Mixing It Up A Bit

Let's mix it up a bit....again!

As planned Kira went to Calgary on July 13th for chemo, everything went as expected and following the 72 hour flush after getting the Chemo, Kira was sent home onThursday night.  Due to having a slight cough, Kira was in isolation while in the hospital.  This means she can not leave her room at any time and makes for a long stay.  

Getting home on schedule (I had to google that word) had an extra special meaning this time.  In December 2014, before being diagnosed with cancer, Kira got tickets to see One Direction in Edmonton on July 21, 2015.  The Oncologists juggled the treatment schedule so Kira would be able to attend, getting home and not getting sick meant she would be able to attend as planned.  Thanks to so many kind people, who treated Kira with VIP status and spoiled her rotten, she had one amazing first concert experience!  It was a fantastic night!  Just what we needed to see us through to the end of this cancer journey!  It was perfect timing, we needed some fun!!  And FUN we had! 

Following the concert Kira was back in Calgary to continue chemo on July 23.  This is where things start to come off the rails again, however she cleared after the 72 hour minimum flush and was sent home on the 26th.  

Let's talk about the flush for a bit.  To flush the chemo they are running saline through Kira's IV line at a rate of 240ml/hr.  This is the same as having 11.5 500ml bottles of water over a 24 hour period.  Also over the 24 hour period she has to go pee 20 times.  And she does this 3 days in a row!

So the plan was to do Chemo on July 23 and then again on July 27th however, Kira's oncologist was on Holidays and the replacement oncologist did not like giving these Chemo's back to back and wanted her to have a break and also wanted a echo cardio gram to check Kira's heart function.  Decreased heart function is one of the side effects on the chemo she was scheduled to get so the heart tests are a common thing.  

So Kira went home on the 26th, and then back to Calgary for the Echo Cardio Gram on Wednesday the 29th with the plan to get Chemo on the 30 and 31st.  Also on the 29th Kira had an x-ray on her leg so the surgeons could check how the bone was healing (we have not seen the surgeon yet to discuss) and then went for her first leg casting at Alberta Artificial Limb in Calgary!!!  This was exciting and Kira's first leg is now weeks away!!!  Kira is VERY excited for her new leg and is so happy this process has started!! 

On Thursday the 30th the Oncologist informed us that the Echo Cardio Gram showed a decrease in heart function, not enough to put Kira in trouble (which is why they do them frequently) and the heart will Hopfully repair itself, however this will now change the program.  So Kira was sent home on the 30th without getting chemo. 

So we wait until next week when the decision will be made to either...continue with the current schedule after another week and Echo Cardio Gram, continue with a reduced dose of this chemo (two sessions of this one left on the schedule) or drop this Chemo altogether.

So stay tuned...no telling what next week will bring!

Kira had a visit from her buddy Cassie!! They spend about 3 hours just playing in Kira's hospital room!

Kira also had a visit from our friends The Lovells!

Kira was so excited to see her "FIGHTER" photo hanging in our Stettler movie theatre, The Jewel Theatre! 

Getting ready for 1D!!!  Making our signs to take to the concert!

We had to get pedis before the 1D concert!

The day has finally arrived, its time to go see One Direction!!!  Thank you to Lindsay Walker for sending a limo to pick us up!!  That was so fun!!

We had some help from an amazing lady, Marie, who is security at Common Wealth Stadium.  She helped us get down to the floor in a wheel chair!  We got to take the back stage elevator!  It was cool!!! 

We made it!!!!  Bring on 1D!!

1D spoiled Kira!  Blew her lots of kisses, gave her 2 guitar picks and a sweaty towel! lol

So happy!!

Our fav, Harry Styles!

Louis blowing Kira a kiss!!!

In the Limo!

HARRY!!  We were sooooo close!! Thank you Lindsay Walker  and Blair Antler for getting us awesome upgraded seats!!!  What an experience that was being so close!!  Also special thanks to Jim Cressman who hooked us up with some wicked VIP perks also!!  

Limo!

The after glow! What a nite!

It's tough being a rock star!

Jace can visit lots now that school is done!  They have played a lot of Minecraft together!

Harry waving and blowing kisses to Kira! 

Kira got the ok to start the leg process!  Here she is getting a mould taken.

She's so excited to get her leg!!!  

Just passing time at the hospital!  

And passing more time!

Spend a little time while home with Auntie Gayle and Uncle Man, having a wiener roast at their camp site!

Kira walking the dogs.  She can't wait to get her own puppy one day!

Kira also got a visit from her Grade 2 teacher, Mrs. Hunter!  Its so great for her to have visitors, really lifts her spirits!!  

Delayed Update!

In the last update, Kira was scheduled for another surgery on her leg to clean up one spot that was not healing as fast as it should have.  During the surgery they also found that some of the muscle had shifted and was not covering the plate in her leg properly!  Once again, things happen for a reason, they fixed everything up and today everything seems to be healing nicely and looks really good!

Following that surgery Kira was given two weeks off from Chemo to allow things to heal.  After the two week break the Oncologists changed her Chemo schedule as the Chemo she was scheduled for slows the healing process, so they changes things up to allow her leg more time to heal and gave her a round of Chemo that effects the blood cells, then another two weeks off to let her blood counts recover.  Kira had to make one trip back to Calgary for a blood transfusion (which was somewhat expected), this was a long day.  Blood work at 8am in Stettler, off to Calgary once we had the results (10am) then 3 hours of blood transfusions, 4 hours of waiting around then home to Stettler by 11pm.

One issue Kira was having a few days following her Surgery she lost some of the movement in her foot (new knee).  She still had good movement that would allow her to kick her prostethic leg forward however lost the movement that would pull it back.  The figured some post surgery swelling may have damaged some nerves and that when the swelling came down the movement should return.  As time went by and the swelling came down, the movement did not return.  Kira's physiotherapists tried electronic muscle stimulation (numerous times) and still no movement!  Just as everyone was convinced the movement was lost, if not for good then for many months at least, as Kira was watching TV on night she noticed something "felt weird" and just like that the movement returned and is getting better and stronger every day!

Kira heads back to Calgary tomorrow (July 13th) and will be starting on Chemo treatments that will go until the end of September if everything goes as planned (we will not expect that to happen) with a couple short breaks between sessions (one week max).  Kira is glad that there is an end  of the Chemo treatments in site and that during this time she will be starting down the path of getting and learning to use her new leg.  She gets upset now and then that Summer is here and she is missing out on all the fun (camping, swimming, playing) however is keeping the big picture in mind (7 year olds should not have to do this), beat the cancer, get her new leg.  Then running, going to school and playing with her friends!

Kira got to meet a couple of the Calgary Stampeders while in the hospital!  Fred Bennett and Randy "Chevy" Chevrier brought many smiles and laughs! So nice of them to visit! 

They signed a couple footballs for Kira and Jace.  Great guys!! 

Enjoying a little wheel chair baseball with Jace while at home!

The long blood transfusion day!

Beads of Courage are getting long!

The Ladies of the Heartland paid a special tribute to Kira at the Stettler rodeo this year!  They did a musical horse ride to Kira's favorite One Direction song!  Wearing Kira's camo buffs on their cow boy hats and using special pink flags.  It was AWESOME!  We loved it!  Thank you for making Kira feel so special! 

Chemo

We got to go visit Kira's class before school ended.  Here Kira is with her amazing grade 2 teacher, Mrs. Hunter!  She has been so supportive and wonderful!  

This is a very special group of ladies I am lucky enough to call my friends!  What they have done to help us these last few months has been truly amazing!  One of the amazing things they did was put on a Keep Kira Smiling fundraiser nite!  It was such a fantastic night of support and love!  We are so greatful to have such wonderful people and such a supportive community in our lives!  We can't say thank you enough to everyone who has been there for us!  

Kira got to ride in the Stettler parade!  (that's her in the back seat)  This is the float for her singing group, the Tiny Gracenotes! 

This awesome fundraiser was put on by Sean's No Frills in Stettler!  They raised money for Kira and had everyone sign a card!!  This picture doesn't even show all the cards filled out for Kira!!  See what I mean, this community is truly truly amazing!  Huge thank you to Sean and his staff at No Frills!! 

Playing ball while getting a blood transfusion!  Thank you to everyone who donates blood!  We've seen first hand how important that really is!! 

Doing her rounds in the halls of the oncology unit!  She loves socializing with all the nurses!  

Jace came for a visit! 

Plan In Pencil!!

On our first day at the Alberta Children's Hospital, we sat down with an oncologist, one of the first things he told us was, "we plan in pencil here, never pen."  Wow, he wasn't kidding!  

After 15 days at home Kira went back to Calgary for the next round of Chemo today.  

Of the days at home, one was a quick trip to Calgary for a follow up with the Plastic Surgeon which lasted 15 minutes!!  He wanted to let the back of her leg heal on it's own if possible and sent us home.

We also had some very good news while at home.  The pathology report on the tumor that was removed from Kira's leg came back and it showed that after the first 8 rounds of Chemo the tumor was 95% dead!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is a strong indication that Kira is responding well to the Chemo treatments (less than 90% indicates a poor response) and it is having the desired effect on her type of cancer.

Studies have shown that even with the tumor removed and tests to this point showing no other signs if cancer, there may still be active cancer cells hiding somewhere in her system.  

Studies have also shown that the 14 rounds of Chemo after surgery have the best success of killing any remaining cancer cells and fully curing this type of cancer!!  Even after the last round of Chemo is done, only time (2 - 10 years) and follow up testing will tell if Kira is cured!

It will take Kira until the end of September to complete the next 14 rounds of Chemo.  However, as with everything else with this whole deal...we will not make any concrete plans until the last round is complete.

Take today (Monday June 8) for example.  During the medical assessment before Chemo treatment started, the Oncologist had the plastic surgeon take another look at Kira's leg.  The one spot on the back is still not healing as fast as expected.  It was decided that he would perform a quick surgery (1.5 hours) tomorrow (Tuesday June 9) to clean up the one spot.  This will delay todays round of Chemo until next week.  

Through it all Kira still keeps a mostly positive attitude and keeps getting stronger both physically and emotionally.  She has been doing Physio 3 days per week (plus at home) to strengthen and train her leg and brain to work together.  

There have been a few emotional moments because summer is here and her friends are camping, playing at the lake and having fun!  We keep reminding Kira that she will soon be done with this and we will make up for missed fun!!

Physio, Physio and more Physio!  Kira is getting electronic muscle stimulation here.  

Our Jewel Theatre in Stettler offered Kira another VIP private movie, Pitch Perfect 2!!  It was a great morning!!  Kira is hiding from me here cause the flash was too bright! This is Kira with our friend Sara! :)

The perfect reason to celebrate...great pathology report!!!!  We celebrated with a donut cake on National Donut Day!

...and a Piñata.

We baked some cookies!

Kira's mini me doll!  Created by a wonderful company called Feel Better Friends.
(Check them out on Facebook)  Kira's doll has all her surgery scars, her matching clothes, her Rotationplasty, even her port!  Also comes with hair, for once hers grows back!  A very talented lady named Annette, who lives in Ontario made Kira's doll.   Kira loves it!!

Got to have a wiener roast at Gram and Grampy's campsite while we were home.

She loved the swing while at home!!  

And more Physio! 

Back at the hospital today.  Still smiling, even after finding our that she's now having surgery tomorrow.  What a positive, awesome kid!