Cheyanne’s Story

The thing is childhood cancer impacts all those around the child and family.  In a moment your child’s best friend could be diagnosed with a terminal disease.  Imagine having that talk with your kindergartener- or first grader.  I thought immediately of Madeline’s friends at school and her longtime friends from preschool…

Here is a story about a girl who is now with Madeline… from her first grade friend and her mom’s perspective.

Cheyanne’s Story

By:  Brett Caito

In December 2016, close to Christmas time, I learned of a girl in our community who had just been diagnosed with a rare and terminal brain tumor.  DIPG.  She was given less than a year to live.  It wasn’t until I learned the little girls name that my life would change forever.  Cheyanne Brant.  A first grader in our Elementary school where my daughter also went to school.  My daughter Makala would talk about a Cheyanne all the time.  In fact, she asked if we could take her bowling over Christmas break.  I thought to myself, it couldn’t be the same Cheyanne, but it was.  They were in the same first grade class together.  My heart was broken for Cheyanne, her family, and my daughter.  I felt like we had to do something.  Even if it was just to put a smile on her face.
About 2 weeks after Cheyanne was diagnosed Makala and I went to Galisano Children’s Hospital in Rochester, NY to bring Cheyanne an American Girl doll.  My plan was to leave the gift at the desk and go on our way.  I didn’t want to intrude on the family at such a difficult time.  The woman at the front desk insisted we go deliver the gift ourselves…so we did.  I remember tears swelling up before even reaching the elevator.  I had done my research on DIPG and didn’t know what to expect but knew it would be awful.  When we reached her room on the 7th floor Cheyanne’s parents Ray and Jodi met us in the hallway.  They were overjoyed to see Makala.  Excited for Cheyanne to have a friend visit.  They warned of us of her condition and wanted to make sure Makala would be ok.  Makala wanted to go in the room so we did.
Cheyanne was mostly asleep.  Half of her face was paralyzed.  She could not talk, she could not walk but when Makala entered the room she stuck her little hand out to hold Makala’s and the girls just sat there holding hands while the rest of us cried.
Cheyanne was diagnosed on December 23, 2016 with DIPG.  A rare and inoperable brain tumor with a less than 1% survival rate.  Her first symptom was a lazy eye.  She had to get glasses a few weeks prior.  The tumor was discovered after she began to become weak on one side of her body and experiencing bad headaches and vomiting.  Cheyanne began 6 weeks of radiation.  She remained in the hospital for this entire time.  She spent her 7th birthday in the hospital and she didn’t get to go home for 75 days.  It seems most kids experience a “honeymoon” period after they complete radiation.  Their symptoms lessen or even subside for some time before the tumor begins to grow again.  They are given a chance to live a normal life for a short amount of time.  This didn’t happen for Cheyanne.  Sure, she began to speak again and was able to eat.  But she would never walk again.  She never became well enough to do her Make-A-Wish.  We never got to take her bowling.  She did begin to laugh again which was a wonderful sound.  Her laugh was contagious.   She had a little stuffed dog that she would always make “meow” instead of bark and she just thought it was hilarious.  Jodi would tell me stories how Cheyanne would wake in the night and would hear a “meow.”   Cheyanne just wanted to walk again.  She couldn’t understand why these things we take for granted were ripped away from her.  She wanted to walk, to run, to play with her friends.  It wouldn’t happen for her.  I felt so guilty for not planning a play date before Cheyanne was diagnosed.  Makala had asked several times.  Why didn’t I do it?  I thought we had more time.  LIfe was busy…we’ll do it next week.  Little did I know Cheyanne didn’t have a next week.  After radiation Cheyanne received some Avastin treatments which seemed to shrink the tumor some but it came back with vengeance.
From the moment I learned that my daughter’s friend had been diagnosed with terminal cancer I thought she would be different.  She would be the miracle child.  This couldn’t happen to this little girl or my daughter.  It just wasn’t possible.  But it was possible and it would happen, and it would happen fast.  On June 21, 2016 I would take my daughter to visit her friend for the very last time.  She had declined rapidly only 6 months past her diagnosis.  I knew that day it was going to happen soon.  Makala sat by her side and held her hand for awhile.  The next morning, June 22, 2016 I woke up to messages that Cheyanne had passed away peacefully around 3:30 am in her dad’s arms and surrounded by family.  It was the last day of school for the kids here.  I felt guilty but I sent my daughter off to school without telling her that her best friend had passed away.  In fact, I didn’t tell her until late that evening when I just couldn’t keep it from her anymore.  Her reaction was worse than I had expected.  I thought maybe she wouldn’t totally understand.  But she did.  And she sobbed and sobbed the rest of the night.  My heart broke into a million pieces for her.  Cheyanne should have been at school that day celebrating the last day with her friends.
DIPG stole a daughter, a sister, and a best friend from this world.  Cheyanne deserved so much more.  She deserved to grow up.   Cheyanne was so loved by her entire family.  Her mom Jodi, dad Ray, sister Haley, and brother Devon.  They all remained by her side throughout her battle.   My heart breaks for her family every single day.  Today I sent my daughter off to her first day of second grade.  Cheyanne should be there too, they should be making each other pictures and playing at recess.  Instead Cheyanne’s desk is empty and here I am writing about her disease and death.  I’m sorry Cheyanne….I’m sorry I didn’t schedule those playdates in time and I’m sorry I didn’t do more to stop childhood cancer before I met you.  I didn’t know.
September, Childhood Cancer Awareness month has come upon us.  Don’t wait for cancer to affect your child or someone you know before making a difference.  Childhood cancer does not discriminate and it can happen to any child at any time.  We need to stop it in it’s tracks.  We need to find a cure.  Cheyanne will always hold a special place in our hearts and in our home.  I will continue to do what I can to fight for a cure in her honor.

 

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