2nd session for block three done

ALL DONE! Zoe has now completed the chemo part of her journey !!! We gave her the last dose on 13th May 2013!!!

We took a couple of weeks away from Wagga and went to Sydney Children's Hospital for her Bone Marrow Asperate and Lumbar Puncture procedure.

While in Randwick we hung around a few days to ensure Zoe was feeling 100% and caught up with Zoe's favourite Captain Sidepony character from the Starlight room and then headed to Wollongong for Adam to see her first ever footy match with Zoe watching the St George Dragons beat the Eels!!!! We then made our way down to Bateman's Bay area and stayed at the lovely Rosedale Ronald McDonald House Holiday Retreat for a much needed rest and relax.

We visited Mogo Zoo - Zoe loves animals and the Zoo is so perfect for that unclose feel! Emerson saw her first "gigi" and couldn't figure out why it was so tall!!!! (She has a much loved stuffed giraffe toy she sleeps with and plays with all the time - named "gigi" - we had a lovely time!

We visited Zoe's Aunties and Uncles while down in that area, as well as spent some time with Susan and Ralph and family (Sophies family). We did some sight seeing via driving around on those rainy days (there were a few!!)

The next stage of Zoe's journey is watching her closely over the next 3 months particularly - but over the next 6 months in total - after this time Zoe can be re immunised - as the chemo has wiped her system from protection against measles, mumps, chicken pox etc.

The next three months is the phase where Zoe's system ttys to cope on its own and her blood to work correctly to do everything a normal body's blood system is meant to do………. this is the stage in which her system can relapse and so we wait anxiously………..

zoe says thank you 2 YRS.mov
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22nd APRIL 2013 - WE CAN SEE THE LIGHT AT THE END OF THE TUNNEL!

Zoe has her check up last week and all good apart from Liver function still something that needs to be watched as in previous check ups.

13th May will see Zoe's last chemo dosage administered and then Tuesday 14th May Zoe will have a Bone Marrow and Lumbar Puncture op at Sydney Children's Hospital. We will then wait for a few days for her to recover and off on a family celebration holiday.

As we've said before there will be regular on going check ups each month - with still every 3 mtgs to SCH for clinics

One thing weighing on our minds is that the 8mths after chemo finishes is the time to watch for relapse. Zoe's subtype of ALL is one to be watched carefully.

So 'wrapping her up in cotton wool" is something that will be even more so - which is heartbreaking for us as parents as we see Zoe struggling socially with making real connections with children her own age and making real close friends.

Sadly we see her wanting to play and interact as "normal" but sadly she only seems to have this with close cousins who understand her illness and have seen closely what she has gone through.

We will overcome this barrier that Cancer has caused our life as other obstacles its thrown our way.

Cancer has been beautiful in many ways - we realise life is precious (not that we ever took life for granted before) and value every single little thing in our lives and have found that network of people we can rely on when times get tough and down…… they have been there in our little milestones along the way and will be right beside us to hug us as we see the end of this part of Zoe's journey, and they will be there as continue the journey till the very end and for everything we might have to endure before hand.

We THANK everyone of these people from the bottom of our hearts - without you all we would not have got to this point and we will be eternally grateful xxxoooxxx

FEBRUARY 2013 - Beautiful Zoe had a check up in Sydney last week and all is going ok - Liver function still something all is watching closely - but so far so good. Zoe will complete her Chemotherapy in May with a Bone Marrow and Lumbar Puncture op in Sydney Childrens Hospital….. from there we will continue for 18mths with monthly blood tests and Dr's checkups with a trip to Sydney every 3 months…. and so the journey continues for our brave 7 yr old. So very proud of her "kicking Leukaemia's arse!!"

Country Hope from Cut Above Productions on Vimeo.

"Cut Above Productions" and "Country Hope" have put together a DVD to try to gain sponsorship to help families like ours at their time of need with seriously ill children.

We gladly said yes when approached to put a face to this cause that we would be absolutely nowhere without. Country Hope are a charity helping our family - so they are very very important to us !! :)

Bloods done 24 August

Hmb (red blood) = 122 (good)

Plt (platelets) = 221 (good)

WCC (white cells) = 4.9 (Way too hight - Oncologists want it between 2-3!)

Netrophils = 3.2 (too high - Oncologists want it between 1-2!)

Glucose 6.9 (had this done as she was extremely thirsty and craving salty stuff - bit high but hoping dosage change will change this number)

WCC and Netros if not kept within their expected range puts Zoe at high risk of relapse.

Having another blood test to be done tuesday 25th Sept to see what dosage change has done.

Zoe has been sick at home for 1 1/2 weeks with viral infection - but we've managed to keep her out of hospital by a ".1" in temp. She's getting better everyday and hopefully will make it back to see her school friends sometime by end of this week.

Her hair is now affectionately known as "goldy locks"

Zoe is doing well.

We had a COUNTRY HOPE volunteers/carers talk on Saturday at Borambola that went really well. Raising awareness for the important job they do for families like ours.

We also had a blood bank event that afternoon where Zoe was recognised for her interview last year on the importance of giving blood.

more updates soon…...

DID SOMEONE SAY HOSPITAL??????

Zoe spend most of Monday afternoon and late into the evening at Wagga Base Hospital with a temp spike of 38.4.

After a canulla and series of tests they decided to send her home, where she was away from other sick children and safe in her own bed at 10pm that evening.

We went back the next morning to find out more of the blood results of which revealed a drop in her numbers due to a recent change in dosage - which is suspected for the temp spike. By Wednesday we had the full blood results (cultures) of which ruled out of viral infections.

Zoe spent (missed) the last week of her school term, spending the time at home with bad hayfever/sinus causing her to have a sore throat, cough and blocked up nose. She is off her food and not wanting to do a lot today - so Mummy is on watch for another temp!!!!!

A BREAK AWAY…………..

We had our first trip away since Zoe's diagnosis to YURANA HOUSE Ulladulla -"AMBERS HOUSE" - a holiday home for families with children with illnesses.

http://yuranahomes.com.au

While there we attended Zoe's Uncle Bob's wedding at Bateman's Bay and enjoyed some long overdue catching up family time.

We visited Mogo Zoo were she got to pat a dingo and made friends with Lisa a zookeeper there. Zoe met Bubbles the Wombat and went on a train ride at Birdland and played (cheated!!!) during 18 holes of Putt Putt Golf.

We drove to Miilton and surrounds and enjoyed a little 'window shopping" together.

We caught up with our dear friends the Tillacks (Zoes dear friend she lost in February, Sophie's parents) and managed to have a lot of laughs.

We also had a small memorial at Mollymook, for Zoe's other Nanna whom she never got to meet, Zoe was around 3weeks old when she passed away from pancreatic cancer. Zoe still amazes me with her strength and understanding of such grown up situations...

We thank COUNTRY HOPE for helping us get away on a much needed break together as a family, away from hospitals for a change and able to "let loose" a little from being worried and learnt to smile more :)

http://www.countryhope.com.au

Some pics below of our little break away….. (look at Zoe's hair!!!!!)

Autumn……… Zoe is loving throwing the leaves up in the air and marvelling in the beautiful shades of red, brown, orange and yellow in the trees as the season nears it's change to winter.

Blood test due just before her Wagga Base Clinic visit on 29 May to check up on what's going on in that hard working body of hers! She's looking good with the odd coldsore on her lips and with so much energy - she's wearing us out haha! (that makes us happy)

Zoe is loving being back at school and doing very well considering the valuable time she lost in kinder last year.

Thanks to the RedKite foundation and ACADEMIC in Wagga, Zoe is receiving "catch up" tutoring each week learning important skills like sight words etc that she missed out while undergoing treatment last year.

Zoe has started Jazz hip hop dancing thanks to the big hearts of two beautiful ladies at a local dance academy. They put such a big smile on Zoe's face - and will be a good way to work off some of that excess energy!!!

2nd session for block three done

Posted by Patrina Roberts on Wednesday, August 17, 2011

Zoe's first lot of treatment for her block 3 ended with a very very sick girl. It has come to light that the batch given to Zoe and round 6 other children was a "bad batch" and all children ended up very very sick, as like our girl.

Zoe came good only the day before she was due to go back to Sydney, but has handled the 2nd session a lot better than the last.

Zoe has come down with mucositis, as side effect from the high dose methetrexate. This has left her with some sores mainly in her stomach which cause cramps and pain and now diarrhoea. We have a 'sample" in patholgy today to undergo testing to make known the cause of the diarrhoea.

With the musocitis, we can do nothing but treat the symptoms to make her comfortable with panodol and keep her fluids up and food up as much as we can.

She is not eating much and her weight had dropped to 20kilos the last weigh in at clinic. It is said that if she is 18kilos and under a tube up her nose would be looked into.

At this present time she is eating a little tomato and cheese sandwich here and there and two minute noodles. I am told this is good enough for the body to keep its strength and fuel. We just have to keep her fluid intake up just as much.

Depending upon the outcome from her blood work on Monday next week, we are due to go back to Sydney that Monday afternoon to undergo her three dose that Tuesday.

SOME GOOD NEWS - as of January next year "clinic appointments" will not be needed to be done in Sydney. It has become apparent that their is a 'need' enough with the amount of patients, that this part of treatment protocol can from January be done in Wagga, instead of Sydney. Meaning that only Lumbar Puncture and Bone Marrows will need to be on the odd occasion in Sydney.

We have welcomed this news with happy tears... as our baby is due on 9 December and this would mean less travel with a sick little girl, as well as a new born baby :)

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