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!

Relay for Life Gawler 2013

this weekend we had the Gawler relay for Life and Alex lead the survivors walk with another young Survivor,
Gawler has been doing the relay for 5 years now and this year is the first with children walking so they made the kids feel special ♥

Alex did 2 stories in the papers and just before the weekend we got the local paper and the girls were on the front Page ♥

also on the Adelaide Now web site raising awareness about early detection


Alex's story on Adelaide now
this is also in the advertiser,

we did the survivors walk and also went back for the candle light ceremony with our own candle bags for all the RCH angels and my uncle, Cousin and the girls great grandparents who lost their battles against Cancer

ready for the 2013 relay in Gawler

all ready for the survivors walk

cutting the Ribbon to start the relay with another young survivor and the Lord Mayor

Balloon release

Survivors afternoon tea

we went back to the relay for the candle light ceremony at dusk and the girls candle bags were added to the oval for the walk in the dark in silence ♥
they did a power point and the start had the survivors on it then went onto all that lost their battle with this horrid disease ♥

decorating candle bags for candle light ceremony tonight

decorating candle bags for candle light ceremony tonight

bags for candle light ceremony tonight

bags for candle light ceremony tonight

was aa long day and moving being there for the candle light ceremony and solidarity walk, we are hoping to get a team up for next year and then we can stay the whole night and join in more.

I also got an email from an editor from Take 5 wanting to share alex's story and spread awareness so that is on the card s soon too

we are still waiting for our referal from QLD to see the oncologist here in Adelaide SA. and Alex gets her flu shot today she is worried but when super flu's are around better to cover her than hope she doesn't get sick ♥

Alex is also going on mids camp this year here in SA she is a little younger but they said she can go I was happy to wait for the right camp as then a night with Just me and Hubby as they would have been together,

she will be gone for the whole first week of school holidays,

Moving Forawrd

we have been in SA over 3 months now and getting into the regular routines except scans are due and no one has contacted us yet so we called around and things have been delayed, so some stress with that but not a big deal,

Girls started Cheer-leading training last month and love it :)

they are doing well at school to but are missing their friends as well :(


I signed up for a 12 week push body challenge just to jump start my weight loss and get me back on a healthy eating plan and so far tired and sore but pushing through with out doing to much.

we are also looking are rescuing a cat or two looking a 2 next week that need a home and are in foster care,


I am also still studying but have hit a block :( but will try get into it full on soon and also doing a photography course that has helped me out so much with learning new things and how to use my camera better I have been off auto for a couple of years now but this course is helping me with the little things that get over looked

we got in the local paper last week to and they are looking at getting Alex and another young survivor to lead the survivors walk Alex will be their youngest walker this year, plus a possibility that both these young survivors will be opening the event with the mayor,

now to sit back and hope I hear from the hospital to get scan date sorted and move forward again 

on a sad note i know 5 warriors in Australia that have gained their wings and a couple of adults too so HATE CANCER majorly at the moment :(

Hugs your loved ones often you never know what is around the corner and we all should enjoy what we have here and Now

Did You Ever "Borrowed Post xx"

Borrowed from a FB group who borrowed it from another
 "Next month in September it will be Childhood cancer Awareness month - please be aware that everyday in this country 46 children are diagnosed and 7 die.... 'stole' this from a caringbridge site - please read and share."

"Did you ever think that the phone could ring and in a matter of a few seconds your life could be forever changed by just a few words…your child has cancer? Neither did I.

Did you ever think that you could hurt so badly (emotionally) that the physical pain of it would be almost unbearable? Would you believe you could feel this way and not shed a tear…for weeks? Because your child is watching.

Did you ever think you could call the local children’s hospital home?

Did you ever think that there would be a day when the family/child featured on the news and in the paper as the reason for fund-raisers to help cover medical expenses would be yours? Me either.

Did you ever think that you would learn the hard way that the very people who you would have bet would have stood by you and your family in difficult times would be the ones to turn their backs on you or turn on you altogether?

Did you ever think that mere acquaintances or even strangers could become your lifelines and be the very hands of God to you and your family in your darkest days and your times of need?

Did you ever think that you would have to watch as medical professionals donned gloves, masks and gowns to protect themselves from the chemo (poison) they inject into your child in hopes of saving her life?

My child was the first pediatric cancer patient I ever met. Unfortunately I now know that it is MUCH too common. Why don’t we see these kids? Because they are in hospitals or home because of compromised immune systems or…they don’t make it.

Did you ever think that you would have to sit in a conference room and make the decision to treat your dying child with a drug that is likely to cause heart damage, brain damage or secondary cancers later in life? Notice I didn’t say possibly, I said LIKELY.

Did you ever think that there would be a day when you could catch a glimpse of your child as she walks through a room and be compelled to follow her, feel her, stare at her,and compare her to siblings side by side because she might look like there is something a little “off”? Did you ever think that these impulses would last for years and that most cancer moms admit that they last a lifetime.

Did you ever think that the glimpse mentioned above can turn your “normal” day into a nightmare complete with the “kicked in the gut” feeling you are all too familiar with these days?

Did you ever think that your purse/car/kitchen junk drawer would all contain tubes of numbing cream, bulldogs (clips for holding a central line up and out of the way), detachol (medical adhesive remover), zofran (for nausea), a thermometer, and 5/8 needles (because home health always brings the ¾ size that don’t work on a fickle port).

Did you ever think you would have to explain to your other children that their sister might die?

Did you ever think you would have to tell your child that her friend, another child with the same dx has died?

Did you think you would ever have to see the fear in your child’s eyes that relapse could happen to them, too?

Did you ever think that you would watch your child’s doctors talking in the hallway and try to read their facial expressions to prepare yourself for what you are sure is bad news?

Did you think you would ever have to stifle the anger that you feel when people or organizations brag about the millions of dollars they have spent to “beautify” buildings, cities or whatever when you know that if that money had been spent on pediatric cancer research there would be many, MANY more survivors 10 years from now.

Did you ever think that you could feel guilt when your child is doing well and others is not.

Did you ever think that even when your child is doing exceptionally well that your joy could be robbed with fear and dread ? Of course, you just read another child’s blog and learned that while she seemed perfectly happy and healthy 10 days ago she has since been dx’d with relapse and is in the PICU in a coma and brain damage and might not live through the night. This child, could be your child in 10 days.

All of this has happened to us. September is childhood cancer awareness month. Every single day 46 children are diagnosed with cancer. Every single day 7 children die of cancer. The incidence of cancer has increased 30% in the past 30 years. We don’t know why. Cancer most commonly affects previously healthy children with no history of pediatric cancer in their family.

Cancer is an equal opportunity disease. It doesn’t care if you are wealthy or poor, male or female, young or old, black, white or any other color or where you live. All of our children are at risk. Cancer is the number one killer of children by disease. More than AIDS, asthma, and cystic fibrosis combined yet only one new cancer drug has been created in the past 30 years.

Pediatric cancer patients and their families are not usually circulating in society and I believe that is why there is so little awareness. That is why, as my child is venturing back out into the world, I will live in a fishbowl and share our story."

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

6th March Ultrasound and Xray

Traffic at a Crawl 

we had an ECCO today like an ultrasound done on the heart to make sure she is fine and the Chemo has not done damage to the heart this was at 8.30am so a big day again :/  we had traffic issues on the way in and I had to call at 8am to let them know we were still held up in traffic and would be late, we arrived at CCS at 845 and I rang their office hoping someone may be there so I could get a lift to the RCH and get there sooner and was lucky I had just missed Margie she had just dropped another family at the hospital and they had also just said that I had just pulled in as they left but we got a lift and rushed up to weigh in and then wait for Alex to be called out, we get called in just after 9am and all looks good so we then head straight down to radiology for a 9.30am Ultrasound and then Chest X-Ray these show any change in her chest and abdomen and will let the Dr's know if the Cancer is reoccurring but we have been so blessed that she has stayed clear everywhere and Stable on the mass that was in-operable♥ they still have issues finding the mass near her aorta but it all looks good so that is all I needed and back out to the waiting room for the X-Ray when in Walks Alex's Favorite Nurse Jerry from when she was sick he is looking good and I grab a photo :) he was surprised at how well Alex is doing and even more so when I told him Miss (Trouble) Robyn is now a prep in school and 5 :o
Alex had her snacks while we waited then some lessons at RCH school in outies and then in to see Dr Tim, All looking good and he is happy with Alex :) said her kidney pain could be growing pains but everything is the same and looks good :)
we head out and make next appointment in June  ( back to Wednesdays ) for a CT scan so contrast and IV  then head out to call and get a lift back to the car at CCS.

I called CCS the other night as we would be there before anyone was available to get a park. as this is not our normal day we go Wednesdays Normally but today is Tuesday due to ECCO, and all is ok just parked and caught up after for coffee and chat

Ultrasound 

with Jerry ♥

having a snack break and sitting on the croc

construction in park over road

This would have been a day I needed Robyn picked up from home and possibly school also, but she has not been well all week with a fever so no school today, she stayed home with daddy, on a good note Robyn is looking like herself now and fever has broken  so both back to school tomorrow :)

last week Robyn had her dentist appointment and the broken tooth is an issue it could be broken and I am waiting on a call back as to what they will do next? it is possible that they will pull that tooth as it is loose and hopefully has not effected the gum and bone underneath, the private dentist didnt even XRay that tooth so hope all is ok ( I worry about Robyn too she is my Baby )

Robyn getting her first X-Ray (dental though)

Robyn sitting in the dental chair

I have also got paperwork for the girls to go on Junior Camp this year and they are looking forward to it in April off to the circus then camp and lots of fun will get full details later and where drop off and pick up will be at a closer date, now Mummy and Daddy will have a weekend of quiet to maybe catch a movie and Dinner plus just some relaxation time ♥