Back At It!

Tuesday May 19th found Kira back in Calgary for follow up Heart and Hearing tests.  As the Chemo treatments continue these tests will become more frequent.  All tests came back good!!  After the tests Kira visited a prosthetist and got to see how prostethic legs are made and learned what steps are involved to getting her leg fitted.  Given that Kira's blood counts were high she finished the day off with some retail therapy at chinook mall!!

Wednesday May 20th, Kira was scheduled to meet with the head surgeon @ 9:15 in the morning to get clearance to start chemo treatments again.  The meeting did not happen until 2pm at which time Kira was given the OK to start treatments again.  During the wait Kira played some golf on the hospital grounds and sampled some fine fare from some food trucks that set up outside the hospital for the lunch hour!!!  

This time Kira handled the treatments really well with no nausea.   This was, we believe, due to her sleeping through the treatments (they went from midnight to 4am) and the right combination of anti nausea medication.  

On Friday May 22nd after getting the OK from the plastic surgeon and given Kira was not showing any signs of nausea her Oncologist told her she could be discharged (1 day early) after hydrating (through IV) until 8pm. The day was spent doing crafts, watching TV and watching the clock for 8pm to arrive. 

Now when we look back over the history of Kira's treatments there is a trend that shows early discharges never seem to happen!  And that holds true here yet again!!

The incisions on Kira's leg are healing very well, however there is one spot on the back of her leg that continues to weep (a pinkish color) daily.  Both the head surgeon and plastic were not concerned with this and indicated it is normal, just a slower healing area.  When changing the dressing @ 5pm we noticed the weeping had changed to a yellowish color.  Given the time it was decided Kira would have to stay one more night so the Plastic Surgeon could have another look on Saturday morning!  Kira was given a pass for the evening so she get out for some fresh air!

On Saturday May 23rd the Plastic Surgeon and Oncologist came to a compromise.  The incision is not infected however given that the chemo slows down the healing and the ability to fight infection were it to happen, they agreed to send Kira home if we could bring her back to Calgary for a follow up inspection in Wednesday the 27th.  START THE CAR!!!!

We are hoping for a quick day trip on Wednesday however the plastic surgeon may decide to help the healing by closing up the incision more.  Will pack a bag to be ready for anything!

Will leave you with a stats update.

Needles:  46

Surgeries:  5

Nights in the hospital:  57

Tests and Xrays:  27

Chemo treatments:  10

Hours of Chemo:  40

Blood Transfusions: 6

Occupational Therapy visits: 12

Kira having her Heart ultrasound.

ECG test.

Hearing test.

Shopping at Chinook Centre!  Feels so good to get out!

Passing some time outside at the Children's Hospital.

What's your handicap!?

All the art at the hospital is amazing! 

This one looked like it was made from bubble gum!!

Having a splint made to keep her foot at a 90 degree.

We met Rheanne and her family this week.  She is an amazing girl who has been exactly where Kira is right now.   She is such a great girl, who is doing so awesome and is cancer free!!!  

Kira joined the Music Man in the Sunshine room this week! 

Rockin the stairs!

Kira and her amazing oncologist, Dr. Lafay.  We are so lucky to have all these wonderful drs, surgeons, nurses... for Kira!  The Alberta Children's Hospital has the best of the best! 

Some days are tougher than others.

Starting the long road of Physio.  Getting some electronic muscle stimulation.

The Battle Continues

It's been 10 days since surgery and Kira is still doing great. 

Days 1 and 2, after surgery consisted of resting and healing.  Kira still had the epidural in and remained in bed.  

Day 3, was kind of a rough one for Kira, no pain but was just having an emotional, crappy day...which I think she was entitled too!  We were told in the morning Kira would be moving back to the Oncology unit (unit 1) for the remainder of our stay.  We had been hoping for this given Kira is familiar with the nurses and staff there.  We were told @ 2:00pm we would not be moving today....this crushed any spirit Kira had left!!! 

However on the 4th day Kira was back to her old self!  All tubes were un hooked and Kira was up and stood with her crutches for a couple of minutes.  Kira also got to finally move back to Unit 1 @ 10:30pm!!!

Day 5, and Kira is showing no signs of pain, is still in good spirits and takes her first (very scary) steps with her crutches.

Day 6, still no pain during the day.  She has been taking Tylenol, Advil and Morphine since the epidural came out, however she had not taken any morphine since late on day 5.  She was up on her crutches again (still very scared and uncomfortable) and walked part way back to her room from the play room (40 feet) with support from 12 loud cheering nurses!  The surgeon said before Kira could leave she had to show them she could do stairs with her crutches.  Based on todays progress it was expected this would take 2 or 3 more days.  Later in the night she started having nerve pains on her leg, she was given morphine and this took care of the pain.

Day 7, Kira woke up and said "I am doing the stairs today".  Got out of bed (with very little help) and took her crutches and made her way across the room and back again.  At 1:00pm she went up and down 4 stair steps (with very little help)!  Passed that test.  Then took off on her crutches to the play room for crafts (roughly 300 feet)!  Lesson for the day...."Never under estimate the power of determination!"  Kira knew that in order to go home she needed to climb those stairs!!  I can tell you she was very scared, however when the time came she did not let her fear hold her back...she gave it everything she had!!!  It will now not be a matter of getting her to get moving...we will likely have to slow her down!

Kira is only using morphine as needed now and has been started on a medication to relax the nerves in her leg (think about it, the leg is shorter and the foot pointing backwards, the nerves are confused)!  Need to stay one more night to ensure she does not have any reactions to the medication.  

Kira's quote for the day while standing on her good leg (no crutches) "Every kid is born with a problem, this is mine".

Day 8, out of bed on her own and moving around.  Started cruising around in a wheel chair on her own.  Many trips up and down the halls and laps around the nurses station while waiting to get the all clear from the surgeon to go home.  When he asked how she was doing Kira said "If you don't let me go home today, I am busting out of here!"  He sent her home!

Kira slept the whole way home.  We arrived home @ 5:00pm.  By 9:00pm Kira had come down with a bad Stomach Flu!!!  Welcome home!!

Day 9, was a very long day, not much sleep for anyone all night and Kira was still not able to keep anything down.  By 9:00pm the effects of the Flu were starting to pass and Kira was feeling much better.  Everyone slept much better that night!

Day 10, is now winding down!  Kira is feeling good, drinking lots starting to eat more.  Moving around as she wants and playing.  Stretching and exercising her leg (has very good range of movement) as instructed before leaving the hospital.  During the 24 hours she was fighting the flu she was not able to take any medication and is remarkably showing no signs of pain!! 

Kira's quote for the day "you know mom, having one leg isn't that bad".

Kira continues to surprise and impress everyone working on her case!  The surgeons are surprised she is showing so little sign of pain, the occupational therapists who got her up on her crutches (they were speechless on Day 7) and are showing her what exercises  she needs to do to be ready for her prosthetic leg in 3 months.  And the phycologist who has not had to spend much time with Kira as she accepts and adapts to each situation so quickly!

We are home for a very short rest, Kira is scheduled to be back in Calgary on Tuesday May 19th for tests to see how her leg is healing and to make sure the chemo hasn't  caused any heart damage or hearing loss. All being well she will be  starting Chemo treatments on Wednesday May 20th.  While it would be nice to have a longer break...the sooner Chemo starts the sooner Kira can be done!

While Kira is going through these next few rounds of Chemo, the process of making her first prosthetic leg will begin.  Kira will also be working with the Occupational therapists who train her leg to use her prosthetic leg.  The hope is that when the Chemo treatments are done, her leg will have healed and she can start using her prosthetic leg.  We are all looking forward to this as Kira can get more independence back and start being a kid again!

I'll leave you with one last Kira quote...Garth said "sometimes I wonder what's going on in that head of yours?"  Her reply, "You should try in sometime, it's a pretty fun place to be!"
:)

Kira passing time and playing nurse with her port doll.

Amanda and Auntie Gayle crafting in the Sunshine room.

Standing for the first time!

Hospital undies are so fun!

First few steps.

Surprising everyone on how fast she takes to the crutches.

Kira's Beads of Courage, now 9 feet long!

GIRLS RULE CANSER! The sign Kira made for her hospital room door.

Having fun burning around in the wheel chair!

The long drive home!

A few of my favs from Kira's photo session with Sweet Light Photography.

A few of my favs from Kira's photo session with Loni Bourne Photography.

Watching the kids play outside!  It won't be long til she's out there with them again!

Recovering from a bad stomach flu!  She's still smiling tho!

The Bravest Girl I Know!

Kira's day got started with a 6:45am wake up.  She was a little scared about the surgery so we talked about it until 7:15am when she was taken to the OR prep where we met with the team performing the surgery.  They were all very reassuring and Kira talked with them and answered all their questions.  At 7:45am she WALKED from her bed to the operating table!!  There are no words in the English language that describe how proud we are of how Kira has handled everything leading up to this moment! As she was being put to sleep the anesthesiologist and Kira were talking about puppies. She was showing Kira photos on her phone of her puppy as she drifted off to sleep. Looks like there will be a puppy in our future! 

We received updates from the surgical team @ 12:50pm when they completed the removal of the tumor, and again @ 3:20pm when the leg had been reattached and the plastic surgeons were finishing up the cosmetics.  

At 4:38pm the two head surgeons came to our room and informed us that everything went worked well and went as planned.  They indicated we may have to wait until the epidural comes out in a few days to confirm that all the nerves are ok based on feeling and movement.

At 6:30pm Kira got back to her room.  She was awake, alert (well a little groggy), and kinda silly!  She was able to move her foot and toes and has total feeling (able to identify what toes we are touching) and laughs because it tickles when we touch her!  A very good indication that everything went extremely well and we will not have to hold our breath until the epidural comes out!  

On Monday, just before we left Stettler to go to Calgary, Kira received a book of "Well Wishes from Loved Ones" created by Katie Quilichini with instructions that it not be open until after surgery.  This was the first thing Kira asked for when she got to her room!!

By 9:00pm Kira had moved from ice chips to Jello to left over Bugs and Cheese from Boston Pizza and was drinking lots of apple juice.  

It is now 10:30pm, she is still happy, chatting and resting comfortably, cracking us up with her quick-witted comments (we could also be overtired) and looking at her new book!!

Kira with her anesthesiologist, after her and Paddington WALKED into the OR! 

Thank you to everyone who send a well wish for Kira!  She has already looked at this several times and loves it!
Thank you to my cousin Katie for this amazing idea and for taking the time to do this for her!  

Kira and Katie right after Kira got back to her room after her long surgery.  Kira was doing great and having fun with her new monkey! 

Thumbs up! Right after surgery!  This girl is truly amazing! 

Kira's Book of Well Wishes is so cool!  There will be many hours spend going through this book!! :) 

The Night Before Surgery

Kira had a great week at home, swimming with her mermaid tail, visiting her class at school, pedicures, the Cinderella movie, playing Lacrosse, doing LOTS of crafts (many involving her foot prints), a couple photo shoots(Kira requested a "family leg photo shoot")and just being a Kid.  Lots of laughs and smiles!  Amazingly there have only been a couple moments of anxiety about tomorrows surgery!  

Kira was admitted today (Monday May 4th) at 4:30pm.  Dr. Kiefer, Kira's surgeon, came in to see if there were any last concerns he could help with.  After a brief conversation he started laying out the orders for the Nurses.

The first of which was to give Kira a pass so she could go have whatever she wanted for supper!  Pizza, Nacho's, Bugs & Cheese and Ice Cream at Boston Pizza!

Second was a bath!  Then port access for blood work and get a good nights sleep!

It's 8:30pm, and even now after meeting new Dr's involved with tomorrows surgery and talking about it with nurses, Kira is doodling on the whiteboard, making jokes, laughing and being silly!!!!  Incredible attitude!!

The plan tomorrow is to take Kira to the operating room between 7:00 and 7:30am.  The surgery is expected to take 9 to 10 hours.  We will be updated on her progress throughout the day and will be informing immediate family as we hear anything. The hospital is very full and there were no beds available on the oncology unit (20 beds, how sad is that!) where Kira is usually admitted.  She has been given a room on another unit however we may end up moving before the day is over.  We will let everyone know where home will be for the next 10 days once we find out.

We asked Kira what everyone who is thinking about her should do tomorrow while she is in Surgery?  Her response "Get some toys and play, take a nap.......have a Turkey Dinner!"  Or to put it another way, do something you enjoy and have some fun!

Kira FINALLY got to use her mermaid tail!  She LOVED it!! 

A underwater family foot photo!

We finally went to see Cinderella with our buds The Lovells!  Yay for good blood counts and being able to be in public!  (well, a little bit of public anyway, still can't go to the germy mall!)

One giant floor puzzle done!

Kira got to visit her grade 2 class, who she misses badly!

A big thank you to Becky of Sweet Light Photography for making Kira's wish of a family leg/foot photo shoot reality!
We can't wait to see all the special pictures your captured!  And we loved the surprise foot craft!!
www.sweetlightphotography.com

Pedi time!

Thank you so much to Loni Bourne for offering her time and talent and inviting Kira into her home studio and making her feel so special!  I love the moments she has captured!!
www.lonibourne.com

Playing lacrosse with the boys!

Fabric painting in the sunshine with Amanda!

We spent an afternoon at Remedy Art Studio with Steph, doing lots of foot themed crafts! 

A few of the crafts we left to dry!  We will finish them next time we are home!

Thank you Steph!!  

I love this one!  Thank you Loni!

Just being a kid is AWESOME!  

We also went to support Kira's friend's brother Jake, who decided to grow his hair out and donate it for cancer.  His dad Terry grew his hair out as well.  Jake is 11 and he raised $5922 for cancer research!  What an amazing kid!!
Kira also shaved Garth's hair! 

Here I am shaving Terry's hair!

Garth, Jake and Terry!