How on earth can you make sense of an eight-year old needing a bucket list?
Buckets are for kids to fill with sand and make sandcastles. And collect Saskatoons, raspberries or ladybugs. Or for carrying water to pour over their sister’s head.
Janaya Chekowski-McKenzie, is a bright, spunky, beautiful eight-year old, and an incredible fighter with unlimited potential.
However, the list of her medical complications is almost as long as her bucket list.
At birth she was found to be hypoxic due to being in the birth canal too long. And this caused a lung infection. At the age of three months she was diagnosed with a very rare condition called Hypopituitarism – an under-active pituitary gland. Janaya lacks necessary hormones like adrenocorticotropic hormone, growth hormone, and cortisol.
This condition also causes her to suffer from a decreased immune system, leaving her susceptible to infection. Janaya would require a lifetime of medications, and would spend much of her first three years of life in and out of the Stollery Children’s Hospital battling pneumonia. In addition to hypopituitarism, Janaya was later found to have a vision disorder – Optic Nerve Hypoplasia affecting her right eye – she has no depth perception.
Dinosaurs and Pokemon
Despite her overwhelming number of medical complications, Janaya grew and thrived under the care of her mom, Amanda Crow and family. She started school with a series of educational delays, and evolved to an outstanding grade three student who reads many levels above her grade.
Janaya can name every Pokemon and their properties, and has an incredibly vast knowledge of dinosaurs that would rival many paleontologists.
A Rare Cancer
Janaya started getting headaches in the fall of 2017. They worsened as time went on, and on February 1, 2018 she was diagnosed with a rare and aggressive form of brain cancer – “diffuse intrinsic pontine glioma” (DIPG).
As a result her family was told she has a fifty per cent chance of living another year, if treated with radiation to slow the growth of the tumor.
Janaya’s mom said about the moment the doctor gave the diagnosis, “My heart was in my throat. I couldn’t breathe. It was crazy…I just lost all my cool.”
So, Janaya got busy on her bucket list.
Filling Her Bucket
Three of Janaya’s dreams are: New York on stage singing, be in a band and be world famous.
North Pointe isn’t New York but we did our best to help Janaya check off three more dreams on her list.
On Tuesday May 1st, Janaya walked the red carpet after a limo ride from her home in Beaumont. She was on stage with a band and our friends at CTV and CHED did their best to make her world famous.
APPLICATION: As of September 20, 2018, Janaya has developed a fast growing tumor on her brain stem and down to her spinal cord. Please pray for her and her family.
Hope grows here. I share stories that inspire people, build faith in Jesus, and offer lasting purpose. If this material is helpful to you, please follow me.
- Subscribe. Watch for helpful content in your email box early Mondays and Thursdays, as well as upcoming events at North Pointe Community Church, Edmonton, Alberta.
- Follow on Twitter. I daily tweet info I think you’ll be interested in.
- Friend on Facebook. If you “like” my page, let me know you found me here.
- Connect on Linkedin. I like this because it reminds me what people think I’m good at.
I am the mother of an 8 year old as well (In addition to a 2 year old).
My heart is wounded and aches for Janaya and her mother. I am literally writing this as tears stream down my face.
I want to say how absolutely fantastic it is that you are helping them in achieving Making their memories, in addition to each and every person that plays a role. Memories make things a little more bearable and tolerable when everything else isn’t.
May God shine down upon this little girl and her mother, as he tightly cradles her in his arms.
Hello Kimberlee. Thank you for writing. Janaya is so brave – like her mother.
I am always stunned when little ones have to experience these dreadful illnesses. I will never understand why.
The one thing I do know is that God knows, hears, sees and understands our hearts. This thought has always amazed me. God is everywhere, He hears our voice, He sees our thoughts and He understands our whys, He hears our cries and at the mere mention of His Name He is with us.
I once went through a terrible shock with a friend of mine, who had been married 2 weeks and her husband went to be with the Lord. I couldn’t put my head around that and I went to this very wise pastor and said to him, “why, why?” My friend asked me. “I didn’t know what to answer her.” This wise pastor said, “she has to get from the why to the what.” It stayed with me forever. Now I read this. Darling little child. Can we ever get from the why to the what?
My prayers are with this precious child and her family. One thing I know is He is the great I AM!
Lord bring us from the WHY to the WHAT. Comfort this little one and her family. I will be praying for a MIRACLE!
God is faithful.