update

we are all well
Alex had her last set of scans in October and still can see shrinkage in the remaining mass ( almost 5 year ago she ended treatment so good to see)
we have not done much at this point but Alex had Middle camp with Camp Quality in April

we got to meet some of the characters from StarWars with butts on bikes for prems and also Jimmy from Jimmy's Walk for Cancer,

we had a lovely week down at Bradley's Place in Victor Harbor thanks to CCA in July also, girls enjoyed time with family and seeing Kangaroos in the crisp morning air so relaxing and serene ♥

Girls school did the hairlarious day raising funds for CCA

Alex turned 10 (15th July) and 5 years ago we had been told that no treatment she would not have seen her 5th Birthday so special to know we are still a family standing tall against Childhood Cancer

After October scans and bloods have been told kidney function is lower than it should be so we got a referral to renal specialist Alex has slight damage to her kidney from treatment, at this point be are now in at renal every 3 months for bloods and scans just to monitor and if anything comes up act to slow down any more damage,  March 2015 we go onto 12 monthly scans for oncology though 😊

we also had family camp with Camp Quality this month a nice weekend away at Douglas scrub, fun but raw with the high emotions as we all spoke to Red Kite about our journey, which bought up more then we tell most about and hearing others stories even long term ones over 5 year gap

this is our year all out in one post but other news is we had Robyn diagnosed with Dyslexia a reading issue she is clever but can not decode words so now working on how best to help her learn her own way🔠
I am struggling with studies and looking for cord bit hard but will keep moving forward
hubby plodding along as men do with added stress

but it's nearing Christmas so positive and fun ahead even with bloods et,
want to take girls to see the magic cave and Santa yes my 10 yr old still believes in Santa 💖🎄🎅

Will post photos soon in another post with Xmas events added too

Health Scare

This Last week we had a scare with Alex she has had pain in her tummy when she needs to go to the loo. this is not good as she only has the one kidney and due to her history we had to get it all checked,
we had alarm bells ringing as it could have been a relapse but we were holding tight that it was a normal UTI, she had tests and they came back the first time clear, Ultrasound ruled out any thing that would suggest relapse but still no answers, today we went back and the Dr tested again and found acidity in her urine ( sorry about to much info ) and bacteria so he thinks it is a UTI and also her bladder is inflamed so we have her on Antibiotics to help her get back on track she is only 7 and a cancer survivor so we do need to make sure her remaining Kidney is OK and not at risk.

A big Sigh of relief and hope she improves now, but we do know what next if she doesn't get better by the full course of antibiotics

we are due back in the RCH in Brisbane next month for CT to be 100% sure

"also remember that this last week 3 years ago was when we watched Alex have her kidney removed and also found out about the inoperable tumor near the aorta, just lucky it didnt get to close to the heart so she si still fighting strong ♥"



"yes I have re done this as have had a few strange posts about this it is a child with Cancer she is a Survivor I am a crazy mum posting this but it is her journey, I do this so anyone with a child with cancer knows we all go through the good and bad days" 

flying kites in back yard

out front with kite

today 3 years ago

March the 22nd 2009 the Day I finally got into a Dr's a Sunday at that but we get told she has a lump (tumor) on her Liver and possibly just FAT!!! we are told to get in for urgent Ultrasound the next day asap on Monday, no instructions about this scan only asap, so today 3 years ago I take both girls to imaging for Alex to have a scan, we got sent away as Alex had to fast so we went window shopping for a little while, the sonographer does her work then gets up with a worried look and brings another person in to double check the scans, this is alarming me but I am staying calm for Both girls and trying to keep a steady head, they ask about a CT scan I was not asked to get one so they call the referring Dr and Alex gets a Chest X-Ray before we are sent straight back to the Dr with only the scans and nor report???

we are told by the Dr to go straight to the Mater Hospital in Brisbane as he suspected its definatly a tumor and we would see our little lady get very sick before she gets better ( no mention of Cancer as a word and still the liver) but we did understand what was happening and I was fighting to stay calm for the girls still.

while walking to the car I called home hoping to Catch Pete before he went in for afternoon shift but I just missed him so I called the mobile and he called back with-in minutes even before I had got into the car, we decided that he would come home and we would all go in together lucky the GPS on my phone works ok? we had no idea where we were going? 

at the mater we waited for 5 hours before we were seen again she was not urgent and in no real pain? once in the Dr said its a Kidney Tumor and excessively large so we were referred to the Royal Children 's Hospital as they have Oncology ( we now knew it was cancer 100%)  we get instructions to the next hospital and they gave us sandwiches and we were back on the road seeing Brisbane in the Night lights, 

the the RCH we had been referred to a specific oncologist and told he is one of the best (Dr Tim Hassall) he told us what he though she had and that it was on the verge of rupture which will make things 100% worse if that happens due to massive spreading so she was admitted straight away

sorry for the marathon page you can read  this back in May 2009 may be slightly different as aI remember more or forget details but it is still there like a reminder that things can change in a heart beat but I am so grateful to see my girls every day enjoying life to the max ♥

January 2009

February 2009

March 2009 before diagnosis

April 2009 after Alex was diagnosed and started treatment RC HB

time to go home April 1st 2009

hair loss started April 2009

Alexandria today March 2012

so today is burnt into my mind and every year I am grateful for what we still have, I would like to see no child go through what Alex has been through so we need a cure,

always let those you love know how you feel, we are only here for who knows how long and we never know what tomorrow holds for anyone.

Happy Harmony day to all for Yesterday as we celebrate diversity and enjoy all cultures ♥
Harmony Day is celebrated around Australia on 21 March each year. It's a day when all Australians celebrate our cultural diversity
Harmony Day

a look back to march 2009

here are 2 small videos I took at the hospital when we first got Alex's diagnosis
both girls have grown so much ♥♥
Alex was 4 years and 8 months and Robyn was 2 years and 2 months such a big change to see them before and now
Alex had her first Chemo a few days before this too :(





sorry these are done on my old Nokia N95 it died this year but was a great phone for awhile, still have a Nokia though for now

school notes

well today it was raining and both girls where ready for school/Child care ( My me day) so off we go all in rain coats etc  poor Robyn threw up just at the doors to the child care so well that stopped her going and I took Alex to school then. Robyn was fine later that day

I picked up Alex from school normal time it was sunny but by the time the bell rang it was bucketing down Lucky she has her coat but Robyn and mine were both in the car :o... Alex had a note from the school too
Whooping Cough is going around the school ( the dreaded children illnesses I have been worried about had struck while she is still waiting for tests and re immunisations ( 6 months from end of chemo is when they start to think about them and then only if all goes well ( in our case so far all is going wonderfully) so I now have to worry that she may have come into contact with this bug and if she starts coughing badly and gets a temp its hospital but if anyone in her class gets it its time off school for her too...


For those that have asked in the past, we are not in remission yet and will not be classed as that til we have been cancer free for min 3 yrs, and after 5 even better there is no end but we know she will lead a healthy happy life and well we will do everything in our power to make her life and Robyns the best we can :) (funds pending of cause as we do need to live too)

On a good note this made me ask questions I kept forgeting but also opened my eyes to what can be not good for us we are in maintainance mode and well its one day at a time...

we have been invited to a birthday night soon too looking forward to that and Make-a-wish should be back with info for us soon too may is not that far away for her wish :)

Scan and Dr's visit

well this last week Alex has had a sniffy Nose and a barky cough so tuesday I kept her home as was worried she wouyld get sick before her appointments today, but no change,

we headed in after dropping Robyn into Childcare for the day and we got caught in Brisbane peak hr traffic and ended up being 15 min late but I did call them to say we where caught up in the traffic and would be there soon. we arrived at the department with ease and waited around for a couple of minutes then was called in for the Ultra sound first alex was hungry as she has to fast for 6 hrs ARGH she did have sipps of water though they did the scan then sent us out to wait for the X-Ray which was a short wait then in and out quickly, but as we where leaving get told we have to get some extra stuff done with the Ultrasound so sit back down,

back in the waitring room is another oncology mum and child we met when we first came in their Daughter is in maintainance mode further along that alex but its great to see others at the end and hope they stay happy and healthy, they were waiting for the same tests (US and X-Ray) so we put them back :(  they call us back in to messure her kidney again as its now doing the job of 2 they wanted to make sure all is well, so then we get sent out poor alex had been Coughing the whole time and I was worried about her spreading germs. at the outpatience dept they isolate us just incase and I put a mask on her to be 100% sure she is not creating issues for others, they do bloods and port, then we wait as our appointment was for 2.20pm they got us through at 10.45am so that was great, alex's chest is clear but to keep an eye on her so she is happy about school tomorrow. we are booked in for the next CT on the 14th April (6 weeks) so went down to make the appointment and they say the sonographer wanted us back I asked about it as we had been back already this morning but they said yes again he wanted to douible check another area so we wait again , alex by this time had a roll and some cordial so her tummy was not empty but they where not worried the sonographer and their DR sat in on the Ultra sound and didnt really tell me much but now have me a little worried as

they had not sent any reports through to Tim (Our Dr ) so we have to wait til he reviews them at some stage???????I did find out how aggressive the cancer she has can be her kidney would have doubled-trippled in size in a day OMG that is fast no wonder they only remove a whole part no parts as if its exposed will spread through the body so quickly ( yes another stress to play in my mind ARGH)

 finally we get to come home, Alex sleeps and then sleeps more at home this is another worry for me as I think this is not her but she is herself now, I go get Robyn from Childcare and she has had a great day with NO accidents too so proud of her

so now we are on the waiting game to see if there is an issue with the Ultrasound or not but No News is good news :)

After a long day and not being 100% is a Strain on her but she is allowed to go back to school tomorrow ♥

***Added note I spoke to the teacher and we were not the first to complain so it is an issue they are dealing will thankfully as wow to being a bully in Prep ARGH ***

Back To school

Well after our few days at the hospital Alex was cleared to go to school today and now we know what will be our future when she gets sick... am happy to say being a small school a little less ( not much as schools are where infections etc start lol and shopping centres etc)

Alex was so happy to go and Robyn  went shopping and to a DCO open day :) we met some friends and wow does time fly when you are having fun hehe..got some freebees lol (pens Lots of Pens Thanks Robyn for that she just was a pen magnet lol)

also finished another assignment and got a HD was so thinking I had botched it but No did well :) so 1 to go then will look at my photography as courses etc that are around and maybe I can start a small business with that :)

♥ Home at Last♥

well sunday was a long day and night =[ i took Alex to DEM at about 6pm they had been told by brisbane we were on our way in... so had a small wait in the waiting room then into the cubical for the dr to check Alex and see what the next step would be the Dr was lovely she was also just from RBH so know how far we would normally travel, they checked Miss Alex over and her temps still stayed below 38 ( just) but that may have been due to panadol before we got told to go in. they finally did bloods and spoke to Brisbane oncology about what they should do ( we have finished Chemo in nov so was hoping all would be good and sent home) Brisbane wanted her watched incase the temp spiked so watched for 24 hrs at least then if it goes up antibiotics for 24-48 hrs ( full course)  so we had to wait around in DEM for awhile alex was Cold and shivering so she definatly had a fever but the temp was still 37.5 or just over!!!  finally brisbane called back and wanted her started on Antibiotics asap just incase so a drip was started alex napped and we waited some more... but midnight we got moved to a private room in the childrens ward and alex went back to sleep they took her temp and would you guess it  ( it was 40o) it had spiked like Brisbane had sort of forseen,

so luckily they had started antibiotics and now the waiting starts to see what it actually in as the cultures from her blood will take 48 hrs, I stayed with alex 2 nights and her temp finally started going down around 7pm monday night finally the bed was uncomfortable but I didnt care was so nice to just be with her as normally this is daddies part ♥  tuesday morning we had a visitor and seen Dr's they have told us as alex looks well and yes she was looking good ♥ that all test results coming in we could be home tonight...and on tuesday arvo Hubby took over as Robyn was getting feral and as we knew that we where waiting on blood cultures etc we should be all home tonight ♥I got home after lunch with Robyn and Hubby stayed at the hospital while I waited on the call to pick up Hubby and alex but OMG it feels good to be home,  but am still worried as this we thought was behind us but now know any infection we will have to be carefull about and that school is going to bring a few home... alex has missed 2 days so far and we will know more soon if she can go tomorrow or not but Robyn goes to Child care tomorrow so something to look forward too,  on a good note all alex's bloods that we got on sunday came back with good results so she has the counts to fight this and today she was so bright and happy she just wants to go to school lol.

I also went to the school teacher parent night which I forgot about then got the call I had been waiting for to pick alex up and have her home cultures all clear :)

now to see from The dr's if we can give her vitamins to help combat any new threats ??? as she is no longer undergoing treatment!!!

CT and Dr's Visit Wednesday

Well yesterday, Wednesday the 13th of January Alex had her CT Scan with Contrast, it was an early start for us all Robyn went into Child care for the day as I would be alone at the hospital with Alex and as we also had to 1.30pm to see Dr Tim. all was good except Alex has lost another 300g so not good but she is healthy and seams like so many others just has gone of normal food so will be supplementing her milk with pediasure to give her the added vitamins at least :)   we also are now off all meds WOOHOO no more making her take them hehe now she will only get panadol if she needs it lol OMG the small things that make ones day and today had a few lol♥ plus the contrast she drank with out any fight  my little girls growing up to fast :(...

The Dr has filled me in on the next step if the nodes start growing again as he and us would have loved to have seen them removed with the Kidney. but we have to wait and keep an eye on these nodes to be sure that they do not grow and IF ( I say IF as we pray they don't) we will be looking a surgery again to try removal or part removal but that is something I do not want to think about right now.....

on our way home Alex wanted Hungry Jacks so I stopped at the one on the way home in Brisbane and the manager remembered us and gave us our meal free ( I didn't expect this was so nice ♥) he also asked how we are doing and wished us a belated happy Christmas and New year how nice can people be ♥

Robyn  enjoyed her day at Child care and is now going every Wednesday something that will hit our pockets but will be good for her and for me :) I can not believe Miss Robyn is 3 in under 2 weeks :o

we have had a few fights with the girls too Monday and Tuesday Miss Robyn pushed Alex out of the trampoline this being the 2nd time Alex has fallen out and hurt herself this time hitting her head and grazing her back so I was on watch that night for concussion etc but she was ok.

Today I have been told by my sisters boyfriend (who she says isn't her boyfriend) that I have lied to her about money from dad I have all the receipts etc and will only deal with public trustee not her as I have no money and used none on me or my family it went on the funeral

But on a better note Alex has had her wish Granted and this will bite me on my butt as my sister will say I used dads money for this trip !!! ( sorry for Vent am so pissed off at it all am trying to stand strong for my family)

 So we have done papers to be sent in and looks like she will get the dolphin experience I was at the end thinking we would have missed that part though :( but so happy she will do it and we will get the photo to look back on, Robyn wanted to go for it to but she would still be to small so when we leave QLD I will do the family one for us all as an experience to remember :)

top  :- asleep on lounge

above:- at the hospital after CT waiting to see Dr's

left:- at the wonderfactory at the hospital still waiting.

when its good its good but then turns bad :(

well today I got paper work from hospital that tells us about admissions etc, well Miss Alex has been upgraded again to a stage 4 tumor now :( I broke down how bad is it when you see it on paper knew it was borderline stage 3/4 but to see it upgraded on paper made me so upset :(

OK enough on a good note Miss Alex Is doing wonderful she is not so nausous and keeping feeds down :) she has still got pain etc but its all one day at a time dont let if get us down and stay strong for us all, I also had to get a twin stroller as both girls fight over one seat so now they have one each, was hoping to get a second hand one but ended up with a steelcraft duo.

a day at a time enjoy what we have here & Now


UPDATE just called hospital and well it was a paperwork error but OMG what do they think we will think, on a good note mass is shrinking so everything is going along the right track ( thank god) I am still stressing about it Knew it was borderline as we were first classed as stage 4 but so glad its still same and not getting worse but getting better :) ) some new photos of My princess's

Protocol in motion

we are still waiting on the results to the biopsy but the protocol " Dactinomycin (Actinomycin-D, Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" started on Monday 27+ weeks of chemo weekly with a week off occassionally and 4 weeks of 5 days straight for Radiation double strength that will start on the 10th on June,

we have had a planing visit Wednesday at the radiation place and Alex did well Robyn was a big pain though hehe typical 2 yr old hehe.

Big Chemo on Monday have sorted out so we have things to keep her happy as its over 4 hrs for 1 and there are 3 different ones being used that day Hubby will be with us and so will Miss R

Wednesday we have a play day with Radiation just to get her use to it all as if she moves they will end up sedating her and that will cause bigger issues for us, I am staying in Brissy with the girls while we do this and will be home on weekends as it will end up being to much $$ for us if I drive in every day. Miss Robyn will be an issue but she will have to learn we have to do this

on a good note Miss Robyn is Toilet training on her own accord I have no energy to push her so am just following her lead, she also sleeps most of the night in her own bed with out me big move from co-sleeping but I am still in the room with both girls I sleep with Miss Alex when she is unsettled and then with Miss Robyn when she gets upset.

new protocol

well here we are starting the next lot soon
today we see the Dr about the new protocol and we know already it will be double doses of Radiation in 2 weeks bouts and most likely will be the same chemo we had before " Dactinomycin (Actinomycin-D,Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" this last one is the red devil and is given over 4 hours and sometimes with fluids before if Needed, 2 of the 3 make her quite sick but there is a chance that we will have to deal with 2 extras as well due to her tumor biopsy results, the tumor was also growing teeth and bone like the Dr told us cancer is stupid but this is something that will need watching as its more common in a different children's kidney cancer than wilms? so thats us waiting on the results on the Lymph nodes and hoping they are dead cells but what ever they will still follow the protocal as the cells can mutate and we want to get this over its just so hard for a mother to watch her child go through all this I still ponder at night if I did something wrong for her to suffer this :( ( sorry still hits me hard like it would any mother with a sick child not just with Cancer but anything really) I know i am only human Hubby is doing well at hiding his stress too but I do see it he tries so hard to be a man but this is his first born Daughter and it shows he is human and loves his daughters so much he did start alienating Miss Robyn but has come around to understand she is in the family and is also suffering like us all. most mornings he is throwing up with the stress,

1st update on us in 09 & the Start of Alex's Cancer fight

well its been awhile since I came in here but a lot has happened too

1st we moved from NSW Hunter Valley to Queensland Ipswich area we arrived in our new place in Jan and well yes I am late updating this news, still getting use to it all, came here due to Hubbies work. I joined the local gym and was going daily 6 days a week and Miss Alex was going to the Pre-school next to it :) she loved it too.

In March Miss Alex started getting tummy aches and then I noticed a small lump under her right side rib-cage so we got into a local Dr that weekend this was the 22nd March. he checked her out and booked us in for an ultrasound the next day (Monday 23rd march) he said it looked like a tumor (lump ) on her liver and not to worry to much that it should be all good so off to the Ultra sound Monday morning we go and well we had to go back later as Miss Alex had to Fast :( Hubby was home that morning as work had him on late's so I took Miss Alex and Miss Robyn with me. we finally go in and the person doing the scan goes out to talk to the Dr. then the Dr. came in and said they would like to do a CT so this got me worrying they said they would call my referring Dr. and see what he thinks? no CT was done but they did do an X Ray so off we went back to the Dr's Surgery to see the Dr. about the results ( with only the scans in hand???)

well he was worried to I was stressing and the answer I got was to head straight into the Mater Hospital in Brisbane ASAP we sat with me fighting tears he said she will be fine it will be a long road but kids are strong and she is healthy as he wrote out a referral to the hospital, I was also told she would get sick before she got better.

The scans are of the Liver I had none of her Right Kidney but the X-Ray shows the liver up under her Ribs on the Right side

this Photo was taken on the 22nd March

I walked out of the Dr's and started back to the car while doing this I called home to see if Hubby was still there ( must have just missed him) so I called him at work and told him what was going on that I was about to head into the Mater Hospital, Hubby said Go Home first and Ill meet you there and would come with us ( so glad he did)

So Off to the Mater we go this is around lunch time no one has eaten I am stressed and thinking the worst ( Cancer of the liver) this is what the Dr. had hinted at we wait in the hospital waiting room for 5 Hrs before we get seen then she is very nice tells us its not the liver but they think its her Kidney and that we now have to go to the Royal Children's Hospital in Brisbane, they also gave us some sandwiches to eat as we had nothing so far while we waited on another letter for the head of oncology Dr Hassall., We also needed directions as we didn't know how to get to the RCH and needed a servo on the way ASAP, the Dr drew up a rough map that was good, we got there in about 30min, walked into emergency and was put straight into a bed no waiting this time due to the new letter. The Dr's in Emergency looked after us too while we waited on the new Dr to come down as he was busy but when he did he said we could not go home and that he thought Miss Alex Had a "Wilms Tumor (Nephroblastoma)"so was now waiting on a bed and we would be moved up to the wards then, so with in 24 hrs we went from a lump to cancer and it was a shock and so scary to think what my Baby girl was going to have to go through.

She was diagnosed with Nephroblastoma (Wilms Tumor) Stage 3 High risk as the lymph nodes had attached to the Aorta, we did get put up to stage 4 at the start due to small spots on the lungs but they dropped it back after surgery and we stayed on the same protocol for stage 4 stage she will have 3 different chemo's " Dactinomycin (Actinomycin-D, Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" the last one is the RED Devil this is not a nice one and goes over 4+ hours,  we have been told no radiation at the start but after they found that it had spread yes to Double doses, Alex also had a spot on her lung but they watched it go quickly so we hope this is nothing as that would mean further spread and due to biopsy results this protical could be up to 5 chemo's
6 weeks of chemo then surgery back to weekly chemo of vincristine every week and every second week one or 2 off the others added, radiation was added in late June and we only had Vincristine over this time due to the effects and reactions that  Radiation and Dactinomycin (Actinomycin-D, Cosmegen) and Doxorubicin (Adriamycim) when mixed together

we spent 9 days in Hospital at this time with Miss Alex Having surgery for the first Biopsy and a port inserted ( like a central line but under the skin), CT and Ultrasounds plus Xrays etc, we got the results on the 27th of March and they started Chemo got home on the 1st of April of all days with a weekly protocol of Chemo every Thursday (DD4A regimen well sort of as the red devil was done over 4 hours here in Australia)  and Surgery to remove the Tumor (Right Kidney) on week 7 around Hubby's Birthday of all days the 7th May. will do a new post of the next part of our journey soon

these are taken at the hospital just as we find out we can go home so was a good day for us all

this Photo was taken about 2-3 weeks after we got home Hubby shaved his head and I did a No. 4 we also cut Miss A's hair to shoulder length to help with the hair loss.

Just want to say thank you to all the friends and Groups that have been supportive its so nice to see this in a time of need ( EB, SRC, Padre from DH work ETC Sorry if I missed a group)