Home For A Rest

It’s Saturday night, just finished a good Garth HOME cooked meal, kids are bickering back and forth, I'm yelling at the TV (Flames/Canucks game 6).  Ahhh…it’s good to be home!

Another pretty good week.  Kira’s chemo went well, she did feel crappy while it was running however quickly recovered once it was done.

Kira continued her school work this week and watched lots of movies.  There is a community play room on the Oncology ward (The Sun Shine Room) where Kira spent time making crafts and playing Bingo (Jace was visiting for a day and also got to play).  Later in the week most of the patients on the Oncology ward were put into isolation (confined to their rooms) due to a virus going around the ward.  This also resulted in The Sun Shine Room being closed.  Because of this the music man (a volunteer) spent some time with Kira in her room where they played many different instruments, singing and making music.

There were also a few visitors this week, both sets of Grandparents, BJ’s cousin Cindy (also Kira’s personal chef) and family friends.  

Kira also had a visit from another girl named Keira, who is 8 years old and has had Rotationplasty Surgery.  (I know, they have the same name, so cool right!) 

Jace and I were at Market Mall and I recognized Keira from her YouTube video!  I knew I had to talk her and her mom!  I introduced Jace and I and we had a great visit right in the shoe department of Sport Chek!!  They were able to come to the hospital later that day and meet Kira!!  This allowed Kira to see and talk to someone her own age with the same type prosthetic leg as she will have.  This was a very inspirational visit as Keira is very outgoing and plays sports like Hockey, Skiing and Track & Field.  Had she been wearing long pants rather than shorts we would not have suspected she had a prosthetic leg by watching her walk and move.  The fast paced game of ball hockey in the hallway between Keira and Jace (within 15 minutes of meeting each other) was also cool to watch, just two kids being kids, another day on the playground!!

To round out the week, Kira had a Dentist checkup (all good), an MRI on her leg so the surgeon can prep for the upcoming surgery.  She also had a CT scan on her lungs to confirm that cancer had not spread since starting chemo.  The results came back ALL CLEAR!!  This was great news, if it had spread it would have been a major game changer which we happily are not having to discuss!!  

We are hopefully home until May 4th when we return to Calgary for Kiras’s surgery. 

Just a few of Kira's Stats to date...

Needles:  37

Surgeries:  4

Nights in the hospital:  37

Tests and Xrays:  21

Chemo treatments:  8

Hours of Chemo:  32

Blood Transfusions:  3

Isolation/Fever/Neutropenia:  9x

Ambulance Rides:  1

And as I finish this post...the FLAMES HAVE JUST WON THE SERIES!!!  WOOHOO!  
GO FLAMES GO!

MRI

Dental visit

Chemo

Music Man visit

Our room these last 2 weeks had a great view of the fish tank!

The Sun Shine Room

We love all of the wonderful caring nurses at the ACH!!

We are outta here! START THE CAR!!!!

Another week down, and a glimpse of what's to come.

So once again, the minimum 72 hours to flush the Chemo Medication from Kira’s system took 132 hours, her system cleared Sunday morning.  This Chemo Medication needs to be flushed from Kira’s system to prevent damage to her Kidney’s.  Given that Monday April 20th (tomorrow) is the next round of chemo Kira will not be getting home for a break this time.  Kira got a day pass on Sunday and was able to hit a couple of playgrounds and go to Cindy and Rob Halfords for an awesome super. Otherwise Kira had a good week this time around, very little nausea and a good appetite all week.  She started meeting with a teacher at the Alberta Children’s Hospital to help with school work.  She spent lots of time this week playing with Barbie’s and chatting with just about anyone who would listen about her upcoming surgery.  The one highlight here for the kids is Bingo, which is on Wednesday afternoons, any kids that play get to choose something off the prize cart and the selection is quite incredible!  In fact any kids that may be discharged on Wednesdays insist on staying until after bingo!

We had a meeting with the surgeons (who Kira has met) to discuss the upcoming surgery which has been scheduled for Tuesday May 5.

The surgery is to remove the cancer tumor that has effected Kira’s left femur and the top of her left knee.  This will require part of the femur and the knee to be removed.

After consulting with the surgeon and the oncology team at The Alberta Children’s Hospital, hours of research and consulting with other clinics, the plan is for the surgeon to attempt to perform a rare procedure called Van Ness Rotationplasty.  Based on the x-rays, MRI and CT scans performed so far, Kira is a candidate for this procedure. This  procedure is where they remove the effected part of the femur and knee, and then rotate the ankle 180 degrees and utilize it as a functioningknee.  A prosthetic leg then attaches to the ankle (knee).  This procedure works really well with kids between the ages of 5 and 12, because their bones are still growing.

There are many benefits of this procedure over other options, a few are:

• It is a biological knee replacement rather than mechanical which tend to wear out.

• Once healed (12 weeks) and Kira trains her ankle/foot to act like a knee, she can do everything she did with here real leg (run, jump, dance, bike, scooter, skate…).

• Only one possible surgery to adjust leg length onceKira is done growing in 7 to 8 years, vs the other surgery option that would require surgery every 1 or 2 years to adjust leg length while Kira is growing, then replacement every 10 years (give or take).

This link will provide more information on Rotationplasty.  https://www.youtube.com/watch?v=JozcXncX9KU

Once the cancer tumor is removed, it is analyzed to determine how well the chemo therapy is working.  This will take up to 3 weeks and will determine how long the chemo therapy will continue.  The hope is that the chemotherapy has killed 90-100% of the tumor.

Kira is aware of everything that is happening and has handled it all really well!!  As I mentioned above she is willing to talk about everything.  The Nursing staff, Doctors, Child Care Workers, Social Workers and Psychologists are all blown away by how much she knows and understands. She wants the Cancer GONE and is taking a positive attitude towards the surgery and dealing with learning to use her new leg.

The days are long.

Bingo Wednesdays!

We love it when Jace visits!

Day pass to the playground.

The Unexpected Ambulance Ride

Another week down.  Last week was to be our second week at home however it was cut short on Monday afternoon.  Kira's blood counts dropped on Thursday, which is what they were expected to do.  We expected them to climb by Monday however she was still not feeling well when we went for her usual blood work appointment.  While we where at the Stettler Hospital we checked her temperature  and found she had a fever.  Given she had a fever and her blood counts were low, she was transported from Stettler to Calgary by ambulance.  Once admitted back into the Childrens hospital she was given antibiotics and a couple units of blood. 

It is not unusual for this to happen during the chemo treatments, we were told that even if she had not gotten a fever on Monday we would still have been called into Calgary due to her blood counts being so low.  We can expect for this to happen again during her treatments, just may not required an ambulance ride. 

Ended up being a long week, because she had a fever we had to wait for different cultures to come back to determine what she was fighting.  All cultures came back negative which indicated the fever was simply her bodies way of reacting to the low blood counts.   

It took another couple units of blood and some boosters tho get her counts up by Friday when we were able to head home for the weekend. 

She felt really good over the weekend and was able to take in a movie (HOME) at the Jewel theater in Stettler where the generous owners opened the doors early Sunday morning for a private screening for Kira and a few of her friends.

We are heading back to Calgary Monday (tomorrow morning) for another round of Chemo.  This one does not mess with her counts and does not cause nausea as bad however requires a minimum 72 hours to flush her system.  Hope to be home Thursday or Friday.

Ambulance ride from Stettler to Calgary

Blood Transfusion

Private screening of HOME

The Long Stay

Sorry for not keeping you updated lately..however given that on the last update on March 11th where we said we would be going home on the 12th....we didn't make it home until the 19th!!!  So based on that we have not been sending updates because we really have to control over when we stay or go.  Like they told us in the beginning, plan in pencil, never pen!  

We can tell you that even with the 10 night hospital stay, Kira seems to be responding to the Chemo Meds as expected.  Nausea is the most common side effect and they are keeping this under control with meds.

We are currently at home until the next round of chemo which is scheduled for April 13th.  Issues with low blood counts or a fever could shorten this at home stay instantly.  

We will leave you with some stats to give you an Idea of what Kira has gone through since early February.

Needles:  26

Surgeries:  4

Nights in the hospital:  22

Tests and Xrays:  14

Chemo treatments:  6 

Hours of Chemo:  24

Oh, and Kira has her own private security guard!!  My cousin Ry!  Who we so enjoy visiting with when he works!!!!

Kira with her Beads of Courage

Kira and my cousin Ry

Caring big brother

February 11, 2015...The Day That Changed our Lives Forever

First of all we would like to thank everyone for the support, love and prayers for Kira! We appreciate it all so very much!!!! We thought we should start a blog so we can keep in touch with everyone and send updates on how Kira is doing!  
We just wanted to start of by sharing a little of what has been going on... On February 5, after having a slight limp for a week (no complaints of pain), being checked by our family physician and x-rayed in Stettler, Kira was sent to the Children's Hospital in Calgary for a CT scan, MRI and Biopsy of her left femur. On February 11, Kira was officially diagnosed with having Osteosarcoma, which is a type of bone cancer. They also discovered 3 spots showing on her lungs (the size of the head of a pen) which is usually the second area this type of cancer attacks. On February 13, a biopsy was performed to remove the 3 spots from her lungs and put in an IVAD (implanted venous access device) port in her chest for Chemo injections. On February 16, she started her first round of chemo, which was two days. She remained in the hospital for and extra day to allow more time to control the nausea associated with the chemo therapy meds. We were then able to bring her home for 2 weeks for a rest. On February 23 we were informed that the spots on her lungs were not cancerous!!! It was also confirmed that the cancer had not spread to any other bones!!!! We are VERY happy with this news!! Given that the cancer is localized on the femur and has not spread to any other bones or her lungs, greatly improves the chances for a cure! (80%) For the next 10-12 weeks she will be alternating between the Calgary Children's Hospital for Chemo treatments and home for a rest. During this time she will be kept at home for the most part as her immune system will be unable to fight off any cold/flu bugs that may be around. At the end of this 10-12 week chemo therapy session, Kira will have to have surgery to remove the cancer tumour from her leg, followed by several more weeks of Chemo. (about 32-40 weeks of chemo total) Kira has been very scared but is being super super strong! She is amazing us everyday!!! Considering what she has gone through in such a short time, she's doing great! And still smiling!!! Thank you for being a part of Kira's Army!