Breakfast with the Boss

Our mission is to raise awareness and help others who suffer as does our Kelsey.

Our president, Mary Wagner, and her niece (Kelsey’s Hates the Needle‘s illustrator) shared our book and our mission with Breakfast with the Boss.

Please watch and share:

Celebrate with a Shake

The end of an epic year is upon us.  This year has been filled with experiences, pride, insight, and connections.  Authors Dan and Chip Heath explain how these factors elevate our experiences and change us The Power of Moments.

To culminate this year, our new tradition is to end the year with the celebration of a shake.  We discuss the year we tackled and the joy and challenges is brought to each of us.  Our one of a kind “freak shake” is offered  at a local restaurant.  The shakes are a sugary delight and an experience we enjoy together.

We connect, unwind, and share our favorite memories of the year.

Each year is worth celebrating but some feel more elevated than others.  This one felt especially exciting.

Perhaps it is coming off of a flag football Superbowl victory for our son or a violin rendition of Best Day of my Life for Kelsey?  Perhaps it is because with each new year comes new ways to learn and new bright spots to celebrate?  Perhaps it is just because freak shakes are just that good…

Either way, we celebrate today and the joy that the end of one phase brings along with the start of another.

The Kindess of a Cub

By now, you have likely heard the story: Chicago Cub, Albert Almora, Jr. hits a foul ball and a child is hit.  The ball was moving around 90 miles per hour and a terrible accident occurred.

The hit was accidental.  The reaction is what made headlines.

Fortunate to have Albert Almora, Jr.  and wife Krystal Almora support Kelsey’s Kaleidoscope, Inc, @krystalalmora @kelseys_kaleidoscope we know of Albert’s kindness and commitment firsthand.  His dedication in the off season and genuine compassion are best captured when he is with his family and through the support he provides to charitable causes.

In case you have not yet viewed the news-worthy event:

Composure.  Compassion.  Kindness. The key attributes we should aim for when interacting with one another is captured in the essence of this story.

We are amazed by the empathy and emotion Albert Almora, Jr. displayed on the field last week and the way he exemplifies the traits of courage, gratitude, and respect in his daily life.

To great men who make mistakes, show emotion, and display courage even on live television, we applaud you.

Thank you, @almorajr for reminding us that kindness and compassion mean so much.

The Rear View

As the school year comes to a close, our family has had time to reflect on the year we worked through and locate the bright side of it all.

Our family endured two medication changes, a biopsy, a concussion, 64 doctor views on the biopsy, months of steroids, marks like a cheetah for months, a mysterious eye funk, new scars inside and out, a mangled foot, an ambulance ride in a different state, and too many “I’m not sure” or “I do not knows” responses.

We close the year by putting those in the rear view.  We choose to move forward and not look back.  Though the moments and challenges brought us down at times, the bright side keeps us moving forward.

Our successes included Superintendent’s List, a communion, a character award, new friendships, a new instrument, a new sport, a new club, a gala, a golf outing, and the publication of a book.  We choose to celebrate the moments that made us proud and joyful.  We choose to recall the challenges to remind us to grow and endure.

The Rear View is a perfect lens to see shortcomings, learn from failures, and reflect on success.

The rain comes and goes, but the rainbows make it all worth it.

Reflect.  Reset.  Leave it in the Rear View.

Kelsey Hates the Needle

Author Mary Wagner & Illustrator Krystal Almora @krystalalmora release their first book, a picture book designed to help children ease their fears about vaccines, medications, and injections of any kind.  Please consider purchasing a book.  All proceeds benefit Kelsey’s Kaleidoscope, Inc.

Amazon

Barnes and Noble

@kelseys_kaleidoscope #chasingthecure #newviewforpan

Blessed

Balance and blessings can be hard to see when life gets in the way.

Celebrating the moments and rejoicing in gratitude are daily goals and often struggles.

Saturday was a gift and a true celebration of family, love, and the blessings we have together.

A dress was built from two matriarchs, a headpiece worn decades ago was transformed into  something beautifully old and magnificently new, and love was a part of every turn.

This day was a joyous day.

May blessings surround you today in reflection.

 

Perseverance

Today’s words come from a community that values character and recognized Kelsey for displaying perseverance.  Her teacher’s touching words speak volumes.  Below are the words that were shared about Kelsey and her exemplary character.

“Perseverance (noun), continued effort to do or achieve something despite difficulties, failure, or opposition. When asked what perseverance meant to Kelsey, she stated, “When you try and try even though it doesn’t go your way!” I couldn’t agree more. Kelsey is a perfect example of a student who demonstrates perseverance inside and outside of the classroom.

As she enters the classroom each day with a smile as bright as the sun, and a readiness to learn, you’d never know, but Kelsey fights a rare autoimmune disease called PAN.  PAN is a rare a potentially fatal disease that affects small and medium arteries causing injury to organs and unfortunately, does not have a cure at this time.

Despite difficult days, physically, mentally, and emotionally, Kelsey never gives up. When a challenge arises in the classroom, Kelsey faces it with confidence, patience, persistence, perseverance, and determination.

She is a thoughtful friend and wonderful role model for her peers. She goes out of her way to encourage others, and shows outstanding leadership skills in the classroom.

Kelsey is always willing to lend a helping hand.  Kelsey, I cannot think of someone who could be more deserving of this award than you.  You’re too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated. You are one of the most courageous young ladies I’ve ever met. Never give up!  It is my honor to nominate you, Kelsey, for the trait of perseverance.”

Golfing Glory

Monday, April 29, 2019 was a beautiful day.  Crisp air made the red BMW at hole 7 sparkle as it awaited a hole-in-one that never came.  It sure was fun trying.

Supporters drove as far as three states to attend our inaugural golf outing.  Tee markers showed the generosity and laughter was heard along the green.

The love and dedication of our organization and those who support our efforts is overwhelming to witness.

Monday was no exception.

While drinks flowed and friendship was visible on every cart, our hearts are heavy with the mission we seek to attain.

Kelsey developed a new limp over the weekend to remind us once more of our why.

We are constantly reminded of our why and thank those of you who care about it, too.

Our gratitude goes out to all who helped us make our inaugural event one we will continue as an annual outing.

 

This is Me

The showstopper, This is Me, brought down the house and led to few dry eyes at a recent chorus concert.  Our first every concert of this age group was filled with wide-eyed children singing:

“When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me”
This is Me.  The power of broken parts and scars struck a cord with#thisour family along with the likes of all present.
This weekend, we opened the New England Journal of Medicine to read, Treatment Strategies for Deficiency of Adenosine Deaminase 2.  This is Me resonated differently reading this article.
Grateful for attention on this grand scale in a publication read by so many, we could not feel a strange new chorus…
This is Kelsey and she is simply who she is supposed to be:
Look out ’cause here she comes
she is brave, she is bruised
she is who she’s supposed to be
This is She.

Dream Big

This week, our well visit led to Kelsey conversing with our doctor about how she hopes to be a professional basketball player and a doctor when she grows up.  We always encourage our daughter to dream big and hope she always aspires to do so.

Anyone who couples a headband tiara with a dry fit basketball tee deserves to follow her dreams.  Right?!

We smile and laugh as we dream of the future for our children, with our children.

Then we reflect on recent news and feel it hard to process reality sometimes for those challenged by Kelsey’s disease.  We learned about another patient whose marrow transplant donor backed out.  We are hit hard with that reality. We pray for that family and hold on tight to our hope for our daughter and all the other children we know who suffer.

Another family reached out to ask us about their challenges to discuss treatment options. We try to stick together because learning from others gives us strength and comfort. We pray for our friends near and far and wish them well in their treatment plans as limited options exist right now.

We send positive vibes to anyone who struggles to dream big today, and we continue to hope that someday all of our children’s dreams will come true.