When I began my journey with Alyssa, it instantly opened my eyes to a whole new world. I remember going into Lurie Children’s Hospital of Chicago feeling lost and a little scared of what to expect. I’ll never forget February 23, 2014. I still have the purple guest pass hidden away in a safe place to symbolize the first day I left the normalcy of regular day-to-day life, to joining a new world where battles are fought every single day by patients and their families.
When I first visited Alyssa, I came bearing small gifts. I stopped by the local Michael’s Arts and Craft Store in Lincoln Park to pick up art supplies. I bought Alyssa some oil pastels, craft kits and a paintable bird house. She eventually created a very special oil pastel drawing which I hold onto dearly. She also painted the bird house in the colors reminiscent of the houses in Santorini, Greece...her favorite place in the world.
When I bought the bird house, I imagined myself in the future, sitting in the backyard with a healthy and beautiful Alyssa, staring at the birdhouse as a reminder of what we went through together. I wanted the birdhouse to symbolize our freedom from the chains of cancer: birds would enter, birds would feed, and birds would freely fly away.
When a young cancer patient checks into the hospital, certain freedoms are given up. They can no longer be like normal children who can go outside and play with their friends. This new world seemed a little lonely from an outsider's perspective. In this new world, it's good to have caring doctors and nurses, but it's even better to make friends who are going through the same exact situation.
Our first gift recipient was staying in the same exact floor as Alyssa. She was going through what Alyssa was going through.
Her name is Kloe. Kloe's mom, Brandi, met Alyssa's family in the ICU family lounge. This was the beginning of a new friendship which is now part of Alyssa's Story.
When Kloe's Mom, Brandi, told me about Kloe's experience, it reminded me so much of Alyssa. I had the chance to exchange emails with Brandi and she told me that Kloe was also diagnosed with cancer at a very young age and experienced a relapse of the disease like Alyssa. Like many cancer patients, Kloe was bound to her inescapable disease.
On January 15, 2004, Kloe was diagnosed with acute lymphoblastic leukemia at age 4. She went through three and a half years of treatment and lost all of her hair three times. Then, at age 15, she relapsed and was diagnosed with acute lymphoblastic leukemia again. She developed necrotizing pancreatitis, experienced respiratory failure, and had to be put in a medically induced coma for nearly two months. She also needed a tracheostomy to help her breathe. Then, Kloe was moved to University of Chicago Comer Children’s Hospital, where Dr. Andres Gelrud and Dr. Jeffrey Matthew saved her life by treating her pancreas. After months of waiting, she was then transferred to Rehabilitation Institute of Chicago. On January 24, 2015, Kloe was finally able to go home but still continues her low dose maintenance chemotherapy.
My words in the previous paragraph do not entirely capture what Kloe went through. My words are not even close to expressing the emotions that Kloe and her family went through. I'm humbled that Brandi shared a little bit of Kloe’s story to me. Like Alyssa, Kloe will always be a truly brave person in my eyes.
Brandi told me that Kloe wanted to play the guitar since she was little. Kloe wanted to use the guitar to “escape” and “express” herself. That’s the beauty of music. Music takes us to a place where we want to be. In the case of Kloe, music provides an escape from the routines of being a cancer patient.
We’re honored to be able to give her first acoustic guitar. Yoli, George, and other members of our organization visited her last week to give her the acoustic guitar donated by a generous couple who wish to remain anonymous. Thank you for believing in our mission to give the gift of music and art to cancer patients.
I hope the guitar makes you free as a bird, Kloe. We're looking forward to hearing you play music!