbourne cup day Hope you all have backed a winner

2nd Anniversary of Jacob’s diagnoses
This day will be etched in my mind for the rest of my life..
For a change none of the kids had any sport on this Saturday..I was sitting on the back step having my morning cuppa Jon was in the shower because he had to go to work..
It was just before 7.30am the phone rang .. The Doctor was on the other end.. Straight away alarm bells were ring ..
Who has ever heard of the doctor ringing on a Saturday morning unless it was bad news?
She insisted we bring Jake down to the surgery and refused to tell me why, as you can imagine my heart was beating so fast.. I knew it was something major..I knocked on the bathroom door told Jon to get out of the shower we had to take Jake down to the surgery..
I had to wake Jake up, told him he had to go to the doctors as she had rang and wanted to see him now..
Ryan insisted in coming with us ..we drove to Capalaba where our doctor offices are..The surgery was still locked as it was only 8am when the doctor got out of her car and opened the doors herself .I remember my knees going weak..
Jon and I went into her room while Jacob and Ryan watched telly in the waiting room..
She broke the news to us that Jake had leukaemia and we had to go straight to the “Mater children’s hospital” ASAP..
She wanted to tell Jacob and we said no as she wasn’t his usual doctor and he didn’t know her (our Dr was on leave so we had to see another one the day before)
We went out to the car and Jacob refused to get in until we told him what was wrong I put my arms around him and said “You Have Leukemia.. do you know what that is?” Jake went really white and said ..”It’s Ok mum! I know that’s cancer of the blood..It’s life threatening ”..I remember looking at Jacob… his face was sooo calm he got in the car..
We had to go to Jon’s work so he could phone head office to organize staff for the day..
Jake and Ryan were sitting in the back ,Jake had his head on Ryan’s shoulder still very calm.. Ryan had his arm around Jacob, Both boys showed amazing strength and love for each other in that moment.. I still see them both sitting in the car
While at Jon’s work I rang home to tell Jacinta and Jonathon to stay at home we were on our way and needed to talk to them.. Jonathon got really angry with me, I think he could hear the stress in my voice and I had to tell him on the phone about Jake (This is something I have struggle to forgive myself for doing)
I heard Jacinta scream.. Jonathon had dropped the phone and had almost passed out..
I don’t think either of them will ever forgive me for the way the news was broken to them ..(not that either has ever said anything to me about it..)
But I just wasn’t thinking properly and I know I did the wrong thing but nothing I can ever do will rectify that mistake…
All this Time Jacob was still so calm.. He went into his room and packed his bag for the hospital while I rang his Grand Parents they rang my sisters and brother . Jon then rang His family ( we never heard from them!)
By 10am we were at the “mater children’s hospital” and were met by “Michelle” (who would turn ut to be one of Jacob’s angel nurses) we had to wait in the day unit for a while the four Kids watched T.V while, Jon and I had our first meeting with “Dr Ram Sappiah” we were told what was to happen in the next few days that to pray he had A.L.L and not A.M.L Pray it wasn’t already in his nervous system
We had the fact That Jacob was so fit and healthy that his “blast cells were very low.. platelets were still 222 only his Hb was low 96 (other than the low HB you would never of suspected that Jacob had anything wrong) The Doctors told us it was a fluke he was diagnosed so early .all this was in our favour
Jacob was called into the room Jacinta Jonathon and Ryan came too..I remember sitting there on the exam table holding Jake’s hand ..Ram spoke to the kids Jake asked and answered questions I hadn’t even thought of myself ..all the kids seemed to have there heads together asking all the questions neither Jon nor I had even thought of.. all this time Jacob was so calm ..I couldn’t believe how grown up he was..
Jacob was shown to room 27.. Dr Michael took him to the procedure room to have blood drawn and his first cannula in (Jacob had only ever had 1 blood test before and that was on the Friday )
Jon went in with him (I faint at the sight of blood) I heard Jacob call out to me .. Thinking he was frightened or hurt I ran into the room.. Jacob had a huge smile on his face “Check out all the blood mum” he thought it was so cool all this blood sitting there in what looked like a thousand vials
The room started to spin, and I had to get out of there fast.. Jake and the doctor thought this was so funny and believe me I coped it the whole time Jacob was at the hospital ;-)
Jacob set the tone for our family That day.. he was going to treat the whole “Leukamia thing” as an adventure he wasn’t going to let it get him down … so we decided that day we would be as upbeat as Jacob needed us to be. we would fall apart by ourselves, if he needed to fall apart too that was okay we would be there to catch him…but he never did!
I stayed that first night with him (and for many from then on) .I didn’t sleep at all ..that was one of many nights I would have a nurse sit on the end of my bed and chat help put my mind at ease
I will never forget that night and listening to the music of “Helen’s”(nurse) Irish accent
Jacob sound asleep with tubes hanging off him .. this was to be our life for the next 20months….
On The Monday Jacob had his first Lumber puncher and Bone Marrow aspirate by the late afternoon
We had the results we didn’t want!…Our beautiful super fit Jacob had Acute Myeloid Leukaemia” AND it was in his nervous system (both results brought his chances of his making it down to a ridiculous percentage)
I can’t believe how naive Jon and I were… we were so sure our Jacob was going to beat the odds.. Because Jacob had never been sick he was super “healthy, ate healthy, rarely had junk food ,I breast feed him for his first 14months. Neither Jon or I smoke or drink …How could he have cancer???
He’s only 12 ½ !!!!
Jacob started on the “U.K protocol 12” that day it’s was a very intense protocol.. He was a very sick boy before the first round was finished

If a positive never give up attitude and a billion prayers is what it take to get you through this… then Jacob should still be here..
He never gave up ..Never stopped making plans.. (Other then telling me what he wanted done if he didn’t make it) . He NEVER mentioned not beating the monster called “leukemia”
I wonder! if I knew then that we would still loose him, if I would have let him go through all that pain ….I know! We had an extra 20months.. and I also know I should be grateful for that..
But it’s just not enough..
I love you to the moon and back the galaxies and beyond infinity plus 1 My sunshine boy..
I miss you to the moon and back the galaxies and beyond infinity plus a billion
I wish so much that I had ½ of our Jacob’s strength and courage
He is to special to be forgotten… forever loved


PS
I’m often asked what Jacob’s symptoms were :
Jacob actually didn’t have your typical “leukemia” symptom’s .. He had no bruising ,no temps , no vomiting, no more tired then the average almost teen going through puberty He was just off his game…
Jacob played a lot of sport
He was in an academy team for club soccer trained three times a week and played hard on the weekends… he played both soccer and basketball for his school, rode his bike most days the 10km to school…
He had had some stomach pain’s but nothing you would worry about he was checked over by the doctor and there was nothing wrong (add a little fiber to his diet ;-)
He did have a little asthma (the Dr put him on ventolin for sport induced asthma)
he had pulled a muscle in his back during the grand final and asked to come off the field. after the game we took him to the doctor he said it was fine.. light stretches heat pack etc,
I was watching him play basketball and he wasn’t as fast as he usually was something wasn’t right I just couldn’t put my finger on it ..he wasn’t sick..no temps nothing..
the Thursday night at soccer trials (he was selected for rep trials) he complained of a headache and asked to come of the field ..Now if you knew Jacob you would know how unusual it was for him to sit still at all.. He looked a little pale so The next morning before school I made a Dr appointment.. I asked the Dr. for a blood test (Ryan has trouble with his Iron due to asthma medication so I thought it might be something like that) Jacob had his blood test and then went off to school
This was the last day he would attend school until May 2004 …
"balloons"
I drove to the Mooroondu soccer fields today and released 2 balloon’s for Jake
I sat and watch the balloons disappear and remembered watching him play
He played for Mooroondu for 4 years, Brisbane city for 2 and Capalaba for 1 season
(He played at Capalaba off season for 6 aside) and at Cornubia for Futsal for 3 season’s
Who would of known 2years ago how much our life would change when that Monster leukaemia
came into our lives


Happy Birthday Teigen for the 6th
Happy birthday Jon (8th) Luke (15th)
16th 1 year since Jake's transplant
Thank you Jacob's donor

Saturday, October 22, 2005 3:44 AM CDT

Song playing:John Farnham's "Angels"
Tuesday
today is 3 months since little "Rhianna" recieved her angel wings.. please visit her memorial page and leave simone a message she is really struggling with the loss of her baby girl
Rhianna
be good stay healthy
*****
Sunday 23rd October

Ryan brought a tiger and eagle statue today and put it down near Jacob’s pond.. Ryan loves Tiger's and Jacob loved eagles I think it was a representative of "Ryan and Jacob" together.. Ryan is missing him so much..I dont think Jake's pond will ever be finished Ryan wants us to add a waterfall now..(Champaine taste on a beer budget). Jonathon has started to be able to talk about Jake more.. Jonathon had been in denial the whole time Jacob was sick I'm sure he thought it was all going to go away. at least now he has started to share some feelings.
Be good stay healthy

A Jacob memory

Jacob loved to cook
I was talking to “Bob The Builder’s “Mum the other day, we were talking about the foods kids like to eat..
Our Jacob always had the best appetite he loved to cook ..Made the best home made burgers, scrambled eggs (with cheese).Crispy bacon and poached eggs (just the way I liked them)..And cakes.. He liked to cut the cake as soon as it came out of the oven and have it hot with ice-cream ;-) ;-)
I also remembered some of the combinations of food Jake liked..
Like tuna and cheese toasted sandwiches, Feta cheese wrapped in baby spinach leaves.. Grated carrot and cheese sandwiches, the usual vegimite as well, he wouldn’t be an Aussie kid if he didn’t like his vegimite
He is the only kid I know that took raw broccoli in his lunch box to school (when he was little he called them “little tree’s”);-). As well as a bag of snow peas (that was his treat when we went shopping together)
Out of all our kids, Jake was the big veggie eater (which is probably why we were in such shock when he got sick)
He loved “Brussels sprouts” cooked in garlic butter,
Jacob always ate his hamburgers in a circular motion.. it was a sight to watch him eat a burger… he always took it apart and ate all the salad then he would put the bun and meat together and eat round and around until all was gone..
How he would take the top of his meat pies (he never ate the top !but would give it to me because the tops the best part!) and smother the rest in tomato sauce.
And love marshmallows in his cuppa (Tea).. ;-)
Jake liked his pasta without sauce . . and melted cheese
His favourite pizza was “meat lovers” with extra BBQ sauce.
He would live on Sushi and noodles if you let him …(The thing he missed most after transplant and wasn’t allowed to have;-( he loved Japanese food
And all “sea food” from oysters to lobsters.. you couldn’t get near the plate if he and Aunty Leonie had prawns ;-) you really took your life in your hands then ;-)
Yeah! I know! He was one very unique kids our Jacob.. that’s why we adored him so much…
..
Funny how a simple conversation about recipes and kids can bring back so many memories..
Thanks Jenny
Be good stay healthy

Thursday, October 20, 2005 4:06 AM CDT

We have been asked to participate in a “Palliative care and bereavement care” Study through the Uni and “Royal children’s” hospital
Both Jon and I were interviewed separately.. We were asked about how Jacob was treated from the time of diagnoses in 2003 until he went palliative in February 2005 .
We were able to tell them the caparisons in treatment at The “Mater: to “The Royal. How for example there was so much more laughter at the Mater..That Jacob was treated as if he was special by every staff member how he had an amazing relationship with Dr Ram and was asked his opinion and was treated as if he had a brain in his head. How as parents no matter how stupid the questions we asked we were answered or if they didn’t have an answer they would find out.. we were never made to feel as if we were total waste of space or stupid .at the Mater we had mostly the same Nurses looking after Jake they always came into the room and said G’day and had a chat with him or they would do something just to go the extra mile for example when Jake started chemo and had that horrible metal taste in his mouth and couldn’t shake it, Nurse Annette left him a bag of “chupa chups” to help, the time he was craving a cuppachino and Nurse Karen went across to the coffee shop on her break and brought him one (this was when he had the aspergillus and I couldn’t leave him) How when we had to transfer to The Royal that we had phone calls emails and visits from the “Mater Staff”..
How when Jacob Died the staff were so supportive attending his service bring balloons (as well as 1 moron one) How Ram came the day after Jacob’s service and looked through photo albums chatted and laughed about some “Jacob” things (not as a Doctor but as someone who cared)..
Then we were in total culture shock at the Royal the kids do nothing but watch TV they have to stay in bed (Jake was told off for getting out of bed to go to the toilet on his first day on “Banksia”) he was told this is NOT the “ Mater’ you have to go by our rules!! No one had told us the rules this was the first time he ever cried!!!!
At The royal there is no such thing as privacy the doctors talk to you in front of other families weather it’s in “Outies” or on the ward when we were told Jake had relapsed the last time we were told in front of another family we were given NO privacy..The palliative care Nurses would come into “Outies and talk to you where ever you were sitting (didn’t care if Jake was listening or even acknowledge his existence ) How we were had been told that there was Nothing the “Mater” had to offer us they never told us Jake was entitled to home care. so we had to drag him to the Northside to the hospital( when we didn’t have too) How we have heard Nothing from The royal since Jacob died how the only time I have heard from Them was to tell me to bring back the feed pump (That they had said they were going to collect) This call came on Jacob’s 3 months anniversary no “Gee I’m sorry your sons dead” it was just give us back our pump!!!! Not one word from The Doctor’s …
We did get a letter about an memorial cuppa for all the kids that have died this year..
To be fair there were a couple of nurses on “Banksia” that treated Jacob that were lovely ,There was the two Alison’s(Big Al who loved soccer and Bossy Alison), Candace ,Liz The agency nurse Deborah,the cleaning ladies The two Debbie’s, when we were on other wards the staff were so lovely to him and us we were never called the “Mater”family there.., radiation ,and lung function Yolanda and Carly in Physo and Leigh our SW….
But there was no laughter no fun ! we were told we laughed to much..(I wonder, if this is the reason they loose so many kids?)
Any way after my huge rave as you can see the study has brought up some strong feelings ..
I’m hoping by participating The next “Jacob” will be treated like a living loving Human being.. not an already “dead” child it wasn’t Jake’s fault they failed …….
Be good stay healthy

Sunday, October 16, 2005 0:27 AM CDT

song playing:Wendy Mathews "There's not a cloud in the sky" Turn up the sound

4 months
I was listening to Wendy Matthew’s song “ There's not a cloud in the sky
IT has a line that goes “ I thought it would rain the day you went away”
I remember the drive in the ambulance trying to get Jake home on his last day..
He was in so much pain and because the hospital had marked his pain medication wrong the ambulance people were unable to give him pain relief until we were able to contact the hospital .we were almost home before he could be given any relief…
I remember looking at Jake. and then out the window, telling him each suburb we went through that we were almost home to hang on and I kept thinking that the sun shouldn’t be shining it should be raining … cause how could it possibly be a beautiful day when my baby was dying…
4 months …how can it be 4 months? How can my vibrant full of energy boy with the mischievous eyes no longer be a part of our world? Our Jacob with the most infectious laugh the strange sense of humor…. How can anyone with his spirit and most positive, never give up attitude be gone?
Maybe we loved him too much and it was decided to take him from us… maybe we didn’t love him enough so it was decided we didn’t deserve. Him… for what ever reason the world “SUX” without our Jake
Jacob said to me once when I asked “why Jake? Why you”? He said that” God had his reasons and God knows why!” He just accepted it that, that was the way it was and the way it was going to be….
How I wished I had his wisdom.. his acceptance…..
I love you to the moon and back the galaxies and beyond infinity plus 1


My Tears by Dawn Glenton (C 2002
My tears could fill a river that the burning sun had dried,
I never knew a heart could break or how I'd feel inside.
That awful day I lost you, the day that you flew home,
Was more than just my loneliest, my child, where do you roam?
Is it true you are an Angel now, on high like others say?
And can you watch me from afar and guide me through the day?
Can I really make you sad if I'm still crying every night?
Is it true that you can comfort me, kiss my forehead very light?
My tears will not stop flowing, I miss you very much,
Please wait for me 'til I come home, 'til I can feel your touch.
That day the sun will shine again, no more will my eyes weep,
As I see you in Heaven with our family all complete.

Dawns Angel Poems THANKYOU
Thankyou to "Quilts of love" and all the quilting "Angels" for the beautiful memorial Quilt for Our Jacob ...It's just beautiful we can never Thank you enough
Jacob's Quilt of Love Please visited other Angels at their site let their families know thay are not forgotten
be good stay healthy



Jake loved roller coasters the faster the better

Tuesday, October 11, 2005 6:34 AM CDT

Music
Jake and Shannon (music therapy at the Mater)
Those of you that knew Jake would know how much he loved music anything from Brahms to Eminem
I always knew when the pain was getting to much for him (he never actually told us he was in pain ) but would ask me to sit on his bed and sing “Billy don’t be a hero” he always asked for that when he couldn’t get any relief from the pain
(I would then press for the nurse to get him pain meds) unfortunately Jacob spent most of the 20months he was sick in pain
.
He also had this amazing ability to take his mind somewhere else.. I have seen them do procedures on him and he wouldn’t make a sound or move but would have this relaxed look on his face like he wasn’t there.. Sometimes the nurses or Doctors would say something to him and I would say he’s not here.. He has taken himself away from all this..I truly admire his ability to do that

When the kids were little I would sing them lullabies to get them off to sleep each had their favourite song that was just for them.
Jacob and Ryan use to make me sing every song… I don’t know how many times I would sneak out of the room thinking they were asleep to hear a little voice pop up to remind me I had forgotten a song… they knew what order they were to be sung in and if I forgot I had to start from the beginning .. Now! if you heard me sing you would think they would pretend to be asleep just to get away from the noise ;-)
Jacob loved Christmas carols (all year round) ,his favorite was “The Little Drummer boy” only sung by” Johnny Mathis” last year I couldn’t find it anywhere we searched the house from top to bottom we went to music shops and couldn’t get it.. Tonight for no known reason I decided to look through some of my old vinyl records (Yes I’m THAT old and I don’t have a record player anymore) I couldn’t believe it, but Jacob’s “Johnny Mathis” CD fell out…How or why it was in that cupboard I don’t know ..we have decide that we weren’t having Christmas this year maybe Jake’s trying to tell us something ;-)
This is the second time I have found something out of the blue like that..the boys all received for their christenings a St Christopher one of them had gone walkabout ages ago.. While looking through the old photo’s the other week out fell the missing St Christopher.. These albums are looked through at least ones a year… (we have so many of them Jon use to work for a photo lab and was a photographer so you can imagine how many photo’s we have) it’s just an amazing coincidence that both things have turned up…
Be good stay healthy (cheeky photo of Jake ) he really loos like he was up to no good in this one ;-)
^^^^^^^^^^^^^^^^^^^^^^^

Extra prayers are needed for Philip .Philip was going wonderful through Transplant but has picked up an infection ..Infections at this time can be extremely dangerous so please send positive healing energy and prayers his way
Be good stay healthy
Ryan's mate Kane's grandpa died this week our thought are with Kane his brother Brock and family as they go through the pain of loosing a love one
be good stay healthy

Friday, October 7, 2005 5:32 AM CDT

A Jacob memory 1st day of school
Jacob first day of “big school” grade 1
Jacob like most kids was very excited about going to ‘big school’ with the big kids
He was up early and in his school uniform before I had gotten the other three out of bed… he could hardly wait until 8:30. I dropped Jacinta off at her school and drove the three boys to theirs
I parked the car to take Jake into his classroom
“It’s ok mum I can go in by myself. I’m a big kid now! see ya”
He was not impressed when I told him I had to walk in with him as I had to see what class he was in and do the usual first day stuff,
Well that didn’t go down well at all I was on strict instructions not to walk in with him he was walking in with Jonathon and Ryan so I waited until they had gone through the gate and then followed ..
After taking the boys to their rooms (which they found totally ok.. to have mum with them..)I took Jacob up to his classroom he was in” Mrs Johnsons” class she greeted him at the door and Jake said see ya mum love you! And off he went
That afternoon I was waiting with the other 1st grade mums.. Jacob came out of the classroom all smiles (slid down the banister) again he was put out cause I was treating him like a “baby” waiting in the school for him and could I please wait where I pick up the boys from now on because he really is a big boy!!!
(Problem with that was it was school policy that the grade 1s mums had to be there to pick them up )
He was always an independent boy our Jacob ‘-) ;-)

At the beginning of each new term I use to put little note in the kids lunch boxes I would write something like.. Have a happy day at school, be good learn heaps, have fun I love you..
One time we all slept in and I forgot the notes …Jacob came home from school and demanded ”where was my love note? “I looked and looked and couldn’t find it!!” I made sure I never forgot again ;-) ;-)
After school each day I would say “so did you learn anything new today?” They would all tell me something they had done in class or playground etc.. Jacob would often answer that question with “Nope” after couple of days of this answer I said to him “well what do I send you to school for?
Jake came back as quick as a flash with “I don’t know it’s just a waste of my time”I think I should stay home” ;-) (I don’t think so!) ;-)
be good stay healthy


grades 2 to grade 7
New photo's in album

Wednesday, October 5. 2005 4:53 AM CDT

God saw you were getting tired and a cure wasn't meant to be,
So he put his arms around you, and whispered 'Come with me,
I've prepared for you a mansion, a place you'll call your home,
Where you will see your loved ones passed and never feel alone.
You'll never leave those left on earth who'll mourn you evermore,
For you can watch and guide them all, help keep them safe and pure.
Some cannot understand my son, that death is not the end,
So you can help them see the light, their broken hearts you'll mend.
One day they too will come to me, they'll see our streets of gold,
And live in peace, eternity, where nobody grows old.
I let you live your life in full, you served my purpose well,
And now it's time to live some more, up here, where all good dwell,
The devil cannot enter here, this place is pure and free,
I saved it from the greedy, it's for my children to be with me.
Now walk with me this golden path, let's open Heaven's gate,
And hear the Angels welcome you back home on your birthdate.'
by Dawn Glenton (c2002 Dawns Angel Poems

This Photo of Ryan and Jacob was taken during Jonathon’s gymnastics competition (which he did very well at) It’s one of my favourite candid shot’s of the two of them..and pretty typical of how close they are.
Be good stay healthy

Monday,October 3,2005 4:53PMCDT
I thought I would share some photo's of my four

I have been going through family photo's.. I thought they would make me sad and miss Jake too much ...but looking through them made me happy to see the cheeky full of life kids we had before the leukaemia monster took us over..
be good stay healthy

Our hearts and prayers go out to the people of Bali and for the 22 people who lost their lives
^ ^ ^ ^ ^ ^ ^
Please visit little Rhianna’s memorial site it’s beautiful Rhianna
* * * * * * *
Happy 21st jaren have a wonderful day party hard

Friday, September 30, 2005 4:53 PM CDT

Our hearts and prayers go out to the people of Bali and for the 27 people who lost their lives
^ ^ ^ ^ ^ ^ ^
Please visit little Rhianna’s memorial site it’s beautiful Rhianna's
* * * * * * *
Happy 21st jaren have a wonderful day party hard
* * * * * * * * * *
Fishing story

Jon took all four kids to the peer at ‘the point’ to go fishing (very brave of him)
Jacob was about 4 years old
Jon’s “watching” the kids as he and they fished ..
Next thing this man taps Jon on the shoulder and said “is this your boy?” as he was holding Jacob up by his jumper
Jon looks at this bloke holding Jake and said ”yeah.?.”
“Well mate! I just caught him as he was going to jump off the peer into the water”
Jon was a little shocked (and I think very scared of when I would hear this story) seems Jacob could see all the fish swimming around the pylons… he couldn’t catch any with his fishing rod so he was going to catch them by hand…
(Jacob had no fear)
;-) ;-) ;-) ;-)

(Jacob was about 10) . One day Jon and Jake decided they were going fishing for that’s night tea..
Now in the 28 years we have been together I have yet to see or hear of Jon actually catching a fish..
So I started cooking tea while they were away
When they got home Jacob was all excited “look mum we’ve got a fish “
It was a a terrific size bream enough to have a good feed
I was soooo proud of him I took heaps of photo's of him with the fish and his rod to send down to poppy (another fishing fanatic that never comes home with any fish)
I asked Jake where they caught the fish he said “at the point” he kept giggling.. It then dawn on me the little bugger caught the fish alright!… At the fish shop!….


be good stay healthy
Baby Photo's of Jake in Album

Monday, September 26, 2005 6:06 PM CDT

A Jacob memory

When the kids were little and they weren’t happy with something Jon or I said or did
(Most kids go through the “I don’t like you Mum/dad faze) I would always say to them that when they were in heaven waiting to be born the angels asked them which parents they would like to live with?
And they picked us !
One day when I said this to Jake he came back with “well you must have been in a good mood that day!!!”
We laugh at this one a lot as the kids were growing up

Jacob had a wonderful imagination.. other times if he had been in trouble or didn’t get his own way about something he would ask in the most serious voice “when are my REAL family coming back to get me?
He had this whole other family with sisters, brothers and pets I think he even had names for the “Mum and dad”… Jonathon use to tell Jacob he was from “mars” and it would take them to long to come and get him; - )

(On the night Jacob died mars was eclipsing the moon Jonathon said Jacob’s other family has taken him home )
Be good stay healthy
Thank you to "Helen" from big brave bannners for jacob's new banner (and the old one) The words on the banner mean so much to be ..it's something Jake I said to each other everynight
*****
we have had so many hit on Jakes page not many people sign the guess book anymore I understand that sometimes you may not know what to say ...but the guess book entries help us know that he isn't disappering and hasn't been for gotten Just a "hi" is enough!
be good stay healthy
Big Brave Banners

Happy Birthday for Friday Kye
have a wonderful day party hard
Tuesday 27th
Please send some positive healing energy and extra prayers for Jayden he is in need of extra prayers at the moment Jaydens page
Also please keep philip in your prayers and send him positive healing energy too
both boy's are in transplant Philip
********
A huge thank you to everyone who has signed our Jacob's guess book you have no Idea what the messages mean to Jon myself and the kids "love you all"
be good stay healthy
ps new photo's in album

THURSDAY, September 22, 2005 6:19 AM CDT

Jacob after retna reatatchment he had to lay like this for 10 days "Lotus position" jakes strange sense of humour

Thursday 22nd September 2005
Jacob waiting to be presented with his premireship medal
One year today we were told of Jacob’s relapse and our nightmare begins again….
I will never forget the look on Dr Rams face when he told me Jacob had relapsed I knew it was coming call it a mothers instinct I don’t know but I new long before we had asked for an LP and BMA
Dr Ram had been away on leave I was concerned with Jacob’s blood counts the dr looking after Jake said they were normal but when I read them alarm bells were ringing big time…. I knew Jacob’s count didn’t run like other kids.! even his blood work was unique! (Little like Jake was) Ram was also surprise they didn’t pick up on the counts sooner I think he was a pretty angry about it at the time,,
The whirl wind of changing hospital started the following Monday I will always be so grateful for the Nurses at the Mater who sat with me that weekend at three in the morning and chatted … “Bob the builders” mum “Jenny” who saved my sanity then and in the months to come,,
I will never forget how unfazed Jacob was when he was told he would need a transplant his courage and strength saved me… I would look at his determination and refused to allow myself to buckle..
He never cried when he was first diagnosed or about the relapse he just said “Ok lets get on with it”..
I never found out where he got his inner strength from …when we lost Jacob we lost the strongest person in our family..

I received a beautiful card from Dr Ram the other day .. He wrote that he saw the card and it so reminded him of Jacob he had to send it, he also said that he missed him..
We are so touched
Dr Ram is the head of oncology at the “Mater” and is not only a wonderful doctor but also a truly amazing compassion man. HoW I wished we had have fought harder to return to the Mater and Jacob could of spent his last days surrounded by loving caring people..

Ryan and I painted the wall near Jacob’s pond yesterday (it’s very blue) I think you could see it from the moon ;-)
Tonight I brought some fairy lights Ryan and I are going to hang them so at night it will look like stars
We still need to get more bush rocks and plants we also need to win the lotto so we can pathe around the area ;-) ;-)
Today we received another card from Nova (the radio station) just to say they are thinking of Jacob and us that was so sweet

there is an Eagle clock (jacob loves eagles)I have the wind chimes he use to hang on his chemo pole his dream catcher you can see them in the photo but the dragon fly wind charm that bonnie plays with

Please send positive healing energy for Philip and Jayden
Be good stay healthy


Sunday 18th September 05
A Jacob memory
Today Jon and I went for a drive to the coast to go to the markets at Carrara just for a drive to get out of the house…
We drove pass the sport stadium there and realized that the “Champion of champions” Gold coast cup soccer carnival was on…
I cant believe just 2 short years ago Jacob was playing in the same carnival against team from all around Australia, New Zealand and the islands… Jacob had had the best carnival his game was so on fire that week (it’s a full weeks carnival) Until he got a beautiful black eye playing against New Zealand (it was an accident Jacob said he had the ball the other player tried to tackle him and some how Jacob got whacked in the eye) It didn’t stop him playing though. it wasn’t until after the game that I saw his eye swelling and had to take him to the st johns tent, we then had to take him to the doctors it was so swollen ..The next day the boys had semi finals on we arrived at the fields to tell his coach and team mates that Jake wouldn’t be playing as he couldn’t see out of his black eye.. His coach kept saying you can play cant you Jacob??? Of cause, my soccer fanatic son said he would. the coach put him as a back so he wouldn’t risk being hit again (Jacob played a forward) it was sooo funny because he couldn’t see out of one eye and it was pouring with rain he had limited vision out of the other one Jon and I were laughing so hard he looked really funny as he kept loosing sight of the ball ;-) He wouldn’t give up and tried his best.,in the end I had to tell his coach to take him off as he wasn’t able to see it … his coach didn’t want to take him of the field because they were playing a very strong team and he needed Jacob’s “magic left foot”(and skills)…
He and Ryan loved playing in the all week carnivals it seemed the more games they played the better they play and the happier they were..
Jacob’s team was knocked out of the competition ;-( Ryan’s team went on to win
be good stay healthy

FRIDAY, September 16 Sunday 18th, 2005 6:59 PM CDT

16th September 05
3 months today since Jake went to heaven
I can’t say it’s getting any easier, we miss him just as much today as the day he closed his eyes for the last time and left us.
People are forever asking us how we are? There is no truthful answer to that question .. we say we are
“Fine” and yes we miss “Jake”…
We are told how strong we are…how well we have coped with loosing our Jacob ..
In truth some day’s it takes all my strength not to stand in the middle of the road and let out one
Almighty primal scream as that’s truthfully how I (we) feel …
I some times don’t fully understand how the sun can shine the birds sing without Jacob in the world I’m sure with every beat of my heart that this is how all Mothers feel when their Child has been taken from them too soon….
Jon and the kids are keeping themselves busy with work and school.

Jonathon plays a lot of squash and works hard he comes home very tired.

Ryan has been staying at mate’s places a lot on the weekends and has thrown himself into playing golf. he isn’t sure if he will play soccer again. We worry how he is coping , he and Jacob were closer then most brothers. We always said they should of been twins ;-) Ryan has always been our quiet one I ask him if he is Okay he said, “he will tell us if he isn’t”!

Jacinta and her friends did the door knock appeal for the cancer fund she is busy at work. They all seem ok though we all have our moments.

Jacob is still very much a part of the family I light his candle everyday. We talk and reminisce tell funny stories even about the times he drove us nuts..

We laugh and remember his energy and some of the crazy things he got up too..( he wasn’t always an Angel You know!;-) ;-)

3 months is such a long time, far to long …we would give anything if we could turn back the clock change time even so that he never got sick in the first place ..Wouldn’t we all? We all know these things aren’t possible. it doesn’t stop you wanting to be able to though does it?
We love you today Jake, and we will love you tomorrow ..just because we can’t see you, hold or hear you it doesn’t mean our love for you has disappeared too..
Love you to the moon and back the galaxy and beyond infinity plus one (you can’t beat that 1 baby!!)
Be good stay healthy

PS .we have been off line again.. There was a fault in the phone connection to the pole on the street so for the last few weeks we weren’t receiving phone calls either.. we could ring out (until Thursday) now we cant even do that hopefully it will be fixed by this Thursday …Iprimus aren’t in much of a hurry to fix the situation (typical phone company)..not happy Jan!!!!! (an Aussie expression it means I’m pretty peeved off)

Thank you to Chris at "Tuesday child" web page for the beautiful memorial page and poem for our jacob it's amazing thank you all for your kindness Tuesdays child

Saturday
extra prayers and positive healing energy for
Jayden he is having a hard time after transplant also Philiphe had his transplant today at around 11am he has some very hard days ahead please send him positive healing energy and prayers too
be good stay healthy
jacob and philip at the royal

Monday, September 5, 2005 6:27 AM CDT

Jake’s cousin Jade’s memory
The day Jake decided to go swimming at an inappropriate time ;-)
One day we were out shopping with little Jake aged about 2 (cute as a button),
We had just settled down to have a bite to eat in the food court of a major shopping center
When we heard roars of laughter. we turned around to see Jake fully stripped off stark naked sliding around in a water feature having an amazing time. We were mortified-everyone else thought it was hilarious!!
******
I remember this one as if it was yesterday, Jacob loved the water and you could never keep him out of it.
I had taken my eyes off him for two seconds.. He was stripped off and in the water….I’m trying every hard to be stern with him and demand he got out of the stream.. I would go one way and he would go the other, he had such a cheeky look on his face laughing and was having so much fun it was a shame we had to get him out of there it didn’t help that he had an audience egging him on .
The water feature isn’t at that mall anymore though whenever we go there I can still see my cheeky Jacob swimming in the stream… (he could be a bugger of a kid at times but we all loved him )
****

Over the last month or so I have been trying to write Thankyou’s for all the card and flowers we received when we lost Jake. There are so many I have heaps to go, there were some without return address or surnames on the cards (you often know people well but not know there last names) I haven’t forgotten you or your kindness and will send more out soon
Be good stay healthy


some photo's of jake's pond it's not finished yet hopefully it will be soon
Happy birthday for the (th Erin have a great day party hard and have fun.
please send some positive healing energy and prayers to Jayden he has had his transplant (1st of september)
keep Philip in your thoughts to please he goes into isolation on the 11th
also there are some new photo's in the album
be good stay healthy

Friday,saturday September 2, 2005 5:15 AM CDT

I’m finally back on line ;-)
A huge thankyou to “Jared” from Australian computer traders. Jared went way beyond the call of duty to try and fix the laptop.( it was beyond repair as it could almost be classified as an antique )Jared and the guys at “Australian computer traders” worked extremely hard to try and save as much information as they could.they gave us an amazing deal on another laptop and transferred as much information they could onto the new(used) one. Once again we are amazed by peoples compassion.Thankyou

I haven't had a chance to check other CB pages yet I know Jayden W had his Bonemarrow transplant yesterday we are sending him positive healing energy and hope his counts kick in very soon you are all in our thoughts

Happy Birthday for sunday 4th Lakota and Morgan (neice and nephew) have a wonderful day both of you

our thoughts are with the people in America after the Devastation from this weeks hurricane "katrina"
may all your love ones be safe and sound
be good stay healthy
Sad News
Little beebo has received his angel wings
please visit his page and let his family know he is in your thoughts
Beebos page
Also Chris has lost her battle with cancer too Chris page
chris loved Dolphins too our hearts go out to both families
CANCER SUX!!!!!!

Saturday 3rd september
Tonight is the Brisbane river fire carnival
This time last year our Jacob was a special guess at the “make-a-wish Gala event he was so handsome in his suit Jon had to make a speech, at the time we all thought Jacob was in remission (for good) little were we to know just 22days later our world would again be sent into a spin…
He was so proud of himself he had to hand out prizes and was the center of attention
I miss him so much my heart must be going to burst..
I love you my sunshine boy

Fathers day
tomorrow will be the first Fathers day for Jon without Jake..
I'm not sure how he will be tomorrow I do know just the thought of not have jake's enthusiasm in the morning will be hard jake so loved any Occasion that involved opening presents it's a family joke that jacob always opened all the presents another one of the many "first"we are going to have to get use too..
Happy Father's day to all the Dad's out there especialy My Dad "Leo McLeod" and step Dad "Ron"
be good stay healthy

jon and jake universal studio's america april 2005

Friday, August 26, 2005 2:24 AM CDT

These are just some more Jacob memories
Mater Children’s 2003-2004
Beginning of treatment
Some strange things Jake has said whilst on pain relief
Jacob was on some very heavy duty pain meds for severe mucasitus
************************
Jacob had very blonde hair before he was diagnosed with Leukaemia.
One night he was wiping a white wash cloth on his face and head
“Look Mum! My hair is falling out..!
“No it’s not mate, it’s just the cloth!”
He wiped his head again and thrust the cloth in my face
very adamantly Jake said. “It’s all my hair!!”
So I pretended to look and said “ok .I think you are right”
He smiled satisfied and fell back to sleep.
Both Jon and I checked the cloth after he was asleep there wasn’t a hair on it ;-)

**********************
Another night still off his face with pain drugs
Jacob was asleep and sat up and said, “Oh Mum! Iam freaking out”…
“Why? What’s wrong? “ I was very concerned…
Jake said “ Bejay and I were flying out the window!!!”.
“Were you mate?”
Jake looked very puzzled and said “Yeah! and we all know Bejay can’t fly..., he’s a dog…. !”
He then rolled over and fell asleep Jon and I just burst out laughing

More drug induced strangeness..(This ones sort of sad)
Jacob woke up with a very worried look on his face.
“What’s up mate?” I asked him
“You need to call the Americans”
Do you want Joni? (an American nurse on the ward) I inquired
“No! The white house!” he was getting very agitated by this time
“Why the white house?”
“You have to warn them about the planes’
“What planes Bub?”by this time I was confused..
“The planes! They are going to crash into the buildings you have to ring them…”(He was very concerned and getting more upset)
I had to tell him it had happened a couple of years ago and we couldn’t stop it,
Jacob looked puzzled and sad then went back to sleep
He doesn’t remember any of it.
***************************************************
This was when Jake had to have his retina reattached
No drugs this time just Jake’s (sick) sense of humor.
Friday at the P.A hospital the eye surgeon was telling us what they were going to do to his eye and also said there was a possibility they may have to remove his eye.
Jacob asked what they would put in its place.”
“a glass eye possibly” the surgeon said
“Cool! Can I have one with an 8 ball, cat’s eye or a dragon”? all said with a huge smile on his face ;-)
Iam sure the surgeon thought he was loopy.
*****************************
Before surgery at the P.A
Before surgery they dressed him in a purple gown (the type that opens at the back)(I wish I a video camera)
Jacob started to sing “I feel pretty oh so pretty and witty and gay”
I think all the drugs have really gotten to him.;-)
;-)
*************
After Surgery Jacob had to lay flat on his stomach for ten days or if he sat up he had to make sure his face was down at all times so the eye would heal properly.
We have a wonderful photo of him sitting on the bed in hospital with his head down sitting in the lotus position saying “ohm ohm” I very surprise phyc wasn’t called ;-) .
*******
we always said our Jacob was a very unique person ;-)
***********

Tuesday, August 16, 2005 4:57 PM CDT

************* ********************
16th of August 2005
2nd Month
It’s been two months now since our Jacob received his angel wings.
We all have days where we would rather curl up in a dark corner and let the world go by..
Though those days are getting farther apart, our lives will never be all sunshine, it will get easier
Even though realistically it’s hard to see those days ahead...
I still automatically disinfect everything &wipe everything down with antibacterial wipes. ;-)I have stopped asking people to wash their hands every time they walk into the house ;-), I no longer ask visitors if they have been in contact with any infectious diseases or if they have a cold, cough etc.. I think I must have insulted so many people with that one ;-) I still only go to the shops when I know there wont be to many (germ carrying) People, I still automatically put out 6 plates when I’m serving up meals and put Jake’s towel in the bathroom when I change them, some habits are going to take longer to break ;-)
Some times I feel like the Mother in the “Home alone movies” when she gets on the plane and knows in her heart something is wrong.. Someone is missing....she counts the tickets and is reassured by everyone that everything is fine...then she gets that look on her face... she realizes that her son “Kevin” was left behind...
When we are all together just talking, sitting around or doing nothing, that feeling hits me. Yet I know I can’t get on a plane to go back home to “him”. Do you understand??? I wish I was more articulate so I could really put across how I feel (and not sound like a neurotic old woman”!) other times Jacob’s smile or something goofy he use to do will flash into my mind and I laugh or just hold onto that thought .. Jake was such a huge force in this family... we have days when we struggle, most days we rejoice that we had him in out lives, even though it was for way to short of a time.
Love you Jacob Michael Scott. Is soccer much more fun with Angel wings baby?
Be good stay healthy!
PS
Prayers and healing energy for My Mum (Jake’s Nana) she had a fall and is in hospital after surgery on her hip Get well soon Mum we love you and are all thinking of you.
Also because I haven’t had the internet for a while I haven’t been able to check on other CB kids. I know that Philip in the count down stages before his bone marrow transplant next month. Stay strong Philip, Evon, Philip sr. and Andrew you are all in our thoughts and prayers and Jayden’s family you are all in our thoughts sending you all healing energy and prayers.
Be good stay healthy

A couple of weeks ago we saw an Angel statue in a garden center, It had such a cheeky face and was holding his finger up to his lips as if he was say “shh “or maybe he has a secret.
It so reminded Jon and I of something Jake use to do, so on Monday we decided that we were going to get it,, everyone who knew Jake knows how much he loves fish,( birds animals etc) Jake and I had been nagging Jon forever for a pond for the back yard, (I wanted a frog’s Jake wanted fish), so for the last couple of day’s Jon and I have been moving plants and digging out a pond (only a little one) we decided to have it near the back door
I sit on the back steps in the morning to see the sun come up before I wake the kids up for school .It’s my favourite time of day and it use to be my only quiet time (with four kids there aren’t many quiet moments in the day).now I will have Jake’s pond and cheeky angel to look at. (with fish soon, not frogs)
Our Neighbour Michele gave us a small tree today to plant for Jacob, this tree has special meaning for her.her Brother John had planted the same tree for their Mother after she died.it's leaves change colour's in June (jake's birth month) she also has one for herself in memory of her Brother John who passed this June also her's and our's will bloom at the same time
we were so touched by this thoughtful gesture Thank you Michele
Be good stay healthy
Some kids that need extra positive healing energy and prayers
please visit Philip Philip is doing the work up for his Transplant it’s a very stressful time for him and his family (I know we have been there) also Jayden W Angel Jayden Fairfull-Clayton’s mum really needs some kind supportive words at the moment Jayden and also please keep little Rhianna’s family in your prayers her service is on Monday
be good stay healthy
******
My computer has crashed (I'm using one at the cyber cafe)It may be a while until we can have our computer fixed(Bummer)so I don't know when I will be able to update.
Please keep Rhianna's family in your thoughts
Ps Anthony I think I have fixed Jayden's link (sorry)
be good stay healthy
**********8

Sunday, July 24, 2005 11:45 PM CDT

Sad news today
Rhianna 1/04/02-24/07/05
Little Rhianna Leitch received her Angel wings yesterday 24th of July
Held in her Nanna’s arms she closed her eyes and flew to heaven
Rhianna was three years 3months 23days old.
She fought long and hard against a brain tumor
Our hearts are breaking for her family
Mark, Simon, baby brother Kane and Sister Erica
We will remember the little strawberry blonde with the sweet smile
An another angel in heaven another star in the sky
Jake will be there to hold her hand and show her around

We knew Rhianna and her family from “The Mater Children’s hospital”
Jake would sometimes go into her room to say “Hi” at the time Rhianna had lost her sight
But she didn’t let it faze her. she would put her head up and ask her daddy or mummy who was there?
Jake would say "just me" and she would smile ;-)
Cancer Sux
Thank You Simone for letting me know. I know how hard the phone call was for you my heart breaks as there is nothing I can say or do to ease your pain I’m here if you need me

Nemo for Rhianna she loves Nemo (both her Gold fish names are "nemo" ;-)
Rhianna's service
Rhiannas funeral will be on Monday the 1st of August, at 10.30am

It will be held at the Hemmant Lawn Cementary.
Corner of Hemmant And Tingalpa Rd
Hemmant.

It is in the childrens department which is called the Garden of Peace.
Flying high on angel wings
**********
This was sent to me by little JC,s mum
it's beautiful
"Tomorrow morning," the surgeon began,
"I'll open up your heart..."
"You'll find Jesus there," the boy
interrupted.
The surgeon looked up, annoyed "I'll
cut your heart open," he continued,
to see how much damage has been
done..."
"But when you open up my heart, you'll
find Jesus in there," said the boy.
The surgeon looked to the parents, who
Sat quietly. "When I see how much
damage has been done, I'll sew your
heart and chest back up, and I'll plan
what to do next."
"But you'll find Jesus in my heart. The
Bible says He lives there. The
hymns all say He lives there. You'll
find Him in my heart."
The surgeon had had enough. "I'll tell
you what I'll find in your heart.
I'll find damaged muscle, low blood
supply, and weakened vessels.
And I'll find out if I can make you well."
"You'll find Jesus there too. He lives
there."
The surgeon left.
The surgeon sat in his office, recording his
notes from the surgery, "...damaged aorta, damaged
pulmonary vein, widespread muscle degeneration.
No hope for transplant, no hope for cure. Therapy:
painkillers and bed rest. Prognosis:, "

here he paused, "death within one year."
He stopped the recorder, but there was
more to be said. "Why?" he asked aloud.
"Why did You do this? You've put
him here; You've put him in this pain; and
You've cursed him to an early death. Why?"
The Lord answered and said, "The boy,
My lamb, was not meant for your
flock for long, for he is a part of My
flock, and will forever be.
Here, in My flock, he will feel no pain, and
will be comforted as you cannot imagine.
His parents will one day join him here,
and they will know peace, and
My flock will continue to grow."

The surgeon's tears were hot, but his
anger was hotter. "You created that
boy, and You created that heart. He'll
be dead in months. Why?"

The Lord answered, "The boy, My lamb,
shall return to My flock, for He has
Done his duty: I did not put My lamb
with your flock to lose him, but to retrieve another
lost lamb."

The surgeon wept. The surgeon sat
beside the boy's bed; the boy's
parents sat across from him. The boy awoke and
whispered, "Did you cut open my heart?"

"Yes," said the surgeon.
"What did you find?" asked the boy.
"I found Jesus there," said the
surgeon.
Author Unknown - Celebrate Jesus
be good! Stay healthy!
PS please visit Jayden's web page His mum Nickie realy needs to know that her little boy hasn't been forgotten Jayden please sign his guess book

Saturday, July 23, 2005 11:43 PM CDT

Sunday 24thjuly
We all participated in the 5k Run “for a cure for cancer” today at Cleveland (Redlands)
(Well! we actually walked the 5 km’s) in memory of Jacob, it felt strange to go somewhere as a family without Jake. Jonathon’s mate Ryan J also walked with us he wanted to do something for Jake I thought that was so sweet of him after our healthy looong walk … which Our Ryan and I lapped the other four but to be fair our Jonathon and Ryan J had hangover’s (shame). We had Macca’s for breakfast ;-) very healthy (Not!)
our family raise $100.00 ( thank you Nova 106.9fm) there were hundreds of people out walking and running this morning some took it serious other’s just had fun dressing up
As long as the money goes to a cure for cancer… Love you to the moon and back Jake.
Be good stay healthy

I had this poem sent to me from Jacob R's mum
Thank you Sonia
Hello my sweet one
It is your mummy,
I have not forgotten you.
Your physical location may have changed
For you are no longer here in my arms
But in heaven now.
To me you will always be in my heart,
My spirit and my thoughts.
Although we did not have much time together
We created a bond everlasting.
For I do not just miss you in the moment
I will forever miss our future together.
You are more than my angel, you are my hope.
I had dreams for you and visions of you.
I could hear your laughter,
Feel your hugs,
And see your eyes.
To me you will always be perfect in every way.
To me you were created just right.
You are not “replaceable.”
You were not something that “was not meant to be.”
You are a miracle.
You are an inspiration.
You are my dream almost come true
But God wanted you in a better place than this; his arms.
So although my heart is eternally shattered,
Be in your new home.
Laugh, smile, dream and love for you are never alone.
I will always be with you and
You will always be with me.
You are the angel in my prayers,
The stars in my sky,
The shine in my eyes,
And the beat of my heart.
***************************
Thank you also to Evon Philips mum for the beautiful hat and scarf she made me.I love it ;-)

Thursday, July 21, 2005 5:56 PM CDT

Some "Jacob Memories"
I was going through Jacob’s memory book from when he was little today.
This book started when he was two (he had a baby book too ) all the kids have memory books and their own special photo albums they are for their 21st birthdays
I have a piece of his hair from his first trip to the hairdressers he didn’t like having his hair cut
He would say Ouch every time the scissors went near his head ;-) I can just see him sitting there having his first hair cut ;-)
Jacob’s 2nd birthday 1993
I wrote about his day all his presents all his visitors and how he was in a very cheeky happy mood all day
On the end of the page I wrote a letter to him
Dear Jacob
It’s hard to believe you have only been with us for two years I feel like you have been with me forever. You have brought so much Joy into our lives.
I love your cheeky face, The way you are determent to do things (by yourself) even all the mischief you get into and believe me you get into a lot of mischief ;-)
I love you because you are special
Love Mummy
On the other page I have his 2 year old hand and foot prints (even then he had big feet;-)
1994
Jacob’s first day at Kindy
Even then he was so independent I wrote how he just ran off to play (see ya mum) I was blubbering like a baby and he is off playing (this was the first time I had ever left him ) when it was time to pick him up I think I was one of the first Mum’s through the door , he didn’t want to come home ;-) he was having to much fun. All the way home he wanted to know how long before he could go back ;-)
Jacob’s 3rd Birthday 1994
This year Jacob was given a basket ball (and clothes he loved new clothes ;-) and shoes
It was raining that year so he had to wait until the rain stopped to go outside and play.
Every time the basketball would get dirt on it he would get upset and wipe it with a towel until it was dry and clean ;-) ;-) (Should of known then he would be sport mad)
I wrote: Three years have gone so quickly He’s not my little baby anymore.
I love him more today then ever He is a very special little “Boy”
We all love you Jake
Love Mummy
December 1995 4 ½
Jacob has decided that he want’s a baby brother or sister
He was sitting on my knee and out of the blue he asked me did I have a baby in my tummy? When I said no (maybe I should of gone on a diet?) He said he wanted a baby brother and sister in 5 weeks time (it would have to be the shortest pregnancy ever) he said I have a fat tummy and a baby would fit in there (out of the mouths of babes I’m going on a diet)I pointed out that daddy had a fat tummy too He said that “daddy couldn’t have a baby because he had a boy’s tummy.
I thought this was sooo funny ,
December 1995 Jacob’s “engagement” (4 ½ )
Jacob’s best friends name was Nakia .they were inseparable
Jacob got a ring out of a gumball machine. He said it was for “Nakia” cause he was going to “marry her”
That afternoon, Jacob took the ring to Nakia’s house, gave it to her and asked her to “marry” him Nakia said she would marry him and he put the ring on her finger (Karen, Nakia’s mum and I were trying so hard not to laugh as they both were so serious)
The start so young now day’s
Always said Jacob was in a hurry.
So many memories I’m so pleased now that I have written them down
Be good stay healthy
CONGRATULATIONS
to Chris (mater children's) Chris has finished his treatment and has the all clear ;-)
fantastic news for him and his mum Narelle way to go !!!!!!

Jacob Bejay and Jacinta jacob with joseph (bob the builder) jake thought the sun and moon shined for Joseph ;-)

Tuesday, July 19, 2005 3:12 AM CDT

Firstly I would like to apologies for my last entry
I had always promised myself that Jacob’s page would be a happy positive page about Our Jacob his strength,faith and lust for life..
The letter from the Hospital had me so mad that I wrote before I thought of the other people with sick kids that really don’t need to be brought down with my negativity
Jacob would be in heaven saying “just let it go mum”. every time I got cranky with some of the doctors and their lack of everyday common sense, he would roll his eyes at me and say “who cares let it go” as I’ve said a million times he would sometimes make me feel like the child
I miss him so much some day’s it hurts and instead of remembering all the good things that happen I seem to be dwelling on the bad stuff I have given myself a good swift kick in the pants and will not do down negativity road again
Be good stay healthy (still think the doctors at the royal suck ;-)
Ps Thank you to Doris for jacob's memorial Square it's beautiful
doris has a site where she has made memorial squares for al our angels it's a beautiful site dedicated to the memory of her own angel please visit the link is on jake front page
Andrew....Our Miracle, Our Angel
Andrew's Page
12/10/96 - 01/09/01
jacob cooking with Leith OT at the "Mater" jake loved to cook

Monday, July 18, 2005 6:47 AM CDT

I finally had a reply to my complaint about Dr Peter Borzi (surgeon) and the head Dr Looi Ee…. Gastroenterlology (Royal Children’s Hospital)
Both of who ignored Jacob’s gall bladder pain for all those months
In essence the letter states that Jacob did not seem to be in pain to them he (Jacob ) did not articulate the pain (they said he was unable to describe the pain adequately) he was not vomiting enough bile (he was on anti sickness meds for that)
It didn’t matter to theses so called “Doctors” (and I use the term sarcastically) that Jacob had up to 16 marble size call stones. A grown adult wouldn’t have been able to tolerate, they say that if Jacob had of told them how much pain he was in, they would have operated sooner… 5-6 different doctors said the gall bladder had to come out. Jacob didn’t see the same doctor each time. How could they say he wasn’t in pain???.. Don’t doctors take an oath “above all do no harm” do none of them believe this promise?
If Jon or I neglected him or any of our Children in this way we would have been charged with “child abuse” why are they allowed to get away with this neglect??????? And to blame Jacob for having a high tolerance to pain is so low..
Also I have heard nothing about the way Jake was treated on his last day, the medication was marked wrong so the ambulance driver was not able to give him pain relief until we were almost home ( we had to ring the hospital from the Ambulance) they had marked morphine on the syringe (Jake was allergic to morphine) the oxygen didn’t turn up until after 6pm Jacob died at 5:08 ..Still not one word of condolence from any of the Doctors on Banksia ward are these “people” Human?
Jacob was denied the chance to have sperm frozen for when he was older to have children (this is something that was very important to him ) when he relapsed in September he asked us to request this at our Meeting with Dr Lockwood and Jill when we asked we were told No as they don’t do this for the boys (we had mentioned 3 girls we knew who had had eggs frozen and 1 boy around Jacob’s age) we recently have been told of other boys that Lockwood had offered this choice to. What right did these two woman (who don’t have kids of their own ) have to decide that Jacob wasn’t worthy of having the choice to have children? I am so angry I could just scream. Those of you who knew our Jacob know how much he loved babies and kids he had wanted to work with sick kids when he grew up. Though I wouldn’t deny these other kids of their chance to have children, I wish with all my heart that we had been given the choice as well
We had also been told the ten months we were at the Royal that they didn’t have a patient advocate this was a blatant lie (from the doctors) they do have someone that parents and patience and all parents have the right to be told this..
All I can say is Thank God they can’t hurt our Jacob anymore
Complain office
Dr Alan Isles “royal children’s hospital” Herston road QLD 4029

Saturday, July 16, 2005 7:15 AM CDT

It’s been a whole month now since our Jacob received his angel wings.
I didn’t think it was possible to ever feel this sad.
The sun still comes up everyday and sets
Birds still sing
The earth is still revolving.
People go about their everyday business
And my heart still beats.
It really doesn’t seem possible for these things to still be happening without our Jake.

We have good days, we laugh we cry and remember some of the silly things the kids got up to we have so many memories and for that I will always be grateful, so many families didn’t get to have their child for as long as we did. Still I feel like a part of me is missing the selfish part of me would give anything to have him here, but then I think I couldn’t watch him be so sick again, he was so strong and fought so hard. Jake would not be impressed with me mopping around I truly haven’t been. Today just seems a little harder.

The new Harry potter book is released this weekend. Jacob lined up with me to get the last book. (I love Harry Potter). none of the other kids would, they thought I had totally lost my marbles (I am the only big reader in our family). Jacob had a game on that day so he was dressed in his soccer kit after I brought the book we had to make a mad dash to get him to soccer, he was playing at slacks creek that week (I think) we just made in time for warm up the coach would have been mad if he knew why we were late. Jacob made me promise that I wouldn’t read the book until after soccer (Both his and Ryan’s game) of cause Ryan’s game was after Jake’s but on the other side of town the boy’s locked the book in the boot of the car so I wouldn’t be tempted. (Once I open a book I can’t put it down until I have finished it, it’s a family joke every time I get a new book the kids moan).;-)
I know he is happy and most of all healthy and pain Free now..
Be good stay healthy
PS Thank you to the Morse family for donating money to The leukaemia foundation in Jacob's Name. Thankyou to Capalaba soccer club for Donating money to "Make a wish" In memory of Jacob
Jacinta and her friend Lisa were up and about early this morning (very unusual)
Jacinta had remembered the new Harry Potter book was out …. They both lined up and surprised me
With the book (at 9.30am!!!!) the kids are never out of bed before midday on the weekends ;-)
I can’t believe that they did that. Jacinta said It’s from Jake as he would of gone with me to get the book..
Even if he thought I was totally nuts ;-)
Yes I devoured the book and finished tonight…
I truly have a very special thoughtful and caring Daughter
These kid of ours constantly amaze me and make me so proud…. I don’t know what we ever did to deserve four Fantastic kids
and thank you Lisa you are such a caring beautiful person as well
we are blessed
be good stay healthy

Monday, July 11, 2005 5:40 PM CDT

Please send some positive healing energy and prayers to Jacob's mate Philip he has to have a Bone marrow transplant and just has started his work up Philip is 15 and a really great kid with a wonderful Mum "Evon" and family please visit his page and wish them well.
"LEUKAEMIA SUX!!!!!!"

I thought I would share some photo's of jacob learning to walk (the second time) it show's his determination and courage he had been in bed for weeks and had lostthe use of his legs due to muscle shrinkage he was so determent to walk again they said it would take him months but not our jake ;-)



being fitted for his leg splints (they were army print very cute) 2 first time trying to stand 3 almost there 4)walking frame I remember the nurses and a couple of the Doctors at the end of the hallway clapping and hooting I am not sure who was the proudest them or us:-) 5 crutches all this with out pain medication the physo's were so impressed with his courage and strength
(they had to take his excercise things out of his room because he was exercising too much ) These were taken at the "mater"

I had this sent to me in reply to my 7 things not to say to a greiving parent
I thought this says it all Thank you "Viks"
Do's and Don'ts
If you are reading in an effort to better understand and support
someone you care about who has lost a child, it is hopeful that the
following will aid you to become better informed about their needs:
DO: accept the simple fact that it is not possible for you to say
things that will make the bereaved parent feel better. This
acceptance will enable you to stop when you become tempted to utter
cliches that you have heard all of your life that are intended to
comfort, but in reality they don't accomplish this. Do know that
when you make the initial call, the bereaved parent does not expect
you to be able to take their hurt away, or to fully understand the
depth of their despair and pain.

DON'T: say "I know how you feel" unless you, yourself, have
experienced the loss of a child. Though it is possible for you to
empathize with them, the death of their child cannot be compared to
the loss of your parents, brother, sister, uncle, aunt, grandfather,
grandmother or dog. This is not to say you haven't experienced pain
with these losses, but they are different losses. Bereaved parents
have trouble accepting "I know how you feel" from anyone other than
another bereaved parent.

DO: feel free to touch them, to hug and cry with them if these
expressions are appropriate to your relationship with the parent.
Tell them that you care about their pain and that you are sorry
their child died. A simple hug can say more than a thousand words.

DON'T: impose your personal religious beliefs, nor offer as
solace "this was God's will". You should be careful how you
represent God, His wishes and plans when dealing with the bereaved.
Some parents accept the loss of their child as being the will of
God. This belief is right for them. It comforts and enables them to
better cope with their loss. Other bereaved parents, even though
they have had faith over the years that has been a source of
strength, may now have trouble with their relationship with God.
They might be in the process of reevaluation how they feel about
some aspects of their religious beliefs. They might be troubled now
because they did have such a strong faith and relied on God to keep
their loved ones safe. They might be deeply angry with God for
having failed them, for allowing this death to happen. It might take
a long time to work through this anger to sort out their emotions.
Parents need to be able to admit and express their anger at God if
it is there, without being judged. They need the time and freedom to
decide what they now believe. What you believe is not important. How
they feel and their right to feel that way is important.
DO: tell them that you don't understand the WHY of it either.
Those "Why's" especially the unanswerable ones, are difficult for
many parents to deal with. They need to be able to ask WHY, and to
have time to accept there might never be an answer.
DON'T: think you are complimenting them by telling them "how well"
they're doing a few months down the road. They're not doing well.
Their child has died and inside they feel they are dying too. You
would feel the same if it were your child. You may feel more
comfortable dealing with them if they're "doing well", but trying to
rush them through the grief process doesn't work and it angers them
to sense that you don't understand their pain, the length and depth
of it, and are expecting more from them then they're capable of
early in their grief.
DO: allow the grieving parent to express their feelings, if they
have that need. The pain involved in letting go, the anger,
frustration and guilt are all a part of the normal grieving process,
leaving them empty and without purpose for a long time. Allow them
to tell you how they feel. Don't tell them how you think they should
feel. They just need you to listen. You aren't expected to be able
to take away the hurt or to have all the answers. Talking and crying
about the loss are the first steps toward recovery for some. After
they have cried and talked about their loss enough, they are then
free to go on to the next step in the recovery process. Your
willingness to listen helps them, and isn't that your ultimate goal?
Encourage them to be patient with themselves when they grow
discouraged with their slow progress.
DON'T: impose "shoulds" or "should nots". There are no rules and
regulations, nor are there right and wrong ways to grieve. There is
your way and my way, and though they may be totally different,
neither is wrong. Society, over the years has tried to impose its
own rules, rules often drawn to make it easier for society to cope
with the threat of someone else's loss. You may think you know
exactly how you would react if your child should die, but you would
be amazed to find that the rules that once seemed so appropriate no
longer apply. There are as many ways of expressing grief as there
are people expressing it..
DON'T: impose time limits on their grief. "Isn't it time you were
getting over this and going on with your life" can be one of the
most painful questions a grieving person can hear. Depending upon
the relationship, it takes not weeks and months to adjust, but
sometimes years. You need to know and understand this. "It may
threaten you to learn that the hurt goes on for such a long time,
but you offend the bereaved even more when you insinuate they have a
choice. The truth of the matter is, no one "gets over" the loss of a
child. They try to adjust and live with the loss. Parents who go
through the trauma of having a child die do not come through the
experience without having changed in many ways. A part of them died
when their child died, and it might take years for them to recognize
some of these changes. Their new reactions to old situations take
them totally by surprise. Each person has his own time frame for
recovery. Allow them that freedom
DO: mention their child by name. It is comforting for bereaved
parents to know that others remember their child, too. Some people
avoid mentioning the child's name for fear it will remind the parent
of their loss. For a long time the parents can think of nothing but
their loss, so that shouldn't be a worry for you. If tears come,
then they needed to cry, and the tears may be tears of gratitude
that you have given them the opportunity to share their child with
you. If you have a good memory of their child, share it. It will
make their day. A parent's greatest fear is that no one will
remember their child, and if the child's name is never mentioned, or
the subject avoided, it is a natural conclusion. Why should you ,
whose children are alive, have the right to reminisce about the
past, while those, whose child is dead, are denied that right?
Memories are all that parents have left and those memories did not
die with their child.
DON'T: turn away if you unexpectedly come upon the parents. Most
parents are aware you have chosen not to "see" them. Can you imagine
going to the grocery store, as painful as that already is, and
having several people pretend they don't see you? Can you imagine
how distressing this would be? Why not, instead, approach them
openly, tell them that you have been thinking of them and ask them
how they are doing. Acknowledge their loss, don't pretend it didn't
happen.
DON'T: try to find something positive about their child's death. If
there is anything positive about the death, the parents will have to
find it in their own time. If you are tempted to point out such
things as "closer family ties," or their child is "in a better
place", or "it will make the marriage stronger", don't do it.
Parents hear this time and time again. It doesn't help, and instead
may cause bitterness. Many marriages do not make it through the loss
of a child and closer family ties are not always the outcome.
DON'T: remind them that they should be grateful they have other
children. Children are not interchangeable. Each has his own special
place, and no one child can fill the void left by another's death.
You need to be aware that for a while, the parents sometimes lose
their ability to nurture their surviving children. You can help by
giving these children a little extra attention until life at home is
on a more even keel. Siblings often feel very much alone and
bewildered when the structure of their family has fallen apart.
DO: know that it is difficult for the newly bereaved to reach out to
you for help. Grieving is emotionally and physically draining. Just
getting through the day might take more energy then they have. Let
the family know you are available to be with them if it would be
comforting. Conversely, when you invite the parents over, be sure to
give a specific date, instead of leaving the initiative up to them.
Being at ease in large crowds may take time, so plan only small
gatherings, leaving them free to leave whenever the moment is right
for them. If the first invitation is refused, offer another at a
specific date later on. Being at parties and with other people is
not going to take their mind off their loss and make them have a
good time. The thought of it may make them feel guilty and be an
affront to them.
DON'T: suggest to younger parents "but you can have other children".
They may or may not be ale to have another child, but it is not
appropriate for you offer comfort with the thought of another child.
You see, they wanted this child.
DO: know that there will be certain days that are more painful for
parents, such as birth and death dates, as well as holidays.
Anticipation of these special days causes periods of depression and
anxiety a long time before and the actual date. These special family
oriented times are an opportunity for you to be in touch to give
some support and attention. Let them know you are aware and that you
care.
DO: know that it is not abnormal for some parents to spend a good
deal of time at the cemetery. How often they visit the cemetery or
whether they go at all, has no bearing on the intensity of their
grief or the length of it. Each person handles this in their own
distinct way. Don't make it a problem for them.
DO: know that for some parents having many pictures of their child
around the home is comfort. For others, photographs on display are
to painful. You may find it makes you feel uncomfortable having the
photographs around, but for you to suggest they should be put away
pains the parent deeply. There doesn't seem to be a middle ground on
this subject. Each individual's need is valid and should be
recognized.
DON'T: rush in and remove their child's belongings, or change their
room unless the parent specifically asks you to. It takes some
parents many months before they are ready to change anything. It is
their right to decide what they want to keep and what they would
like to share with others. You may feel they will recover faster if
they face this sad task immediately, but that is not necessarily the
case. Leave them alone until the time is right for them, and then
help them only if they ask you to. Don't make it an issue. They have
enough problems.
DO: reassure the parents they did everything they could for their
child, both emotionally and medically. Many feel failure and guilt
because they weren't able to keep their child from harm. Small
omissions or commissions loom large. It is important that you not
add to these feelings of guilt by suggesting that the care given the
child either at home, at the hospital or wherever, was inadequate.
This only adds to their burden.
DO: show your concern, do be there over the months to come on a
regular basis. Allow them to tell you how they feel, and listen when
they tell you. Don't tell them what you think they should be
feeling. Leave them free to express anger and guilt. If you know a
certain time of day is particularly difficult, do try to plan your
visits to coincide with that time. Do be patient. Allow them to
grieve in their own way and at their own pace. Avoid judgments and
try to be accepting of the different ways in which grief can be
manifested. Remember, it is better to touch and cry than to stand
back and offer cliches.
When all is said and done, you will be remembered not only for
having been there when the need was great, but also for having known
the right thing to say and do.
By Mary Cleckley, Atlanta, Ga
Copyright 1981

Sunday, July 10, 2005 1:14 AM CDT

7 Things NOT to say to grieving parents

1) at least You have each other!
2) You have other children they are your future now!!
3) Life goes on
4) Your young you can have more children!!! (we’re not and can’t)
5) You can get on with your own life now!
6) So What do you do with your spare time now?
7) It was for the best!

Losing a child is like losing a limb. You know it’s not there but still feel the pain
The rest of our life will be like that, there will always be one child missing from every event.
There will always be an underlying sense of loss of sadness of loneliness, no matter how many children you have. Yes life goes on but it’s never going to be the same..

Thursday, July 7, 2005 5:23 PM CDT

Our hearts and prayers go out to the people of London.
May all your love ones be safe and sound.

More Jacob stories
Jacob Michael Scott
Your big blue eyes, Beautiful smile, wicket sense of humor, infectious smile and your passion for life will live on through those you touched. Your strength and determination was inspiring, I am proud of you and will always be proud to have you as my baby brother. I love you to the moon and back always and forever .
Love your most favourite sister in the whole world.
Jacinta

Jonathon’ story
One night Jacinta was in the middle of her flute recital
The three boys were bored so Jon took them outside so they could play.
Jonathon and Jacob were playing chasey
Jacob was running flat out backwards and ran into a pole,…there was blood every where and his blood hair was soon very red. Jonathon panicked picked Jacob up and ran into the auditorium down to where I was sitting...totally freaking everyone out.
Another trip to emergency only five stitches this time ;-)

Sequel to smashed window
When I knew where Jake was hiding I sat on his bed ,”Jacob” I said, slowly he came out from under the bed stood in front of me, put his head down (knowing he had done something wrong) he looked at me with those huge sparkling blue eyes, I told him it was Okay, as it was an accident” he gave me the biggest cuddle and said “I love you Dad” how could you stay mad at that .

Nanna and PaRon’s story
While nana and PaRon where up from NSW for a visit we went to Wellington point for a picnic.
The boys were again playing chasey
Jacob was trying to get away from the boys so he wouldn’t get caught jumped up and ran across the electric BBQ, none of us were aware they had been left on until,Jacob bolted across the road into the water, his poor little feet were all blistered (with 2nd degree burns )
Off to the emergency room again we went …..
Everyday we had to take him back to have them dressed they would greet him with “hi BBQ boy.. come on in ;-)

Poppy Leo’s story
Jake was mischievous .. he made a sign for the back of my Ute- “Crazy Pop”. I drove all the way from Queensland to NSW and copped a lot of flack ..
Jake’s pop still has the sign on his Ute ;-)

Thursday, July 7, 2005 5:23 PM CDT

Our hearts and prayers go out to the people of London.
May all your love ones be safe and sound.

More Jacob stories
Jacob Michael Scott
Your big blue eyes, Beautiful smile, wicket sense of humor, infectious smile and your passion for life will live on through those you touched. Your strength and determination was inspiring, I am proud of you and will always be proud to have you as my baby brother. I love you to the moon and back always and forever .
Love your most favourite sister in the whole world.
Jacinta

Jonathon’ story
One night Jacinta was in the middle of her flute recital
The three boys were bored so Jon took them outside so they could play.
Jonathon and Jacob were playing chasey
Jacob was running flat out backwards and ran into a pole,…there was blood every where and his blood hair was soon very red. Jonathon panicked picked Jacob up and ran into the auditorium down to where I was sitting...totally freaking everyone out.
Another trip to emergency only five stitches this time ;-)

Sequel to smashed window
When I knew where Jake was hiding I sat on his bed ,”Jacob” I said, slowly he came out from under the bed stood in front of me, put his head down (knowing he had done something wrong) he looked at me with those huge sparkling blue eyes, I told him it was Okay, as it was an accident” he gave me the biggest cuddle and said “I love you Dad” how could you stay mad at that .

Nanna and PaRon’s story
While nana and PaRon where up from NSW for a visit we went to Wellington point for a picnic.
The boys were again playing chasey
Jacob was trying to get away from the boys so he wouldn’t get caught jumped up and ran across the electric BBQ, none of us were aware they had been left on until,Jacob bolted across the road into the water, his poor little feet were all blistered (with 2nd degree burns )
Off to the emergency room again we went …..
Everyday we had to take him back to have them dressed they would greet him with “hi BBQ boy.. come on in ;-)

Poppy Leo’s story
Jake was mischievous .. he made a sign for the back of my Ute- “Crazy Pop”. I drove all the way from Queensland to NSW and copped a lot of flack ..
Jake’s pop still has the sign on his Ute ;-)

Wednesday 6th July, 2005 4:38 PM CDT

July 6th 2005
State of origin is on tonight
It’s hard to believe that three weeks ago Jake was sitting up late watching his “blue’s”
Win the second game of the “state of origin”
Tonight is the decider (1 game all) I’m sure Jake will be sitting up there in heaven barracking “NSW” on to win. And probably a little cranky as he wont be able to ring his Aunty Leonie to tease her every time NSW gets a try or a goal.
The rest of the family barrack for “QLD” but I must admit tonight I hope NSW wins for Jake. ;-)
Be good stay healthy
happy Birthday Shae
*****
please pop by Philip's page he has just recieved some not so good news.Philip and His mum Evon would visit jacob at the Royal while he was in transplant they would bring jake little treats and Jelly beans he always looked forward to waving to them through the window Philip
was being treated for A.P.L a sub form of A.M.L (it's rare) Philip evon and family you are all in our prayers sending you positive healing energy
Leaukaemia SUX
Jake is now in running a lap of honour
NSW won!!!!!
“Go The Mighty Blues!”
Jake will be very pleased
NSW won the “State of Origin” for 2005
Score 32 NSW - 10 QLD
I can just see Jake doing a victory dance and running to the phone to harass his Aunty Leonie

There will be a lot of sore heads in NSW tomorrow ;-) as they celebrate hard ;-)
Queenslander’s will also have sore heads but they will be drowning their sorrows ;-(
Oh well there’s always next year!
The most amazing thing is the Legend’s of origin’s relay raised over $320,000 dollars for
“Make-A-Wish”
Be good stay healthy
PS now Leonie has to wear jacob’s NSW shirt shopping out in public for a week

Sunday, July 3, 2005 10:11 PM CDT

Our Jacinta had made up a small booklet of “ Jacob” antidotes to hand out at his service. we decided,To do this instead of the usual order of service booklets to make it more personal to celebrate “Jacob” and all that was him, his mischievous side as well as his journey through leukaemia.
There are so many little stories that we couldn’t put in other wise it would have been an epic novel ;-) each page also had a photo of jake through the years
I hope you enjoy theses and can bring people closer to knowing our Jake
Be good stay healthy
My Story
I have been asked to write a short antidote about our Jacob
There are so many “Jacob” stories choosing one is near on impossible
So I thought I would tell you about the day he was born.

Our Jacob decided to enter this world a day early he was actually due on our Ryan’s 2nd Birthday
He also decided to be born as fast as he could he was in a huge hurry to meet us all
While my sister Marree played with the Jacinta, Jonathon and Ryan in the waiting room at the hospital
Our Jacob entered our lives at exactly 6.00am on the 17th of June 1991
Now I can’t say he was the prettiest baby I ever saw ….( Jacob decided to be born facing up so he was very bruised ) but SO alert.
He was about 2 minutes old when Marree was able to bring the kids in to see him
We were a little on tender hooks as Jacinta had desperately wanted a sister, that is until she held him “Oh Mummy a baby boy! I love him as she bent over and smothered him in kisses.
Our Jonathon was next to hold him, Jonathon had to check out his feet and toes declared that we could keep him ;-)
Then Ryan who was now the big brother… held Jacob, huge grin on his face “he my baby!” and that’s how it was from that minute on. Ryan and Jacob joined at the hip ;-)
Love Jacob’s mum
Jacob once said “God as a Reason” what reason that was we were not sure of.

Our little Ray of Sunshine only ever had two speeds hundred miles and hour or stop. Nothing could hold him back or slow him down not even the Journey he started on 01 November 2003.
It only brought out aside of Jacob we had not seen, the determination and the strength he had for life was inspiring to everyone who knew him. No matter how he was feeling or what he was going through he was always thinking about us.

Jacinta’s Story

Just before we left Toranga Zoo Jacob had to drag me to a bird show his reason for that was mum got on a plane (well actually that was battle of its own, not really this is the first time we had flown). Mum is terrified of fly we were getting ready to board our plane to Sydney at the door of the plane, Mum looks at it a said “It’s a sardine can’ she was ready to turn back around and go home. She did end up getting on the plane but she had to hold Dad and Jacob’s hand the whole flight down. So Jacobs guilt trip was reminding me of that. He held my hand and walked me to the bird show. We hadn’t even gotten there yet and I was already hitting the ground ducking for cover. “Come on Jacinta” he said. The thing is he knows how much I am terrified of birds but the little bugger also knows how much I love him so he knew he had the upper hand. I swear he got a kick out of that.

Our little movie star.
We were picking up in a limo and driven to Seaworld. I am not quite sure who loved it more dad or Jacob, Dad was waving at everyone who drove past us on the highway (doing the regal wave). We waited till Jacobs time came to go swimming with the dolphins. He geared up and couldn’t wait to get in there. He was in some pain that day up till then but it seemed as though as soon as he got in the pool all the pain that day had gone. Watching him and Bala (the dolphin) was incredible. She look at him as though she knew him. When he got out of the water he couldn’t wait to rub it in “hay Jacinta guess what’? ‘What” I said “I got to swim with the dolphins’ I heard that for days. (weeks, Months ;-)

I was going through my diary from our trip to Disneyland and came across a page where Jacob had written, “I had a great day today. It was fun going on the rides. I went on the Indiana Jones ride, Jacinta screamed in my ear for some reason because I don’t know what was so scary” (Sun 03.04.05) I had to laugh I remember it so well. Every ride the three boys got me on I ended up screaming and every ride I got into trouble. When we were lining up for the Hollywood tower of terror I wasn’t quite sure if I should but Jonathon’s like “You will regret it” so I made my way through the line up with the boys. Before we got on “Jacinta if you scream!!!” with that look jacob would give me when I had done something to annoy me, and saying “there is no way I am sitting next to you because you will scream in my ear”. He were right I did I think that would have had to have been the ride I screamed the loudest on. The thing was the ride didn’t just go up and down once but three times.
Dad's
Jon

When he was small Jacob loved to be naked, the nightly ritual in our house was I would help bath the little ones while tea was being cooked The kids all had their own bath towels in their favourite colours every night Jacob would run out of the bathroom with Deanne’s Towel (hers was pink) “Mum I’ve got your towel’ wiggled his bottom and bolt until Deanne chased him and tickled him dry. I loved to hear them both laughing Jacob has the most infectious laugh
Ryan’s story
I was always embarrassed because Jacob learnt to tell the time before I did.
Jacob was really good with anything to do with numbers, so Jacob would quite often ask ‘hay Ryan what’s the time?”
Do you know how embarrassing it is when your Baby brother has to teach you how to tell the time?
When we were younger Jacob and I went through a phase of karate movies, teenage ninja turtles, the three ninjas and karate kids.
Mum would quite often come out looking for the broom (so she could sweep the floor not fly ) the broom brush would be where she kept them but they never had handles on them ,she would find the broom handles being used as staffs (weapons) we thought that we were real warriors. (After many trips to the emergency ward for stitches we out grew that game (mum was very relieved)
We have only recently gotten mum and dad’s bedroom window fixed. Jake and I were out the front one day kicking, well trying to kick a soccer ball through the basketball hoop when Jacob kicked the ball, it hit the window.. SMASH !!!! the glass seemed to fall in slow motion (like in the matrix movies) I turned around and Jacob was gone.. he had taken off up the street he wasn’t silly he knew what this meant. Dad was furious he waited for Jake on the front verandah (he knew there was no way he would ever catch Jake in full flight.) Jacob wasn’t silly. he cut through our neighbour’s yard, jumped the fence and was hiding under his bed before anyone knew he was home ;-)

When I first started soccer Jacob was our little mascot wherever the team went was a character of some sort. Jacob was always dressed up as either as batman , spiderman or superman many of the parents didn’t bother to ask what field we were playing on they just looked for a super hero
That’s how Jacob is to me “A super hero”


“Love doesn’t end with dying
Or leave with the last breath
For someone you’ve loved deeply
Love doesn’t end with death”

Friday, July 1, 2005 5:50 PM CDT

Friday 1st July 2005
Today was not an easy day, our Jacob’s Death certificate came in the mail, it’s not like we weren’t expecting it but to see that cold piece of paper stating your child is Dead in such an unfeeling way
Was like being hit in the stomach by a huge lump of ice.
I was cleaning out my wallet today and found a couple of Jake’s little love notes he use to leave me,
One was when he was first learning to write it said I love you. I love you all the time for eva to the galixy and back love your Jacob. I laughed and cried at the same time, the kids thought I had lost the plot! ;-)

Today was also little Jacob C’s service we were unable to get to Mackay to attend I hope Beth and Roy know we were there in spirit anyway.

I received cards from other caringbridge families it was so nice of them to go the extra and post a card.
I haven’t been visiting many C.B pages lately, I also haven’t sent out thank you card or returned phone calls
Please forgive my rudeness I ‘m trying to get my act together and do all theses things…..
One day at a time…
The sun is out today no more rain in sight though the dams need more for the drought to be broken ,still it will be nice to have some sunshine to lift everyone’s spirits
Be good stay healthy

Thursday, June 30, 2005 7:36 PM CDT

Thursday June 30, 2005
We have had a huge amount of rain this passed week
I awoke this morning to see a torrent of water rushing through the yard
The last time our yard flooded the kids pulled out their boogie boards and surfed down the yard.
I remember watching them having heaps of fun getting filthy dirty with mud. Laughing their heads off
I was thinking how Jake would already be out there calling Ryan to join in the fun .he was always ready for a bit of mischief ;-)
Bonnie, Jacob’s crazy boarder collie loves the rain the heaver the rain the louder the thunder she is over the moon with happiness she has been outside since 4am running up and down trying to catch the thunder her tail wagging she is sopping wet and proberly wont come in until she is exhausted we will dry her off and no sooner will she be dry and she is off again (proberly why jake and bonnie love each other so much as they are both strange!!) the poor cat has just walked in looking like a drowned rat he is not happy at all ;-)

Two weeks today since our Jacob received his angel wings we miss him terribly the world isn’t as bright a place without our Jake.
Little Jacob Christensen’s service is tomorrow (Friday) take a minute to remember all the kids that cancer has taken away from their families CANCER SUX!!!!!
Be good stay healthy
Thursday 30th june 8:44pm
Dr Ram (from the Mater) dropped in tonight to see how we all are
just to chat and remember Jacob it was so nice to see him.
we have had lots of phone calls from him and some of the “mater” staff just to see how we are
Bernadette (day unit nurse at the mater) sent an Angel bead to put with Jake’s bravery beads we were so touched by that simple gesture it’s so typical of Bernadette to think of something that sweet knowing that he collected the beads while we were there.
(We,on the other hand haven’t heard a word from any of the staff at the Royal but we expected that as they are so not interested in the families, there we were just a file number)
Other than Leigh our social worker she had become more a friend then a staff member to us. so I shouldn’t put her in the same category as the rest of them also “bossy” Alison (one of the nurses Jake liked at the royal has sent a message on his page but she works over seas now .
We are doing Ok! we have our moments, as I suspect there will be many more to come over the years
Our Jacob was a huge part of our lives long before he was sick. Being the youngest and my baby I suppose that’s normal too, I see his smile in my minds eye and that for now will have to be enough
Be good stay healthy

Monday, June 27, 2005 6:16 PM CDT

just some of the flowers sent to Our jacob

Sunday, June 26, 2005 6:58 PM CDT

Sad news today

Little Jacob Christensen Received his angel wings today.27th of June 2005
At home in Makay with his family
No more cold hospitals no more pain. flying high with angel wings in heaven
Our hearts go out to Jacob’s Family and friends
Please pray his family have the strength to get through the days ahead Angel Jacobc

Sunday, June 26, 2005 5:55 AM CDT

Prayers and positive healing energy for Jacob C he has now developed pneumonia
How much more suffering can this poor child tolerate? JacobC page
CANCER SUX !!!!!!!!!!!!!!!
Beth and family you are all in our thoughts and prayers stay strong

Thursday, June 23, 2005 5:31 AM CDT

Thursday
We went to pick up Jake’s ashes today It’s been a whole week since Jacob received his angel wings
We are all ok so far.
The people at the remembrance gardens said there was over 300 people at Jacob’s service we hadn’t realized there were so many people as the day was a bit of a blur we hope we were able to see as many people as we could to Thank every one for coming .
Jon and I received in the mail today a key ring each with Jacob’s photo etched on one side and his name on the other .There was no card or name on the envelope we would love to Thank whom ever it was that sent it it was so beautiful of you to do such a thoughtful thing for us.
Jacob’s Carole also has struck again doing something for our family that she wont like us telling
She truly is the most amazing person I have ever met we call her Jacob’s earth angel (or other Mum)
The ladies from QML where Jacob had his bloods done every week sent us a beautiful card and Thank you for the Candle.
Michelle Thank you for all the beautiful meals
James thank you for everything you have done for us and Jacinta. you looked so handsome in your suit
Jade Douglas Leonie and Don thank you for putting all our interstate visitors up at your houses
Kye Thank you for allowing me to hold Taran all day, you have no Idea what it meant to me to hold him
To Ryan’s mates thank you all for taking Ryan under your wings and helping through the day
Jonathon’s mates for going the same for Jonathan
Lisa the locket for Jacinta was so thoughtful of you.
To Jonathon's Melinda thank you for helping Jonathon threw it all
Thank you Rhonda and Ann for the flower arrangement for jacob's casket it was stunning
We have received so many cards and flowers our Jacob would love all this fuss
We are trying to have more booklets made up asap for those of you that asked for some
We hadn’t expected as many people to came, so we didn’t print enough we are so sorry
Also those of you who didn’t get to release a balloon. We are sincerely sorry once again we didn’t know how many to have (we had 100)
Thank you for coming to honor our Jacob. He was a hero in our eyes. we are all trying to show the same courage and strengths he did. But I think he was just so much stronger then we are
Be good stay healthy

Sad news tonight Rachel received her angel wings on Tuesday at 1am
Please say a prayer for her family that they have the courage and strengths to get through these days ahead.
No more pain no more hospitals flying high and free
cancer sux
Please continue to send prayers and healing energy for Jacob C
Jacob
some people have been copying photos from jacob's page (which we dont mind )But it's exceded my photo bucket account so they have removed the photos from the front page if anyone would like photos please leave me your email address and I will be more then happy to send some to you Thanks
be good stay healthy

balloons jake had for transplant day one for every year 1 bone one for transplant

Wednesday, June 22, 2005 5:10 AM CDT

Hi every one little Jc sent me this letter on jacob's guess book.JC would send jake post cards and emails he is a very special boy and I thank his mum for helping him send it
It's not meant to make you sad it's just beautiful
love jacob's mum
Dear Mum,
I know you're going to miss me; but don't think that I will ever forget you,
or stop loving you, just 'cause I'm not around to say I LOVE YOU. I will
always love you, Mum, even more with each day. Someday we will see each
other again. Until then, if you want to adopt a little boy so you won't be
so lonely, that's okay with me. He can have my room, and old stuff to play
with. But, if you decide to get a girl instead, she probably wouldn't like
the same things us boys do. You'll have to buy her dolls and stuff girls
like, y'know.
Don't be sad thinking about me. This really is a neat place. Grandma and
Grandpa met me as soon as I got here and showed me around some, but it will
take a long time to see everything. The angels are so cool. I love to watch
them fly. And, you know what? Jesus doesn't look like any of his pictures.
Yet, when I saw Him, I knew it was Him.

Jesus himself took me to see GOD! And guess what, Mom? I got to sit on God's
knee and talk to Him, like I was somebody important. That's when I told Him
that I wanted to write you a letter, to tell you goodbye and everything. But
I already knew that wasn't allowed. Well, y'know what Mom? God handed me
some paper and His own personal pen to write you this letter.

I think Gabriel is the name of the angel who is going to drop this letter
off to you. God said for me to give you the answer to one of the questions
you asked Him - 'Where was He when I needed him?'

God said, He was in the same place with me, as when His son Jesus was on the
cross. He was right there, as He always is with all His children.

Oh, by the way, Mum, no one else can see what I've written except you. To
everyone else this is just a blank piece of paper. Isn't that cool? I have
to give God His pen back now. He needs it to write some more names in the Book of Life.
Tonight I get to sit at the table with Jesus for supper. I'm sure the food
will be great. Oh, I almost forgot to tell you, I don't hurt anymore.
The cancer is all gone. I'm glad because I couldn't stand that pain
anymore...and God couldn't stand to see me hurt so much, either.
That's when He sent The Angel of Mercy to come get me. The Angel said I
was Special Delivery! How about that?
Signed with Love from:
God, Jesus & Me
Thank you JC JC page

Ps I had a message from little jacob's mum he has turned the corner and is Ok thank you every one that has said prayers for him

Tuesday, June 21, 2005 4:31 AM CDT

Tuesday 21st June 2005
We said good bye to our Jacob today.
He had a beautiful service with all of his family there as well as his dog bonnie
We were over whelmed when we first arrived at the service it was 9.30 and already there were a number of people there
So many wore their favourite team jumpers, kids from his soccer team and school (it’s school holidays here ) there were so many people they couldn’t all fit inside the chapel we were blown away that they all turned up to say goodbye to our little man he would have been so proud and would of loved to party with every one.
We tried very hard to have a upbeat service we didn’t want it to be sad as Jacob was not a sad child he would of loved the music the kids picked out it so suited him and it was a beautiful sunny day for my sunshine boy
His Sister and brothers did themselves proud I was so proud of the way they handled themselves.

There are so many people we need to thank I don’t think there is room on this page to do so adequately
Carole and her staff sent Jacob a “Hobbit village” flower arrangement they even had a gandof on it
It was amazing.
So many parents from the mater nursing staff bought balloons (one maroon with QLD ) Jake would of thought that soo funny
As we released the balloons a bird flow over them, a lot of the people thought it was an eagle I would like to believe it was..
Thank you every one we can never thank you all enough
be good stay healthy

Please keep praying for little jacob christenson (I haven’t heard from his mum since last night)
PS our jacob's soccer team played with black arm bands on on saturday they also had a minute silence and prayer before the game he would of been so proud (and embarresed ;-)
(they won)Thank you Capalaba Accademy

Thursday, June 16, 2005 10.oo pm CDT

Jacob Michael Scott 17/06/1991 -16th/06/2005

Thursday 16th June 2005
Our Jacob received his angel wings tonight at 5.08 pm at home in his own bed aged 13 years 364days
With his sister Jacinta Brothers Jonathon and Ryan ,Jon ,Myself ,Aunty Leonie Uncle Don
Cousin’s Kye jade Tara Bianca Teigen Douglas Shae Lakota and baby Taran his dogs Bejay and Bonnie
No more pain ,no more cold hospitals my little man is now free to fly with the angels and eagles.
Please no flowers donations in jacob’s name if you like to
Ward 8 east mater children’s Hospital Brisbane ,make-a –wish ,leukaemia foundation or caringbridge
Thank you
Be good stay healthy


Our Jacob’s service is at
10.00am Tuesday 21st of June 2005
At the Great Southern Garden of Remembrance
Mount Cotton Road Carbrook QLD
UBD Map ref # 245 C12

I have been asked by some people what colours to wear to our Jacob’s service
Jacob is a sport nut. We were thinking maybe wear your favourite sporting teams colours(jerseys, shirts etc) we think he would get a real kick out of that or if you are really keen you could dress in Lord of the ring gear.;-) (joke)
If your really brave you can wear moroon ( not) ;-) ;-) Jake would say “GO THE MIGHTY BLUES”
* * * * * * * *
Let me fly like an eagle to the sea
Fly like an eagle let that spirit carry me
Our Jacob loves Eagles, he always said he would like to come back as an eagle

Thank you to everyone for your messages
e-mails phone calls
we can't thank you all enough
be good stay healthy
******
Dear Jacob
My angel boy. how we all love you
I’m going to pinch some words from one of cher’s song
Baby.
If I could turn back time ,If I could find the way.
I would take all the things that hurt you and you could stay
If I could reach the stars I would give them all to you.

But I can’t turn back time
I couldn’t find the way, to take the things that hurt so you couldn’t stay
I would still reach the sky and give it all to you .
I wouldn’t ask for one more day just to hold you
I couldn’t ask that of you
Watching you in pain was unbearable to all of us.
Where did you get your strength from My Jacob
You looked after all of us from the day the Dr told us you had that monster growing in you
Were did you find the courage my Jacob to go on ?
We all know why you stayed as long as you did. You had to wait until you thought we could let you go
I thank you for allowing me to be your Mother I was honored to see you become the amazing young man you are
God has no Idea just how amazing a person he now has in heaven
If I could turn back time my Jacob
If I could change the way.
You would be here today .healthy happy driving me nut’s kicking the ball in the yard playing with Bonnie and Bejay
I love you Jacob Michael Scott
Thank you for picking me to be your mother.
with love Jacob's Mum
20th June 2005
extra prayers tonight please for little Jacob Christenson His mum messaged me he is expected to recieve his Angel wings tonight Beth you are in our thoughts and prayers as your family travels the same road we are now on
from one mother to another my heart is breaking for you.Jacob's page

Wednesday, June 15, 2005 5:27 AM CDT

Wednesday
Jacob’s Aunty Leonie went home today ;-( she gave Jake his Queenslander thongs he wasn’t impressed at all ;-) state of origin is on tonight Jacob has slept most of today I think so he can stay up and watch the game tonight
Please send Jayden W healing energy and prayers as he fights this new battle against A.L.L
Be good stay healthy
PS Jake says GO THE MIGHTY BLUES! (NSW)
the rest of us say "GO THE CAIN TOADS" queensland rules!!!

Tuesday, June 14, 2005 2:27 AM CDT

Tuesday
Jacob has had a much better day today. he even had some raisin toast and a cuppa for breakfast this morning. He and I had a game of “mancala” and a couple of hands of “Uno” he won 4 out of 5 hands. I still can’t beat him at any games ,he has tried a million times to teach me how to play chess and has refused to attempt a game with me (I keep telling him I’m just to old now to learn ;-) the only way I can win a game of checkers is to cheat ;-) I tell every one he cheats. it’s not right that he can thrash him mum at everything ;-) even with him sick I can’t win.
We went to the shops for a while dropped into say Hi to Joy at Rabbit (Jon use to work for rabbit) did a little shopping trying to find something for his birthday Aunty Leonie brought him a pair of Queensland origin thongs. (he will get them on Friday). I can’t wait to see his face when he gets them (he goes for N.S.W ;-(
Leonie goes back home tomorrow Jake’s going to miss her bossing every one around (big sister syndrome ;-) He wants her to stay for the footy Wednesday night so he can give her a hard time ;-)
He received a birthday card from “Camp Quality” and his “Chemo Angel” Dianne today. that was a lovely surprise for him
Be good stay healthy
Ps Thank you to everyone for your birthday wishes on his guess book

Jacob in his New Zealand shirt Jacob and ryan's first time to play in the snow ;-)

I recieved some sad news today Sarah received her Angel wings on Monday.Please put her and her family in your prayers as they struggle with the loss of their little girl
Cancer Sux!
Thank your Berni and Beth for letting me know
I have found out that one of the boy's jacob knows from the mater has also relapsed
Nerida, Anthony and jayden you are all in our thoughts and prayers

Saturday, June 11, 2005 9:43 PM CDT

Saturday 2005
Leonie, Don, Kye, Jade, Douglas, Graham and kids(Shay, Bailey, Ebony and Taran) all came over today so Jake could see the baby he is now 7 weeks old and is sooo cute;-),
It’s Ryan’s and Jacob’s birthday next weekend. We decided to have their birthday cakes while we had the little kids here. (Birthday’s are always so much more fun with little ones about)
Jacob slept most of the day and Bailey was getting very concerned that we would never get to cut the cake ;-) and asked was Jacob going to wake up at least 100 times. ;-)
Finally Jake woke up long enough to have a hold of Taran, we got the cakes ready with candles the kids sang Jacob happy birthday then we had to do the same for Ryan (Bailey and Ebony are twins so they thought this wasn’t strange at all ;-) Jacob stayed awake long enough to have photo’s taken ;-)
be good stay healthy

Jacinta Taran and Jacob
Sunday
Please extra prayers for Sarah H she is not doing well and is expected to receive her angel wings soon
Also I’m asking for extra prayers for Our Jacob, he also isn’t doing well his nasal tube blocked last night I noticed he has patechiae (means he needs platelets) he is carrying a lot of fluid also .Jon took him in today to have the tube changed he had to have albium ,platelets and blood he also has very high potassium levels we are hoping he will be able to come home tonight and not have to stay in. Jacob is tired and I don’t know if he can fight for much longer
Prayers for Sarah, Jacob C and our Jacob Please all three have fought long and hard
Be good stay healthy.
Monday 13th June 2005
4 day’s until Jacob’s 14th birthday
Jacob was released from hospital last night at 11pm, he had a good nights sleep and awoke early in the morning his day started off well he had a soak in the bath and Aunty Leonie massaged his hands and feet (Leonie has decided to stay for a few days) about mid morning he became very distressed with pains in his chest he was having trouble getting himself comfortable his stomach is so extended now he finds it hard to sit up for long nothing was working we tried hot packs massages extra pain meds he didn’t want to go to the hospital we thought we were going to have to take him in after a while (felt like hours ) he seemed to relax and started to dose.
Jacob sat in the wheel Chair on the verandah for a little while today watching Ryan throw the ball to bonnie (and bonnie not returning them ;-) he then slept most of the day he was more comfortable though.
Tomorrow will be a better day
Be good stay healthy

Thursday, June 9, 2005 2:42 AM CDT

Thursday
Jacob’s had a couple of very sleepy days he seems to be comfortable though and hasn’t needed as much pain meds as he had been on
He didn’t get to his naturopath appointment he was just to sleepy and feeling nauseous this morning so we are hoping if he feels up to it tomorrow he can have his appointment then.
Michele and Paul you are both in our thoughts sorry your trip home to Bendigo is for such a sad occasion
Be good stay healthy

Please Put Jacob C in your thought and prayers Jacob isn't doing well his Mum Beth said he is going down hill fast.Jacobc page
also prayers and positive energy for Jayden C-F mum she is really stuggling at the momentJaydens page
be good stay healthy

Tuesday, June 7, 2005 5:32 PM CDT

Tuesday
Jacob went into the hospital today for his transfusion (his choice)
They decided to give him an albium transfusion as well, so that meant an extra 4 hours at the hospital
Which is the exact reason why he didn’t want to go in in the first place ;-( for a change he was actually put onto banksia ward (oncology) that make’s three times in the last 9 months we have been on the ward he should be on instead of dumped off onto other wards ( 9 months of be shoved from ward to ward makes it hard for kids to make friends, when you’re a long term patient (especially a teenager) it’s important to make friends as his old friends are busy having a life; which is the way it should be. kids should be out having fun not hanging around the hospital.
Ryan decided to go to the hospital after school instead of coming home, little did he know that they would still be there at 10.30pm.
Ryan and Jacob are still best mates Ryan rarely leaves Jacob for long only to duck up to Kane’s house usually they stay here. Ryan has also chosen to have this season off from soccer (first time since he was 5)
I worry how Ryan will cope when Jacob goes, as it’s always been “Ryan and Jacob” from the day Jacob was born (the day before Ryan’s 2nd birthday) when Ryan informed everyone that Jacob was “HIS Baby”;-)
Be good stay healthy
I recieved some sad News today Micheles brother John has earned his Angel wings on Monday at 3pm our hearts and prayers go out to Michele and her family

Monday, June 6, 2005 4:37 AM CDT

Sunday
Jake’s Aunty Leonie Uncle Don and cousin Teigen came over today.
Jake was asleep most of the visit, so missed out on his massage from Teigen. (She gives the best massages and he usually looks forward to them.)
He did get me to show Aunty Leonie his NSW champions banner (he was born in NSW so follows them in state of origin footy) she of cause barracks for QLD. He has a NSW T-shirt that she is going to have to wear when his team wins on Wednesday and then the decider in a fortnight time ;-) at least a little of the cheeky Jake was showing, I think he can’t wait to see her with a rival teams shirt on ;-)
Be good stay healthy

Monday 7th June 2005
Jacob has had a better day today he has had almost a full day pain free ;-) he still isn’t eating though he has had a bit more spirit even has argued with me about eating. (at least he is showing some spunk ;-) .he is still refusing to go into the hospital for his transfusion and has dug his heels in. I told him if he isn’t eating tomorrow or gets out of bed I WILL be taking him to the hospital kicking and screaming if I have to.
Needless to say I’m not his favourite person (that’s ok isn’t that what Mum’s are for ;-) he always could be stubborn when he wants to be
Be good stay healthy

Saturday, June 4, 2005 2:57 AM CDT

Friday 3rd June 2005
Jacob was not up to going to the hospital today he wouldn’t budge out of bed (he is too big for us to carry anymore) We rang the hospital and said he was having a bad day he wouldn’t come in. what did they want us to do? The reply was if he doesn’t want a transfusion it’s not that important bring him in another day if he wants too (??????) I’m at a lost to know what these people are thinking
This is the first time he has ever refused to go in, I think he just couldn’t face the drive into the city when he is so tired and his stomach and back aches and just wanted to be left alone to sleep…
Be good stay healthy
P.S Thank you Barbara D for your visit on Thursday night and the gift we appreciated it also the offer to help with the housework. be careful! I might just call you up on the housework one ;-) ;-) ;-)It was lovely to see you

Saturday 4th June
Jacob was a little more alert today he spent most of the day out in the lounge room dosing on and off he seems to be more comfortable and hasn’t need as much pain medication, his feet and face aren’t as swollen today either ;-)
Be good stay healthy

Monday, May 30, 2005 11:36 PM CDT

Jon was cleaning out the shed on the weekend and found some action shot’s he had taken of Ryan and Jacob
It’s so hard to remember now, those days of watching him play soccer with his beautiful long stride as he would run after the ball the parents barracking him on and that amazing left foot of his that seem to always know which part of the net to shoot at,
I use to love to watch Ryan and Jacob play in the same teams (Jacob would often fill in for Ryan’s teams). they always played in off season teams together whether it was six-a –side or Futsal, Ryan being right footed and Jacob left they would seem to be able to read each others minds and would be there to back each other up. I even miss handing the boys a hammer and nails to replace all the fence panels that would get knocked loose when ever they (and ½ the neighbourhood) would play soccer, cricket, softball ,basketball etc in our yard I almost miss the broken windows too ;-)
Now I watch my vibrant, full of energy boy with the cheekiest eyes sleep most of the day and I wonder did those days really ever happen?
Be good stay healthy

1st June 2005 Wednesday
We took Jake to QML to have his bloods done today as usual the ladies there were very sweet to him and asked how his trip went.
After his blood tests we ducked into the shops to have a film developed while we were there we ran into little Dean and his mum. Dean was the baby that had the aspergillus fungus at the same time as our Jacob both boys were so sick at the time Dean’s mum and I would chat in the parents room sometimes. He is looking wonderful and has no outward signs of the horrible disease he of cause will be on medication for a while yet as the fungus is so difficult to get rid of.
The hospital rang this afternoon Jacob will need a transfusion on Friday I’m so not looking forward to being there, again sitting around all day until they decide to hook him up. I have lost a lot of trust in them after the major balls up they did just before we went To New Zealand, Iwill be watching them like a hawk.
Jake’s still very sleepy his back is giving him some discomfort, his stomach is still very extended and he isn’t eating, we are running his feed during the day as they seem to upset his stomach during the night interrupting his sleep
Michelle’s Brother “John” is still on the critical list but is in there fighting he will be a grandfather in November so he has a new baby to live for. Please send some healing and positive energy his way.
Be good stay healthy
16 days until our Jacob’s 14th 17 day’s until Ryan’s 16th P.S thanks Emma for the phone call looking forward to catching up with you.
Thursday 2nd June 2005
200 day's since jacob recieved his new bone marrow even though it didn't work we are still grateful to his Doner
she has given us 200 more days
be good stay healthy

Sunday, May 29, 2005 8:04 PM CDT

Monday
You would of thought that Jacob and Ryan would have had enough of the “Lord of the ring”, since we were so immersed in everything to do with it when we went to “New Zealand”! No not our boys! it’s made them more fanatical then ever …Jacob has brought the extended version. Now we have an extra 120minutes of the movies and hours of special features ( oh Joy ;-) all they need now is to bring out the extension of the extended movie and they will be over the moon. ;-) ;-)
Jacob’s sleeping more the liver tonic has eased his pain a fair amount. His counts are dropping except of cause the leukaemia it’s still growing we have little hope of our miracle now (Gods not listening) though Jacob’s going to fight with every ounce of fight he has left. I so admire his courage and strength. He has so much he want to do and is still making plans
Be good stay healthy

Friday, May 27, 2005 2:01 AM CDT

a little kiwi humour :-)
Friday 27th May 2005
We took Jake to see a naturopath yesterday, he has given us a diet and some tonic for his liver
Already he is more comfortable and has had a lot less pain so therefore not as much pain meds ;-)
The diet is an easy one to follow as it has a lot of the foods on it he has been craving anyway.
Hopefully this will make him more comfortable.

Michelle (our neighbour) has some bad news yesterday. her Brother John (in Bendigo) has had a heart attack she and Paul have flown to Victoria to see him. please put him in your prayers and send healthy healing energy his way we wish him a speedy recovery as the news at the time I spoke to Michelle was very grim
Be good stay healthy

Saturday 28th may 2005
jacob is looking so much better today the yellow has gone from his eyes and they are much clearer also his skin has more of a healthy glow he is sleepy today again though it's more a restful sleep he hasn't had near as much pain and has made a fishing date for tomorrow with jacinta and james (he loves to fish) here's hopeing he has enough energy to go ;-)
20 day's until jacob's 14th Birthday
be good stay healthy
P.S Thanks beth for your phone calls they always have me laughing :-) Beth's jacob is doing ok at the moment to ;-)
jacobc's page

Tuesday, May 24, 2005 7:24 AM CDT

Stuart Braxton played a ring wraith in lord of the rings and works at the hotel Aurum were we stayed
Tuesday 24th may
We had to be at the hospital today early for Jake’s L.P and intrathecal chemo. as usual the Dr’s were all doom and gloom no good news. he had to have a stomach x-ray (his stomach is still very extended and his liver is enlarged due to one or all of his meds the x-ray showed nothing (as usual) They have no Idea why his stomach has been giving him so much pain all we get told is it could be one of a dozen reasons why and as for trying to get him better it isn’t a priority at all (they don’t like the fact that we are still praying for a miracle for Jake ) I sometimes feel like they would prefer if he just gave up so they could put his file away… we sat around until 3pm before we were able to go home
Bejay (our other dog) was so funny this morning.. we had to wake Jacob up very early to try and beat the traffic into the city to be at the hospital by 8.30am as I was trying to wake Jake up Bejay jumped on his bed and stood guard growled at me and every time I tried to give Jacob a small shake to wake him up he(Bejay) actually went for me so I walked down to the other end of the bed and he ran down there and wouldn’t allow me to wake jacob up Bejay wouldn’t even let Bonnie any where near Jake today ..this is so out of character for the dog as he is a beautiful placid 9 year old cavalier king Charles spaniel ;-)
Be good stay health


it's never to cold to eat Ice cream ;-)
Wednesday 25th may 2005
Happy Birthday Jade we hope you have a fantastic day party hard love you xxxxx
State of origin football is on tonight
watch out Aunty Leonie cause jake's team is going to kick your teams butt big time
be good stay healthy

Sunday, May 22, 2005 5:02 AM CDT

Saturday last day in New Zealand
We were up early this morning to finalize our packing and to book out of the Hotel ;-(
We went into Queenstown to go to “The station” information center. the manager Amanda was so sweet not only did she take Jake’s chair over to the Gondola lifts after our trip the other day she checked to see how he enjoyed the ride, when we said he wasn’t up to it she offered give us a refund voucher to have a go another time or Ryan could do the Bungie even though it’s dearer they would make up the difference. Ryan jumped at the chance to Bungie again (no pun intended ;-)
The Bus driver “Glenn” drove us all out to the “Kawarau” bridge. Ryan could hardly wait to get there to risk his neck yet again. He was almost jumping up and down at the sign in desk. Jake and I watched from the viewing area Ryan was itching to have his go as he hopped up to the platform Jake yelled out to him “hey Ryan can I have your stuff if you don’t come back up??” (Nice brother!) Ryan did a beautiful swan dive off the Bridge (43m) and dunked his head into the freezing water. If we didn’t have to catch the bus back to catch our plane he would have loved to have another go.
Glenn insisted on dropping of the other passengers and driving us back up the hill to our motel so we wouldn’t have to push Jacob all the way and we would be there in time for the shuttle to the airport.
www.AJHackett.com (fantastic people)
We were picked up by the shuttle and taken to the airport at 2.30 to book in.
We flew home with air “New Zealand” flight the ladies at the check in counter were lovely we had a chat and laugh about our holiday and how beautiful New Zealand is.
The customs guy who checked our passports was really chatty and we had a laugh with him about how psycho Ryan was for Jumping off a bridge and a cliff.
We were first on the plane, Jacob had to taken up with the forklift again .Jon, Ryan and I were already in our seats. The steward “Mike” call us up to the front of the plane. They had up graded us to “Business class” (made us all feel extremely special) as the plane started to taxi onto the run way Jacob swallowed a mintie the wrong way it was caught in his throat (he wasn’t choking) so “Mike” insisted that they go back to the terminal ( they had a passenger choke mid flight the week before) and they called a paramedic into the plane to check him (Jake) over he had by this time brought the lollie up so was fine just very very embarrassed it was better to be safe then sorry. We appreciated the fact that they were so attentive. They treated us like royalty all the way home (Jacob slept the whole way) Thank you Alison and Mike for making our trip home to Australia so special.;-) ;-)
We flew into Sydney a very sweet lady took us through the airport and cutoms (I didn’t get her name;-(
We were taken to the gate by another realy funny guy chatting away pointing out pretty girls to the boys as we rode through the airport we boarded a Quantas flight to brisbane Jacob was boarded first again (not business class this time ;-/ the flight only took an hour or so and we were landing back home in Sunny Queensland (we had to strip off all our winter woolie as we went ) “Dwayne” took us through the airport again (he took us to and from the plane when we went to Disneyland) he remember Jacob and had a chat about disney land and new zealand he took us all the way out to James car (we had an airport chair) he really didn’t have to he just went the extra mile because he seems to be a really nice person.
What has amazed us with our trips this year we have met some extremly caring and conciderat people we have had no dramas at any airport or any where we have stayed
Jacinta and James surprised jacob by having “Bonnie”( his dog) there in the car to greet him jacob ran to the car Bonnie wagging he rear end (she waggs everthing not just the tail) he’s laying on the foot path with her jumping and kissing him all over. it was the best home coming ;-)
Be good stay healthy


welcome to new zealand (fork lift)copper ride Dominic and jake paragliding

Friday, May 20, 2005 4:00 AM CDT

jake jon and ryan went on a small airplane today to view more L.O.R sights (I chickened out this time) there was a lot of cloud cover today so they almost had to cancel
they said it was "pretty Good"(ryan) jon said it was brillant they flew ove glaciers they had lunch were Rohans castle stood also landed were the big battle scene was.they were told how the horses rode into battle and how the camera worked they all said it was excellent thank you Robert (the pilot)Jake also got to sit in the front ;-)
tonight we went to Putt Putt (caddy shack)it's an indoor one and was good value for the money, we had terrific time.Jake hasn't lost his competative edge at all he still likes to win (and he did!:-) jon ryan and I sucked big time ;-)
tomorrow we fly home ;-(
miss Jacinta Jonathon the dogs cats fish etc other wise we might stay for ever ;-) ;-)

Thursday, May 19, 2005 3:27 AM CDT

Kia Ora
we had the most fantastic day today..
first we visited the Kiwi bird park and saw our first Kiwi (bird) the lady was so nice at the desk she wouldn't allow us to pay as the park is difficult to get around in with a chair (so sweet of her ;-)
then we went for our shot over river and heli combo trip.
unfortunatly jake wasn't up to the boat ride ;-( Jon and ryan went on it and said ot was fantastic jake and i enjoyed watching them risk their lives as we sat safely on the bank and watched the water flow by ..
then off to our helicopter ride (my first and last time thank uou very much....)the boys loved it jake and ryan were able to sit up front with the piolet..I was very releived when we landed on terra firma (if we were ment to fly we would have wings;-) the piolt gave jacob a hat .
Jacob went paragliding today (Tandom) with "Dominic" he was so happy about risking his neck jumping off a cliff you couldn't wipe the smile off his face (I hide in the shops while this was happening) Ryan did his bungie jump! and wants to do it again as it was "awesome" (none of the men in my family have brains!;-)
we went to the "Kiwi Haka" Jon was picked to be the "King"
it was fantastic unreal excieting and brillant fantastic (oops i already said that;-)
none of us want to go home on saturday (wonder if we spend all our money and don't have the $100.00 to get out of new zealand would they make us stay???? ;-)
be good stay healthy
www.paraglide.net.nz If you go to www.ajhackett.com you can see ryan's jump

Tuesday, May 17, 2005 2:28 AM CDT

Jacob has fallen in love with New Zealand ;-)
especialy after our "Nomad Safaris "Safari of the rings" tour today ;-)
we were picked up at 8.30am (yep I got the boys out of bed before noon;-)By our tour guide"Jonathon"in a land rover named "Pippin"
we drove through some spectacular country. this country has to be seen to be believed it's amazing...
we saw "The ford of Bruinen"(Skipper cannon)where Arwen has a sick Frodo on her horse and she faces the "Nazguil"the water rashes down to save them
Jonathon told us that the horses wore rubber shoes on their hoofs to protect them from the rocks as the river is very rocky and freezing cold.
Did you know that some of the ring wraiths were woman?
it was lambing season and some of the extras had to go back to their farms.
We saw the "Kawarau River" where they floated down in the elven boats and first saw the "Pillars of the kings"
Did you know that Grimly's stunt double fell in the water and could of drowned if "orlando bloom hadn't grabbed him until help arrived? he would of sunk to the bottom like a stone and may never of been found..
we stopped to have a look at the "bungie bridge" where the first commercial bungie jumps started Ryan is hanging out to have a go (I don't think so!!)
Jacob had mentioned he has never felt snow (I think it was jake)Jonathon went out of his way (not part of the tour)to take us up the mountain (On a road a goat would have trouble navagating with this huge drop on the side)(I couldn't look) we stopped at the ski lodge (it's not open yet)Jonathon got out and asked someone permission for him to drive us up further so jacob could touch the snow.
Jacob and Ryan had their very first snow ball fight.both of the rotters ambushed me ..Do you know how COLD snow is?????
Jacob was beside himself he was so happy;-) I could of sat and cried to see him laughing and (Trying) to throw snow balls at Ryan Jon and myself.We couldn't believe that someone yet again has gone out of their way to show us some more kindness this will always be the high light of our trip for me.Thank you Jonathon with all our heart
after the snow fight we drove to Queens town to pick up our picnic lunch (which was dilicious)(sorry can't spell tonight) we picniced in a beautiful location "Amon Hen"that's where Frodo appears with the ring during the fight (I think) Ryan layed down where Sam Frodo and smeagal watched the Oliphants before some battle or other (there was a LOT of battles in theses movies) we walked in the forest where "Boromir"finaly succumbed to the lurtz
Jonathon told us one of the people he works with (forgot his name sorry)is called the "Gay Orc" he is the "Orc that runs very daintly down the stairs during (another) battle
I will never be able to watch the movie in the same way again..;-) "Gay Orc's?????
The tour was Fantastic we learnt so much and saw the most spectacular things
jacob had the best day Thank you Nomad Safaris and make a wish especialy "Jonathon Lea"
be good stay healthy visit New Zealand ;-)
P.S what was realy amazing Jacob and Ryan both reconised locations of the movie even before we were told (and I never thought boy's paid attention to things like that;-)
Wednesday
jake had a sleepy day today so we didn't go out.Ryan and jake watched movies while Jon and I went to the shops to have a look around for a little while.
can't believe we are half way through our holiday none of us want to go back home (other than we miss Jacinta and Jonathon) we may not ;-) (plenty of bush land to hide in ;-)
be good stay healthy

Saturday, May 14, 2005 8:28 PM CDT

New Zealand Thank you "Make-a-wish"
Saturday the alarm went of at 4am to get everyone out of bed Jacinta and James drove us to the airport to catch our 6.30 flight to Sydney.we caught the shuttle to air new zealand terminal a lovely girl name "jenny "took us through the airport we boarded the plane and Jacob promply started to throw up (not a good start) I was all for getting of the plane and staying home but he insisted we were going and he felt better after a heave.he slept most of the way to "Queenstown" I woke him just before we were to land so he could see the amazing view as we flew in.They made an announcemnet over the P.A to wish him a wonderful adventure(I thought that was lovely ;-)
jake couldn't take his eyes away from the mountains they had snow on them, the view was amazing flying into the airport was like a picture post card I dont think I have ever seen anything more beautiful.it's is sight every one should experence we had to wait for a fork lift to get jake out of the plane as they only had stairs he cant walk down that many .it was no hard ship as it gave us more time to look at the mountains.after we cleared customs (lovley people laughing and frendly) we were met by "super shuttle"and our Driver I think his name was "Joel"he gave us a quick tour as we drove to the motel.
The motel is beautiful the rooms are huge and we have the best view of the mountains and the lake.it's autumn here the trees are changing colurs the reds oranges agains the green trees and the brown of some of the hills and the white caps of snow as well it's breath taking.the lake here they say has a heart beat as it raises and falls every 5 minutes and has a story that goes with it
when we got to the room they had left jake a hat bag and drink bottle also a letter from "Staurt Buxton" who played one of the ring wraiths" as well as body doubled in the horse action s parts in the movie he has invited us to meet one of the horses he trained that had a part in the movie.
jake is so rapped
he said he would love to live here.
we are staying at the Scenic circle Aurum on stanley street
Sunday
after a late start this morning (we are still on aussie time )we went for a walk into town and jake had a look at the lord of the rings shop the people in there had heaps of stories to tell him about making the movie we left the shop broke and jake needed to have a sleep.
jacob had a sleepy afternoon which is to be expected as he is on enough pain meds to stop a bull elephant in it's tracks ;-) his spirits are still good.
Jon and the boys have gone to watch some "boy type movie tonight"
Wednesday night is the premier of "star wars movie" ryan want to go to the midnight session he is as big a star wars fan as jake is lord of the rings ;-)
Monday
Dart river safari today
I was up before the sun this morning (7.30 am)even the sun thinks it's to cold to get out of bed ;-) the mountains were capped with mist and as the day grew lighter the mist rolled down the mountain side the lake loos like a sheet of glass out side the window as I eat breakfast there are finches in the tree being very busy what better way is there to syart a day ;-)
the boys are all still asleep none of them are morning people ;-)
We just need it to snow jake has never felt snow before his wish was a snow trip but because we had to keep cancelling last year even though he was in remission we waited 5 months before DR.Ballsy bothered to take his gall bladder out and of cause he relapsed then they took it out ;-(
the cold has made ryan's asthma play up.he didn't pack his spare puffer so $115.00 later he now has a new puffer (we had to take him to the dr as they want sell them over the counter ;-(
we were picked up for the "dart River safari at 11.45 the trip to the river was breath taking
the boat ride was good (after being on a jet ski with Jon not much scares me now ;-) we were shown the mountains that are in the lord of the rings movie they are soo beautiful
new Zealand is beautiful
be good stay healthy
Happy Birthday Melinda for Tuesday xxx

Friday, May 13, 2005 7:55 AM CDT

Friday 13th April 2005
Extra prayers and positive healing energy for Jacob.C and Sarah.H. both kids are from up north and are not doing well Our thought are with them and their families.
Our jacob had to be at the hospital at 9.30 today to have his albuim transfusion (albium is a plasma by product help the body absorb fluids). The palliative nurse said that they had decided to give Jacob 1 unit of blood even though his HB counts are good and we would be out of there by 3 at the latest ;-) ;-) to start of we sat there for ages before he was even accessed then about 11 they set up the albium it’s a 3 hour transfusion . Jacob started to feel really uncomfortable and was having pain so I heated up his heat pack when I went to put it on his stomach it was very hard and extended I looked at his feet they were swollen double their size as were his legs (they had over loaded him with fluid) forgot the lazecs) lazecs make you go to the toilet and drain off the excesses fluids your body doesn’t need. So of cause he had to have his obs taken regularly then by this time it was 2.3O still no blood next thing and orderly came and started moving Jake’s bed said we were off to Paterson ward (we hadn’t been told he was being transferred or why at that time) we transferred to Paterson ward they finally hung his blood at 3.30 (4 hour infusion) by this time we we were getting very agitated as we had 100 things to do for our trip tomorrow. 8.00pm he was finally released .
The pain he has been in this week could be due to his cyclosporine level had dropped the dr has upped the dose hopefully that will help
We were so pleased to get out of there today….

Little Rhiannon’s mum brought her to the hospital today to see Jacob. she is doing well and has grown heaps since we saw her last she is pass 150days and is going strong (Thank God)
Be good stay healthy (beware Friday the 13th ;-)

Thursday, May 12, 2005 3:09 AM CDT

Extra Prayers and positive energy for Jacob C (from Mackay) he isn’t doing well and need your prayers
He and his family have received more heart breaking news. Cancer SUX!!!!!
jacobc page
Our Jacob has to go into Hospital tomorrow to have an albium transfusion his electrolytes have shown he is very low in albium he will also have some lazec to help get rid of some of the excess fluid.

We found out on Friday (last week) that Jacob’s make- a –wish is on Saturday. (I haven’t mentioned it before as I didn’t want to jinks his trip as we have had to cancel it 3 times already, he hasn’t been well this week we thought we might have to cancel again) So if tomorrows transfusion dose it job we will be flying out to the “land of the long white cloud” New Zealand….on Saturday at 6.30 am

Please extra prayers for all those kids that are fighting so hard to beat this monster
Be good stay healthy

Leonie Me Bianca Teigen Marree Bonnie

Wednesday, May 11, 2005 3:28 AM CDT

Aunty marree and jake
11th may 2005
Jake has had a much better day today.;-) We went to QML this morning to have his bloods done. The people down there are so nice and always make a fuss over him.
The count results are good no transfusions this week ;-) we are still waiting on some results
Be good stay healthy

jake mowing the lawns the other week

Monday, May 9, 2005 11:07 PM CDT

Jacob hasn’t been having many good days, at the moment he has been in a lot of pain we have had to double his fentanol back ground and his oxycodine he is carrying a lot of fluid in his face and feet the hospital doesn’t seem concerned at all they just say that it’s to be expected they haven’t wanted us to bring him in so they can see the swelling. I asked how last weeks count were (they hadn’t checked them )he will have blood counts done again today. he really wants to go back to Dr Ram at the mater but we haven’t been given that option I know the Doctors have to be detached but do they also have to be so cold as well???
He is sleeping more but he is trying hard to keep his spirits up,it must be so hard to when he is in so much pain all the time. A”lady” came into Jon’s work once (Jon was wearing a bandana for CanTeen) she asked him about the bandanna he said he has a son with leukaemia she scoffed and said “leukaemia that’s nothing now a days they cure it all the time” I wish I could grab that woman and let her see how painful “leukaemia can be!!! Our Jake has lived with this monster for 18months he never complains, never once has asked “why Me!” never ever made a fuss when they have been poking and prodding him all the surgeries not once has he said no to anything they have asked of him yet this monster is still going to take him from us!!!


When Jacob was little every night after his bath he would run out to the kitchen all happy with that beautiful mop of blonde hair ,his huge blue eyes and cheeky grin. “Mummy I’ve got your towel!” and he would take off to his room with me chasing him to tickle him dry. The house would be full of his squeals and infectious laugh.
Jacob was always into some mischief or other .at times I would be pulling my hair out and he would just throw me one of his cheeky smiles and I would melt.
Every night for as long as I can remember he has always said “night Mum I love you!” I would say, “I love you more I love you to the moon and back” he answers “impossible cause I love you to infinity and beyond”.
Be good stay healthy love your kids to infinity and beyond

Saturday, May 7, 2005 5:15 AM CDT

Jacob and Lakota
Friday 6th may 2005
Jacob woke feeling well today, he challenged his Pop to a came of pool. Which he lost ;-( he said Pop hit some “fluke” shots) of cause he and pop argued about that (jokingly) Jake played with his roller blades on so that put him at a disadvantage ;-) ;-).
Jake decided to drive with poppy Leo to Aunty Leonie’s they still got lost (GPS and all) we met them there as we are staying over, after listening to Leonie’s and poppy Leo’s tall stories they all went in to watch the footy on the telly. “City –v- country” as usual Jacob and Leonie were going for opposite teams (Jacob “City”) he tried so hard to stay awake to see the end result but it got the better of him and he had to go to bed.(city won ;-) ;-)
State of origin starts on the 25th of May, the two of them are going to be unbearable. I think I will leave home for a few weeks! Anyone have a spare bed? ;-)
Be good stay healthy

Leonie and jake cuddles ;-)
Saturday May 7, 2005
Happy anniversary Jon
Jade and Douglas came over for a visit today just in time for Jon to have another job around the house for poor Douglas to do.( he is going to stop coming around soon ;-) Jon and Douglas had to carry Jacob’s fish tank up the stairs, (Jonathon and Ryan were conveniently both out.) helped him set it up, While the “men” worked Jade and I sat out in the sunshine and had a leisurely cuppa ;-) they did a terrific job on the tank it will look brilliant when it’s settled
Be good stay healthy

Sunday 8th may 2005


HI this was sent to me from Narell Bindies and Chris's mum I thought I would share it for Mothers day
BEING A MUM..................

We are sitting at lunch one day when my daughter casually mentions that she
and her husband are thinking of "starting a family." "We're taking a
survey," she says half-joking. "Do you think I should have a baby?"
"It will change your life," I say, carefully keeping my tone neutral.

"I know," she says, "no more sleeping in on weekends, no more spontaneous
vacations."
But that is not what I meant at all. I look at my daughter, trying to decide
what to tell her. I want her to know what she will never learn in childbirth
classes.

I want to tell her that the physical wounds of child bearing will heal,but
becoming a mother will leave her with an emotional wound so raw that she
will forever be vulnerable. I consider warning her that she will never
again read a newspaper without asking, "What if that had been MY child?"
That every plane crash, every house fire will haunt her. That when she sees
pictures of starving children, she will wonder if anything could
be worse than watching your child die.
I look at her carefully manicured nails and stylish suit and think that no
matter how sophisticated she is, becoming a mother will reduce her to the
primitive level of a bear protecting her cub. That an urgent call of "Mom!"
will cause her to drop a soufflA(c) or her best crystal without
a moments hesitation.

I feel that I should warn her that no matter how many years she has invested
in her career, she will be professionally derailed by
motherhood.

She might arrange for childcare, but one day she will be going into an
important business meeting and she will think of her baby's sweet smell.
She will have to use every ounce of discipline to keep from running
home, just to make sure her baby is all right.

I want my daughter to know that every day decisions will no longer be
routine. That a five year old boy's desire to go to the men's room rather
than the women's at McDonald's will become a major dilemma. That right
there, in the midst of clattering trays and screaming children, issues of
independence and gender identity will be weighed against the prospect that a
child molester may be lurking in that restroom.

However decisive she may be at the office, she will second-guess herself
constantly as a mother. Looking at my attractive daughter, I want to assure
her that eventually she will shed the pounds of pregnancy, but
she will never feel the same about herself. That her life, now so important,
will be of less value to her once she has a child. That she would give
herself up in a moment to save her offspring, but will also begin to
hope for more years, not to accomplish her own dreams, but to watch her
child accomplish theirs.

I want her to know that a cesarean scar or shiny stretch marks will become
badges of honor. My daughter's relationship with her husband will change,and
not in the way she thinks. I wish she could understand how much
more you can love a man who is careful to powder the baby or who never
hesitates to play with his child. I think she should know that she will fall
in love with him again for reasons she would now find very unromantic. I
wish my daughter could sense the bond she will feel with
women throughout history who have tried to stop war, prejudice and drink
driving.

I want to describe to my daughter the exhilaration of seeing your child
learn to ride a bike. I want to capture for her the belly laugh of a baby
who is touching the soft fur of a dog or cat for the first time. I want her
to taste the joy that is so real it actually hurts.
My daughter's quizzical look makes me realize that tears have formed in my
eyes. "You'll never regret it," I finally say. Then I reached across the
table, squeezed my daughter's hand and offered a silent prayer for her,
and for me, and for all the mere mortal women who stumble their way into
this most wonderful of callings.

Please share this with a Mom that you know or all of your girlfriends who
may someday be Moms. May you always have in your arms the one who is in your
heart

Have a wonderful Mothers day to all Mothers and Granmothers

Thursday, May 5, 2005 6:52 PM CDT

Thursday 05/05/05
Jacob had a lot better day today a little sleepy but other wise fine. Our Local paper came around today to get photo’s of Jake for the story on his primary school raising money for his trip. I don’t like doing these stories as we always come off sounding like real dorks. Bonnie (Jake’s dog) actually posed for the camera she is such a poser so she was in the photo weather we wanted her too be or not ;-)
We had a BBQ for tea tonight. Jake and Ryan roasted marshmallows over the flames .My Dad leaves tomorrow to go to my sister Leonie’s house and then up to see Kye’s new baby (Taran) Who are both doing well ;-)
The visit was as usual to short. Have a safe trip home Poppy Leo ;-)
Reading little Jackson’s page the other night Jackson is over the 150 plus days and is still going strong ;-)Thank God
jackson’s page
Be good Stay Healthy
P.S Kye sorry you didn’t like the photo of you and Taran on Jake’s page love you ;-)

Poppy Leo and the four kids
jacobc page

Tuesday 03rd Wednesday 04th 2005 5:41 AM CDT

Tuesday 03-05 2005
Jacob’s Poppy Leo made it safe and sound to Queensland (after getting lost in the city for a few hours )”@#@# cities” the sad thing is he has a GPS in his car and still got lost.;-) (Country bumpkin can only navigate by land marks e.g. turn right at the black stump near the broken fence ;-) ;-) ;-)
Jacob was pleased to see him but wasn’t having a good day unfortunately.
Be good stay healthy

Wednesday 04-05-2005
Dylan 15th April 1996- 04th May 2005
Sad news today.
little Dylan Page earned his angel wings this morning age 9, Dylan and his family are from Townsville our hearts and prayers go out to his mum Alma and Family,(thank you Beth for ringing to let me know.)
Prayers and positive healing energy for Jacob.C. we hope and pray that his MRI has good results and he is able to prove the Doctors wrong you are in our thoughts and prayers Jacob Jacob.C Page

Our Jacob has had a better day today we have been able to cut down on some of his pain meds,;-)
We drove to the Gold Coast today to see the art union prize home (Jacob’s hobby) we were to have fish and chips on the beach but we have been having some much needed rain.
Be good stay healthy Hold your kids tight

Sunday, May 1, 2005 6:09 AM CDT

May 1, 2005
Jacob didn’t have a good day today. We had to take him to the hospital to have his gastric nasal tube put back in as he isn’t eating or keeping anything down. Since the doctors changed his steroid dose and stopped one all together the pain in his stomach has returned with a vengeance. He also had to go on a drip for a few hours and was released at 7pm tonight at the moment he is asleep hopefully he will have a better night then last night.
Be good stay healthy

Saturday, April 30, 2005 4:38 AM CDT

30th April 2005
Happy Birthday Gerard party hard have fun ;-)
Jacob’s had a few relatively pain free weeks now, The other day he was feeling so well he went roller bladeing and washed Jon’s car he has been very much he old cheeky self, He has hardly needed the wheel chair and has been walking more. He loved seeing the new baby it made his week. Yesterday he insisted on mowing the back lawns (unfortunately has suffered for it all day today it has not been a good day pain wise for him;-(. he has been so well in himself, that at times we almost forget that he has leukaemia. He has maintained his weight this week and didn’t end up needing platelets or go to the hospital at all. Thank God.He hates it there his spirits drop very low every time we have to go.
Little Rhiannon has been in hospital prayers and healing energy her way please.(Rhiannon had her BMT the same tome Jacob had his).
Jacob’s poppy Leo is coming up on Tuesday, to see the new baby (Taran) we wish him a safe trip and are looking forward to seeing him too.
Be good stay healthy.
Jacob C’s Mum sent me an sms today .The moral of David and Goliath: Anyone who underestimates what God can do with the ordinary has rocks in their heads ;-)
JacobC page

Wednesday, April 27, 2005 0:01 AM CDT

Taran 1 day old

Our new nephew "Taran" made his way into the world at 4.20am weighing a healthy 7pounds 12 oz 27th of april 2005
Jacob was very excieted about the new baby we had to go shopping straight away after he had his bloods done this morning.Jake loves babies and was all clucky over the baby clothes
congratulations Kye and Graham
be good stay healthy

Kye and taran Teigen and Taran
Today we visited our newest memebr of our family he is beautiful,jacob couldn't get enough of him.(jake loves babies)


26th April


Jacob was invited back to his primary school today the school and welington point community raised spending money for jakes trip
once again we are overwelmed by peoples kindness
be good stay healthy.

Sunday, April 24, 2005 5:22 PM CDT

Tony Christopher Steinmetz
23rd April 1962-9th feb 1985

24th April 2005
Jon and the boys spent today fishing. The fish were pretty safe, as they have never actually caught any ;-)
Still they all love to fish and it means I don’t have any smelly fish to scale and cook . the weather here has been beautiful Autumn is the best time of year.
Healing energy and prayers for Jacob’s Nana (Lola) she broke one of her ribs and isn’t well.
Our niece Kye will be having her baby on Tuesday (if he doesn’t decide to came before) good luck Kye and Graham we hope and pray you have a safe easy delivery and Bailey gets his baby brother soon so he isn’t hen pecked so much by his sisters ;-) ;-) ;-) and we can’t wait to see the new addition to the family (you know how clucky Jacob gets).
Be good stay healthy



25th April 2005
ANZAC DAY less we forget.
remembering all our fallen soldiers and rejoicing in our return service men and woman x x x for My marching poppy “Scotty Shipley” I still see you marching. Loved never forgotten.

Today being ANZAC day was a public Holiday. We decided to go to “movie world”, being ANZAC day the parks aren’t allowed to open before 1.30pm. Jake and Ryan had heaps of fun going on all the roller coaster rides. I don’t know where he is getting all his energy from we are all exhausted, he still keeps going I’m calling him the energizer rabbit now ;-) they had their photo’s taken with the characters (Ryan wasn’t very eager)(Not cool). Thank you Carole.

Tomorrow we have been invited to Jacob’s old school “Wellington Point state school” they had a free dress day for Jacob’s trip and raised an amazing amount of money for him. (This is not a very big school) The principal Mr. Hadfeild was so rapt in the amount they raised The Wellington point school has been so good to Jake since he was diagnosed in 2003 (he was in year 7) Peter (hadfeild) would visit and ring regularly (even when Jacob moved onto high school )his class made him the 1000 cranes we take to the hospital every time he is admitted and they hang above his bed when we are home.
We will never be able to thank them enough.

Jayden Fairful 26th April –12th January 2004
Be good stay healthy

Monday, April 18, 2005 8:14 AM CDT

Monday 18th of April 2005
Happy 19th Birthday Dylan (nephew) and happy birthday for the 11th Michelle x x x x x



We had to go to the hospital today to get some meds for Jacob while we were there Dr Margaret decided to have his bloods done instead of waiting until Wednesday,
The results were not what we were after. All his counts are starting to drop (except the ones we are desperately praying for) he will need to have a blood transfusion on Thursday. And will probably have to have platelets early next week his Blast cells (leukaemia) are still growing.
We are still optimistic that we will get our miracle Jacob is so full of energy and life It’s incomprehensible to us that he is sick …
He has his L.P on Thursday (fingers toes and everything crossed )
Be good stay healthy

Thursday 21st April 2005
There are a couple of kid that need some extra prayers , Dylan from Townsville isn’t doing well and is in Hospital, Prayers and positive energy his way please. Sarah H’s family has just found out the she has relapsed, prayers and positive thoughts and energy for her. Jacob C is going strong still he needs prayers and positive healing energy his way too. pray their parents and family have the strength to get through these hard days ahead. All these kids need a miracle
Our Jacob had his L.P today and intrathecal Chemo. Once again I’m asking for prayers and positive healing energy his way please pray that the leukaemia isn’t in his central nervous system that we get the miracle we are so hoping for
Jacob was very down at the hospital today every time we have to go there he seems to get very withdrawn not at all like his usual have a chat cheeky self .
We did get to catch up with Jacob. R. Who is looking wonderful and Thank God is going strong,also Stacy who finally will get to go back home next week and has finished treatment fingers crossed that things continue to go forward for them both we wish them and their families all the health and happiness.
Be good stay healthy


Saturday
Michelle and mandy (neighbours)have arranged today for the kids to have thier photo's taken
thank you Michelle,Paul and mandy for your kindness yet again x x x x

Remember our Aussie and Kiwi Diggers on Monday 25th April
have a Safe ANZAC day Holiday Give thanks that we live in the best country in the world
couldn't find an ANZAC clipart ;-(

Friday, April 15, 2005 2:35 AM CDT

Hi everyone. You will never Guess where we all have been for the last ten days ;-) ;-)
Yep Disneyland California U.S.A

Our Jacob had been give a trip to Disneyland when he first relapsed from a Brisbane company (who wishes to remain anonymous) he of cause wasn’t able to take it then as he was busy doing the work up for his transplant. The holiday was booked for after his 100-day clearance (which we all know didn’t come ;-( anyway it was decided we were going to do the trip now anyway.
His trip was booked in for the 10th of April we were to fly out to California. But there was a glitch in the planning .we received a frantic call on Friday (1st of April) that there had been a mistake in the hotel booking could we be ready to fly out Saturday (2nd) by 10am? (other wise we would have to wait three months) We thought it was an April fools day joke ;-) but it was serious. So Jon the kids and I all ran around like headless chooks to be packed and have all his meds up to date tell the doctors etc. Organize Kane up the road to feed the dogs cats and fish for us. Ring family so they wouldn’t worry that we had disappeared ;-) borrow bags from Paul and Michelle across the road and finally fell into bed about midnight and was up at the crack of Dawn to be at the airport. Jacinta’s James and Jonathon’s mate Ryan drove us there. We booked in with no trouble at all, caught the plane (on time) to Sydney. We waited at Sydney airport for 2 hours to catch the flight to L.A (that plane was also on time ;-). flew the 12 hours to L.A Jacob was wide awake the entire trip the Qantas crew were lovely (QF 11) at the end of the trip they gave Jake a Qantas watch a little radio also a bottle of Champaign for us (our first flight out of Australia ;-).
We has no trouble getting through customs (even had the guy laughing by the time we all got through ;-)
We were met at the airport by a lovely man named George who took us to the car that was to pick us up.
A huge black van pulled up a tiny lady named Belinda jumped out gave each of us a cuddle and a huge welcome to L..A. (what a wonderful way to be greeted ) we drove to the “Disneyland resort Hotel” were Belinda helped us book in (another no hassle) two of the rooms weren’t quiet ready but that wasn’t a problem as were all just crashed for a couple of hours in Jonathon and Jacinta’s room (everyone but Jake that is, he was still wide awake;-) while everyone else slept he and I explored the hotel and the shops (Disneyland’s main street) had something to eat and went back to the hotel by that time our rooms were ready too Jacob’s and Ryan’s room had a connecting door to Jon’s and mine. we were given Disney dressing gowns a Mickey mouse and a photo frame (lovely surprise) (thank you Carole) the kids when they finally woke up all went to “Disneyland”

Sunday
We all slept in pretty late today Jacob ordered himself room service (thought that was pretty cool ) after everyone else was dressed and fed off to Disneyland for the day ;-)
None of our mobile phones work over here so we kept losing each other which upset Jon and Jacinta (they are both worry warts) I knew Jake was fine he was with Jonathon and Ryan (I lost myself from the two worriers they were driving me nuts but for some reason they could always fine me!!!! A couple of hours later we found the “lost Boys” who were having the time of their lives ( they all received a huge lecture from Jacinta and Jon) I knew they weren’t lost (they were somewhere in Disneyland!)the kids all went on the rides Jacob has so much energy we can’t keep up with him ;-) ;-) ;-)

Monday
Another full day at Disneyland.;-) The kids think it so cool Jacob gets priority treatment on most of the rides so they don’t have to line up for ever to get on them.;-) Jacinta was really wrapped to see the Drummer from blink 182 there with his kids (she wasn’t happy with me when I said they couldn’t go up to him .poor bloke was trying to have a day out with his family;-)
Tuesday
Belinda picked us up today to hit the shops (made Jon and Jacinta very happy shopaholics ;-) first we visited china town the kids went nuts there Ryan and Jacob brought beautiful black jackets with dragons on them Jacinta got a blue silky dress (looks gorgeous on her) I had to ban Jonathon from buying fire works ;-(
Then off to a place called the “ally’ (bargain shoppers paradise) Jon and Jacinta disappeared for hours we lost the boys also Jacob and I had a look through the shops Jacob found this really cool remote control formula 1 car it was huge he was determent to get it (I didn’t know how we were going to get it home) Belinda talked the sales person down, so he got it for a bargain price and was one very very happy boy..
Finally we were able to drag Jon and the kids away from the shops loaded down with bags and boxes (lucky Belinda has a huge van)..then off to a late lunch at the “hard rock café” the perportions of food were huge for desert Carole had told Jacinta to order the ice cream sunday (can’t remember what it’s called) any way when it came out we all nearly fell over it was humungus it took all seven of us to eat one (Jake had ordered one for himself he had no hope getting through it ;-) after lunch we did the tourst stuff like looking at the stars homes The kids had their photo taken in front of Ozzie osbournes house they got a huge kick out of that ;-) (Jon and I were worried we would be told off)
We did the walk of fame looked at the stars Jacob was wrapped when he found “Bruce Lee’s” they stepped people footprints etc we went to the wax museum and the Guinness book of records place
We finally got back to our hotel at 10pm I don’t know where these kids get there energy from Jon and I are ready to drop
Wednesday
Today we decided it was to be a veg day ;-)
But Jake and the kids had other ideas ;-( (I’m too old for all this excitement) so off to Disneyland we all went again this time we cheated and caught the monorail (it takes you right into the park ;-) Jacob was determent to get a photo with “Goofy” (his favourite) we kept missing him or he would leave just as Jacob was to have his turn anyway Jon asked one of the character minders when Goofy would be out as Jake keeps missing him the guy went off and came back told Jake to wait where he was as he had a surprise for him.. Goofy came out and took Jacob for a ride on the rollercoaster with him he had his photo taken and signed his book Jacob was one very happy chappy
Tonight Jon took the kids for tea at a Japanese restaurant (One of Jacob’s favourite foods) while I had a very long soak in the bath and put my poor old feet up ;-) Jacob was very disgusted in Jacinta, She ordered chicken nuggets and chips (I don’t eat fish she said)
Thursday
This morning we all went to “Goofy’s Kitchen” for breakfast unfortunately Jacinta and I were feeling a little seedy so we weren’t able to appreciate the food as much. Jacob and the boys had heaps to eat during breakfast different character’s come into the restaurant and put on a show it was fantastic the kids had a ball
All are acting like little kids nothing seems to be “uncool” here
After Breakfast Belinda picked us up to take us to “sea world” the drive there was surprising as I don’t think any of us expected the scenery to be so beautiful and green once you got out of the city
Sea world was amazing we couldn’t wait to see the Orca whales they were as magnificent in real life as they are on the telly. we could of just spent the day watching them.. there was so much to see and we didn’t get to see it all I loved the Baluca whales Jonathon the penguins Jacinta of cause the dolphins they had a species of dolphin there that we don’t have here in Aussie they were black and white ( I can’t remember what they are called ) they were gorgeous Ryan the rides (of cause) Jacob just loved it all especially the Orca show .

Friday
Today we visited a shop called “build a bear” you pick a bear dog or what ever and you get to put a sound in it then you help stuff it and put a heart inside (after you have to rub it on your own heart and tummy, kiss it and make a wish very cute). Then you give your bear a air bath brush it and dress it up if you want jacob chose a boarder collie dog, he dressed it in a soccer uniform along with boots, shin pads, hat and sunnies. it’s soooo cute you even get a birth certificate that comes with them (wonderful idea) Jacinta and I also made ourselves a bear each ;-)
We then spent the rest of the day at California land (theme park across from Disneyland)
This evening we went to “the medieval restaurant” where Jacob was Knighted now sir Jacob. The kids Jon and I had the most wonderful time the show was brilliant as was the food Jonathon received a scroll and had his name announce during the show (his birthday is this week). They were all so hyped up after the show I didn’t think they were ever going to go to sleep ;-)
Saturday
Today we went back to china town and the ally on our way to Venice Beach . Venice beach was wonderful noisy but colourful Jonathon saw a bloke with a sign that said “ will work for marijuana “ he thought that was hilarious and had to have his photo taken with him (he turned out too be a lovely person) another Guy had a sign and was singing (“ jingle bell jingle bells help me get drunk”) all my kids have the sickest sense of humor ,we see all theses amazing sights and they think these two blokes were fantastic…. I found this wonderful Indian shop that sold the most beautiful American native Indian jewelry clothing music and paintings my sister Leonie would of gone nuts in there and come out very broke ;-) The boys love it too
Jacinta and I had a good perve at the men working out in the out door gym (little eye candy for us ;-)
On the way home we stopped at the “getty’s museum “ what an amazing piece of architecture that place is
Unfortunately we were there on the coldest windiest night that had had in ages and froze so we weren’t able to see everything as Jacob finally gave in a wanted to go home to sleep.
Sunday
Another busy day we went back to the build a bear shop jacob built a Koala for belinda to say thank you for being so nice and showing us around the big kids went for a swim Jacob has a cough so he wasn’t allowed to.
We had to buy two new suit cases to get all our junk home…
We ordered Dominos pizza tonight (had to explain what a meat lovers pizza was) Jacob like extra bbq sauce on his pizza. So we asked for extra bbq sauce, when it arrived they had put 6 small containers in the box with bbq sauce in them! Jacob thought this was extremely funny ;-)
Monday
Spent today at Disneyland and California land again today Jacob’s not as energetic today and has a cold other then that he is still having a ball. He went on most of the rides with Jon and the kids.
Tuesday flying home today
We fly out tonight at 10.30pm so we are off to Universal studios for the day
The kids had a wonderful time Jonathon and Ryan (who both are now grounded for life) conned me into going on the Jurassic park ride assuring me it wasn’t a fast ride (said nothing about scary) so blissfully unaware I jumped on this boat ride not noticing the smirks between the three boys the ride started off fine a few scares from dinosaurs jumping out but then we started to climb and climb into a dark tunnel by this time the boys were almost wetting themselves trying not to laugh, at the end of this tunnel was an almost vertical drop into the water!! After I nearly burst Jon’s ear drums with my screams on the way down.. they jumped out very quickly as I was going to kill the lot of them ;-) Jon of cause had to buy the photo (not a flattering one of me screaming )the kids love it (I wonder Why !)
We were all very exhausted after today so instead of going out for tea we asked Belinda to take us to the air port as we had more junk to pack . we had no trouble again with booking in (we were worried that we would have excess baggage got through customs no problem found our departure lounge and were on the plane on time and off home
While we were in the air we crossed the time zones so that meant poor Jonathon only had an hour to turn 19
As we get home Australia time on Thursday so we miss Wednesday (13th)
happy Birthday for the 2nd samantha 7th poppy leo 13th our jonathon
Be good stay healthy

Wednesday, March 30, Thursdau 31march2005 11:11 PM CST

Bejay
30th March 2005
Happy Birthday PaRon, we hope you had a wonderful day sorry we can’t be down there to help you celebrate
Be good party hard ;-)
Jacob had a wonderful day today (another pain free day) he walked up the road to a friends house for a while (wouldn’t let Jon or I come) he is fighting with every ounce of his being he isn’t giving up yet ;-)
Be good stay healthy

31st march 2005
We have received some sad news today. Jacob C’s mum rang today to tell us that her Jacob has had some devastating news his cancer has returned. There is nothing more the doctors can do for him
Please keep Beth, Jacob and his family in your prayers may they have the strength to face the next weeks and months.
www.caringbridge.org/me/jacobc
Be good. stay healthy. Pray hard for both Jacob’s to have a Miracle

1st April 2005
today marks the 1 year of little Jarryd (george) Brady’s passing. Jarryd was 4 years old and had the most beautiful eyes. Jarryd was in the room next to Jacob at the Mater for a long time Jake and Jarryd would colour in he loved to cut pictures out of cars. Please take a minute today to remember him, his Mum Nicole Dad Greg sisters Michala and Samantha nana Frankie and steve
Today is Jarryds Mums birthday
Today also would have been Little Leo’s 9th birthday
Fly high in heaven Jarryd and Leo we send you all our love we miss you.

Friday, March 25, 2005 3:46 PM CST

Friday 23rd March 2005
Good Friday.
Jacob was invited to the new “Nova”106.9 fm radio station today to meet “Carl Barron” he is Jacob, Ryan’s and Jonathon’s favourite Aussie comedian. Jacob was so nervous and excited on the way to the city.( he was worried he would go all shy and not be able to say anything).
We met my niece Jade and Douglas my brother John, Jonathon’s mates Ryan and Brad ,Melinda, Marree Gerard, Jordan, Jacinta and James in front of the station everyone was so excited. Jon was told again to be on his best behavior (no telling Jokes or trying to be funny ;-). We were taken up stairs by Kelli and Kellie (both woman had the same name) and shown around. At the moment “nova is in the middle of setting up their new premises so it wasn’t very flash but we were made to feel welcome. We weren’t there long before “Carl” arrived. I was worried he would think we expected him to perform. He was introduced to Jake (who went all shy,) he just sat in the bean bag and chatted, at first it was a little stiff (every one wondering what to say). It wasn’t long before we were just chatting away about nothing in particular he is a very nice guy and naturally funny without trying. (even laughed at some of the dumb things we were saying ;-)Jon was very well behaved our Ryan on the other hand was the one that came out with some “foot and mouth stuff” I was mortified when he asked a question that came out sounding so wrong and was almost an insult (it wasn’t meant to be, he was so nervous that he kept saying the wrong things).”Carl took it in the way it was meant and wasn’t offended (I hope ;-)). Jacob sat there the whole time with the biggest grin on his face, he was so over awed he was just beaming and so shy (not like him at all). We stayed there for nearly two hours (it was suppose to only be 1 as “Carl had to catch his flight back to Sydney).
We had no Idea that he had flown up just for the afternoon to see Jacob. He had asked for no publicity (that’s way I couldn’t say where we were meeting him) How amazing is that.
One of the Kelli’s had lost her mum to A.M.L a few years ago it must of taken a lot of courage for her to stay so up beat after she found out Jake has the same leukaemia .She did her mum proud ;-)
Thank you “Nova”106.9fm Kelly, Kelly and Peter Carl Barron and especially Carole. Jake had the most wonderful time we will be forever grateful x x x x
After meeting Carl Barron we all decided to go to southbank for coffee and to check out the markets, Jacob and Ryan both got Tattoos (not real one’s ;-)) Jake has the Chinese symbol for horse and a eagle Ryan has the symbol for tiger. We had some lunch Hooky noodles for Jake again. Poor Ryan forgot it was Good Friday and brought a steak pie (which he had to throw in the bin before he had a bite)
While we were at the markets Jacob had a Chinese massage his back is so out of alignment because he has spent the last month or so hunched over because of the pain in his stomach. The masseuse was amazing she didn’t speak English but knew exactly were his problems were (we hadn’t mentioned leukaemia at all) she explained the best we could understand, she was spot on every time. Jacob was so relaxed after the massage and had heaps of energy all the rest of the afternoon. I don’t know or care what the Dr. at the hospital will say about it but he is going back next week to have another one, he slept so soundly all night first time in ages he has looked relaxed and not curled up in a ball clutching his pillow around his stomach and needed hot packs all night..(Thank God for people with magic hands ;-)
We hope every one had a wonderful Good Friday. Be good. Stay healthy





Saturday 26th march
We spent the day at my sister Leonie’s today Marree and Gerard go back to Wagga Wagga tomorrow
Most of Leonie’s kids were there (she has 6) except Kye who is almost due to have her baby (2 more weeks to go ;-)
Leonie had a camp fire in her yard so Jake could cook his prawns and sausages over it. (Something he never gets to do at home) it was nice sitting by the fire and chatting. Leonie’s two grand kids were there also, Lakota is 2 and Shae is almost 8 Jacob loves playing with the little ones. He and Lakota did some drawing it was nice to see him being silly with her.
Morgan played some tunes on his guitar while the rest of us just vegged for a while.
Be good stay healthy

Sunday 27th march 2005
We drove to Nanagi for the bike rally unfortunately by the time we got there they had left for a ride Jake still got to sit on one of the old “Indian “bikes..;-)
So we decided to drop into Blackbutt to see Kye and her kids and spent the afternoon with them, Jake and Ryan had fun wheeling Bailey and Ebony around in Jake’s chair. Jake even kicked the ball for a while with Bailey.
It turned into a lovely day with the drive into the country out of the rat race for a while.;-)
Be good .stay healthy ;-)


Monday 28th march 2005
Today was a veg day we ;-)
Marree Gerard and Jordan made it home safe and sound today ;-)
Be. Good stay healthy.

Tuesday 29th march 20005
We had to be at the hospital at 9am this morning for bloods and Jake’s check up. Every thing so far is fine all his counts are still good the new pain meds are working well also.
I told the Dr. today how unimpressed I was that they had let Jacob be in so much pain all these months when all they had to do was up his meds. She said they didn’t know if he had G.V.H or not and I asked what that had to do with him being bent over in pain for months!!! She apologized but still it hasn’t resolved in my head anyway why they would let him suffer. she said that Jacob never complains so they weren’t aware of how much pain he was in….(am I insane or would a kid walking doubled over who can’t stand to have his stomach touch and sleeps all the time wouldn’t that indicate pain????.
We then had to wait over an hour at pharmacy for his meds (we didn’t get the important ones we needed so Jon has to go back this afternoon) not happy Jan!!. I’m starting to really resent the time they are wasting at the hospital and don’t seem to have any patience with them at all (getting old and crotchety ;-(
Still praying for Jacob’s miracle.
be good.stay healthy

Wednesday, March 23, 2005 7:12 AM CST

Sunday 20th March 2005
My sister Marree. Gerard and nephew Jordan arrived safe and sound today they are staying at our house for a few days. It has been lovely catching up.
Jacob has been feeling lousy and is walking around hunched over the pain meds are not getting on top of his pain. He is very sleepy.
I had a lovely phone call today from one of the other Jacob’s mums (at the royal there are four Jacob’s our Jacob is the oldest.) she rang to see how Jacob is, and to send us prayers from her church (for this we will always be grateful, we need all the prayers and positive energy we can)
Her Jacob is doing well and has finished treatment we hope and pray he continues to beat the odds.
She did have some sad news though little Dylan and Jessie really need some special prayers and positive energy sent their way they both have had news similar to ours. Our heart go out to them both and their families. Cancer sux
Be good stay healthy

Monday 21st march 2005
Jon rang the hospital today for the results of the Ultra sound (we had a sleepless weekend worried) it
Turns out the problem was, they couldn’t find his “Gall Bladder”! (it was removed in October 2004)
The results from his L.P and B.M.A were in also they are not the results we were praying for we are all totally devastated even though we knew that they wouldn’t be better as the doctors had refused to do any thing for him. We have to see Dr Little tomorrow morning. We went to the mall for a while today jacob’s not feeling well his stomach is giving him heaps of trouble .
Be good stay healthy.

Tuesday 22nd march 2005
We had to be at the hospital by 9am. The news isn’t good. The leukaemia has increased and is also in his blood stream now (of cause it would of spread like that, he has AML it’s fast moving and aggressive) the doctor acted as if this surprised her. Jon and I both looked at each other and couldn’t believe what she was saying we had told them it would spread if they did nothing but who are we to know anything? So she thought they might give oral chemo a go it wont cure him but it MIGHT slow the progression a little but it might not as there isn’t enough research into AML so they don’t know. he has also started on steroids. they might help his stomach. and finally they have decided that he is in to much pain and he isn’t getting enough pain relief so have doubled his oxycodine and he now has a fentanal patch to wear 24/7 we Have Been telling them this for weeks and weeks and have been ignored now that they have given up on him they are all concerned about keeping him comfortable. the palliative care nurse was talking to us today she kept saying “Kids like these” in my head I’m thinking kids like what? Then I realized she was talking about kids that are going to die! For the life of me I can’t think of our Jacob that way I know what we have been told but I don’t want some nurse I don’t Know telling me all this information while I’m standing in the day unit with other families sitting there as well .What ever happened to privacy??? Jill(transplant coordinator) has also all of a sudden started sitting in on our appointments (she was always to busy before) every time we are there now the social workers and councilors are there too wanting to sit in on our Dr. meetings like a bunch of vultures circling over head waiting for one of us to fall.. Where were all these people when he was doing well or in Transplant??? Thank you Leonie for allowing me to have a cry tonight I love you
Ok from now on I’m really going to try hard not to use Jacob’s page to vent my anger at the leukaemia and the doctors this is his page not a soap box ;-)
After the hospital this morning Jacob was feeling a little better so we all went to “Kingston race way so Jordan and Ryan could have a go on the carts Jacob said he wasn’t feeling up to it as he was having stomach and shoulder pain. he wanted to watch the boys though. Ryan and Jordan had a ball on the race track being the start of the week and not school holidays they had the track to themselves. We have changed Jordan’s name to the “donut king” he keep spinning out (I think deliberately) he had some pretty spectacular prangs ;-) Ryan and Jordan both had a go on the bucking horse it was hilarious (Ryan has some bruises on his back & Jordan isn’t walking very well ) Jacob challenged his Aunty Marree to a gun game (Jake won )Marree cant shoot even when she cheated ;-) Jacob won a really cute stuffed monkey ;-)
It was so lovely hearing him laugh.
We had to go to the hospital again in the afternoon to pick up some more meds and feed tubes.
When we pulled up Annette. (one of Jake’s fav nurses from the mater). was there .it was wonderful to see her ,she gave both Jake and I a hug (only the nurses from the Mater hug ;-) she is working at the royal now (not nursing but in the research department) Annette was the nurses at the mater who gave Jacob the bag of chuppa chups and lollies when he couldn’t eat while he had mucasitis when he was first diagnosed (2003)
Be good stay healthy. call for more research into AML it’s five to ten years behind the research into The ALL”s (the doctor told us that today)


Wednesday 22nd 2005
Jacob had to go to QML to have his bloods done this morning (pathology) The ladies there had Easter eggs for him (very sweet of them). He was very chatty and more like his usual out going self today. (I haven’t seen that side of him since we left the mater).
We had planned to go to Stradbroke island today to go fishing but decided to drive up to the gold coast instead and look at the art union homes (one of Jacob’s favourite thing to do. I know strange kid ;-) after looking at the houses and buying tickets (fingers crossed) we went to burlieigh heads so Jake could fish the boys went swimming while Jake and Jon were to fish (Jon forgot the rods) (he is soo blonde sometimes) Jake’s Uncle Gerard saved the day (he brought Jacob a new fishing rod. he is soo spoilt ) (Gerard and Marree are Jacob’s God parents so I suppose it’s OK ;-) we had tea on the beach front. It was wonderful today to see jake pain free he even walked down to the water he was his old cheeky self the pain meds he is on are working Thank GOD
be good stay healthy

Saturday, March 19, 2005 6:45 AM CST

Saturday 19th March 2005
My Brother John flew up from Lockhart (small country town in NSW) to visit, Leonie and Don brought him over for the day it was great to see him .he is up for the week and is taking the three boys to the classic bike show at kilcoy Easter weekend. like all boys my three love cars and bikes ,John being a big kid himself is really looking forward to it. ;-)
Jade and Douglas visited again today (to see their Uncle John) They gave Jake a beautiful eagle poster eagles are Jake’s favourite birds (I thought Leonie was going to pinch it as eagles are her favourites as well);-)
Jon had every one doing odd jobs around the house again (he has been in a frenzy doing all the jobs around the house I have been nagging to have done for years)
My sister Marree and brother in law Gerard are driving up from Wagga Wagga (NSW) and will be here tomorrow for a visit too it will be nice to see them we are in for a very busy week.
Jacob has been invited to a local radio station on Good Friday to meet his Favourite Aussie Comedian
(sorry can’t say who or where yet ) I’m not sure who’s more excited Jon or Jake ;-) Jon is under strict instructions not to embarrass the boys in any way shape or form he is to be on his best behavior (sounds like the lectures I use to give when the kids were little ;-) Thanks Carole
Our Jonathon witnessed a fatal car accident last night and had to stop to help and to ring for a ambulance
Some poor family has to hear the worst possible news, I know being a Mum of kids that drive how much we worry when they are out in their cars. Our hearts and prayers go out to them. Jonathon was very shook up when he came home to tell us. Iam so proud of him and his mates Ryan Brad and Malinda for stopping to give assistance they held people’s hands talked to them and did as much as they could before help arrived
It just proves that not all teenagers are trouble. (we have been so lucky with ours and I thank God everyday they are who they are ) (even when they drive me crazy) ;-)
Be good life is precious

Wednesday, March 16, 2005 6:35 AM CST

16th March 2005
Prayers and positive thought for James’s Dad, he was rushed to hospital today (James is Jacinta’s boyfriend) we hope and pray he is Ok and can come home soon.
Also special thoughts and prayers for Amanda she has a nasty bug in her central line and has to have it out tomorrow.
Please keep Jacob in your thoughts tomorrow also he has his L.P and B.M.A. we are hoping and praying for a miracle please pray his leukaemia has not spread that the G.V.H has turned into G.V.L .
Thank you every one for your kind messages, emails and phone calls etc sorry I haven’t answered I will get my act together and answer soon
Be good stay healthy
Happy St Patrick day tomorrow to all our Irish friends be happy stay green ;-) ;-)
Pray Hard
Thursday 17th march 2005
Happy ST Pats day
Jake had his b.m.a. and l.p today the results should be in early next week.
He seem to not be tolerating the anesthetics he has been coming out of them very aggravated and restless
He also has lost more weight 46.2kg so is now on gastric nasal feeds hopefully that will slow his weight loss his blood counts are still pretty good.
He was able to catch up with Amanda on banksia ward and gave her the toy cow he won at the speed way(Amanda lives on a farm and loves cow’s)
Dr Margaret has booked Jake in for an ultra sound on his stomach tomorrow. It has been giving him more trouble.
James’s Dad is still in hospital James said he is doing Ok and may be home on the weekend.
Be good stay healthy pray for Jacob’s miracle


Friday 18th March 2005
Jacob had to be at the hospital for his Ultra sound at 10.15am he had a rough night with his stomach again
He was in a fair amount of pain today it didn’t help with the ultra sound probe pushing against his stomach.We don’t have the results of the Ultra sound yet. we think they may of found something, as the technician had another doctor to come in to have a look neither said any thing to us (during the whole exam) and just walked out and left us sitting there like stunned mullets Jon went to reception to ask if they had finished with Jake and they said we could go. why do people with no people skills work in a children’s hospital???
Jacinta .James, Ryan ,Kelly and Jacob all went ten pin bowling tonight. Jacob came home very happy he said they all had fun. (He has been very down the last few days, which is nothing like him at all).
He told me today he didn’t think he was going to make it he is still fighting but thinks he wont make it.
It broke my heart. He should be out playing soccer with his mates not thinking dying ( life sucks big time sometimes….) he has been amazingly strong these past 16months and I think it’s wearing him down.
Be good stay healthy. Give your kids and extra big cuddle tonight

Friday, March 11, 2005 6:19 AM CST

11th march 2005
Shave for a cure day
Group training Australia Brisbane had their annual “shave for a cure” and breakfast today. Every year they raise thousands of dollars for the leukaemia foundation. This year Jacob was well enough to go. he shaved Jon and Ryan’s heads Jacinta and I were to chicken to have our heads shaved so we had ours colored.
Thank you every one for making us so welcome and for your fund raising for the Leukemia foundation.
Jonathon’s boss James “Skerl group Pty”and work mates all had their heads shaven at “Holland park school” on Thursday, They raised over $2000.00
Our Jonathon and Ryan are both very particular about their hair I was extremely proud of them both for going Bald ;-) (You wouldn’t believe the amount of hair that came off them both ;-) ;-)
Congratulations to Lesley “from Rabbit photo’s at Capalaba park” raised over $1000.00 to have her beautiful head of red hair shaved it must of taken a lot of courage for her to have her head shaved
She said to me that she chose to have her head shaved Kids like Jacob had no choice Lesley you are amazing. ;-) ;-)
Kerrie Mcketrick in Tasmania also had her head shaved today. Kerrie lost her boy Daniel last march with a rare bone cancer, it just proves to me once again how caring she is and it shows what a wonderful mother she is, as Daniel was as selfless as she.
Well done every one. those of us who have been touched by leukaemia thank you. every bit that goes towards research stops another family hopefully from loosing a child, parent ,family member or friend
Be good stay healthy






13th March 2004
we had a lovely visit today from jade and Douglas it was wonderful to see them both. poor Douglas was roped into helping jon with some jobs around the house ;-)
Jacob’s doing fine he has lost some weight his stomach is still giving him a lot of pain.
He has his B.M.A and L.P on Thursday we are hoping and praying for a miracle..
We would like to thank all the prayer groups that are saying prayers for our Jacob . we believe in miracles
Be good stay healthy please keep Jake in your prayers

Jacob Douglas jade and ryan

Tuesday, March 8, 2005 6:40 AM CST

9th march 2005
Please take a few minutes today to remember Daniel Mcketrick. One year today Daniel earned his angel wings. Daniel put up a huge fight with a rare bone cancer, he was a keen skateboarder and a wonderful kid Daniel would came and visit Jake in the hospital when he was first sick and couldn’t get out of bed he Ryan and Jake would talk about what ever it is that boys talk about or play the play station while his mum Kerrie and I would have a cuppa. When jacob had to have his granulite infusion (we had to have a call out for donors) Daniel wanted to donate some to Jacob (even though Daniel had none of his own) Both Jake and Ryan were devastated when Daniel passed and we remember him fondly and with love

Please support shave for a cure day 10th march to the 12th

Sunday, March 6, 2005 0:55 AM CST

Thursday 3rd march 2005
Sea world
We were picked up in style today for our trip to sea word. “Golden gate Limousines” arrived at our house at 9am in a beautiful white stretch limo.(the driver “Chris” was better dressed then we were ;-).
Jacob was very impressed with the drive there. The kids got a kick out of the look on people’s faces as we pulled up. They must have been so disappointed when it was just us getting out (not anyone rich or famous;-).
Jacob was picked out of the crowd at the dolphin show to pat a dolphin named “scooter” he had the biggest smile on his face (every time we have been to sea world he had hoped to be picked). Jacinta was sooo jealous (she has collected any thing with dolphin on since she was about 8)
Jacob had a booking to do a dolphin meet at lunchtime. he was really looking forward to .we met the trainer at the gate he took us to the pool where there was two dolphins the one Jacob got to meets name is “Bala” he is 10 year old bottle nose dolphin, they spent about ½ an hour in the water Jake was able to stroke him all over. the trainer showed Jacob how to get “Bala” to do a few tricks for him Jake said that you could feel how strong they are yet they are so gentle .he came out of the water laughing and was is high spirits all day.
(Jacinta is even more jealous)
We had lunch in the restaurant. Jacob didn’t eat his stomach plays up when he eats so he is off his food ;-(
Jonathon and Ryan went on the rides while we went into shark bay to watch the fish and sharks swimming
We stayed in there for ages they are so relaxing to watch (well not the sharks they are just freaky).
Before we went home Jacinta and Jake went on one of the rides.
We also drove home in style with “Chris” our driver ;-)
Be good stay healthy.
* * * * * *
Friday 4Th march 2005
First airplane trip
We had to be up before the crack of dawn to be at the airport to catch our flight to Sydney. Michelle our neighbour drove Myself Jacinta and Jake to the airport (we all couldn’t fit into our car) it was so good of her as it meant she would be at work an hour early.. Jon and Jacinta are the only ones in our family that have flown before, none of the kids were nervous at all I on the other hand was ready to turn around and go back home ;-) We flew with “Virgin Blue”. Jacob was so excited when we were to be the first people on the plane. (When I saw how thin the walls of the plane are I almost really turned around and went home) The kids all had a great time teasing their poor old mum. (any one want some new kids slightly uses going cheap? ;-) we sat in row 5 Jacob had great pleasure in telling every thing we were passing as we were taxiing down the run way (I wasn’t looking most of the way) the kids and Jon had great pleasure in my discomfort I think I was there in flight entertainment. All to soon it was time to land (much preferred that then taking off ;-)
We caught a cab to our Hotel. “Hotel Unilodge Sydney” they are lovely people that work there. After a catnap we walked to the powerhouse museum to see the “lord of the rings” exhibit The kids were all very impressed with it especially Jake and Ryan as they are both huge fans of the movies. We were unable to take photos in there (bummer). Jake brought himself a print of the “Shire” in a lovely frame, and a jigsaw puzzle book.
We had tea in a lovely Moroccan restaurant at “Darling harbor” The food was wonderful as was the atmosphere.
Saturday 5Th
Today we caught a bus to “circular quay” to catch a ferry to Taronga zoo we spent all day there Jacob got to feed a Giraffe it slobbered all over him (suppose to be very good luck to be slobbered on by a Giraffe)
The tigers were magnificent one of the tigers was rubbing itself on the glass right next to the kids (tigers are Ryan’s favorite animals)
We had to catch the 5 o’clock ferry back as we had to be at the airport by 7pm so we ran out of time and didn’t get to go to the Aquarium
We flew home with Quanta’s and had seat right over the wings. Jacob thought that was so cool as he could watch the wing flaps move.( he gave me another blow by blow description I could of done with out) no sooner were we in the air and Jacob was sound asleep we had to wake him to get off the plane ;-)
Friday 6th
Jon Jacob, Ryan Jacinta, and Jonathan have all gone yachting with camp quality today.

Wednesday, March 2, 2005 5:07 AM CST

Wednesday 2nd March 2005
Jake’s had a couple of rough day’s his stomach has been playing up and he has been in pain.
Tuesday evening we finally had a call from the doctors about the biopsy results (stomach)
They didn’t find any G.V.H (graft verses host ) they are still not going to reduce his cyclosporin
Reducing the cyclosporin could cause him to have more G.V.H which also could result in G.V.L
(Graft verses leukaemia) meaning his new marrow will recognize the leukaemia cells and fight them (that is what an normal healthy bone marrow will do) they also will not consider maintenance chemo That they give A.L.L and A.P.L kids they don’t give maintenance chemo for A.M.L (adults but not kids) they have decided to go ahead with the intrathecal chemo to hopefully prevent the leukaemia taking off in his central nervous system ( where his leukaemia has started twice before though this time it’s in his marrow). He has lost another kilo and is down to 48kg the trouble is his stomach hurts so much he can’t eat, and the foods he is craving he can’t have. he loves his salads, mushrooms and veggies everything he can eat has to be really cooked so they have no taste to him and he misses his crunchy veggies like carrots, celery etc. (ever feel like hitting your head against a brick wall???)
It was lovely to see little Jackson in the day unit today he is looking so well. ;-) Keep your finger’s toes crossed send positive energy and prayers his way .100 days for Jackson next week ;-) ;-) Jackson’s page

We took our car in for a service this week (same place we have been going for years) the blokes there know Jon and the boys (all boys love cars) the blokes in the service area gave Jake a “Holden hat”` and a model car. It was so sweet of them. (thank you Holden Capalaba)

Tomorrow we are off to sea world in style (limo) Jacob and Jacinta are going to swim with the dolphin’s (we are hoping and praying he has a good day stomach wise)( we have new meds for that )Thank you Carole ;-)
Friday we are flying to Sydney. There is a Lord of the rings display at the powerhouse museum (Jacob’s make a wish was to go to new Zealand to see the snow and do the “lord of the rings tour )this will probably be the closes he will get to it .we are also hoping if he is up to it we will go to the zoo (we don’t have a proper zoo here

Saturday, February 26, 2005 3:17 AM CST

Saturday
Still no results from the stomach biopsy Dr promised to ring Friday but we aren’t really a priority.it’s been a week her excuse is the lab is short as two tec are on sick leave (crap)
Jacob slept most of the day today his stomach is playing up again so he had some stronger pain meds to help with that.
My sister Leonie brother in law Don and niece Teigen came over today Leonie has been a tower of strength for us talking to all the family so we wouldn’t have to go through it. Telling my parents was the thing I was dreading the most.

Thank you to my family for giving us space to get our heads around everything ,I know it’s been hard on you all not to come straight here.
Thank you every one for you emails and phone calls huge Thank you to Michelle and Paul for the cups of tea the chats and angels you are wonderful neighbors (even long before Jake was sick)
Carole for giving Jacinta and Jonathon time off work for all of your support for our whole family these last 16months and for all the other things you have done that we aren’t allowed to tell.you are an Angel here on earth
My three big Kids Jacinta Jonathon and Ryan where do you get your strength from?
My Jacob, my sunshine boy. you don’t have to be strong for us baby. kick scream rant and rave get mad, cause I’m not as strong as you all are and I’m letting you down I’m sorry
Jacob said to me last night that God has a plan and a reason for everything….
I don’t see the reason or what the plan is (please explain)

Thursday, February 24, 2005 3:52 AM CST

Sunday 20th February 2005
Jon and Jake had a dad and son day today they went shopping???? Jacob has finally found the Ying and yang pendant he has been looking for, for Ryan he has been wanting to get Ryan one( I/2 for both of them) to thank Ryan for everything he has done for him ;-)
;-) ;-) ;-)
* * * * *

Monday21st February 2005
We went for a drive to the coast today to have a look at the display home’s (one of Jacob’s hobbies )
Jonathon and Jacinta had the day off work so they tagged along too. After looking at the houses and Jacob picking the room he’s having if we win the lotto we went to tallabudgera the kids went for a swim.
Be good stay healthy

Tuesday 22nd February 2005
We had a veg day today Jake’s stomach has been playing up again



Wednesday 23rd February 2005
Today we should have been celebrating Jacob’s 100day’s post transplant..
The doctor’s told us on Friday that Jacob has relapsed in his bone marrow the 16/21 marker is back as well as a group of other chromosome abnormalities that his leukemia has..Jon and I feel like we have been kicked in the guts by a heard of elephants,The doctors wanted us to tell Jake on Friday but with him going to surgery we didn’t want to tell him in the end we decided that we were going to keep to our plan for Wednesday as he had been looking forward to his day.
We spent the day at the coast Jacob wanted to go bungie jumping we compromised and he went parasailing instead all four kids had a turn and thought it was fantastic we had lunch at the seafood place on the board walk (Jake had crab and prawns.) The kids and Jon talked me into going jet skiing, the kids took turns in dinking each other and Jon dinked me, all four of my kids are speed hogs and have no fear … I screamed the whole time. We saw a small pod of dolphins they came right up to the jet skis the kids were wrapped .it was a full moon also at one point it looked like the moon was touching the water it was so huge.the kids were to busy wave jumping to notice.;-)
Jake and Jonathon ended up in the drink jake was zig zagging and they lost it (freaked me out) Jake thought it was hilarious and couldn’t wait to fall off again ;-) ;-)
The people from “jet ski safari” were so lovely and “Ryan” who took us out really gave the kids a thrill ride (except they kept having to wait for us old folk) The kids can’t wait to be able to go again…;-) Thankyou for a wonderful day
Be good stay healthy
* * * * * * * *
Thursday 24th February 2005
We had to break the news to Jake today. We truly have the most remarkable son. After we told him his leukaemia was back and his transplant didn’t work he was very quiet. I asked him what he was thinking and he said “I’m shocked but it’s Ok,Do the kids know? Could you send them in so I can tell them”?
So he told the kids and then went down stairs and challenged Ryan to a game of pool. We had to be at the hospital at 2.30 to see the doctors and of course they wanted to tell Jake. The social workers were there also.
Jacob listened and asked a few questions and that was that. When we left the hospital he wanted to go to the pictures, he is so excepting of every thing the rest of us are total basket cases and he is as calm..
I wonder sometimes who is the adult ….
Thank you Leonie for making the hard phone calls to everyone for me( I love you )

Friday, February 18, 2005 7:48 PM CST

17 February 2005
G'DAY Every one I recieved this letter from some one very close to our family Belinda is a beautiful and lovely natured girl she needs your help please visit her page
love Jacob's mum

Hi I am a 19 year female from Australia. I’ve been suffering from a condition for the past 6 years. Called Jerk Nystagmus with symptoms of (Ocillopsia and decreased vision) I will explain it so it’s easy to understand. The nerves in my brain are twitching which are sending the wrong signals to the back of my eyes and there’s also something to do with the muscles of my eyes. Although I have 20/20 vision with my glasses. What I experience is vision that shakes 24/7 (Images jump sometimes and are jerky). In relation to this condition the external environment looks fake (like an illusion that the world looks cereal all the time. I go into a trance where I can’t focus I get disorientated, feel of balance, tired and every task is an effort. I can’t sleep at night because I get an annoying twitching sensation at the sides of my eyes.


I’ve seen 4 Specialists on a number of occasions last year. I had MRI scans, cat scans, seen a brain Neurologist, and have blood test, which were all clear. I have also been to see a Natropath (he discovered that one eye cramps up, which explains the cramps I get on one side of my forehead). The last two specialists trialed me on an epileptic medication which did not work. I cant be operated on, because its too dangerous. I have to preserver. If anyone knows anything about this please let me know. I just wont it to stop.

Thank you Belinda

saturday 19th february
jacob has spent the last couple of days in hospital for the biopsy on his stomach no results yet.he was released from hospital this morning feeling well.jacinta and james asked if he wanted to go gocarting at kingston so jon and I tagged along as well.jacinta and jake had a ball racing each other around the track (james went on the faster track for "big boy's") jake conned me into going down the slide with him he laughed at my screeming all the way down (you go preety fast on those things you know and I'm no spring chicken) Jon jake jacinta and james had a go at the bumper cars jacinta won herself a toy dolphin (she collects dolphins) poor james couldn't knock down the pins jacob won a cow and a spinning backet ball. he had an excellent day and couldn't wait to brag to Ryan and Jonathon when we got home (the boy's had spent the day at mates houses)
be good stay healthy give your kids a cuddle and hold on tight

wednesday February 16 2005 3:47 AM CST

Wednesday 16th February 2005
Day plus 92Physio today.
Jacob has had back pain from his L.P yesterday and his stomach was also giving him trouble so he only was able to go 20 minutes in the pool and 10minutes in the gym today.
He slept most of the drive home no news about his results; the doc did ring today. Jacob has to go into the hospital tomorrow afternoon to have the biopsy. Friday. He might be home that night if he is up to it
Fingers crossed happy positive thoughts and prayers these results are clear.
Be good stay healthy
* * * * * * *
Tuesday 15th February 2005
day plus 91
Jacob had his L.P, B.M.A Intragram and chemo today.
We also had our usual BMT clinic. Jacob’s lost some more weight (not good) the doctors have decided to do another biopsy this time in his stomach. ;-(..
All his blood counts were fine this week ;-) except his liver functions as they have gone up again.;-(.
Prayers for Jesse she is newly diagnosed. Positive energy her way
Extra prayers for Tammy’s family that they have the strength, to get through the next weeks.
Happy Birthday Our John party hard ;-)
Be good stay healthy
* * * * * * *
Sunday 13th February 2005
Day plus 90
Jacob has his L.P, B.M.A, intrathecal chemo and Intragram infusion on Tuesday
We are all a little nervous about this L.P and B.M.A as it will be his plus 90 day
We should have some of the results sometime during the week. I hate waiting around for the phone call from the doctor’s.
Once again I’m asking for positive energy ,happy thoughts and prayers for Jacob.
Pray his results are all clear and his donor marrow has taken off, that none of his bone marrow or leukaemia cells are hiding in his nervous system again.
Also prayers and positive thought for all the kids having their B.M.A L.P’s
* * * * * * * * * *
Monday
HAPPY VALENTINES DAY
Be good, be happy, be loved.

Thursday February 10, 2005 4:41 AM CST

Thursday 10th February 2005
Jacob and Ryan had their first experience at snorkeling today.
Ryan wagged his swimming carnival so we went off to sea world (we have a years pass) (thank you Camp Quality)
Jacob has been saving for his trip to New Zealand but decided to shout himself and Ryan a swim in “shark bay “
They had wonderful time Jake came out invigorated I haven’t seen him with so much energy for ages
The people running the “shark bay “swim were lovely there was a concern weather Jake would be allowed to swim (they were concerned he would get to tired) Ryan assured them he would be with him the whole time and one of the divers stayed near them as well.
It so brilliant he is finally able to do things he has missed out on these last months
Be good stay healthy
* * * * * * * * * * * *

Thursday, February 3rd-wednesday 9th 2005 5:40 AM CST

Day plus 80
Thursday 3rd February 2005
Jake had a terrific day with Amanda today they went to “extreme” played air hockey and on the prize machines (quiet funny watching them both play sitting in chairs.;- )
They were both pretty well worn out by the time we got home Jacob was almost asleep before we left the car park ;-)
Be good stay healthy .
* * * * * * * * * * * *
Day plus 83
Sunday 6th February 2005
Happy Birthday Marree and Bianca we hope you have a wonderful day.
* * * ************

Day plus 84
Monday 7 th February 2005
Jake had physio today with Yolande, Amanda also had hydrotherapy today so they shared the pool
(Mucking around more then anything ;-) Jacob always seems to have more energy after hydrotherapy
We had a few hours to kill before our next appointment.(4pm eye clinic) so we decided to go to the movies at south bank the only movie playing at the time that would get us out in time for his appointment was “Phantom of the opera” Jon and I enjoyed it Jake said he did too “but did they have to sing all the time? Couldn’t they sometimes talk!” ;-)
Eye clinic at (the royal) went Ok .good news the dark spot on his eye isn’t aspergillus ;-) ;-) but we have to go to the “Mater” to see John, Jake has cataracts. It means more surgery, it’s not as bad as when his retina detached though. we knew cataracts were a given with the aspergillus and the operation’s to cure that we had hoped it would be years down the track.. .We can count our blessings though he still has his eye, he may have limited vision still but that has a high possibility to be corrected with the cataract surgery.
Extra prayers for Tammy and her family (Tammy had her transplant just before Jacob’s and lived in the unit next to us at the leukaemia village) Tammy isn’t doing well she and her family have gone home prayers and thoughts their way please
Be good stay healthy.Thank God everyday your kids are healthy or are on the mend
* * * * * * *
Day plus 86
Wednesday 9th February 2005

Jake had early physio today and had to be at the hospital for bloods and BMT clinic.
The pathologies had trouble getting blood from (both) his arms, we had to go up to the day unit early so he could have bloods taken from his port.
Jake had a good session at physio with Yolande (she said she needs to rest after Jake’s sessions as he wears her out ;-) he will be having physio 3 times a week soon.
BMT clinic went well also with Dr Margaret Jake’s counts are all very good still.(liver count is still up but nothing serious) the Dr think it could be the cyclosporin and voriconazole reacting (not many kids have that combination of drugs) he is still having pains in his stomach. Jacob tried again to get some of his fav foods on his allowed list but Margaret wouldn’t budge. (he didn’t try to con Domino’s pizza today )he thought he might get away with Olives and Boost Juice (from the juice bar) and cabanas I think he is keeping them entertained by his food request as soon as he walks into the consulting room They say “NO” ;-) his weight has stabilized that means he wont have to go onto gastric nasal feeds again ;-)
Little Jackson was in the day unit today he hasn’t been well and spent a few days in. his hair has started to grow back, ( he wouldn’t let me take his photo today) he is going to be absolutely gorgeous with the dark hair ( he was as blonde as Jacob but with curls) Jacob said it’s not fair that Jackson didn’t get to be bald for long ;-) ;-) ;-) Jackson” page send pasitive energy and prayers his way.
Little Rhiannon ( they call her ‘Moo”) was also in today she is looking amazingly well and was all smiles as usual (Rhiannon’s 100 days are up on her 1st Birthday) photo of her with jake in his album page ;-)
Please remember to keep Tammy and Sarah in your prayers
Ryan’s school was dismissed early today (heat wave) he met us down at the hospital .while we were waiting for jacob’s meds I was humming (Phantom of the opera to myself (badly)) Ryan freaked when both Jake and I burst out singing ( I haven’t seen Ryan run so fast ;-) Of cause Jake being Jake chased him around singing (Ryan said we are both freaks) Poor kid didn’t know Jon had brought the sound track Guess what was on the car cd player all the way home ….
Be good stay healthy
* * * * * * * *

Wednesday, February 2, 2005 6:56 AM CST

Day plus 79
2nd February 2005

BMT clinic today. Jacob’s counts are all excellent ;-) (Thank God)
Still no known reason why Jacob’s liver counts jumped so high. There was a fatty deposit in his liver biopsy. The doctor said that happens sometimes after BMT. They don’t seem concerned at all,
With the pain from the wound site the doc said to give it another couple of days if it gets worse or changes in any way to ring the hospital..
We are meeting up with Amanda and Julie tomorrow they are down for Amanda’s check up. Almost 2 years post BMT for her.;-) ;-) We are going to show them around (they are not from Brisbane) Jake’s looking forward to seeing them again.(us too ;-)

Prayers positive thoughts and energy for Sarah she goes into Lockdown next week and has her BMT the following week keep her and her family in your thoughts and prayers. she has a long hard road to travel
Pray they all stay strong and healthy in the days to come.

Be good stay healthy. After the rain there IS a rainbow (believe) 0:-}

Monday, January 31, 2005 4:08 AM CST

31st January 2005
Day Plus 77
Dr Anthony rang tonight. Some of the results from Jacob’s Liver biopsy are in.
So far it has shown no G.V.H, V.O.D or aspergillis spores and best of all no Leukaemia cells. ;-) ;-) ;-)
His liver counts have dropped ;-) we will know on Wednesday of any other results.
Thursday Jake has an eye clinic appointment with John at the mater children’s to check his eye for aspergillis he has had a bruise like mark on the white part of the eye since transplant.
He has had a better day today and as slept most of it he still has some discomfort but it seems to be settling down ;-)
Hey Teigen good luck at the eye specialist on Wednesday we are all thinking of you. x x x x
Be good stay healthy ;-)

Thursday, January 27-sunday 30th 2005 6:58 AM CST

27th January 2005
Day Plus 73
Liver biopsy day
Jake had an appointment at banksia day unit to see Dr Anthony this morning before physio
Anthony seems to think his high liver function test are not an indication of VOD as we had been told on Tuesday, Anthony thinks the likelihood is that it’s GVH (graph verses host) either way the liver biopsy is the only way to know for sure..
The Doctors are trying hard to not put him on steroids because of the aspergillus. the steroids can make it flare up again.
Jake didn’t have to be at “surf” ward until 1pm so he was able to go to physio at 11am ( he was not happy about maybe having to miss physio)
He went down to surgery at 3.15 as usual was eager to have it over and done with The DR’s said they wishes all their patience were as easy as Jake. This time though he came out of the anaesthetic swearing like a trooper (so not like Jacob at all he has never come to like that before ) he usually wakes up and then curls up in a cocoon with the blankets or come out running (which can look really funny with him running while he is laying down ;-)
He was in a lot of pain, from the way he was I think it may have been worst then when he had his gall bladder out the incision is only about 2-3 cm . He is now on a phentanal infusion so he can manage his own pain meds as needed. he was pretty well settled by about 9.30 hopefully he will have a good night. Fingers cross that the biopsy results are fine and it’s nothing serious at all.
Be good stay healthy
PS I was talking to Jackson’s mum on the phone yesterday little Jackson is going forwards in leaps and bounds (thank God) ,Jackson
* * * * * * * *
28TH January 2005
day plus 7
Still in hospital
Jake was feeling very sore and sorry for himself this morning. he is still on the pain infusion
The Surgeon said because they had to cut through muscle would be the reason he is in more pain then when they took the gall bladder out. He doesn’t complain but you can see the look on his face and you know he is in pain,
He felt heaps better this afternoon, Ryan came to the hospital again after school Jacinta came up for awhile after work.
he spiked a couple of temps this evening (38.6) he is having blood cultures done ( they do them very differently on this ward then they do on Banksia.) The surgeon said he could have day leave tomorrow I’m not sure if he will be able to now. he will have to miss Ryan’s first game of the season ;-(
be good stay healthy
relised today this is jake's 12th operation.not counting Lp and BM
* * * * * * * * * * *
29th January 2005
Day plus 76
Still in Hospital
Jake is still in hospital. He had a better day pain wise and sat out on a chair for a while this morning NO temps today ;-)
Poor kids has had the hick- cups on and off all day (didn’t help the pain at all) and didn’t help with his mood either (not sunshine happy today)
Aunty Leonie and Uncle Don came up for a visit it was nice to see them both.
Jake had a surprise visitor this afternoon Kim (nurse from the Mater) popped in for a visit it was lovely to see her and catch up on all the gossip.
Hopefully he will be released tomorrow or Monday
Be good stay healthy
* * * * * * * * * * * * *
30th January 2005
Day plus 77
HOME
Jake was released from hospital at lunchtime today,
He still has some pain but we have pain meds for that, he goes back on Wednesday for BMT clinic they should have the results of the biopsy then. His liver counts were good the last three blood tests. The surgeon thinks maybe the high liver levels were due to medication.(?)
Jade and Douglas came down for a visit this afternoon it was lovely to catch up with them both.
Be good stay healthy
* * * * * * * * * * * * * * * * * * * * * * * *

Tuesday, January 25, 2005 5:06 AM CST

Tuesday 25th January 2005
Day plus 71
Dr Margaret rang this afternoon, Jacob blood count were all fine, except he has an elevated Liver count so we have to go to the hospital Tomorrow (Australia day.) to have more blood test one test is for clotting as he will have to have a biopsy done on his Liver Thursday.
The concern is he may have Veno-occlusive disease (VOD) this is the result of damage to the liver cells (another side effect of BMT) VOD is very serious if not treated early. The only way to know for sure is to have the biopsy.. He will have the Biopsy on Thursday or Friday the results can take a few days he will have to stay in hospital up to a week, they may decide to start him on IV steroids until the results are back .if it’s VOD he will be treated by IV steroids and then oral. (for as long as they are needed)
Please send positive energy happy thought and prayers his way.
Jacob as usual has taken the news in his low-key way. He isn’t impressed with having to go back to the hospital tomorrow as it’s Australia day and we had plans (should know by now never to make plans ;-(
He also isn’t impressed that he may have to miss out on Thursday’s hydrotherapy/Physio session. He enjoyed today’s session with Carly she worked his little butt off. Jacob was super fit before the leukaemia and has always enjoyed sports they finish there sessions with a game of water polo. ;-)
Have a wonderful AUSTRALIA day tomorrow everyone (Aussie Aussie Aussie oy oy oy ;-) ;-)
;-) (PROUD TO BE AUSTRALIAN) ;-)
* * * * * * * * * * * *

Sunday, January 23, 2005 6:46 AM CST

Day plus 68
we took jacob and ryan to the gold coast today to "snow world" it's a huge shed with everything made of ice.
The docs have said that it may be 9 to 12 months before jake can go on his "new Zealand trip" he has never seen the snow so we thought this would be a fun way to spend the day
jake and ryan said it was freezing in there.Both of the boys snuck up behind me with hands full of "snow" and mashed it all through my hair and down my back it was freezing! (both are now grounded for life) nah not really
be good stay healthy

Wednesday, January 19, 2005 5:51 AM CST

19th January 2004
Day plus 65
Early to Hospital today to have blood’s, Intragram infusion and BMT clinic.
Little Jackson and Emma were already there It was lovely to catch up. Little Jackson is looking so healthy
He was very chatty showing me his hair (almost all gone now. though the new hair is already growing back)
Being BMT clinic day we were able to catch up with Tammy,(she had her transplant just before Jake’s) Please put Tammy in your prayers and send positive thought her way .
Little Rhiannon as well she is looking healthy and was all smiles.
Jacob’s counts are still excellent ;-) the docs are very happy with him still ( still no “Domino’s” Pizza though) ;-( he is craving Domino’s. Home made just doesn’t make the cut ;-) He has lost a little weight, so has to start eating more. We are going to try more frequent smaller meals. he also is on a high fat diet (not good for Jon and I as we have both gained weight while he was in hospital.) ;-) lot’s of snacks like chocolate, chips, savory type things. all the stuff that we all like but try not to eat. “Cause it’s not healthy!”
We are trying to avoid having to use the nasal gastric feeds again as they upset his stomach and he doesn’t tolerate them well. Next month (19th Feb) is his second LP ,BM and first lot of intrathecal chemo.
 * * * *
LEO BOBBY KACHO
Little Leo’s service is on Saturday 22nd january at 11am.at "the tribe of Judah outreach centre
Queens road Kingston
cortege to "MT Gravatt cementery"
Donation in Leo's name to the royal children's foundation
Be good stay healthy.
* * * * * * * * * * * * * * * * * * * * * *
22nd January 2005
Jake Jon and I went to Little Leo’s service today.
I was a bit hesitant about Jake going as I thought it would be to hard on him (emotionally). Jake said he needed to go, he needed to say good bye.
The service was short but sweet Leo’s big sister “Lilly” gave a eulogy of Leo how it had been her honor to be allowed to choose his name when Leo was born. Leo mean’s strength and he was a strong boy. She told of the caring sweet boy how much he loved the younger kids and how much he loved school.
Leo’s baby sitter also spoke she said. “Leo had a smile that could light up a room and a temper that could clear one just as fast.” That was Leo in one sentence Jake, Jon and I had a laugh at that, as we had seen Leo “clear a room” and more times then not, saw the smile that could “light” up the room. Jack (Leo’s dad) spoke also in his quiet dignified way, he was amazingly strong today and did his baby boy proud.
We sat with Jenny (bob the builders mum.) and Candace, (nurse from the royal the one who thought Ryan was younger then Jake) It was nice to catch up with “Jenny” (though I wish the circumstances were happier.) she has this amazing ability to always make me laugh with stories about her two little one’s. we were so pleased to hear That Joseph, (bob) is doing so well and starts preschool next week. ;-) I don’t know if there is a teacher smart enough to keep up with Joseph I would love to be a fly on the wall when he goes to school ;-)
Jacob was so strong today he amazes me with his strength I was so proud of him when he walked up to Jack and gave him a cuddle and shook his hand. It’s been hard for Jacob to loose so many of the kids he has gotten close to. He handles it all so much better then we do. Kids seem to have this ability to just accept things maybe it’s because they have an unquestionable faith and trust.
Though we know heaven has welcomed a very special person….
Our Hearts still feel the sorrow.
Be good stay healthy.

Friday, January 14/17th, 2005 7:43 PM CST

14th January 2005
Sad news today
Leo recieved his angel wings this morning.
Look for the angel with the cheeky grin and mischievous eye’s
Leo was so full of energy and life it’s impossible to believe we will not be seeing him again in this life.
He will be happy in heaven no more being cooped up. he hated having to stay still and hospitals are not geared up for a child with as much life as Leo. he will have no boundaries now and can fly free and happy
We will miss you Leo we loved your energy your cheeky smile.
Our Hearts go out to his Dad “Jack” and his 4 brother’s and sister’s Jacks has brought up the five kids by himself and is a lovely man his faith is strong we pray and hope it’s strong enough to get him through this.

LEUKAEMIA SUX AML SUX

Jacob wants to say about Leo
Leo was a good kid to hang around
he was special and fought right to the end.
the other angels will have to watch it if they play cards with Leo cause he Deals the best cards for himself;-)
( good memory of the boy's playing Uno
in the day unit and in Jacob's room)
Photo Of Leo in JACOB'S PHOTO ALBUM PAGE
* * * * * * ** *
!7th January 2005
Day plus 63
Jacob had his hydrotherapy session this morning with Carly .she gave him a really good workout finishing the session with a game of water polo. Jake enjoys his workout in the pool and looks forward to going. We had to cancel his Wednesday physio as he has to have his intragram infusion that takes 4 hours he will be tired after being poked and prodded all morning
;-) Little Jackson was released from Hospital on Saturday it’s wonderful he is doing so well we are looking forward to seeing him and Emma in the day unit on Wednesday’s. Jackson”s page
Philip also is going in leaps and bounds. Philip has a rare and aggressive leukaemia (APL) he has started on “maintenance” fantastic news for him and his family. Philip and His Mum Evon would wave through the window at Jake when he was in Isolation and would bring him “Jelly beans” ;-) Philip’s Page
Matty from England has very delicate surgery on the !9th of January Matty had the same aspergillus fungus infection as Jacob. The aspergillus was very aggressive and he has to have another operation to have his palate repaired. Matty and Jacob also had the same leukaemia (AML) Matty had his bone marrow transplant in 2003 (perfect match with his sister ) ;-) and is going strong still (thank God) His aspergillus is also under control just the damage it caused needs to be fixed Matt’s page
Prayers and positive thoughts For Matty’s friend “Dave” Dave has slipped into a coma ( sorry I don’t have his web address)Sad News matty's Mate Dave passed away on the 16th of January 2005 I just visited matts page and read the sad news please keep another angel in your prayers.
I haven’t heard Yet when Little Leo’s service is. I still can’t believe he is gone .
Thank you Emma for ringing to let us know he had passed.
Keep Leo’s family in your prayers.
* * * * * * * * * * *

Sunday andMonday, January 10/11/12th, 2005 4:27 AM CST

Sunday 9th January 2005
Day plus 55
Leonie and Don came down for a visit today. Jacob was tired and quiet most of the day until he challenged Aunty Leonie to a game of pool (Leonie haven spent a lot of her mis-spent youth in the local fun parlor) was up for the challenge ;-) She “let” Jacob win two games said she couldn’t take advantage of her “poor fragile nephew” ;-) (Jacob’s game was on fire he was sinking balls that were impossible to sink).
His eyebrows are growing back. They are growing in very dark and look like they will be black also his eyelashes are growing too his hair seems to be coming back blonde, The cyclosporin can make the hair grow back very thick the doctors said it’s often a lot darker too.
He tires easily but knows his limitations and will go and veg when he needs to. His GVH is at a perfect level not to much and not to little his skin is flaky he looks like he is peeling from being in the sun to long he has moisturizer for that (when he remembers to put it on)
He doesn’t itch so it looks like we have avoided the dreaded steroids again. ;-)
Be good stay healthy.
* * * * * * * * * * * * *
Monday January 10, 2005
Day Plus 56
Jake had physio today .He was very tired so was only able to do ½ an hour on the bike rowing, machine and the weights, he slept most of the drive home. It’s normal for him to have some very lethargic days as his body is still making new bone marrow and has to recover he gets frustrated though other then that he is feeling well within himself.
Good news little Rhiannon is out of hospital, Jackson is doing really well we are hoping to be able to pop in and see him on Wednesday.
Leo isn’t doing as well he is still in ICU and apparently not in a good way. Please extra hard prayers and positive thoughts his way.
Be good stay healthy.
* * * * * *
12TH JANUARY 2004
today marks the aniversary of loosing
Jayden fairfull please take a minute today to remember a very special boy
fly high on your red angel wings Jayden
jayden's page
* * * * * * * * * * * * *
Wednesday 12th January 2005
Day Plus
BMT clinic and Physio today. We had to be at the hospital for bloods by 8am and physio at 9am
Yolande is on holidays so Carly took Jake for Hydrotherapy he really enjoys his therapy sessions especially in the pool.
He had his BMT appointment at 10:20. Anthony is still away on Holidays, so we saw Margaret this week, she is very pleased with Jacob’s progress. All his counts are good and his GVH is still excellent his skin isn’t as dry. he has been using the moisturizer more and after being nagged at by me he is having more oil baths as well. ;-) He still hasn’t gotten the appointment with the eye specialist (been waiting since before Christmas).
While we had to wait for his scripts from pharmacy we dropped into see Jackson he is looking a picture of health still has his hair, though it’s a lot thinner (I’m never going to get the bald shots of the boys together)
Hopefully next time we see him will be in the BMT clinic ;-) jackson’s page
Leo is still in ICU his Dad said he isn’t doing well, he is on the ventilator but they have been able to cut of the dialysis (?) machine. he is a fighter and a tough cookie I’m sure he will make it through this crises.
Extra prayers and positive thoughts his way please and for his family.
Be good stay healthy.

Saturday, January 8, 2005 7:42 AM CST

January 8th 2005
Day plus 54 over ½ way ;-)
We have had a couple of very quiet days
Jacob’s well and hasn’t been as tired the last day or so I think the change in the weather has helped it hasn’t been as hot ;-)
Happy Birthday Nanna hope you had a wonderful day ;-)
Be good stay healthy
* * * * * * * * *

Wednesday, January 5, 2005 3:13 AM CST

5th January 2005
Day plus 50
Jacob had a very busy day today we had to be at the hospital at 8am for bloods and 11am Doctor’s appointment Dr Anthony is a way again this week(having a well deserved break) so we saw Dr Morag she is lovely and has the most beautiful Scottish tilt to her voice .Jacob was happy with the visit he no longer has to drink the Sustagen mix (he hated with a passion). Dr Morag was early for our appointment (wonders never cease ;-) so he had a couple of hours to fill before Jake had physio with Yolande
First we had to visit Jackson, Leo and Rhiannon, Jackson pretended to be shy while we were in the room ;-)
He is such a cutie and is doing well I’m still taking the hair clippers in as he hasn’t lost his hair yet (sux ;-) he looks really healthy
Leo isn’t doing well and is in I.C.U. prayers and positive thoughts his way pleases.
Little Rhiannon is improving she still has a long hard road to travel positive thought and prayers her way to please, she at least is in the ward now and is out of the BMT rooms ;-)
He asked (nagged) to visit everyone at the “Mater” as it’s not that far from the “Royal”
As we walked out of the “mater car park we ran into Little “Rhianna” and her family. It was wonderful to see her looking so much better then the last time I saw her
We hadn’t reached the 8east before we ran into “Joanna” the blood lady (the kids all her) then Nurse Debbie, Dr Ram heard Jon’s (loud) laugh and came out also gave Jake a cuddle Jake went all shy we walked into the day unit there wasn’t many kids there but most of his favorite nurses were on today so he was fussed over and had cuddles (Jake went really really shy not like him at all) “Bernadette” gave him a “bone Marrow bravery bead and an end of treatment bead” they have gotten the bravery bone marrow bravery beads for the three boys all having transplants unfortunately I don’t think they will be the last to receive them.
Jordan was the only Kid in that we knew he is also looking wonderfully healthy.(just day unit visit)
This will probably sound strange but it was good not to see the kids we knew as it means they are all doing well and don’t need to be in the hospital the sad thing was there are so many new kids. We had forgotten how cozy the ward it there it’s tiny in comparison to “banksia” ward at the Royal children’s. Jacob told Bryan and Nicole (nurses) he is coming back as soon as his 100 days are up.He has decided!
I’m kicking myself for not taking photo’s while we were there today.
Jacob had his first hydro therapy session after lunch with Yolande.he loves the water she started him off with light stretches and then he was to tray and swim a lap unfortunately where his port is positioned he wasn’t able to stretch out to swim freestyle he was able to swim breast stroke and did well, after he swam a couple of laps they played a game of water polo, it was good to see him enjoying himself he has another session next Wednesday and physio on Monday
Also good news today Jake only has to have blood tests once a week now and weekly visits to the Day unit (outies)
Joshua Ruben and another boy came around this afternoon to visit they played a game of pool jake was exhausted by then and came into veg in front of the tv.
Be good stay healthy.
P.S Thank you Ram, Bernadette, Debbie, Ellie, Nicole, Bryan, Joanna, and Jo for making Jacob feel so welcomed today. x x x x x x

Saturday 01, 2005 2:48 AM CST

HAPPY HEALTHY 2005
2004 is over (Thank God)
2004 has been a hard year for our family as well as many other families
When Jacob was diagnosed in November 2003 we had no idea the journey we were to travel
I lost count after over 100 days in hospital (most were at the beginning of the year.)
We have had some horrible days and some up lifting days, we have met people who have changed our lives
With their acts of kindness, we have met some incredibly brave kids our Jacob is on the top of our list
We have sadly lost some amazing kids, Jayden, Jarryed and Daniel, were all very special to Jacob
Jacob’s caring bridge page has helped us through some pretty rotten times also the good times all the messages left on his page has meant so much to us, having a child with an illness can make you feel so alone. Knowing people take time to read and leave messages makes us all feel less alone, being able to read other families journeys, reading all about how strong theses kids are is awe-inspiring.
We wish everyone a happy healthy 2005
Be good .stay healthy!

* * * * * P.S happy 17th birthday Amanda * * * *
* * * * * * * * *
Sunday 2nd January 2005
Day plus 48
Can’t believe we are at day plus 48 already it want be long until he is at day plus 100 (15th of February our Johns birthday)
Jacob’s been very tired the last few days and has spent a lot of the day sleeping and going to bed early.
The doctors are happy with all of his blood counts so that Ok .We were told to expect him to be tired for at least 3 to 6 months after transplant and with all the drama over the last year we are all a little tired. Jake doesn’t have to have his bloods done tomorrow they think they have found the right dose of cyclosporin (anti rejection meds) so we will be at the hospital on Wednesday for B.MtT clinic. We haven’t been told when they are starting the intrathecal methotrexate we had been told that it would be every month for the next 12 months.
Be good stay healthy
* * * * * * * * *

Wednesday, December 29, 2004 1:22 AM CST

26th December 2004
Our Hearts and prayers go out to all the people who have lost their lives and love ones
In Asian tsunami, we pray all those missing are found safe and sound.

Sunday, December 26th 2004 5:45 PM CST

24th December 2004 Christmas eve
Day plus 38
Jacob’s “port” op went well yesterday .he had to stay in for 24 hours for antibiotics and was released at 5pm Today Christmas eve.
Yesterday morning while we were waiting to be admitted “Santa” and his helpers stepped off the lift. They were swamped by kids and didn’t get far, “Santa didn’t have a present on him for a boy Jake’s age, so one of the “helpers “ran out to their Ute and grabbed two present. one for Jake and one for Ryan both boy’s received display car’s they are really “cool”. poor “Santa was of thought we were stalking him every where he went happened to be the same place we were.(couldn’t score extra pressies though ;-)
“Santa was from BT equipment (rocklea) Vic and the boy’s fun raised for the toy’s to donate them to the kids. there are some very special people in this world I think they enjoyed being “Santa’s for the day”
Have a very merry Christmas (ok Not Too merry) be good stay healthy have a brilliant Christmas day and count all your blessings.
PS Jake received a letter from his donor today he is a mother of 6 kids from 2 to 17 she has a wicked sense of humor and we think we have worked out that she is from Victoria (she supports collingwood)
Thank you Matty Mattys page for Jacob’s friendship band (it came today) and to “Vik’s” for the artificial snow.


***MERRY CHRISTMAS***
December 25th 2004
Day plus 39
Santa came sometime during the night, He left heaps and heaps of presents under the tree.
He also came with a truck delivering a “pool table for the kids” a wonderful man from “Haron and son (slacks creek) billiards and pool tables” delivered a beautiful pool table. With the works we couldn’t believe it . and a fues ball game from it never ceases to amaze me the amount of generous people in the world also Carol from GTB thank you for giving us a wonderful Christmas and most of all Jacob’s bone marrow donor thank you with every beat of our hearts.
The boys were all up at the crack of dawn (with help from the crack of dawn Christmas call from poppy Leo at least he waited until 6am this year ;-)) we had to wake Jacinta up as usual (not a morning person)
All presents were ripped open by 9am ;-) took the kids down stairs the look on Jake’s face when he saw the pool table and fuse ball table was fantastic we spent most of the day playing pool we had a Hot lunch (which felt strange hot lunch with out prawn or salad in the middle of summer).Jacob fell asleep at 4pm and I had to wake him up at 8pm for his meds.
We hope every one had as good a christmas as we did
Be good stay healthy x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x

Wednesday, December 22, 2004 6:46 AM CST

22nd December 2004
day plus 36
Good news today Little Jackson has his doors open and may be home for Christmas day ;-)
Jackson’s page
Leo has had his bone marrow transplant and is doing really well .Little Rhiannon is out of isolation and is now on the ward ;-)
Our Jacob is doing extremely well ,we had an appointment with Liane today (head oncologist) she is very impressed with Jake he is going in leaps and bounds and was given the Ok to have his “hungry jacks” today. His G.V.H is mild and clearing he will have to be extra careful in the sun though.
He could hardly wait to get out of the office and go to “hungry jacks” he ordered a double bacon cheeseburger, chips and a coke. I think he thought he was in heaven he almost drooled while he was waiting for them to be cooked (hungry jacks will cook the burgers and chips fresh if asked) he can now have hot dogs (only from the supermarket and fresh cooked) “feta cheese” but not his kababs. ;-( he said that’s ok ,he is happy with what he is allowed to have. And to top it off he is allowed to eat Christmas ham ;-) (Couldn’t tell he loves his food) now I really have to get myself into gear and start shopping and cooking..
Yoland the physio is amazed at Jacob. I jokingly said he was trying to get fit for the beginning of soccer trails in January, she said it wouldn’t surprise her if he was fit enough.(though it’s not really possible) nice to think he has the drive and determination to try though. Jacob use to play in a soccer academy and was selected for a soccer excellent school before he was diagnosed as well as selected to try out for rep teams.
He has missed his soccer and tried very hard never to miss any of Ryan’s game’s.
Philip (deer pooper ) has his 15th birthday on Christmas day Philips page please stop by and wish him a happy birthday he is a real dag he and his mum Evon would come by and wave through the window when jacob was in isolation they are always good for a laugh
Be good .stay healthy “Santa clause” js coming ;-)
P.S Jake has his port put in tomorrow

Tuesday, December 21, 2004 3:27 PM CST

21st of December 2004
Day plus 35
It’s been a couple of uneventful days Jacob had to have his bloods done early in the morning so he went down stairs to the pathology lab instead of the Day unit to we were in and out in 5 minutes. (Because he doesn’t have any lines in he can’t be accessed in the day unit, which really has to be a lot safer as there aren’t near as many people around we sat all day in the day unit last Wednesday and Thursday it was packed with people),They tell me that the kids in the day unit are the healthy one’s and he doesn’t run the risk of catching anything there I still get freaked though.
He has been feeling really well and is starting to get cabin fever he would like to go somewhere /anywhere (other then the hospital of cause) we have been going for short walks up the road there isn’t really anywhere around here to go.
Yoland the physio is very impressed with Jacob’s fitness he has physio three times a week.
Jake goes into hospital on Thursday to get his “port”` put in. finger’s crossed all goes well he should be home the same day it will depend on how late he is on the surgical list.
Little Jackson had some scary news the other day prayers and happy thoughts his way and to him mum Emma she is looking very tired .It’s not easy being in the isolation room by yourself everyday. Jacksons page
Be good stay healthy
4 more sleeps until the fat man comes (Santa! not Jon ;-) ;-)

16th December 2004
Day Plus 30
Jacob had to be at the hospital at 8.30 am today. He had his LP and BM and a skin biopsy Results tomorrow fingers crossed heaps of prayers positive thought vibes etc (please)
He came out of the anaesthetic quickly and was up and about soon after.
Dr Anthony came to see him and informed us Jake has grown a bug in his line culture so had to go to surgery to have his central line out. With his history of aspergillus they weren’t going to muck around and wanted it out. Especially as he is having a port put in next Thursday they didn’t want to run the risk of cross infection. We had to wait until 4.30 before he was able to go down. Poor kid was so hungry by the time we got there he almost ran into surgery so he could wake up and have something to eat ;-) The people in the surgery ward thought he was amazing laughing and being so eager to go in (they say he is the only one they have met who does That) I just think like all boys he is lead by his stomach ;-)
Jon and I were a little freaked no one knew what ward he was going to. We were worried he was going to be on the infectious ward or surf ward (banksia kids over flow to Patterson ward) we are on Paterson ward but (thank God) in an isolation room That way he isn’t in contact with anyone that could give him an infection The room has a lovely view it would have been nice to of spent his transplant isolation there.
He should be out tomorrow.
Today while in the day unit (outies) There were a couple of new families.they are so easy to spot as they all have this “look” on their faces It the look only someone whose world has spun out of control I remember it well, Jon and I had the same look when Jake was diagnosed.
One little boy is only 4 months old and hasn’t been fully diagnosed yet please but little Thomas in your prayers pray it’s not cancer.
Another boy Jacob’s age has started his first rounds of chemo please send positive thoughts and prayers his way
Cancer Sux…….
Little Jackson is looking so well (little bugga hasn’t lost his beautiful blonde curls) Jake is already getting his hair back I wanted a photo of the three mater kids bald and beautiful. (Watch it Jackson I might come in and shave it all off) ;-) (just kidding) Jackson’s page
Be Good stay healthy
Santa clause is coming
* * * * * * * *
Could every one say a small prayer for little Jarryd (george)the angel with the beautiful eyes, today would of been his 5th birthday * we miss you george love hugs and kisses.
17tth December 2004
Day plus 31
Excellent results from the LP and BM ;-)
Jacob was released from hospital this morning we were to bring him back by 1pm for more antibiotics
The hospital rang and wanted us there earlier he had a different infection then the one they had been treating him for and he was to stay in until Sunday. We dropped everything toddled off to Paterson ward where they had a room waiting for him the nurse started the IV Jacob told her she had the rate up to high I tried to explain that his cannula’s never last long as they tissue really early. (I don’t think she believed us paranoid mother and all that) no sooner did she leave the room and Jake’s hand started to swell like a balloon another nurse came in and was not very happy. He had to have the cannula removed as it had tissued (Doh!)
Dr Anthony didn’t want to try to put another canula in as Jacob’s veins are so shot it’s almost impossible to find a viable vein to use. soo off home we went. Not even oral antibiotics, as this bug doesn’t respond to oral.
If he gets a temp over the weekend we are to bring him back. (You would never know he had a transplant and is very susceptible to bugs viruses etc etc etc..)

Amanda’s mum Julie invited Annette (living at the leukemia village too) and I to the “Tina Arena” concert to night at the entertainment center at south bank.
It was a terrific night what can I say, she is amazing how such a strong voice can come from such a little woman amazes me. she was brilliant. Amanda was invited to a meet and greet, she said that Tina was lovely Amanda had her photo taken with her for some magazine, Amanda had to take her shoes off because she towered over Tina (who had 6” heels on ;-)

Three families at the village have had the worst possible news. Please keep them all in your prayers
Cancer * & ^ SUX
Be good stay healthy
* * * * * * * *

18th of December 2004
Day plus 32
No hospital visits today a whole day to ourselves what a luxury ;-)
Jacob’s aunty leonie and Uncle Don came for a visit, as usual Jacob and Leonie teased each other un mercifully all day (at least they are entertaining )
Leonie is my oldest sister (though to see her with jake some time’s I wonder!) She has been fantastic to us especaly since Jacob got sick, while he was in isolation and he couldn’t have visitor’s she either rang or text me almost everyday, she send’s jake wishbone’s it’s a private joke between the two of them (I’m sure the nurses think we are nut’s with his collection of wishbones on his bedside table)
When jacob has been in hospital (most of this year) Leonie and Don would catch the train’s to the city to visit and give me a break.I will always be grateful that God gave me such a wonderful sister.
Now I have better mention my other big sister Marree (she leaves all the soppy messages on jake’s guess book ;-) Thank you Marree for being so wonderful for me this year all the chat’s on the phone flying up to see jake when he was in hospital all the messages on his page if I was a better writer I could really put everything into the right words.
Ok while I’m on the I love my family kick I also have an amazing big Brother Our John (I’m the youngest like jake)
My big tough motor bike riding long haired big softy of a brother who has dropped everything any time I have needed him who ring’s just to make me laugh who flew all the way to queensland with our Mother (who has been sick herself)just cause he knew I needed to see her and have a cuddle when jacob was first diagnosed. Who worries almost as much as I do about him I love you
Now My Dad and Mother and step father Ron there isn’t enough words in the dictionary to express every thing you have done for us over the years( not just while jacob’s been sick) My Dad (leo) hates the city and hates hospitals more, has driven the two day’s to get to queensland (*&^* City traffic )and stayed a while he rings all the time (keep’s getting the * answering machine) how bless were we to have you as our Dad Thanks dad you are a wonderful grandfather not only to my four but to the other 28 or so.
My Mother (Lola) has had some seriouse health issues herself this last year or so,It didn’t stop her from flying up to see us, all the phone calls and messages on jacob’s web page and just being a wonderful Mum
I wish I was half as good a mother x x
My step Dad (Ron) we are all so greatfull to you for caring for Mum while she has been sick for being caring to all of us as well and being wonderful to all of our kids,
To Kerri thankyou for leaving messages on jacob’s web page I know it was difficult for you,
My Nieces Jade and Erin all year they have sent special messages, cards and hit jacob’s page. Jade ring’s me at least once a month just to say “Hi”
Teigen Jacob love’s his horse it comes to every hospital stay and will always be special to him because of you.
Kye Tara Bianca( who gve up a day’s work to have her blood tested for jacob) Rhiannon Samantha Morgan ( who also came to be tested for blood for jacob and is terrified of needles Shh it’s a secret) Jordan, Luke Thanks kids you are all the most wonderful cousins any boy would want ;-)
Be Good! count your blessing’s each and everyday kiss your kids

Monday, December 13, 2004 4:49 PM CST

New Photo's in album
Prayers please for “Zara” she has been newly diagnosed she is only three(her mother is a friend of Jacob’s Aunty Marree)
Day plus 27
JAKE HAS BEEN DISCHARGED FROM HOSPITAL ;-)
jake was able to come home today (to the luekamia village anyway) at least we are out of hospital Thank God
we have to be at the hospital everyday for blood test and check ups but at least he can sleep without being woken up every hour for temps and blood pressure.
be good stay healthy
nearly christmas HO ho HO
* * * * * * * * * * * * * * * *
14th December 2004
Day plus 28
Jake had his check up at the hospital this morning, first time we were out of there on an hour everything is fine his counts are good
We had a quick visit to Jackson (wave through the window) Jackson’s page
He looks so well and gave us a cheeky grin
Little Rhiannon has her doors open now her mum was so funny when they opened the doors she just stood there and sobbed
Leo goes into isolation tomorrow keep him in your prayers he has along road ahead.
Be good stay healthy
Santa comes in 10 more sleeps
 * * * * * * * *

!5th December 2004
Day plus 29
3rd day of freedom
We had to be at the hospital at 8am this morning for bloods. two of Jake’s lumens had decided to block, so he had to have something in the lines to unblock them
We had a meeting with Anthony (Dr) they have decided to take Jake’s central line out and put in a port-a-cath
(port) The doc’s are concerned about the bug he grew in his lines whilst in transplant as, he has no ability to fight any infections and as he has had aspergillus they can’t run any risks .The port is tentatively booked in for next Thursday (23rd December,) hopefully if he has to stay in it will be only for the night.
He has physo again today he did well yesterday but his legs were aching a bit during the night.

Also tomorrow is his first L.P and Bone marrow biopsy positive thought and prayers his way please.
Be good stay healthy. 9 more sleeps until Christmas
* * * * * * * *

Wednesday, December 8, 2004 1:58 AM CST

of December 2004
Day plus 22 (1 month in hospital)
Jacob had a fantastic day today Yolan the physo came in the room this morning to do Jake’s physiotherapy she asked him if he would like to go for a walk. Jake said “to where?”(Thinking it was just up the end of the transplant unit). When she said he could walk out to the ward and even if he is up to it out to the corridor. well Jake was out of bed so quickly we couldn’t keep up with him Yolan was running behind pushing his pole telling him to slow down ;-) (Jake never walked when he could run, nothings changed). After his walk he didn’t want to go back into his bed so sat on the lounge where he could look out into the garden.
This afternoon Jacob wanted to go for another walk with Jon and I. we went outside, .He put his face up to the sun closed his eyes and said “so this is what the sun feels like”. He then bent down to touch the grass, pulled some up and let it go in the wind he had this look of pure joy on his face and laughed. It was the most beautiful sound.;-)
Ryan is staying the night with Jake at the hospital tonight.
To carol (Jacinta’s boss) Thank you! There are angels here on earth that move through peoples lives and touch their soles without even trying you are an angel Carol. I wish you would let us tell people what you have done for our family.
Be good stay healthy,
“Santa’s coming”
* * * * * * * * * *
9th December 2004
Day plus 23.
Day leave today
Jacob was paroled this morning for a few hours well all know what hospital are like so it was after 1.3o before we were able to get out of there.
We spent the day at the unit at the leukaemia village just watching telly he isn’t able to go anywhere with people yet. 77 more day’s until he can have “Hungry jacks” (like Macdonald’s) ;-}
They are painting a mural on the wall outside the ward all the animals and fish have names of the kids
Jacob is now a huge white whale. It’s a lovely idea all the kids have picked what picture they want. Jake of cause being thirteen pretended he didn’t care what one he was but had his photo taken outside pointing to the whale .;-)
Little Leo spent the evening in Jake’s room again playing Uno .Leo has his transplant soon. Little Jackson Jackson’s pageisn’t well today prayers and positive thoughts his way please The little one next door (Rhiannon) is a lot better she still needs extra prayers though. Also on the ward there is a little one named Sarah she needs lot’s of prayers and happy vibes sent her way too.
Debbie (nurse from the mater) dropped in christmas presents for the boys today that was so sweet of the mater to remember them.
Be good stay healthy
16 more sleeps until Santa comes ;-)
* * * * * * * * * * * * * * *
10th December 2004
Day plus 24
Jacob has been spoilt rotten the last two days he has had day leave again today
The leukaemia village had their Christmas party today Jacob couldn’t go he was given presents anyway as was Ryan. ”Santa’ wouldn’t let Jon sit on his knee ;-( when we got back to the hospital at 5pm there were presents waiting for him, the ward had it’s Christmas party too (Jacob wouldn’t of been able to go ) he was spoilt even more even a present from “Santa” and a letter.
His spirits are high, he is hoping we will be able to go home tomorrow. he is really missing the animals he knows he want be able to pat them .he just wants to see them especially “Bonnie” Jacinta took a video of the dogs and cats for Jake last week he was so happy to see that they are all well he has missed them more then he had let on he is such an animal lover .
All of his counts have improved we are just waiting for him to eat more and for his cyclosporin levels to settle (anti rejection med) everything else is ahead of schedule he finishes the heparin tonight (protects the liver). We are slightly freaked with how well he is doing after the relapse we though nothing would ever be right again see. “After the rain there is always a rainbow”
Huge thank you to Philips mum for the basket of candy canes for Jake and for all the waves through the window when Jake was in isolation
Little Jackson had a better day (even has some neutrophils ;-) ;-)
Be good stay healthy
Look out for flying rainndeer 15 more sleeps
* * * ** * * *
11th December 2004
Day plus 25
Jake had day leave again today.we went home for a little while so he could see the animals the temptaion to touch them was proving to hard for him so we had to go back to he leukamia village and watched a movie
Amanda's family is in the unit next to us so jake and I were invited over to have a game of mahjong Jacob caught on very quickly he has a rash the doctors arent worried as it's a small dose of GVH (graft verses host)a little is good.
he will have a bone maorrow biopsy on thursday to see if they have caught it all and if the new marrow has taken over yet (pray hard it has please)he also will have chemo once a month in the spine for 12 monthshe still has a long road ahead
our jonathon has been nominated for apprentice of the month we are so proud of him
be good stay healthy
* * * * * * * * * *

Tuesday, December 7, 2004 1:51 AM CST

5th December 2004
Day plus 19 (2.35 neutrophils)
Jacob’s counts are still brilliant he has started to make his own platelets his HB & WCC are raising by them self also and has been off the “G” for two days. He is very bright and cheeky today. Last night he walked down to Jackson’s room and waved through the window. He is taking all his meds orally and has started to eat a little, Jon made Jacob’s favorites casserole tonight and he ate a good portion. I wouldn’t be surprised if we move to a ward room soon.
Leo is next to come in for his transplant he is doing very well at the moment good thoughts and prayers his way please. Little Jackson has been a miserable at the moment hopefully his counts will kick in soon, the little one next door is doing wonderfully and is all smiles again.
We spent most of the afternoon watching D.V.D’s
Be good. stay healthy. ;-) ;-)
* * * * * * * * ** * * * *
6th December 2004
Day plus 20
Jake’s counts are still good, ha has been taken of the PCA (one less machine to bip ;-) one more step to going home. The doctors are amazed at how well he is doing, if he keeps going as well as he is without any set backs (touch wood). He could be out on day leave by the end of the week. I can’t believe it’s going to be that soon, we were told we would be in for Christmas, but Jake as usual is in a hurry to get on with things he has such an amazing spirit.
The little one next door has an infection prayers and happy thought her way please.
Little Jackson’s doing much better.
Thank you everyone for signing Jacob’s guess book it really means a lot to all of us
Merry Christmas ;-)
* * * * * * * * * * * *
P.s Jacob was very much his old self today we played cards today Jake as usual won most of the games (I sure he cheats) Amanda and Julie (Amanda’s mum) came by Jake’s room and played a couple of hands of uno with Jake I think he met his match as they were even at winning, Julie and I snuck off to have a cuppa.
Jacob’s eating and drinking well today
Be happy think positive ;-).
* * * * * * * * * * * * *
7th December 2004
Day plus 21
Jacob had some pain this morning in his stomach the doc’s think it could be some DVH or some left over mucastis in his gut. Either way it’s nothing to worry about .we were told today he could be out of hospital tomorrow or by Friday. It’s a scary thought, as it seems to have gone so quickly.
Jake’s looking well his spirits are good his hair is even starting to grow back (could be the cyclosporin) anti rejection meds) and I’m sure he is more then ready to get out of here.
We will have to come back every day, maybe twice a day for the v-fend. (For the aspergillus) the doctor we saw today (who apparently is the head doctor of the transplant unit we have never met) thinks he only will need the v-fend once a day I don’t know if I really trust her judgement as I don’t know her from Adam,
We rarely saw the oncology consultant. Luckily we had, had Dr Anthony at the mater so at least that’s one doctor I know, knows his job I cant wait until we can transfer back to the mater. The nurses here are nice though as is the domestic staff I’m sure the two Debbie’s helped me to stay (semi) sane. ;-}
The little one next door had a small set back today, her mum said she is doing a lot better this evening.;-)
Little Jackson’s lots better too; he is such a cutie. Emma (his mum) and I sat gas bagging in the parent lounge last night until late it was nice to relax for a while.
18 more sleeps until “Santa” comes hope you are all on his good list ;-)
Be good stay healthy
* * * * * * * * * * *

Sunday, December 5, 2004 8:44 PM CST

5th December 2004
Day plus 19 (2.35 neutrophils)
Jacob’s counts are still brilliant he has started to make his own platelets his HB & WCC are raising by them self also and has been off the “G” for two days. He is very bright and cheeky today. Last night he walked down to Jackson’s room and waved through the window. He is taking all his meds orally and has started to eat a little, Jon made Jacob’s favorites casserole tonight and he ate a good portion. I wouldn’t be surprised if we move to a ward room soon.
Leo is next to come in for his transplant he is doing very well at the moment good thoughts and prayers his way please. Little Jackson has been a miserable at the moment hopefully his counts will kick in soon, the little one next door is doing wonderfully and is all smiles again.
We spent most of the afternoon watching D.V.D’s
Be good. stay healthy. ;-) ;-)
* * * * * * * * ** * * * *
6th December 2004
Day plus 20
Jake’s counts are still good, he has been taken of the PCA (one less machine to bip ;-) one more step to going home. The doctors are amazed at how well he is doing, if he keeps going as well as he is without any set backs (touch wood). he could be out on day leave by the end of the week. I can’t believe it’s going to be that soon, we were told we would be in for Christmas, but Jake as usual is in a hurry to get on with things he has such an amazing spirit.
The little one next door has an infection prayers and happy thought her way please.
Little Jackson’s doing much better.
Thank you everyone for signing Jacob’s guess book it really means a lot to all of us
Merry Christmas ;-)
* * * * * * * * * * * *

friday December 3rd 2004 8:19 PM CST

3rd of December
Day plus 17
;-) ;-) JACOB IS OUT OF ISOLATION ;-) ;-)
* * * * * * * * ** *****************
Door opening day
11.30 this morning Candace (nurse) came in all excited and made a huge production of opening the doors
Jon and I were more excited then he was
We both look our hospital gowns off and threw them in the bag did a little jig, Jacob wasn’t impressed at all he just looked rolled over and went back to sleep,
He will still be in hospital until maybe the 16th of December if everything keeps going well.
And we could be home for Xmas. ( now Iam going to have to go shopping for Xmas dinner)

Peter Hadfeild (principal from his old school ) and some of the student dropped by to wave at Jake through the window this morning.
Tweety Bird came by and waved through the window also and left him the “starsky and hutch” c.d
* * * * * * * * *
4th December 2004
Day plus 18
3.34 neutrophils ;-)
Jacob slept until 2pm today,(talk about lazy anyone would think he just had a bone marrow transplant ;-)
he is well today he even ate some rice this evening.
he asked if his feed tube can come out
they are going to ask the docs as long as he starts to eat and can take his meds.thank god for neutrophils ;-)
thank you everyone for signing his guess book it means so much to us knowing that people care,
be good stay healthy
* * * * * * * * * * * * *

Sunday, November 28, 2004 -1st of December

28th November 2004
Day plus 12
Jacob didn’t get very much sleep last night. They were late yesterday giving him some meds to make him go to the toilet to lower his fluid levels (he has been carrying way to much fluid) so he had to go to the toilet every 15 minutes, his gastro nasal tube decided to leak all over him and his bed so that had to be changed, I was sooo Glad it was Jon’s turn to sleep over. ;-) He has been trying to sleep all morning. It is as busy here on the weekends as it is during the week, the ward is over flowing with kids they actually have heaps of oncology kids on other wards as there isn’t any room on this one there are 5 kids in isolation rooms as well. I have heard it’s as busy at the mater
Where does all this cancer come from ?? Something isn’t right..
Jacob had a nose bleed this morning his platelets are low so he will be having more today (yesterday as well) he also is having a blood transfusion. It brings home the importance of becoming blood donors there is as always a shortage of platelets, they are as precious as gold
Jacinta and Jonathon bought up the mail today. Aunty Marree sent photo’s of Jordan’s year 12 formal he looks more like his Dad every year (with out the beard and gray hair ;-) and of cause being my God son is way better looking ;-) Kye and Graham sent Jacob a wooded horse they made for him with all their families names on it (even the new babies and he isn’t born yet ),it was a lovely surprise and now is on his bedside table.
Ryan as usual has spent the day at the hospital even though Jacob has slept most of the day he is happy to sit and play the playstation.
Be good stay healthy.
* * * * * * * * * * * * * * *
29th November 2004
Day plus 13
Jacob’s doing really well the doctors keep telling us, he is very strong. we are just waiting for his counts to come up so we will then know if the marrow has grafted.
Today he has 0.3 white cells and 0.05 neutrophils (not enough to get excited but enough to give hope.(he needs greater than 1 then we can get excited). Blood and Platelets again
The little one next door is feeling miserable today she has mucisitus poor baby. (Day plus 5 for her)
Jacob’s asleep he was up going to the toilet all night again .I wish they would give him his meds earlier so he can sleep during the night he is not a happy kid when they wake him up all day to check him over. I am sure you all know what a teenager is like when they haven’t had their 20 hours sleep ;-) ;-)
Ryan was very hyped up last night after spending the day at the hospital so we decided to walk the long way back to the unit. Ryan assured me he knew the way because his school walks that way to go to soccer sometimes, after ½ an hour he realizes we should of turned right instead of left at the corner shop so we had to back track. Poor kid has inherited my sense of direction. (We can’t all be perfect ;-)
Barry (who does the lung function tests at the royal) drew Jacob’s portrait and gave it to us today ,it is absolutely gorgeous he has captured the mischief and cheeky look in Jake’s eyes he also has Bonnie in the drawing and she looks like she is she is up to no good too. Barry is so talented and doesn’t accept any payment for the portraits he frames them and everything, what a wonderful God given talent to have. There are so many amazing people in this world that do thing just because they are special and ask for nothing in return.
Little Jackson is in the room down the hall he received his bone marrow today (umbilical cord) all the way from New York (America). His mum is a Kiwi he was born in Aussie so what will he put on his pass port now??? ;-)
Jacob has had a terrific day his pain meds have been cut down he was able to get out of bed this evening and played on the playstation with Ryan he also has eaten a few ice blocks ;-) ;-) (His lip is still huge and he still doesn’t know how to cook scrimp. :-) ;-)
Be good stay healthy.
^^^^^^^^^^^^^^^^^^^^^^
29th November 2004
Day plus 14
Jacob had a good day he was awake more even getting out of bed to play with Ryan on the playstation again.
Yoland the physo came today to see him and is very impressed with how he has exercised and kept his muscle tone .she doesn’t think he will need the intense physiotherapy they were expecting him to need.;-)
His lungs are clear also. (I think Jacob was determent to never have to learn how to walk again twice in one-year was way enough)
The doctors are all pleased with his progress. His counts are all starting to recover except platelets but they are often the last to come up. They think it may be as early as next week he will have the doors open ;-)
Amanda and her mum came to wave through the window again today and for once Jacob was awake and waved back ;-)
Be good stay healthy
* * * * *
1st December 2004
25 days until Santa comes ;-)
Day plus 15***** 0.62 neutrophils ****
Jacob was a little sleepy this morning and slept most of it. His counts today were very encouraging
Hb 122, platelets 32(he will have platelets today), wcc 1.1, neutrophils 0.62 they are slowly climbing. He was started back on nasal gastric feeds again (1 step closer to door opening day) the back ground on his pain machine was taken off (he still has the bolus) that’s another step to door opening day.
He had another ultra sound also.
He is almost back to being his old cheeky self. There were all these doctors looking through the observation window today. Jake flipped them the bird, I almost crawled under the chair. I was so embarrassed. Jon and Alison (nurse) thought it was hilarious I wasn’t impressed with Jon encouraging him.
Be good stay healthy
ps photo of the drawing in the album
d December 2004
Day plus 16
Neutrophils 1.81 ;-)
Jacob has more neutrophils today all his other counts are up as well;-)
He is very sleepy still today but he is feeling heaps better,no back ground on his pain meds
And has a 5 minute lock out on his bolus
Be good stay healthy

Thursday, November 25, 2004 1:42 AM CST

23rd November 2004
Day plus 7
Better day today ;-)

Jake had a better day today his Temps have broken ;-) his lip is still very swollen and sore. We have been calling him ‘Bubba’ and asked dose he knows all the ways to cook shrimp? (Forest Gump movie one of his favourites) he was not amused ;-)
Jake has been coughing he had to have chest x-rays (his chest was clear)
He ate a mango and had an ice block tonight he also tried to eat some chocolate, that’s the most he has eaten in days ;-)
Be good stay healthy

24th November 2004
Day Plus 8
No neutrophils
Jake was up bright and early this morning and hungry he wanted pizza shapes for breakfast of cause I ate the last pack last night (well! he wasn’t eating them … ) I rang Jon on the trusty mobile to get his boy some “pizza shapes” by the time Jon got here Jake was sound asleep (isn’t that always the way) The box sat next to Jake all day Unopened (they were to hard for his mouth anyway.) he ate a couple of ice blocks though so at least he is hungry now (good sign)
Yoland the physo came and made Jacob do his exercise I think he is enjoying being a pain in the butt for her (he has no problems doing them when he wants too)
He had to have another ultra sound to day (they bought the machine into his room ) just to check on his liver one of the side effects with transplant is a liver disease (Veno inclusive disease) they have to check his liver every couple of weeks until the transplant has grafted.
Alison the hospital schoolteacher visited also today to see if Jacob had finished the work she had given him. (He hadn’t)
He had very busy day so much for Isolation ;-) ;-)

25th November 2004
Day plus 9
Debbie (nurse) from the mater came to visit Jacob, Jackson and Leo today. She had rugs for the boys signed by all the staff. Jacob can’t have his in his room (it can’t be hot washed) so I have tapped it to one of the windows so when he looks out he can see it. They know him so well the rug had soccer balls on it when he wakes up he will be so surprised.
Evon and Philip also popped by to wave through the window and give Jacob jellybeans for his deer pooper
(Jake was sound asleep)
There is a lot of excitement on the ward today, tomorrow is party day it a big competition between all the ward each ward had a theme Banksia wards theme is a pj party the ward is being decorated with nursery rhymes and balloons (not the isolation end though) they said there will be presents for the kids in isolation I suggested maybe they could put balloons in the garden, at least they can look out on them. The other kids are all having macca’s and subway as well as heaps of cakes and lollies maybe Jacob can have some of the lollies as long as we can wipe them over I don’t see why not ;-)
Amanda and her Mum and Dad popped by to wave through the window Jacob was still asleep I keep telling him he is lousy company. He says it’s wrong to make fun of a sick person ;-)
Be good stay healthy.
PS Congratulations on your graduation Jordan (you better be good at schoolies week or else .;-(
26th November 2004
Day plus 10
Jacob spent all of the day asleep his lip is still very swollen,(he must be feeling comfortable though cause he is snoring so loudly it’s almost like being at home listening to Jon snore all night ;-) the lip seems to be growing everyday he will have to be careful he dosen’t trip over it when he gets out of bed ;-) ;-)
Party day was a big hit (apparently) the ward looked terrific we took some photo’s to show Jake. He didn’t get to play any of the games or get to have any of the junk food ;-( (wouldn’t of been able to eat them anyway ) he tried to eat a yogurt yesterday and almost jumped out of his skin it was to hard on his poor lip.Alison and Candace hung balloons out side his door and gave him a toy frog that has the most amazing feel to the material (we had to put it in a plastic bag so he could have it in his room and wipe the bag over for germs) they also gave him two books to read so I guess that made up for missing out on the fun.
The ward won the “Golden pan” award for best decorated ward
He woke up at 7.oopm and watched some t.v started to have a game of monopoly on the computer and you wouldn’t believe it but Anthony (Dr) came in to do rounds (8.30pm) Jake just rolled his eyes and gave me the computer. Every time he starts to watch a movie or play a game the doctors interrupt, you would of though that he would have been safe at 8.30 at night ;-) at least Anthony rarely will wake him to be checked over but will came back when he is awake. ;-)
He stayed awake until about 10 watching the soccer.
Be good stay healthy.

27th November 2004
Day plus 11
Awake most of today he slept in until about 9.30am dosed on and off for a little while, then watched a movie with Ryan.
They are trying a new cream for his lips that numbs it more he seems to like it (but now he cant feel it and drools like a teething baby) ;-) ;-)
Be good stay healthy.

Sunday, November 21, 2004 3:10 AM CST

21st November 2004
Day plus 5
After a very restless night Jacob finally fell into a deep sleep at 7am, he slept on and off for most of the day
He has had more pain today and being driven nuts by a rash. he has mucusitis in his mouth and gut his lips are so red and swollen they have started to split They have upped the background to his pain pump and he has cream for the rash.he started to spike a temp also but it stayed at 37.8 (excellent) then went back to normal after a while.(Jake’s normal temps are usually in the 35/36’s
The rash is to be expected it could mean the marrow has started to work and fight his own remaining cells and any leukaemia cells that are hiding, some graft verses host rejection ,a little is a good thing it means things are working but we only want a little (prayers now would be good ;-).
The little one in the room next to us is doing well ;-) little Jackson will be in on Monday please keep him in your prayers and thoughts.
Jacob had a follow up story in our local paper this week. They had run a story last year when we had to have the blood drive when he needed the granulite infusion (neutrophils) and Friday ran another story on his relapse and bone marrow transplant.
Better not let the publicity go to his head ;-) he will be charging for autographs next ;-) ;-)
Be good stay healthy. Say a prayer for someone special ;-)
* * * * * * * * * *
22nd November 2004
Day plus 6
Not a good day..
Jacob has been spiking temps all day . he had to have more line cultures he has a rash and blotches all over his face his poor lip is so swollen and sore, he has been sitting with ice packs on it all day.and to top the day off his hair has decided to fall out (in big clumps ) it was all over his bed up his nose and in his mouth. he was not a happy chappy. Jon forgot to bring up the hair clippers (that he drove all the way home to get) (any one in the market for a new husband slightly used ;-) so I had to cut Jacob’s hair with scissors (not a very stylish cut) at least now it wont get every where.
He watched a cheech and chong movie (he usually loves that sick kind of humor e.g. Dumb and dumber, Monty python etc etc) didn’t even crack a smile. ;-(
He needed more blood and platelets today also
Ryan started his block exams today last week of school then school holidays (lucky )
Be good stay healthy give blood.. ;-)
;- ( ;-( (

Tuesday, November 16, 2004 2:59 PM CST

<><><><><><><><><><><><><>><><><><><><><><><><><><><><><
16th November 2004
***BONE MARROW TRANSFUSION DAY***
Jacob woke up this morning feeling really well and in a terrific mood..
We decided to make today as special as we could so it was happy bone marrow day we got him 13 balloons (one for every year) one had a skeleton on it (Bone marrow ;-) one pink (cause his donor is a girl ;-)
He has presents to open and a special present when he gets his transplant.
Ryan wagged school Jacinta was given the day off from her boss. Jonathon had to go to work but would be here in time for the infusion at 6pm
Jacob had a sleep and woke up about 2o’clock Jill came to his window and said they were going to do it in an hour Jon had to ring Jonathon at work so he wouldn’t miss out Jonathon ‘s boss let him knock of early he was at the hospital in record time ;-)
At 4.24pm the bone marrow was started an only took ½ an hour to go threw Jake had no reaction ( it was a bit of an anti climax to every thing he had been through )
Jacob was cracking jokes the whole time like
 Hey now I can use the girl’s locker rooms at school and not get kicked out ;-)
 I can use both toilets at the mall ;-)
 If Iam on a boat and they say woman and children first I can go first ;-)
 Can commit crimes cause now he has xy and xx chromosome
Uncle John rang today Aunty Leonie and jade and Douglas can to visit (but weren’t allowed in the room so they waved through the window).
Sound asleep by 8pm
BE GOOD, STAY HEALTHY
<><><><><><><><><><><><><><><><><><><><><><><><><><><>><>

17th November 2004
Day plus 1
Jake had a great day again today, so far his counts are good, no neutrophils but that’s normal.(2 days so far)
His spirits are really high and has been joking and teasing the nurses. Alison is a soccer nut like Jake so they have something in common, Candace thought that Ryan was the younger brother, Jacob thought that was really cool so has teased Ryan unmercifully all afternoon. Jacob said his Donor was over 18 ,so he can drink beer now .he asked nurse Tammy to ask if he can have beer ;-0 who asked Jill (the transplant coordinator who I think thought he was serious and said defiantly not! so he asked if he could have hubabuba gum (no) ;-(
Evon and Philip popped into the ward today and waved through the window they had brought him some new jellybeans f
or his deer pooper. ;-) Jonathon spent some of the day with him Ryan came up after school and Jacinta after work.
Jake’s school finally sent him some school work (he only hasn’t been at school since before the holidays and school only has a few weeks to go before the next lot of holidays) Jake’s not complaining though ;-)
Be good stay healthy.
* * * * * * * * * * * * * *
18th November 2004
Day plus 2
Jacob was very sleepy today he spent most of the morning trying to get to sleep
You know what hospitals are like no sleeping ;-) he even pretended to sleep when the physo (Yoland) came into the room the only problem with that was she had looked through the observation window before she came in and saw that he was awake. ;-) he very grudgingly did his exercises
He has Alison (soccer nut) looking after him today they seem to be getting along well .we have Dean tonight who also is lovely (bit quiet) Jacob has had him over at the day unit so at least it’s not another new face they have such a large staff here.
He has had some pain today and has had to use the relief button more hopefully he will get some rest.
* * * * * * * * * * * * * * *
November 19th 2004
Day plus 3
Jacob has slept all day he woke long enough to ask Jon to put on his Christmas carols c.d
(Couldn’t tell his fav holiday is could you?) He has 0.05 neutrophils today (they will probably be gone by tonight’s blood count but at least he is trying to make some ;-) he will need both blood and platelets tomorrow that should give him some more energy.
The doctors are happy with his progress (not that we see them much) and haven’t seen Jill since he was put into isolation. could be a good thing as it must mean he is doing really well
A little baby goes into Isolation tonight for BMT (only 8months old) happy thoughts and prayers her way
Woke at 5pm and played cards with ryan ;- )
Be good, stay healthy.
* * * * * * * * * *20th November 2004
Day plus 4 ( o.o6 neutrophils)
Jacob has neutrophils today they have kicked in earlier then expected he is usually slow in getting them (not to excited yet as they can disappear )
He needed blood and platelets today. His other counts are recovering the doctor said this morning if he continues to do as well as he is we could be out of isolation a lot sooner then expected.
He has been very restless today his skin is itchy that is a side effect of the transplant so nothing to worry about. Hopefully he will get some rest this afternoon.

Monday, November 15, 2004 9:11 PM CST

*8th November 2004
Jake had to be at the hospital by 9.00am to have bloods taken
Phillip and his mother Evon were in the day unit; Evon gave Jake a toy deer that poops brown jellybeans
Jake and Ryan both thought it was hilarious (what is with boys and toilet humor?? )
;-) ;-) ;-).
We have a unit at the leukaemia village up the road from the hospital Jacob had an hour before his next appointment so we took him up to have a look, it’s going to save us heaps of travel time and easier for Ryan to get to and from school he can walk down to the hospital, Jon and I are taking it in turns to stay with him and one of us can have a break during the day also.
We are in the isolation room already (not in lock down yet though) it’s lovely and quiet.
His first irradiation went well he was fine with the mask on (he is claustrophobic usually) he spiked a temp during the afternoon 38.5 but was feeling well (?) Chemo started today as well.
Be good stay healthy
P.S extra prayers and happy thought for Leo (little boy that roomed with Jake at the mater) he has also relapsed and is having a transplant soon too also little Jackson starts his treatment for transplant soon too
;-( ;-(
Tuesday 9th
Jacob had a good night, he slept well (but had to go to the toilets every hour) he didn’t wake up until after nine even slept through blood tests & chemo being hooked up. About ten he spiked another temp a reaction to one of the anti rejection medication they have started him on .he had irradiation again at 2pm he was fine all afternoon until he ate to much pasta and threw it all up as well as his feeding tube (gross), so now he has to have another one put in (double gross)
Be good stay healthy
PS Jon said Jacob put the feed tubes in himself (he amazes me).
;-) ;-)
Wednesday 10th
Jacob slept until 11am today he slept through all meds bloods again.
The camp Quality puppets came to see Jake today he was playing on the computer and pretended not to be interested the puppets put on his slippers (the ones shaped like a gorillas face), and he kept pretending they weren’t there. (We all thought it was hilarious). Jake’s not talking to anyone today ;-(
He had irradiation again at 2pm Shaun one of the (irradiation people) had made his mask to look like “Darth maul” (star wars) Jake got a real kick out of it. It was the first time he smiled all day.
His face is looking very swollen and sun burnt today.
He had some mail at the hospital today bob the builder’s family sent him some photos and a gift voucher for some music, Samantha (babe) wanted to get him the “wiggles” I sure he would of loved them too ;-)
(No,I lied again ;-) It was very sweet of them.
We also had a phone call from Jacob’s old school Wellington point to say hi and to send their love ;-)
Aunty Leonie rang, as did his mate Andre’s Mum so it’s been a very busy day. ;-)
Be good stay healthy
;-) ;-) ;-)
Thursday 11th Remembrance day“ lest we forget”
Morning last day of chemo ;-) ;-)
Jacob had to be up at the crack of dawn, he wasn’t happy about being woken up he didn’t get much sleep last night. He had TBI (total body Irradiation) it took about an hour he was able to watch a DVD during it.(50 first dates ;-) all he wanted to do after was sleep but as usual the doctors and nurses had to poke and prod him some more he was getting very ticked off .and who can blame him. one lot of medication he is on he has have his ob’s checked every 15 minutes and the nurse has to stay in the room for hours so there is no private time. we were moved into a room right across from the nurses station while the room he was in is sterilized (why we were put in there in the first place I have no idea ) so there wont be much sleep again tonight this time it will be the nurses keeping him awake (they forget it’s night time and talk all night ;-(
He has irradiation again tonight at 6pm then again tomorrow and Saturday at 8am and 6pm
His spirits are pretty low
Be good stay healthy
Afternoon
Jacob finally got to have a nap today, I had gone to the unit to have a catnap and left Jon and Jake watching a movie when I went back at 2pm both were sound asleep. ;-) He slept for a couple of hours woke up and had “coco pops”
He had to be at irradiation by 6pm tonight, he watched another movie. He was in a lot better mood when we got back to his room (we were able to go tonight without a nurse escort) so could act silly on the way back racing Jon and Ryan
Jacinta, Jonathon, and James were in his room. They had a long visit Jake was a lot happier when I left tonight
Jon’s turn to stay. ;-)
Be good stay healthy

Friday 12th November
Jake had a bad night he spent most of it in the bathroom ;-( he was up when I got to the hospital at 7am
He had to be at irradiation at 8am.
Irradiation went well. he is very tired and slept most of the day, this afternoon he had pain in the stomach, so has started on pain meds and TPI feeds he is still spending a lot of time in the bathroom and throwing up (he hadn’t be to sick before now so he has been very lucky) they have started him on extra anti sickness drugs (not the dreaded “dex” yet)
Irradiation this afternoon Jacob had spiked a temp 39.3 before we left (he had to have cultures done on his lines ) he was also feeling very queasy so the irradiation took longer tonight as he had to move a few times ,he fell asleep almost as soon as we got back to his room.
2 more rounds of irradiation tomorrow Saturday, then isolation in the afternoon.
Thank you to Michelle (neighbour) she had our lawns mowed for us today. You are very special Michelle and we thank you .
Be good stay healthy,

Saturday 13th November 2004
ISOLATION DAY
Jacob had TBI at 8am he was very tired and slept most of the day. then again at 3pm the people at TBI are all lovely and treated him extremely well .That thank God is the end of his irradiation.
We are now in the isolation room Jake’s spirits are good today.
The dreaded mucasitas has reared it’s ugly head already though. He has started pain management .so far so good
Be good stay healthy

Sunday 14th November 2004
Jacob had a good night he spent a lot of time in the bathroom again.
Sunday was pretty good he watched movies with Ryan and slept on and off.

Monday 15th November 2004
Happy Birthday Luke ;-)
Jake slept in until after 11am today, he seems to be feeling ok though he is looking very tired
He spent most of the afternoon watching DVD’s .he has started on another med today and has to have a nurse sitting with him for 4hours every time it goes through the I.V so it makes the room very crowded (the isolation room is very small)
Even though he is in Isolation it feels like “Grand central station” with nurses ,doctors, cleaners ,social workers etc etc . it’s impossible to sleep as they let the doors slam every time they leave the room.(not funny at three o’clock in the morning) there is the door to Jake’s room then the door to go out .every one and their brother walks into the “restricted” area how it’s suppose to be sterile I have no Idea, the rule’s for Jake’s meals do not make sense .they came from the kitchen (miles away) then are left in the air lock I have to nuke them for 2 minutes .he has to have fresh bread everyday. but to make him toast I have to go out to the communal kitchen to cook it. he can’t have hot water for a cuppa but I have to boil his drinking water (in the kitchen( then take it into his room disinfectant the jug and put it in the fridge in the room .there are sooooo many inconstancies it’s so frustrating ……..

Jacob’s big day tomorrow he gets his new bone marrow at about 6pm unless they have changed the time and not told me (that happens a lot..)
Be good stay healthy

Sunday, November 7, 2004 6:52 AM CST

Saturday the 6th November 2004
Happy Birthday Teigen
Jake had to be at the hospital by 9am this morning to have the antibiotic in his central line it took longer to drive to the hospital then it did to have the antibiotics ;-) he is fine still no temps (than God)
Jonathon took Jacob and Ryan to the pictures this afternoon so I had the afternoon to myself to catch up on washing and ironing and house work (just the way I love to spend the day) (not really I lied ;-)
Be good stay healthy ;-)

Sunday 7th November 2004
Another trip to the hospital for antibiotics, Dr Anthony gave him his check up while we were there that will save some time tomorrow ;-)
We spent the day at Caboolture with Aunty Leonie, Uncle Don and Morgan, the other kids (Leonie’s kids) all had colds so weren’t able to come over. We had a good visit anyway it gave Jake and Aunty Leonie more time to harass each other, they hype each other up like little kids. It’s hard to tell which one is the child sometimes ;-) ;-) ;-) Uncle don and Jon plodded around like old men (Jon’s birthday tomorrow) Ryan and Morgan watched video’s (bonding only the way boys do ;-)
Jake’s dog Bonnie was funny tonight she had us all in fits laughing Ryan was shinning a torch around the yard and she was running every where trying to catch it (she will sleep well tonight) maybe you had to be there?
I had to finish packing Jake’s bags for hospital tonight, it was like packing for a holiday no one wants to go on ;-(

Be good stay healthy

Monday 8th November
Jon’s Birthday and Jacob’s first day of irradiation

Tuesday, November 2, 2004 7:27 AM CST

Tuesday 2nd November
Hope everyone had a great Melbourne cup day ;-) hope you backed the winner
Jake spent the day at the hospital ,we had an appointment with Jill (the transplant coordinator) to discuss
Jake’s itinerary for next week. 8th of November We have lung function tests again Monday morning ,then meeting with Anthony (doctor). 12pm Jake’s first cranial irradiation and chemo he will have irradiation again on the Tuesday and full body irradiation twice a day on Wednesday Thursday and Friday (as well as chemo) Saturday he goes into isolation and that’s where he will stay for the next 6 weeks or so.
His transplant has been put off by one day and will be on the 16th now (not Luke’s birthday ;-) The 15th.
The donor has decided to give the stem cells (bone marrow )by Apheresis (take the cells from the blood instead of the hip bone) this means it will take two days to get enough bone marrow for Jake. It won’t make any difference to his receiving the bone marrow just one day extra. The marrow cells will then be flown in from where ever in Australia they are coming from and should be transfused into Jacob by that evening it then takes 8 to 10 days for the cells to remember what their job is and take off. During that first 8days or so is when he most at risk with infections and things not going according to plan he is very healthy at the moment so that makes a huge difference.
He had a L.P today and chemo so far he is great not sick at all, he doesn’t seem to be having any side affects from this lot of chemo (not thank God like he did first rounds last year)
Ryan had an award night at school tonight Jacob was so riveted by all the looong speeches he fell asleep
;-) He woke up in time to see Ryan receive his soccer award ;-) we snuck out after Ryan got his award and had Macdonald for tea he is lapping up all the take away food he can because he starts his low pathogen diet next week and there is so much stuff he can’t eat any more ;-( no more hot dogs kababs ;-( hamburgers
etc.
be good stay healthy ;-)
Thursday 4th November 2004

Jacob woke up yesterday with a cold sore on his lip I rang the hospital but they didn’t seemed worried at all
(Couldn’t get through to a doctor) last night he spiked a temp 38.5 the hospital said to just sit on it for a hour and if it went down to come in in the morning.
We were at the hospital day unit early to see Dr Anthony Jacob’s on extra meds for the cold sore (they can be a major problem and could set his transplant back if not under control) he had to have a lung function test, chest x-ray and ultra sound, blood cultures, nasal culture (sucked fluid from his nose GROSS) urine test etc etc to make sure the virus isn’t throughout his system so far some of the tests are clear we will know in 24-48 hours if his blood cultures are fine
Fingers crossed
be good stay healthy ;-)
Friday 5th November 2004
Jacob asked today if we could put up the Christmas tree because he want be home to do it in December
all put up the tree tonight our house is looking very festive early this year.
7.oopm the phone rang it was the hospital. Jacob’s blood cultures came back with a staff bug we were to come straight away to the hospital to have antibiotics put into the lumens (central line). we had to go to the emergency room.(this hospital, the kids are treated there after hours and not the oncology ward) I felt sorry for all the people who were there waiting as we were taken straight in to a “room” .Met Dr Michael and Nurse Karen, both of whom were lovely. Karen and Jacob got on like they had known each other forever . I haven’t heard Jake laugh so much at the hospital since we left the mater (pity she doesn’t work on Banksia ward) (oncology). Jake was teasing her about her height she was vertically challenged (very short) ;-) and called her hobbit she laughed along with him.She was cheeky with him also, We had to hang around until 11pm he was fine so we went home but have to be back again in the morning just for a couple of hours So we hopefully .so much for our last weekend of freedom ;-(

Friday, October 29, 2004 4:57 AM CDT

Friday 29th October
Busy day again today. Jake had to be at the lung function clinic early; then off to physo, he has some exercises to do to strengthen his lung muscles. Back to the lung clinic for more tests he got some good news today, he will be able to go to hydro therapy after isolation so exercise (even with a central line) he was really pleased with that as he loves to swim ;-)
back to banksia day unit to see Dr Anthony the doctors are very pleased with how Jake’s surgery went and how he is healing he has some discomfort but not enough to need anything stronger than panadol ;-)
all his counts are good his HB and Platelets are recovering on their own,;-) his neutrophils are good. ;-) ;-)
He had an appointment with the dentist to check that everything was ok. His teeth are perfect, nothing wrong with his gums or anywhere that could cause an infection .;-) That was the last of the tests for the work up for the transplant so far everything is on track. ;-)
He had a low grade temp at the hospital today, so we had to hang around a little longer. .He played cards with Kate the O.T they were both having fun (cheating I think ;-) so I went to pharmacy to get more drugs and the feed for the gastro nasal feeds, he has to start on them tonight. the docs want him to put on at least another kilo before transplant
The most amazing thing today; all Jake’s appointments were on time ;-) (Miracles happen) ;-)
Be good stay healthy ;-)
P.S Jake bone marrow biopsy results were excellent
Saturday 30th October
Jacinta and James took Jacob out on James’s dads boat fishing. Jake had a wonderful time (didn’t catch a fish) though he did get to drive the boat James said he is a real rev head and had to be told to slow down ;-)
Be good stay healthy

Sunday 31st happy Halloween
Jon the boys and I all went to Australia Zoo today. Jacob got to meet Terri Irwin and had his photo taken.
We had a full on day walking around the park watching the croc shows etc.
Be good stay healthy.

1st November
the first year anniversary of Jake’s diagnosis

Wednesday, October 27, 2004 6:27 AM CDT

Tuesday 26th october
Gall bladder Surgery

Jake had early appointments at the hospital today he had to have blood and platelets before his surgery and see the respiratory doctor all before his operation.
The respiratory doctor said his lungs are still in good condition but he needs to do some physo on them to build up strength he will see the physo’s on Friday.
Jake went down for his surgery at about 1PM he was very eager to get it over and done with, Jacinta’s boss had given her the day off work so she could be there so Jake had her go into theatre with him. Jon Ryan Jacinta and I waited in the parent’s room on “surf” ward (what felt like an eternity) he was bought up to his room at about 4 o’clock he was pretty much out to it for a few hours and was on some heavy duty pain relief (so he wasn’t in pain )he had a good night sleep only waking a couple of time’s to push the bolus(pain button) and woke fully at about 10am the next morning.
Wednesday
He some discomfort in the morning when the doctors turned his pain meds background in ½ but soon was able to tolerate it. by the afternoon he wasn’t needing any ;-) until the surgeon ‘s registrar had to pull out the drainage tube then he almost hit the roof he was not impressed at all.it settled down quickly though.
The amazing thing is he will only have 3 small scares, they pulled the gall bladder out his navel (GROSS)
They weren’t able to save any gall stones for him he had wanted them to show everyone,(I for one was very pleased )Jacob was disappointed.
The pets for therapy dogs came to the ward today a little white Scottish terrier named “Mctavish”
It was the first time I had seen Jacob smile all week he loves animals I think he would of let the dog sit with him all day.
Tonight he and Ryan and the other kids in his room (5 others) all played the games on the hospital t.v Jacob won a puzzle
be good stay healthy become a donor
( we have a little boy on this ward waiting for a liver)

Monday, October 25, 2004 3:02 AM CDT

Monday 25th October 2004
Another busy day at the hospital Jake had to be there at 8.30am for platelets.
He had another C.T scan and an ultra sound on his gall bladder, kidneys and liver. Then back to banksia day unit for a heart echo. two lot’s of blood test one for his usual counts and one to send off to the transplant lab. Finally got out of there at 1.30pm.
(Nurse) Debbie from the Mater hospital rang today to say hi and see how Jacob is they all sent him their love and said to say they missed him .I thought that was lovely of her, he has been so down since we transferred hospitals. (He really doesn’t like it at the royal).
We have to be back at the hospital before 8am tomorrow, he has appointments with the respiratory doctors and will sometime during the day have his operation to have his Gall bladder out. We also have an appointment with the transplant team to be given more information (we are already in information over load) he should only have two more test to go.:-)
be good stay healthy

Saturday, October 23, 2004 4:42 AM CDT

Friday
Jacob had to be at the hospital at 3pm to have platelets today.

Saturday
Jacinta took Jake and Ryan out for the day bowling playing pool and fishing
They all had a terrific day.
Be good stay healthy

Wednesday, October 20, 2004 6:01 AM CDT

Busy day again today. Jake had to have bloods done before he had to go down for his hearing test .His hearing is fine a slight loss in his right ear but nothing to be concerned with.
Good news today Jake has “neutrophils” ;- ) ;-) ;-) They have finally kicked in
Then off to nuclear medicine (sounds impressive) he had to have radio active trace put into his cannula to check his kidney function (they even used a Geiger counter to check his radioactivity) he defiantly is going to glow in the dark especially as he has an other C.T booked
His ultra sound was cancelled so will be rescheduled. He has a heart echo scan on Monday so they might do it then. He had an E.C.G today also. I haven’t any results as of yet maybe have them all Monday or Tuesday.

Little Jackson was at the hospital today. He and Jacob are going to be neighbour’s in the bone marrow unit next month. Jackson had his third birthday yesterday ;-) (Jackson’s from the mater to)

After the hospital, Steve,(the pilot that has been trying to take Jake for a ride in his BI plane all year) came to the shop and gave Jacob a model of a plane and told Jacob all about it he was wrapped. it now has pride and place in his room at home ;-).

So far we have dates for the gall Bladder operation 26th of October
Start irradiation on the 8th of November 2x a day for five days (Jon’s Birthday)
Bone marrow transplant on the 15th of November (our nephew Luke’s birthday)
As far as we know these dates are pretty much firm it will depend on how he recovers from the gall bladder operation and how his counts are.
Here’s praying he keeps as well as he has been that last few weeks
Be good stay healthy

Quote of the week : Steve he said to Jon he has been reading up on Bone marrow transplants “you know that bone marrow stuff is some scary Sh@*!”
I think that puts it exactly the way it is ..
Yeah good on ya Steve ;-)

Thursday
People constantly amaze me with their generosity and kindness.
Jacob received a package today from make-a-wish. Someone from the “Rotary Club’ gave Jacob the set of “The Lord of the rings” books they gave them to Nicole from ‘make-a-wish” and asked that they be sent to Jacob, He will be doing a lot of reading when he goes into lock down ;-)
I wish I could Thank them personally. I hope to one day be able to be as selfless as people have been to us since Jake has been sick. if there is one thing good that could of come out of this rotten leukaemia is I have had my faith in people restored The world really is a wonderful place.;-).
Jacob also has the most wonderful Uncle John (my Brother) we can never Thank him enough for everything he has done for Jake. (love you our John) ;-)

Tuesday, October 19, 2004 5:30 AM CDT

Tuesday 19th/10
We had to be at the hospital by 8.30am. Jacob needed platelets they were down to 4
He has to have pre meds before the platelets. They must have given him extra phenergan as he slept most of the morning he had to be woken up for his L.p and chemo we left the dayunit at about 1.30pm
I thought I was clever today and took Jake’s script down to pharmacy at 10am knowing that I would still be at the hospital after lunchtime 1.30 I went to pick up the meds and you wouldn’t believe it they were still not ready I had to wait 20mintues ;-(
Chloe’s nana and Dad rang today to say hi. it was so nice to hear from them. Chloe is doing really well ;-)
Jacob was so tired tonight he was in bed by 7pm,he has another busy day at the hospital tomorrow.at least we get to go home ;-)
Be good stay healthy

Friday, October 15, 2004 3:10 AM CDT

Friday 15th October
Jacob had to be at the hospital by 8.30 for platelets before his L.P, B.M and chemo today.
He was supposes to go down at 11am but was called for early (10am) they had to rush 2unit’s of platelets through so he could go down.there wasn’t any beds on banksia ward today so we had to goo to Maconnal ward the rooms were roomy and bright with a view of the park it made a pleasant change to have a nice view.
Libby and Kim (nurses from the mater) popped in to visit Jake today (they were lecturing at the hospital) it was a wonderful surprise to see them both Jacob was really pleases as he has missed all the nurses and Dr at the mater. They gave him a cute teddy bear (it was still in it’s plastic so he can take it into lock down)
He was starving when he came out of surgery today.lukily I had packed munchies today. He ate cheezels a pear ,fruit strips, teddy biscuits. Glass of coke a cup of tea and would of eaten the cup too if he wasn’t released ;-)
We had to go to pharmacy to get more drugs before we could go home and had a ½ hour wait (I will never complain about how slow the mater pharmacy was ever again ;-) so off to the café we went Jacob pigged out some more (he wont have to go on TPN for a while ;-) on the way home from the hospital Jacob informs me he is still really hungry. luckily I had frozen pizza in the freezer at home (and he isn’t on steroids) ;-)
We have the whole weekend off from the hospital. Bloods Monday we can do that locally. Tuesday another B.M, L.P and chemo and platelets Wednesday he has more tests and an ultra sound so that will be a busy day ;-)
Be good give someone special a cuddle today ;-)
P.S give a thought to our fire fighters, fighting the bush fires in the southeast our Niece Kye is one of them
My they all come home safe and sound.
p.SS
Dr anthony rang tonight Jacob has to have bloods done tomorrow his platlets are still very low and may have to have more on Sunday (bummer ;-(

Tuesday, October 12, 2004 5:03 PM CDT

Sunday 10th October
Jake was allowed home for a few hours again today. Ryan, Jonathon and Jake spent the day watching movies. He was very tired so we had to return to the hospital a few hours early he needed platelets so had them during the night.

Monday 11th October
Jake slept well all night. He was well all day and even did some school work ;-) The doctor said today if Jacob starts to eat more he can come off the TPN and Lipids tomorrow ;-) he still needs to put on more weight he is up to 46kg so has put on almost a kilo this week ;-) the doctor also has given him permission to walk up to the lifts and to go out to the lawn area down the hall way with his pole. Jacob has been feeling a little stir crazy stuck in his room and this will prevent all the problems he had with his legs last time ;-)

Tuesday 12th October
Busy day Jake had his B.M and L.P and chemo today, as well as more platelet .The Doctor came in at 1pm and said we could go home until Friday morning (8.30am). He has to have another L.P and more chemo (in the spine) We had to wait until the doc’s did their rounds only problem was they didn’t get to Jake until almost 4pm so it was a mad rush to get to the pharmacy (they close at 4.30) to get all his new meds we didn’t get to leave the hospital until after 5.30pm I was surprised he was allowed home as he has had no neutrophils for over a week
Still we are home for two whole days ;-) ;-) ;-)

Prayers for little Elliott’s family and Little Hannah’s family both have joined the angels

Saturday, October 9, 2004 6:40 AM CDT

Thursday 7th October 2004
Jacob was paroled from the hospital for a few hours today. We stopped at the pet shop and brought 2 new fish for his tank and a new collar for Bonnie (she lost hers) Jake and I watched a movie and both fell asleep
It was nice to have a nap without people walking in and out all day (no rest in hospitals).
Jonathon came home from work so I walked the dogs down to the dog run and Jonathon drove Jake down
We watched the dogs play with other dogs at the run for a while Jacob was tired so we had to go.
Jake had to be back at the hospital at 8pm.

Friday 8th of October
Jake had his L.P and B.M today along with chemo in the spinal cord. He was lucky to be on the early list and was down they’re by 8.30am and back in his room by 10am.Ryan wagged school today and turned up at the hospital (not happy Jan).
Jacob is very down today. He wants to go back to the Mater he doesn’t like it at this hospital. The staff are lovely but not the same as at the mater they don’t muck around with the kids and the Doctors are soo serious.
Dr Ram rang the Hospital today to say hi and to see how Jake’s doing also Linda the head nurse rang later in the day to see how we all were and to just say ‘Hi”. I thought that was so sweet of them as they are both so busy at the mater without ring me at the Royal, Ram said to tell Jake he misses him, he has no one to tease without Jake there. ;-).
Saturday 9th October 2004
Jacob slept well last night and slept in until 9am this morning. He and I curled up on his bed and watched D.V.D’s until Ryan and Jonathon came to the hospital, the boys played a board game and on the computer for a while Jacob’s spirits are better today. Around 6pm tonight the hospital decided that Jake could go home for a few hours tonight he has to be back at the hospital at 10pm (wish they had of said so earlier we could of gone to Ryan’s presentation night) we grabbed some videos on the way home Jake fell asleep by 8pm we will have to wake him soon to return to hospital ;-)
be good stay healthy
Could everyone please send special prayers and positive energy Nickie’s way (Jayden’s Mum)
She is missing her little man so much her heart is breaking .We are all praying for you Nickie
And are here if you need us
.

Monday, October 4, 2004 7:04 AM CDT

Sunday 3rd of October to 6th october keep scrolling down i have added more.
Jacob had a good night; His temp rose to 40 degrees today but broke by lunchtime. ;-)
He had a good day sleeping on and off most of the day. He went for a walk down the hallway and had a bath. Tonight he ate a hot dog and had a cup of tea.
Jake tried so hard to stay awake to watch his “Roosters” play the ”Bulldogs”. Thankfully was asleep and didn’t see them loose ;-( he will be crushed tomorrow when he finds out ;-( for a change Aunty Leonie was going for the same team, so there were no teasing phone calls tonight (could be why they lost?).
Thank you to Michelle (neighbour) who has been cooking tea for the Kids for us you have know Idea how much this act of kindness has eased my mind x x x x x
Be good stay healthy.
 * * * * *

Monday 4th of October
Jacob was awake before the crack of dawn this morning hungry and feeling better then he has in days ;-)
He wanted fruitloops for breakfast (I know, not the healthiest of breakfasts) he sat in the chair for a while then nodded off to sleep for a couple of hours.
Bob the builder (Joseph) jenny Alan and babe came to the hospital today to visit Jake he was so happy to see them.they spoilt him rotten with soccer mags “Tim Tam” biscuits and pez . (Last time he was on chemo he craved them I couldn’t believe they remembered) he was up to a walk to the playroom and watched the little ones play .Joseph found all the earth moving type toys and was very happy. (Where they all were hiding I have know idea ;-) the visit really boosted both our spirits. And my waist line ;-) he even played card with “Kate” the o.t.
Jade and Douglas visited the hospital tonight also Jake was asleep so they didn’t get much of a visit with him.we had a lovely visit though in the parents room.
Jacob has another lumber puncher tomorrow and chemo (in the spine) praying hard the blast cells are all gone. Also we have a tentative date for when he has his gallbladder out 28th of October hopefully his count will be good enough then. He started on the G needle today.
be good stay happy say a prayer for someone special ;-)
Tuesday October 2004
Jacob had a lumber puncher and bone marrow biopsy today and to have chemo in the spine, he also had to have chest x-rays.
He had a good day with a lot less pain hardly using the phental bolus,
He was given another rug today (he got one last week too) this one has a dragon on it it’s called the Scottish dragon (goes with McLeod ;-).
Aunty Leonie rang to say hi tonight.
Jacob’s rooming with a boy named Bevon now they are getting on really well, both Jacob and Bevin were watching the wonder factory channel tonight and entering compition bevin won two prizes.
Be good stay healthy.

Wednesday 6th October 2004
Jacob had another good day today pain wise he is no longer on the hard stuff back to good old panadol ;-)
He had a full day of tests first was another c.t scan then lung function test, then the work up to the full body irradiation that took up most of the day he will start irradiation treatment 2xday on the 29th of October. He will then go into Lockdown (isolation) for as many weeks as it takes to get him well he will be a very sick little puppy for a few weeks before the bonemarrow can be infused and hopefully will recover quickly from there. Jacob’s very positive about all of this he knows he will get really sick again but just wants them to get on with it all. He has been making a list on what he wants to take into isolation with him.
The people doing the work up on Jacob thought he was wonderful .he had to sit perfectly still for long periods of time and couldn’t even scratch, they finished the work up long before they thought they would because he was so still I don’t know how he did it. Jacob sick sense of humor came into play at one stage they had to make a mask for his face (for the radiation) it’s white mesh type of material Jake goes “silence of the lambs. I’m not an animal ,I am a human being” he really cracked up the women doing the tests ;-)
Jake was let off all his I.V’s today for a while so we sat out side and had a cupachino it was nice to get off the ward for awhile.
Jacob and Bevin played the quiz games on the hospital t.v Jacob won a prize tonight ;-) he is feeling well
He is having a blood transfusion tonight and platelets tomorrow he might be allowed out for a couple of hours tomorrow so he will be able to come home to see Bonnie and Bejay.
Jacinta has been wonderful and has stepped in keeping the house clean and taking Jacobs dog to obedience classes for him Jonathon and Ryan are at the hospital a lot keeping Jacob Company I have some very special Kids.
Thankyou “Angels of hope” for the crochet angel you sent Jacob ;-)

dose anyone know how i can out more then one photo on the front page?and how to have his sux banner on?

Thursday, September 30, 2004 3:57 PM CDT

Scroll down I have added updates
Wednesday 29th September 2004 - 1st october, 2nd october
Jacob had to fast today he had to have surgery to have his central line in.by the time he got to surgery his gall bladder was giving him hell and he was throwing up bile it was the first time he was scared to go in.
I went in with him while they put him to sleep they couldn’t find a viable vain in his arms so had to go into his feet he was anxious about that as it hurts more in the feet, 2 & ½ hours later he was back in his room no one bothered to let Jon and I know that he was in recovery they said they couldn’t find us but three nurses and a doctor told us to go out side and they would ring the mobile (can’t have mobiles on in the hospital).
He was in a lot of discomfort (he has never had pain after having a central line in before). And they have started high dose chemo.his spirits are still low the kids aren’t allowed out of bed at all when they have chemo running as Jake has five days of full on chemo I don’t know what damage that’s going to do to his legs after all the months of him working hard to get them strong again, also his spirits.
We had a meeting with his new doctors they are so negative if they say the word “if” one more time….
Jacob’s in for a hard long ride he needs to stay positive we do not need negative people around him I ‘m thinking of putting a sign up negative people keep out ;-)
There is only one phone for all of the ward. the parents answer the phone and find whom ever it is the caller is asking for, then while you are trying to have a personal conversation in the hall way the nurses walk pass and look at you as if you are on there too long. So don’t ring the hospital I wont be able to talk and we are not allowed mobiles. There are so many rules. (I know it’s nessarsy but it’s hard enough being there) also no Internet so I don’t know how often I will be able to up date Jacobs page.
Be good Pray hard
Thursday
Jacob has spiked a temperature and is pretty well out to it today he slept on and off all day. one day of chemo down 4 to go this round
Pray hard he stays strong. Become a blood donor
Friday 1st of october 2004

Jacob had a much better day today, they are really on top of his pain management so he slept a lot of the day
He was able to shuffle off to the toilet (Jonathon holding him up) the toilets aren’t in the rooms so he had to walk a little way up the hallway. (Not far) he was also able to have a bath. He felt heaps better after his bath (smelt better too ;-) Jonathon is staying with him at the hospital tonight to give Jon and I a break.
He had to have x-rays done on his chest again today he is still spiking temps but only got up to 39.3 it could be the chemo or he may have had an reaction to the blood transfusion he had this afternoon.
The doctors are thinking of taking out his gall bladder as soon as his counts recover and before his next round of chemo he will have a very narrow margin of time for them to do it he also has something in his sinuses maybe some disease but they are pretty sure it’s not aspergillus (please God). And praying it’s nothing serious at all. We have had so many doctors in to see him today I have lost count. His spirits are better today it helps to not be in pain, though his new favourite word at the moment rhymes with “it” starts with sh..;-(
Jacobs sharing a room today with another Jacob (he’s four) so it’s big Jake and little Jacob. little Jacob was on the news tonight the mango king came to the hospital and gave the kids mangos ;-)
be good stay healthy become a donor ;-)
Saturday 2nd October 2004
Jonathon said Jacob had a good night last night. Jacob said he couldn’t wake Jonathon up a couple of times but he had a pretty good night.
Jake was pretty down today. He cried for the first time in 11 months, all I could do was hold him and let him cry, I couldn’t say anything, what do you say, when you know your child has to go through hell again to get better, Especially when he knows what he is in for also?
Aunty Leonie and uncle Don visited today. Jacob’s face just lit up when he saw them. They always seem to be able to cheer him
Jacinta Ryan and Jonathan stayed for hours today Jacinta sat on Jake’s bed and he had heaps of cuddles he was pretty much out of it but when he was with us he could be very funny. He was making fish faces. We were all looking at him wondering what he was doing.” What are you doing Jake?’ “I have no lips,” he said
Ok mate why do you have no lips? “They must have fallen off!’ He was most disgusted when we all laughed at him ;-)
He spiked temps again 39.5 he has a bug in his central line (already) he is on three different types of antibiotics and needed oxygen his stats were low and he is very sleepy.
There is a little baby Elliot he has A.M.L. Elliot isn’t expected to make it through tonight. My heart goes out to his family and pray he isn’t in pain, also there is Jaxson he has A.M.L as well (only 16months old.) A.M.L is suppose to be an adult Leukaemia how are these tiny babies coping with the high doses of chemo that is needed to treat A.M.L?
LEUKAEMIA SUX
be good stay healthy

Tuesday, September 28, 2004 3:27 AM CDT

27th & 28th September 2004
NEW HOSPITAL
We had to be at the Mater by 9am to pick up Jacobs’s files and transfer over to the royal by 11am
He got heaps of cuddles from the nurses and Ram as did Jon and I.
The royal was a total culture shock It’s so big the day unit is huge, Jacob met a boy his age (Cameron)
They played cards most of the day then we were taken down to Paterson ward (they didn’t have a bed for him on the oncology ward) we shared with four other kids and their families. We have met some lovely people Cameron’s mum took us up to banks ward (were Jake will be) and showed us around, we had been so spoilt at the mater with the lovely parent room and teen room for Jacob and Ryan to escape into it’s going to take a lot of getting use to.
Jacob’s spirits have been low, but he had Cameron and Ryan to play cards with again today. We haven’t seen any doctors other then the first hour we were there yesterday Jacob was suppose to have his central line put in today and start chemo but he wasn’t put on the surgical list The doctors at the mater had told us everything was organized from their end but the royal don’t seem to have their act together I was not a happy chappy. 2pm today we finally get to see the head oncologist she didn’t talk to us but sort of talked to Jacob. They said we could go home for the night after we just moved up onto banksia ward. I’m starting to feel like a yo-yo.
jake has to be back tomorrow by 8am (that will be fun in city traffic)
he is suppose to have his central line in at 10.30am (I'm not holding my breath)and start chemo tomorrow we think.

Friday, September 24, 2004 6:00 AM CDT

Friday
Jacob had a pretty good day today he is very optimistic and is treating all of this as a new adventure
He is actually excited about going to the other hospital to check it all out. He asked ram if he could be transferred to the royal in an ambulance because he hasn’t been in one. Ram just smiled and shook his head I’m sure he thinks Jake’s nuts ;-)
I had a long chat with the O.T today told her about how neglected I thought Jake had been by them she like everyone else didn’t realize that the kids that seem to be copping really need as much as the ones that make a fuss and don’t cope she said things will change (to late for Jake) but to my way of thinking it’s the quiet ones that need the attention the other kids are venting their frustration as kids should do. So I figured we are leaving here so I can speak my mind.
The rest of the staff is brilliant I wouldn’t have swapped any of the nurses. Especially this week I have had heaps of 3am chats lots of cuddles (as I’m totally insane at the moment;-) and properly not very rational (hence the last couple of entries)
Jake had to have another cat scan today he has been eyeing off a scorpion toy (from the yowies) that was on the wall in the x-ray department he has been teasing the people over there for months saying he was going to pinch it, today after his scan they gave it to him ;-) ;-) he was so happy.
Auntie Leonie visited at the hospital today Jacob and she tormented each other over the footy on Saturday night Leonie is going for Brisbane lions and of cause Jacob is going for port Adelaide (where our Jacinta was born) we will see Saturday..
Be good stay healthy
GO THE LIONS
Thankyou everyone for your messages they give us strength
;-)
Saturday th September 2004
Jacob had a good day today no tests or temperatures so we were able to take him home for a few hours.;- )
He cheered up heaps at home playing with Bejay and Bonnie (dogs)and to watch the footy (we have a teddy bear that plays the lions theme song everytime the lions scored jon played it. the teddy went very quiet 1/2 way through the game cause jakes team won ;-). we thought we had to be back at the hospital at 5pm as usual but they said (after we were already there)we didn’t have to really be back until 10pm so we went to the pictures at southbank and saw “A sharks tale.” Jacob had a good laugh it’s quiet a funny movie.
Jon stayed the night with Jacob I had a whole night of sleep (yeah)
P.S Jacob's port Adelaide team won the grand final.
Be good stay healthy
Sunday
Joseph’s (bob) parents (Jenny and Alan) came up to the hospital today. To have a bbq and say good bye to Jacob. (It was so kind of them as they had a rare weekend away from the hospital) some of the other ward parents and nurses joined us, it was lovely out on the verandah just eating and chatting.
Jacob, Ryan and Jenna played cards most of the afternoon they all got on like a house on fire, the doctor decided that Jacob could have a night at home Jacob was very happy about that but poor Jenna had to stay in as her meds hadn’t turned up ;-(
We go back to the mater in the morning to get all Jake’s files then off to the royal by 12pm for tests.
Still no one has been to talk to Jacob about everything that’s happening.
He has been talking about Daniel Jayden and Jarred. He also has said what he wants done if he doesn’t make it. I guess Its up to Jon and I to try and council him as none of the “professionals” seem to think it’s important I wish we didn’t have to return to the mater tomorrow it’s a mega pain in the @*BR>Be good stay healthy