Wednesday, September 2, 2015

A Step Forward

Where to begin...the last update we were waiting to see what the go forward plan would be based on the decreased heart function.  It was decided to wait for two weeks and perform another Echo before giving any more Chemo.

On August 11, Kira went back to Calgary for a leg fitting...very excited...Jon (Kira's Prosthethis) had  the foot socket and upper leg support ready for fitting.  This took a few adjustments and some measurements for the next step of putting them together.

August 12 Kira met with her orthopedic surgeon (Dr. Kiefer) to review her leg x-ray.  He was happy with what he saw and gave his blessing to start walking with a prosthetic leg!  She then had another Echo on her heart followed by a port access and a few hours of waiting for the Echo results, which when they finally came showed  no change in heart function which is good that it had not decreased. However it was expected to see an increase.  So the plan was to stop giving the Doxorubicin (chemo that effects the heart) and continue with the Methotrexate (chemo that does not effect the heart, but does effect the kidneys).  This started at 8pm and including the flush after ended at 8pm on Saturday August 15th when we headed home!  Late night but totally worth it!!

August 18th - back in Calgary for another leg fitting, this time it was mostly put together.  After a few adjustments and measurements Jon had what he needed to attach the foot and finish up the KR-001, the first temporary leg.  Nothing major, just had to basically take it all apart and start again...turns out prosthetics for rotationplasty are challenging...and Jon seems to be loving every minute of it.  

August 19th - Another round of chemo (methotrexate) and 72 hours of flushing.  This one started at 1:30 and ended on Saturday the 22nd at 1:30pm.  Much better time to go home!

August 20th - just hanging around, flush is running @ 250ml/hr so staying close to the bathroom.  Jon arrives with a rebuilt  KR-001 and some tools for another fitting.  This was the day Kira took her first steps since the morning of May 5th.  It was AWESOME!!!  Lots of cheers coming from the Oncology Unit that day!!  Jon's instructions...take it home and give it a try....the next day Kira was so swollen up due to all the fluids that the leg did not fit.

August 24th -  leg fits again!

August 25th - back in Calgary for kidney tests (GFR) and heart tests (echo).

August 26th - meeting with Oncologists to review kidney and heart tests.  Kidney tests results were perfect.  Heart test results showed.....back to normal heart function!!!  It was still mutually agreed that no more Doxorubicin be given!  Next stop...Jon's office for a leg adjustment...there's going to be lots of these!  Next stop...Banff for Cow's Ice Cream, then on to Invermere, BC for a mini holiday!

August 27th - while in Invermere Kira got to visit with Keira Neal (who also has rotationplasty) for lunch.  Great to visit with them!! 

August 29th - Kira went to the Lion King musical in Calgary which was booked before she was diagnosed with Cancer.  You can decide if she liked it by looking at the attached photos.

September 2nd - Kira went back to school!!  This was the first full day of school since February!   

So lots of HUGE things happened since last update... 
- Heart function back to normal
- Got her first prosthetic leg (KR-001)
- Took her first steps
- Invermere and Lion King
- Hair starting to grow back
- Back to school

ONLY 4 MORE CHEMO SESSIONS LEFT!!!!  The last one on October 14th!!

Jon taking measurements for Kira's prosthetic

Jon showing the kids the process of making a leg.  And what a process it is!!

Kira's new leg X-ray!  Very large plate and lots of staples.  

Kira and Kenyon crafting in bed

Had a visit from our cousins, Katie, Rylan and Kenyon

Doing surgery in the Sunshine room


One of the amazing nurses we love, Beca!

Thumbs up to getting her new leg!!

Trying out the new leg


Decorating her room door

Getting ready to take her very first step

First steps!  Walked around the nurse's station 6x.  She's being cheered on by all the nurses!

Of course the new toes have to be painted!

Walking is exhausting!

Kira's friend Mya came to visit!  They crafted, played xbox, did some play surgery,  made a movie...

Kira missed so much this summer!  One thing being her cousins birthday parties.  Thank you to Katie for sending Kira her own special cake!! 

Kira was missing Jace this summer.  This was the message they sent each other.

Post chemo swelling is down, time for another leg adjustment and a try to walk

She left wearing her leg.  So nice to have it fitting again

Cow's ice cream in Banff.  We love it!


She just wants to enjoy summer and go swimming so bad.  Some days are harder than others

Quick stop at The Continental Divide


At The Lion King.  Absolutely amazing show.  Kira loved it so much.  Everytime I looked over at her, she had a huge smile from ear to ear.  I have a Broadway lover on my hands.  

She brought home a Simba, thank you Cindy

First day of school! She was SO excited to be back!!! 

Kira with her awesome 3rd grade teacher, Mrs.VanRingen.  She was Jace's teacher last year, and has been so supportive and helpful!  We are lucky to have her teach our kids! 


Kira's hair is growing back!!!!! YAY!  She asked to use shampoo last nite!  She's excited!! 

Sunday, August 2, 2015

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!!