Keep Kira Smiling

Sunday, July 12, 2015

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!

Monday, June 8, 2015

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!

Monday, May 25, 2015

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.

Friday, May 15, 2015

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!"
:)