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

{POEM} The Special Mother By Erma Bombeck

The Special Mother" by Erma Bombeck

The Special Mother 

by Erma Bombeck 

Most women become mothers by accident, some by choice, 

a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. 

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth

Selecting his instruments for propagation with great care and deliberation. 

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? 

That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wear off she'll handle it."

"I watched her today. 

She has that sense of self and independence so rare and so necessary in a mother. 

You see, the child I'm going to give her has a world of it's own. 

She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you." 

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. 

Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word.

She will never consider a step ordinary. 

When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see--ignorance, cruelty, 

prejudice--and allow her to rise above them. 

She will never be alone. 

I will be at her side every minute of every day of her life 

Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. 

"A mirror will suffice."

thought I had shared this before but may have done on Facebook? who knows but thoughty it was worth sharing

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 2013

yesterday we walked with a good Family Friend the 3km in Adelaide's "City to Bay"
we walked with Giggles and the kids had a Ball even though tired,
giggles met some new friends on the way with the lion from Heart Kids and Ronald MacDonald as well as many little people wanting a wave or high five ♥

ready for the City to Bay 2013

making new friends

even girls making friends

and more new friends

girls too

and giggles handy work as he shaved my hair to no.3 

so far raised $244.10 and open til october for anyone wanting to support a great cause

Mazz & Family city to bay


we also got to go to the Adelaide show this year was not on our to do list but Camp Quality gave us the tickets for a wonderful family day out, the girls had a ball

miniture horse 

;)

girls being silly 

snakes

Miss R holding snake

Miss R holding blue tongue 

Miss A with the dragon

horror house Miss A said No Way

fun house Miss A having fun :)

giggles head taking up back seat lol on way home

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.

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,