5 Years out of Treatment

well we are now in 2015 and miss Alex has hit the magic 5 years out from treatment so we can officially say REMISSION :)
she is now seeing a renal specialist due to above normal creatinine levels and they have fluctuated up and back to the above normal levels so we now are being monitored for her kidney functions ( about time as we hit the 5 years with out a renal visit) Alex also suffers from Neuropathy and her calf muscles are causing issues that may lead us to casts on her legs to stretch them and at 10 she is growing so that shortens them even more but at this point is stretching exercises that we hope can help and maybe skip the casts
she also now suffers migraines so we will see a neurologist about controlling them and keeping her comfortable,
but all in all she is growing into a beautiful Young Lady at now 10 1/2 she is smart and a true advocate for Childhood Cancer
below  are some photos from our fun day with Camp Quality this month just before Alex's little sisters 8th  birthday at Bounce Australia

Camp Quality Puppets Kylie and Dean

type-rope walker

we have scans in March and should see us go onto yearly scans and oncology visits, even with renal every 3-6 months plus ortho and neuro  its getting better
will post some more photos soon and update after march next lot of scans and appointments

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

Camp Quality Events March 2014

the month of march is a hard one for us as we look back 5 years this month to the time when Alexandria was diagnosed with cancer, but she is doing so well and we have had a great month of fun, adventure.  Alex had her first 6 monthly scan and doctors visit and that was great as we found out her remaining Mass is still slowly Decreasing in size ( I do Happy Dance with the family Here)♥♥♥

some photos of Alex in 2009 to now

2009 and early 2010

2012

 Now 

March the 9th we had an fun day with Camp Quality, we spent the day learning Archery and the girls had a ball it was interesting how much fun was had by us all and thanks Camp Quality for the chance to try this.

Alexandria and Robyn's school also got a visit from the Camp Quality Puppets, they do such a great show and the girls went into different sessions and I think everyone at the school loved them.

March the 16th we had a Mannum river cruise day again with Camp Quality and I got to show the girls some of where I grew up as a child, must say it has changed a lot but still a lot the same as I remember, Mannum is a small town with 2 ferry's that transport cars across the river. we had a short cruise up the river on the Proud mary and both Girls got to steer the river boat, after we had a BBQ lunch and got to check out the CFS fire trucks and local police paddy wagon as well as a nice drive around Mannum in a modle T ford Limo
(all photos in slide show )

was also hard as the last time I was up that was was in 2009 just after my Father had drowned in that same river ♥

Christmas and new year fun days 2013

this post is big but not long as it has both CCA and Camp Quality Christmas things we have done over November and December so as not to post many small posts I wanted to do one
 we are doing well so this blog is becoming just the fun things we do as a family as we enjoy what we have and make wonderful memories, Alexandria's appointments etc will also be posted as we get to them
may we see a cure soon for Childhood Cancers and no child have to endure what we have seen many families go through ♥

on the 24th November the girls had their Camp Quality Christmas Party here in SA we went down to Glenelg and met families we have met on Family camp :)
the girls had 2 hours at the beach house ( this is where the old Magic Mountain was when I was a kid lol) then BBQ and face-painting and tattoos on the park with a visit from Santa


on Monday the 25th of November we went up to the west end brewery for a photo at the Christmas display I was disappointed in the story as it only told Alexandria's story the other young girl has Type 1 Diabeties and this is also something that should be addressed and awareness spread ♥


 Friday the 29th we went back for the brewery lights and a tour etc Santa visited again

sunday the 1st dec we had our Childhood cancer association Family Christmas party and wow that was wonderful, the biggest event we have been to so much to do and so much fun had by the girls , I love seeing them both have a great time

our last event was zoo passes from united way thanks to Camp Quality for passing them onto us, we had a great day at the Adelaide Zoo

here is a slide show with many photos from all of the events

we didn't do much in the new year went to the beach, movies etc , got reaby for school going back and cheer-leading for the girls 

Miss Robyn turned 7 and we are planing a party soon for her 

other than that all is great with us all healthy, happy and enjoying what we have together

Hope everyone had a great Christmas and new year and every moment with Family is special even those small ones  memories make your life story how ever long you get to spend with your loved ones ♥

Scan day finally

well after some calls and a run around we finally got Alex's date for scans,
Monday the 3rd June and all went well, we met the new oncologist and are now on 4 monthly visits instead of 3 and also may not be having a CT for ages and only if required :)
this is great to know :)

parking was  hard but it was cheaper than in QLD so a bonus,
the hospital trip was very easy and smooth,  a well set out hospital made it so stress free, best hospital trip we have had in ages and that is saying something, long waits didnt happen on this trip.

North Adelaide is busy but wow it was quiet after what we have seen

so happy things are moving forward again and we can now relax for the next few months before Scanxiaty hits again around October. plus a small trip for an orthopedic visit to check Miss Alex's feet as she is so clumsy and did have peripheral neuropathy  or Foot Drop and most know it as, but she is doing well and now we just need to continue helping her to be better at what she does. she is doing well with cheer-leading ( gymnastics ) so that is good and to keep it upas it will help her confidence

busy day tomorrow too Hubby has surgery and may take girls to the zoo if I can swing the price as its the day before pay day!

Happy New Year and hello new home state

well hope everyone had a wonderful Christmas and new year as of last post we moved into our new home and state in Australia, we have finally settled enough to relax and start to enjoy it all around us
Alex shared her story with the QLD cancer council and was the face for their Christmas appeal she was in 3 papers in QLD I got a copy of the courier and Toowoomba papers but not the warwich one but I did get a pdf file to read :)



 we now have a Dr for the girls and they are ready for school in two weeks, I will have a meltdown on that day as I will miss my girls ♥

have got back into my studies and well not much else happening so will stop in when its scans etc but may be slowing down on the blog front now as we are doing wonderfully so this is really just a diary from it all to look back and see that we survived something we have seen so many not  and pray one-day we see a cure or a better way of life for all xx

Alex's story

Photos from PB added to show stories web pages and the girls this week ♥

Alex's story QCC

heading one QCC

Heading 2 QCC

Heading 3 QCC 

the hand writing is also Alex's message ♥

Toowoomba Paper Dec 2012

Courier Mail QLD Dec 2012

Jan 2013

my princess's

Jan 2013

am a little lost with all the girls friends being in QLD so Miss Robby has her birthday next week and trying to do something special for her ♥

it has been hard with the different weather down here hot is hot but no real humidity, so makes you feel very dry very quickly so water is needed, glad we have the filter as Adelaide water is high with chlorine etc so not a very healthy option and the filter we use it one of the best and not cheap but worth it for the girls health

Take care everyone and hug your loved ones  ♥♥

Moving and Cleaning

well we have just found out we will be moving state about 2000km from QLD to SA end of the year so have started doing the normal thing, Cleaning out all we do not use and all we can not take as we will be going from a 4 bedroom to a 3 bedroom house so all up loosing 2 rooms ( dining room which is our Gym)
this weekend we just did cleaning and the outdoors so Girls could enjoy some sunshine this winter as we have had the FLU and yes it was the flu as it is still holding us down and was very bad with the aches dehydration even with water intake etc

well this is from today 

My Family ♥

 there has been so much going on this month and flu etc have not stopped us,
last week we had Hand, Foot and mouth go through the school and now it is possible Alex may have it, I did call the ONCO dept as I wanted to know if if will cause any issues as she had flu shot but got the flu, and now this plus her coughing up blood but they said all is good and the blood is possibly just a ruptured blood vesal from the coughing stress ( good to hear but still as a onco mum stressful to know the other options)

so now on watch as if it is we have 7 + days at home  with Robyn seeing a speech therapist about her issues and out bursts which we can sort out but have been told it is  due to her seeing what Alex went through!!!!


it is three weeks til I do the Bridge to Brisbane walk (5km) for the Royal Children's Hospital Foundation through Logan's Run. the Money we Raise is towards Childhood Brain Tumor research to find a better way to treat and cure the resistant tumors after first treatment

My Walk Page

 always make the most of every day, we are all on unknown times and our children need us there now and always ♥☻

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