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

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 ♥

City to Bay here we come

today we as a family signed up to walk the 3km and we also had hubby volunteer to wear Giggles costume for the walk so please share our link and help us raise funds for Camp Quality and awareness about our beautiful warriors out there

Thomas Family's Fundraising page

this is in September this year

below is a link to Camp Quality so you can see what they do to help families but also read posts on this blog as we have had many days of laughter with Camp Quality
Camp Quality

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!

Mid Camp with Camp Quality

Alex went of to Mids Camp on the 15th April and we drove her up to Belair Nunyara Conference center where they stayed :)
she was so excited and we were up at 4.30am due to one thing or another but also a very excited young lady
Robyn missed her that first day and she had an early night due to the early start ♥

all ready for the 1.2 hour drive and 5 days away from Home ♥

Alex got to play football (Aussie Rules) with the Adelaide Crows, they learnt hip hop and she danced the gun gland style dance and she recorded a song with her group, they played volleyball and she made some scrap book pages for her scrapbook she got from a great friend in Ipswich ♥
they went to the movies via Limo and had the red carpet treatment and she dressed up as Miss Granger from Harry Potter,
Photos are from Camp Quality page plus any she had taken while away :)

photos above from Camp Quality Facebook page and news site

News story

Crows Facebook Page

Poem ~~ Riding the Storm

Riding the Storm by Michael McHugh

The winds howled and the sky grew dark. 

The storm hit and we were the mark.

The winds blew with exceeding force.

The storm would set our lives off course.

I begged this storm to not strike us, please.

For this storm was truly a terrible disease.

It hits with sudden force and there is no protection.

It is not choosy in making its selection.

Once chosen by this storm, there is no going back.

Your life will continually follow the treatment track.

Treatment is a battle with more than one side-effect.

And there is no guarantee of which plan will be correct.

The storm will ravage psyches of kids and spouses.

And lives will forever be changed inside those houses.

Hospitals, doctors, and prescriptions become a way of life.

And you will need to learn to handle emotional strife.

As the storm passes, rays of hope will appear.

But the threat of ensuing storms remain with those that are dear.

The sun will shine and life will be good.

Yet, the fear of wind and rain is always understood.

Living with cancer is like riding the storm.

Fear of recurrence is ever the norm.

One feels blessed with each day of life.

Now truly knowing the importance of being a mother and a wife.

Only God knows if the skies will remain blue.

Faith in Him must always shine through.

Life must be lived with joy in mind.

And pray that your body's cells will always remain kind.

Easter around the corner

The Queensland Cancer Council have asked to use her story again for their April appeal as they raised a substantial amount with the Christmas appeal, I have said yes even though we are in SA now we are still spreading awareness if nothing else, and they are working on a better treatment and higher survival rates for all cancers with their research, remember research costs money just to set up then funding helps with scientists time etc,

we had the local paper call to and then another photo done so another story in a local paper possibly in the next week or two. ( messenger) for the Relay for Life.

the Relay may have 3 children walking this year ♥   would be nice to see more but sad as the third child is only 6 and still in active treatment and I always wish everyone on the same side as us even if its all unknown what the future holds we are still all here together and living life,

Easter next weekend so loads of chocolate eggs for the kids to run mum and dad havoc ♥  I grabbed some Easter bunny head bands for the girls as a small surprise today and they loved it here is the photo






hope everyone has a wonderful Easter and long weekend with their loved ones and stay safe on the roads over this break, enjoy the little things as they are what memories are made of too ♥

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

we got the True Hope Dolls for the girls

well the girls got their True Hope Dolls  from Bratz today, a friend at the school went home to Canada and grabbed them for me so when her Hubby came back to Australia we got them hand delivered as promised xx

the Bratz True Hope dolls will be on sale soon in Toys R Us stores in Australia either later this year or early next year so all children effected by Cancer either a family member or a parent as well as children loosing their hair for treatment can enjoy a beautiful doll that show they are still special and Beautiful
 the photo shows Cloe, Yasmin and Cameron  the girls have Cloe now and already playing with them with love xx♥

I only got the one boy as 5 dolls is special for them and they do share well xx

Bridge to Brisbane September 2nd 2012

today the 2nd of September the second day of Spring and Fathers day.
I was up at 5.30am to drive into Brisbane and then I got a shuttle bus to the 5km start line, it was freezing out here at home but turned out to be a great day, I walked the 5km in the Bridge to Brisbane with Team Logan's Run

Me and Gina at the start
Logan's Run Team

the start line

about half way

3 km down 2 to go with a hill ARGH

almost there

The Finish

T-shirt to say I finished :)

the girls stayed home with Hubby, who ended up getting called in to work and had to get a great friend to look after them on fathers day of all days ♥but Daddy and the girls enjoyed Fathers day, I even made a cake when we got home for him ♥

we made him Fathers day cards and a sign, as I knew I would not be home til after lunch for his special day

now Scanxiaty can sneak in as Alex has her 3 monthly scans on Wednesday

Bring it on we will walk all over it ♥ 

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."

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

Family Camp 2012 with Camp Quality

this weekend we spent with Camp Quality for the Family Camp up on the sunshine coast at Maroochydore. this is our first stay here last year we went to Noosaville and had a ball.

On Friday I kept girls home as it would take us a couple of hours to drive up and would be nice to go early and do the sites , so went through Nambour and checked out BliBli Sunshine Castle, room was available from 2pm so checked, once checked in we went to the super market as Robyn forgot her thongs (AGAIN it happens every year lol) got a couple of things we needed and then braved the pool. it was freezing and I almost tried to kill myself and the girls :9 I walked off the edge into deep water with both girls holding me ARGH scared Robyn but kept them safe and got my toes on the edge til Hubby could jump in to help ( he made iit seam like I did it on purpose to get him in to try calm Robyn down as she thought Mummy was going to die :(*

Sunshine Castle Bli Bli, Sunshine Coast Queensland

Saturday we had a lovely River cruise up the Maroochy River all the way down to the mouth ( just inside the mouth as it was low tide and the coral sea beyond. we then went back up the river to see the Castle from the river and a little further up stream so a beautiful day on the water, morning tea was suppl;ied and then back to the resort to get ready for Lunch at the Maroochy Surf Club on Alexandra head, back to the resort and pool and massage time :) AHHH so nice  (not the pool it was still freezing to get in lol but nice once in, then the girls played in the playground, bouncy pillow ( yes it was like a pillow no ides etc but still fun) then BBQ dinner and  then a Movie under the stars Smurfs, by this time Alex was very tired so we went back to our villa and had an early night.


Sunday morning was Mothers day and the camp fairies left a small gift of a rose, and chocolates with a card ♥ I also was told happy Mothers day by everyone before 5am hehe this happened as Robyn climbed into my bed at 4am and I went in with Alex at 5am so they all said it so cute. and we got a family photo and a silly photo done in the morning before check out at 10am.

we got to go to Underwater world so this was great :) as have neven been before and enjoyed the seal show and the otter show, plus a lovely lunch provided by the under water world team Thanks
we then decided to head home I was exhausted and just wanted to relax

we also met a couple of families we know ( online or have met at other events like relay and CCS) and was great to talk plus other families on their first camp so was great just to talk and get to know them, I met one family who's son is a wilms kid lower stage than Alex but was diagnosed at 7 months and his scar is bigger than Alex who was higher stage and still has issues but so good to know kids keep growing and going on with life ♥
decided to add a slide show from Photobucket as we have so many photos from this weekend enjoy

   

PJ Day May 7th 2012

this year I signed up for PJ day I also wanted to go to the PJ night last night with some other Oncology mums but Hubby was on call all weekend so we did it our way at home and around home.


here are some photos as we have to be silly and have fun in our PJ's all day lol

Haig street Park and quarry this morning went fishing and played in playground ↓

In back yard playground with Girls early this morning ↓

the weather was lovely and the girls had a ball. now asleep as school tomorrow and poor Robyn had another night terror episode and is now settled in for the night I hope.

I am doing work experience at the school for my studies tomorrow (Cert 3 educational assistant) and we have camp coming up soon to look forward to so may another fun filled month

today Is Hubbies Birthday and this time 3 years ago we had to be at the RCH at 7am to check in for Surgery, this didn't happen as Alex's Lungs didnt play nice and she ended up on antibiotics and neutrapenic, so was admitted for 5 days til ther counts rose and then we went home for 2 nights and back in on the 14th to go through it all again