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Kira Larissa Chandler

Nov. 22, 2004 - Mar. 28, 2013

    Meet Kira Larissa Chandler, she is an inspiration to us all.  Even through her hardest days her loving and fun spirit was contagious.  You couldn't help but smile when you heard her giggle.  She was an energetic girl that lived life to the fullest.  Kira was born in Kentucky and moved to Florida in 2007.  She attended Bonita Springs Charter School.  On Feb. 9, 2012 our world as we knew it was changed forever.  Kira told us she saw double while watching TV.  We thought she needed glasses.  After a visit to the pediatrician we went to the local ER to get several tests done.
    Late that night went up to All Children's Hospital in St Petersburg.  We learned Kira had a "unidentified mass" centered in her pons (middle section of brain stem) causing her 6th nerve palsy (double vision).   Kira spent the next few days having every kind of MRI, CT scan, and spinal tap.  Doctors said it was inoperable.  The mass was very atypical.  The doctors were only 80% sure of the 5 possibilities it being a brain tumor.  The mass had doubled in volume in 5 weeks, it was aggressive.  Kira still wanted to play soccer and with the doctor's permission she did.  She played with all heart and double vision!!  Through this tough journey she always had a smile on her face and full of joy.  Kira had a biopsy done on Mar. 29, 2012.  We wanted to make sure treatment was for the correct diagnosis.  The results came back DIPG (Diffuse Intrinsic Pontine Glioma) /GBM (Glioblastoma multiforme).

    Kira was in for the fight of her life against a malignant brain tumor.  It was inoperable and there isn't a known cure for it.  We relocated to St. Petersburg for 6 weeks.  On April 10, 2012 she started radiation for 6 weeks and a clinical trial chemo Vorinostat for 10 weeks.  Kira liked that the Vorinostat was oral and we were able to administer it to her.  She still kept up her amazing spirits and asked doctors if it was okay to ride roller coasters before her radiation.  Kira was blessed when family and friends sent her get well cards and gifts.  She was such a trooper through it all.  Kira was extremely brave.  She chose not to be sedated during her radiation and MRIs.   The doctors questioned her abilities and she proved them wrong each time.  Radiation ended and Kira was able to attend the last 3 days of her first grade!

    On Kira's 3rd MRI there was an increase and she was taken off the Vorinostat trial.  So we carried on and searched the country and out of the country for every option available.  In July 2012 we went to Cincinnati Children's Hospital to look at other treatments.  We kept our hopes and prayers going for her.  We attended a brain tumor conference in Chicago.  We tried to gather as much information on pediatric brain tumors as possible.  That was our job to process all this medical information.  The kids were blessed to start their 2nd and 5th grade at home. 

     In Sept 2012 we went out to Scottsdale, AZ, the entire family went this time.  Kira started treatment at Envita Medical Center.  She had surgery for a port for her IV therapies.  She and I would do her online schooling and crafts during those long days.  Kira went to Mexico for a bone marrow aspiration.  This was in hopes of a vaccine to attack the brain tumor cells.  We waited for the cells to grow as she still got daily IV therapies.  Kira got her MRIs at Phoenix Children's Hospital.  Kira loved decorating for the holidays.  We even put Halloween and Thanksgiving decorations in her room at Envita.  During the long wait for the cells to grow we took weekend trips to the Grand Canyon and San Diego, places the family had never been before.  She got to sit on the beach and eat a muffin.  These simple pleasures one takes for granted, Kira so enjoyed! Kira also celebrated her 8th birthday in Scottsdale!  Her excitement continued from St. Petersburg to check the mail.  Every afternoon we would take our trip to the mailbox and some days to the clubhouse for a package.  As long as she was physically able she would open all of them, she might have to take a break, but always came back to open and read the notes and cards!  They were very encouraging!


    We found out the cells did not grow and we said even bigger prayers.  Just a few days later St. Jude Children's Hospital called and told us she was eligible for a clinical trial that just opened up.  It was one we looked at when talking to the doctors at the brain tumor conference.  The trial was supposed to start in Sept. This was now the beginning of Dec. 2012.  We came home on a Thursday and Kira and I flew out on a Sunday.  Mike and Blake started the drive for relocating to Memphis.  
    Kira had a few very long and busy days of testing at St. Jude.  She started 2 chemotherapies Crizotinib and Dasatinib, both were oral again.  Kira also started P/T, O/T, and speech therapy.  St. Jude was amazing that amongst all the medical tests and treatments they still give kids back some of their childhood.  Kira so enjoyed art therapy, her artwork is displayed in E Clinic.  She really liked pet therapy!  If she was not scheduled with appointments, we still went to the hospital on Tuesday mornings to see her favorite dogs Jake and Boss.  
    We celebrated Blake's 11th birthday with a surprise party from family that came to visit!  We made it a home for the kids ... "home is where the heart is".  Along this journey you really recognize what matters in life and the simple pleasures one didn't notice before! Kira was now in a wheelchair due to her right side going numb.  Her right arm and leg had paralysis starting.  For those that have been on similar journeys understand the steroids ... bitter, sweet.  They helped with swelling but oh the sleepless nights they cause.  Through the nausea and headaches we attended Christmas parties, holiday events for the kids, and even learned how to knit.  Kira kept her amazing spirits going despite the situation she was in. 
    During January Kira was taken off her meds for low blood counts and fatigue.  After pausing her meds, she started feeling better and went back on the 2 chemos since doctors ruled out symptoms from the tumor.  She "cherished every moment"! That was on a pendant from our retail therapy trip to St. Jude gift shop.
Kira got the pendant as a "you did it" gift for the initial 6 weeks. Dr. B said we could go home after her 10th MRI.  We could administer the 2 chemos and get weekly labs at All Children's. 

     Kira adjusted to the daily challenges, she was one "tough cookie".  We made it to her P/T and O/T.  She had a homebound teacher, art therapist, and youth pastor come to the house.  On Feb. 5, 2013 her weekly blood level was low and she was admitted to All Children's.  Her protein needed a boost.  We got home and added protein shakes, eggs, and beans as much as possible.  No child should ever have to face the uncertain days she had to face every day.  Kira started having swallowing issues and dizzy spells, yet she still didn't complain.  She always looked for the blessings!  She would find something to smile about even if it was as simple as eating crab cakes or a silly puppy on a shirt.    

    Scanxiety was there when doing a CT scan to get ok from Dr. B for Kira to fly.  There was concern of pressure, the scan showed none and she was cleared.  We went back to St. Jude for her 6 week follow up the first week of March.  She had her 11th MRI.  When labs came back her levels were critical and she was admitted.  One level low one day, she was given IVs and a new level was extremely low the next day ... protein, calcium, sodium, potassium.  She was taken off the 2 chemos.  Dr. B wanted to observe her for a few days just to make sure her levels remained stable. 
    Kira started a new chemo Etoposide when we got home.  It was the 4th type she was on.  Daily struggles were even more challenging.  She had a home nurse come and do labs.  We did what we had to and made the best out of every moment.  Kira really enjoyed baking and cooking.  Of course cupcakes were her favorite!  Kira would look up recipes we could fix for dinner.  She was really fatigued a lot and rested most of the day.  Those steroids were keeping her up through the night and hungry all the time. Her headaches became constant and we tried to comfort her as much as possible.   
    Kira wasn't feeling her normal pain on Mar 27th.  She had her roughest day.  We couldn't get her headache under control with her normal morphine.  This was due to the brain tumor's increased size.  We had a home nurse come through out the night to help with pain meds.  Even through the hardest morning Kira kept her amazing spirit!  She asked "Are the cupcake people coming?" On Mar. 28, 2013 she was supposed to have a cupcake party with a local baker and film her session.  Kira had 2 seizures that morning.  We snuggled with her at home.  Her dad, brother and I held her in our arms and kept telling her how much we loved her.  We listened to her favorite song "God's Not Dead".  She took her last breath while holding our hands.  She now lives with Jesus in Heaven.  We believe she is healed in Heaven with no pains and no wheelchair.  She is probably on a beach playing and eating a cupcake! 

    At Kira's Celebration of Life there were so many people there that were blessed by knowing her.  Kira had such a joy and love for life, we had to play her favorite songs and celebrate her life like she would want.  There were beautiful butterflies released.  We got butterfly kisses from her that day.  Family members and friends wrote notes on balloons to send to Heaven.  Kira gave us one back! Look at the clouds ... I <3 U!!!!

    Along Kira's journey we've learned so much:

Cherish every moment!

Count your blessings!

Everyday is a gift from God!

Don't wait for the storm to pass, learn to dance in the rain!

We were blessed to be her parents for 8 years and 4 months!

    This is something no child should ever have to go through.  It was extremely hard watching our child cope with it for a year and 48 days.  It is heartbreaking to see the endless stories of the kids, warriors and angels.  We were once unaware, not knowing about childhood cancer ... radiation, chemotherapy, surgeries, weekly labs, and all the other parts of it.  This is why we started The Kira Foundation!  We will help and support these kids with all we can.  We HOPE for a CURE!!!!!!!!!!!!!!!!

Butterflies are the heaven sent kisses of an angel  *  Butterflies are the heaven sent kisses of an angel  *  Butterflies are the heaven sent kisses of an angel

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