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 ♥

{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