latest-updates

A YEAR OF OUR JOURNEY OVER.....

Sun, 08 Apr 2012 09:16:59 +0100

A year has now passed since that day our lives where turned upside down......

Zoe underwent her operation last thursday to have her port removed, aswell as a Bone Marrow aperiate and Lumbar Puncture while under in theatre.

All went well, Zoe kept us on our toes by not waking up when expected and throwing up......... but besides that is done and dusted and so ends a year of this phase of her life.

Her blood counts have been down so her dosage has again been adjusted. Her White cell counts are too low. They want it to be between 2 and 3, it's only 1.6. Her netrophils are down to 0.7 which are not where we want them.

So hopefully this new dosage will kick into her system in the next week or so and counts will be better.

Zoe is now on 2 weeks holidays from school and has too much energy. The old port area is sore, but not slower her down a great deal.

P.S. THANK YOU BBQ went great and we thank all those who where there and marked this important milestone with us :)

ONE YEAR ANNIVERSARY!!!!

Tue, 20 Mar 2012 00:50:11 +0100

This occasion will be marked with a THANK YOU BBQ (mammoth sausage sizzle) in Wagga to thank all those who have supported Zoe's fight against Leukaemia.

Her port removal operation will be taking place in SCH on 5th April, a year to the day she was diagnosed!

Zoe is VERY EXCITED to be going on another plane trip (thanks to our Country Hope Charity Wagga). (her actual first/last was the day she was diagnosed). Daddy will be accompanying Zoe and mummy will be happily keeping her feet flat on the ground :)

A big loss for our girl.....

Fri, 02 Mar 2012 22:30:25 +0100

Zoe's best friend Sophie passed away on 9th February, just 4 days shy of her 7th birthday.

Zoe has encountered loss of relatives only once before, but never a friend of her own age and someone she was very close too.

Zoe surprised us, as usual, with her maturity with the loss of her dear friend and with attending the funeral. Our hearts broke for her and for Sophie's parents and her two brothers.

Sophie got Zoe through 10mths of her treatment in Sydney. She made Zoe feel strong and alive and we are sure Zoe wouldn't be where she is today, without Sophie by her side those months of treatment. We are thankful for the friendship and love she had for our girl.

Life is precious and having this little girl in our lives has changed us forever. We will remember Sophie with a laugh of her silly ways and sayings "blah blah blah"..........

ZOE UPDATE-

Had bloods 29th feb and her numbers have gone down. She has slowed down a little over the last week but still has so much energy and is seemingly healthier than ever before.

Platelets- 128 (down from last months 255, no trans till round a low of 20)
Hmb-114 (down from last month, but no transfusion till it reaches 60)
WCC- 1.5 (down, but still between the 2-3 the dr's like)
Netro's- 0.9 (down)

Clinic appointment in Wagga next Tuesday with visiting oncologists from SCH in our Rural Clinic at Wagga Base Hospital.

LIVE THAT LIFE!!!!!!!!!! - BACK TO SCHOOL AND BACK TO ALMOST NORMAL!

Fri, 03 Feb 2012 11:42:38 +0100

As much normal as it can be for another year anyhow...........

Zoe busted out of our home's doors with backpack upon her back and smiling proudly............ back to school, back to her friends and back to start a life of normality - as much normality as we can have for another year anyhow with still following chemo treatment.

Our 6 yr old has been to hell and back with a survival rate that dropped so low over the past year it looked like an infection might have taken her chance to fight........ but fight she did with all she had, her body gained strength again and after what seemed like forever she was "kickn the Leukaemia's arse" before we knew it!

Zoe has gained strength and courage and watching her during treatment with what we thought were big hurdles in our own lives, as parents, seem so miniscule.

Parents used to be the teachers for their children......... well it is in deed the other way around. go back to being a child,... remember how you viewed life outside....... when you didn't have responsibilities like paying thebills to keep a roof over your head or having a relationship to work on....

Parents used to be the teachers..... children are our our teachers! Watch your children...... watch the way they look at things in their everyday life, the way they feel and see things the little things mean so very much, a smile, just spending time with each other....... we can learn so very much from our children.

Life is short and so many things we allow ourselves to get the better of us....... in the big picture - the picture a sick child faces - means nothing in the big picture.

The toilet roll put on the wrong way, work is upseting, that person gets on your nerves, the bed not pulled up neatly, that little bit of weight you've gained, the clothes not ironed, all the dished not done, that thing annoying you yesterday, not having your hair done perfectly as you walk out the door in the morning, that fact that it is raining outside......

Don't be too busy to notice that friend or family member and have that cuppa tea or take that five minutes to read your child a book before bed......................

You have air in your lungs, you have a life to live..you are only given just this one... so go out and live it. Tell those close to you each day somehow, just how much they mean to you. Be thankful for the fact you have that day you have woken up to and those loving arms you have holding you at night or/and those kids to wake you up at the crack of dawn....... come rain or sunshine - live it!!!!! :)

HAPPY NEW YEAR - A BETTER YEAR AHEAD!!!

Sun, 01 Jan 2012 11:42:03 +0100

Hope all those following Zoe's Journey had a lovely Christmas with their family and friends. Our family wishes you a very HAPPY NEW YEAR filled with laughter and good times with hope you all live each day to the full!

We welcomed a new baby sister for Zoe on 9 December 2011. For those who don't know we didn't know, when Zoe was diganosed in April that we were already pregnant with our little girl! a few months in we found out the news and to which made this journey with Zoe even more challenging..........

Adam (Zoe's Daddy) and Zoe made it home only just the night before our baby girl came into this world!!!

Zoe is every bit the proud and happy big sister and has a t-shirt to prove it ha! She has looked forward to having a sibling for so long and baby Emerson has now completed our little family.

This new year has Zoe returning to school finally and starting year 1 ! She's very excited to be going back to school and getting on with life to some degree of normality - as are we all.

Our girl has taught us so much in the last year of courage bravery and how to laugh and have fun when you feel like things are bad - looking for the "rainbows after rain" is our motto and we have found so many in those 9 mths because of our little ray of sunshine!

Zoe remains in a preliminary remission, but we continue to fight Zoe's system to work properly.... and so the treatment continues.

She will have her port taken out, in an operation in main theatre in April, in Sydney and from there we cross our fingers everything remains smooth running to completion of her 2 years of treatment ........

We will keep adding photos and updates to this website as things come to hand so please check back for these.

Again, Happy New Year
Love Adam, Patrina, Zoe and Emerson x

BLOCK 4 CHEMO COMPLETED!!!!!! - but still not home

Thu, 01 Dec 2011 03:05:24 +0100

Zoe last chemo injection was on Friday 25 November 2011.

Zoe spiked a series of temps in those last few days and ended up being admitted to the hospital on 24th November and has been there ever since. Although they have now stabilised, her counts have dropped dramatically and because of this she has been stuck in the ward until they climb past 0.2.

Zoe has undergone 2 blood transfusions and 1 platelet transfusion since her 6th birthday on 26th November.

We have had a few hiccups from mix ups at Sydney, the 2 Dr's kept her on her "bactrim" when they should have stopped this. This med drops her count also..... so her body had no real hope in bringing up her counts while on this. It took the Professor to see Zoe this morning to say "she should have been off this"...................... rrrrrrrrrrrr

But all things aside we are praying for them to be home at some point Saturday as Zoe has a belated 6th birthday party planned for her here at home and so many people who are excited to be catching up with her.

We have so much to celebrate this Saturday, Zoe turning 6 and her reaching the "maintenance" stage of her treatment which is a huge deal on it's own.

Fingers crossed they get back in Wagga for her big party this Sunday!!!

Looking forward to Christmas 2011

Mon, 14 Nov 2011 08:15:18 +0100

Light at end of tunnel!!!!!!!! (after 7 months of treatment)

Mon, 14 Nov 2011 08:04:30 +0100

Zoes "quick stay away from Wagga" of two nights on 1 November turned out to be a 5 night ward stay in Sydney Children's Hospital. Zoe spiked a temp within minutes of returning to Ronald MacDonald House.

Zoes chemo was consequently put on hold for a week due to the temp and her sudden low blood counts that left her immuno-suppresant for the first time in a while.

Zoe enjoyed a week at home in Wagga with Mum, while Dad returned to work for the first time in months to try earn some very needed money for our family.

Zoe's blood test this morning set an all go for treatment again. Dad, Zoe and Nanna have returned to Sydney for a 2 week long stint away from home.

Praying very hard their are no setbacks in this part of her treatment, although it's high anticipated that there will be, as some of her chemo drugs have in the past caused her to spike temps...............

These next two weeks are very intensive with chemo each week day for the two weeks.

Praying our girl remains safe and well and strong during this time and both her and her Dad are home in time for her little brother or sister to be born on 9 December back at home in Wagga.

EATING UP A STORM!

Sat, 22 Oct 2011 23:38:08 +0100

Thanks to her steroids that thank god they start to taper her off from 25 October, Zoe is eating up a storm.

Reminiscent of earlier treatment days Zoe goes through her cravings/phases of particular wants/needs in food. We've gone through spiral and bow pasta with Neapolitan tomato and herb sauce, chocolate paddle pops, bacon, shepherds pie, milk galore! No we are up to rainbow paddle pops and back to curry chicken pasta.

She is weighing over 22 kilos now and round faced and happily fed belly :)

She has handled this sessions very well this last week and has another to go Tuesday 25th October and then hopefully home to Wagga the Wednesday 26th October into mummies arms :) She's been going out with Dad heaps and even had "ten pin bowling" viewed for today's outing - but we will see if she can keep the temps down (have been hitting 37.7 on an off last few days..... so we will see). She is full of spirit, which is so great to see. I can even see what i call the "old Zoe" coming out finally from this 7mths battle with Cancer.

Not only is it hard knowing what she is going through treatment wise, personally wise, for me as mum, it's hard to be 500kms away and not being able to be there for her and hold her in my arms. I think constantly of the life other near 6 yr old have and its still hard to bare at times. But you learn to "suck it up" and take the good moments and hold her through the bad moments the best you can. We know life will never be normal again, cancer has touched our lives and will always be a part of our lives. Its making life matter more now that it is part of our lives and gaining strength from its challenges.

But not long now......... we can see the light at the end of the tunnel and with new baby to make Zoe finally a big sister in early December...... this year will hopefully finish on a high note and next year will be one of looking forward and beyond with Zoe on Maintenance at home and not so frequent trips to Sydney and us at home in Wagga as a family together.

Going good!!!!!!!

Sat, 22 Oct 2011 20:00:32 +0100

Addition to this blog - Zoe port operation i forgot to comment on beforehand. Her Port had actually turned around and was able to be fixed and sewn into place an inch under her other access area. So there was no need for a new one to be put onto the other side, which made us all very relieved!

Zoe now home and doing well. So well she went shopping for xmas lights with Daddy yesterday without a mask and a smile on her face! And helped Pop set up some lights in his backyard after a bbq dinner last night :)

Zoes blood counts are brilliant! Her ANC (the ones when below 1 have her with mask on) are 7.8 !!!!!! The highest she has been so far is approx 1.2. Her platelets are over 390 !!!!!!!!! (normal ratio is between 150-450) and her red's are round 100 (going down but still ok).

She has had her first round of this 4th block and handled it ok so far. A little seedy in car ride home but no dramas so far.

She's back on steriods - so will have to seriously stock up fridge and cupboard!!!!!!!!!!!!!!!!!!!!!!!!! Shes now over 21 kilos and has even grown to 119cm !!!!!!! SHE IS GOING GOOD (almost afraid to write that... waiting for the tables to turn!!!!!!!!)

Zoe had Asparaginaise (asp) leg injection (chemo) yesterday at the Wagga Base Hospital (only one they can do now, as the one person who can give it is going on 2 weeks leave.. so this will mean longer stay at Sydney so she can get the next two of these done with all other chemo treatment!! Just when Adam was going to start working more and bringin in some money!!!!!! rrrrr)

They should head back to Sydney next Monday and wil be there till round 26th October, home for a few days, then up there again the following Monday if numbers are good.

The last two weeks of this block will mean a constant 2 weeks of treatment with some form of chemo each week day!!! Nana will thankfully be going back up with them to help Adam and Zoe at that time.

Mummy will be anxiously be waiting at home and trying to take her last 10 weeks till Zoe's new brother or sister arrives, easy!

Zoe's number might drop as this block is completed we are told. So the aim is to be on maintenance for her birthday 26th November and going well - so fingers crossed she gets to celebrate her birthday at home in Wagga and not in a hospital!!