Curious Celeste: giving back to The Children’s families
At only 4 months of age Celeste was diagnosed with an extremely rare form of cancer, Langerhans cell Histiocytosis, which affects 4 in 1 million children worldwide. She is now undergoing chemotherapy treatments at The Children’s.
From the age of 2 months, we intuited something was wrong with Celeste. When we took her to the ER at The Children’s, the doctors worked relentlessly over 72 hours to properly diagnose her of her extremely rare condition. Despite the shock of receiving the diagnosis, it was a relief to know Celeste was in good hands and receiving the care she needed. Catching her disease early made all the difference in providing Celeste the best chances of fighting.
When your child is diagnosed with cancer, a lot of emotions overtake you. Anger, sadness and fear I suppose are the expected ones. Yet, I was also overcome by empathy for every parent of a sick child, gratefulness for the things we had going on in our favor, and determination for using every tool at our disposal to provide Celeste the best care and the best life.
The desire to give back to The Children’s and to support families like mine came instantaneously during our initial 7-day stay at the Hospital with Celeste. I was in awe of the dedication, competence and kindness of the nurses, doctors, and entire staff. There are many moments that are stuck in my head, like when a nurse at the ICU offered to watch Celeste for “as long as we needed” so that my husband and I could go take some air outside, which was exactly what we needed at that exact moment in time.
Something I also kept thinking about was the hefty amount my husband and I were spending on cafeteria food (the $7 lattes and $40 meals for two were racking up). My mind kept thinking of families less privileged than ours, that in the grimmest of times, when having to deal with the devastating news of a sick child, they had to also worry about finances. I felt a burning urge to do something.
In support of The Children’s, we created The Celeste's Fund with The Children’s Foundation and I decided to write a children’s book titled “Curious Celeste”, available on Amazon, which has been published in English, French (Celeste la curieuse) and Spanish (La curiosa Celeste). To date, over 700 copies have been sold to families everywhere and we have already raised over $20,200 to help meet the Hospital’s most urgent needs.
I’ve set a difficult and meaningful goal to sell 1,000 copies by the end of the year so that I could “fight” along Celeste. Knowing that she has a long road ahead of her, I too wanted to sign up for something hard. “We can do hard things” is something that I often tell myself and her since her diagnosis.
I am so thankful for our community that rallied behind this project that I realized to honour Celeste and celebrate her strength and perseverance as she undergoes treatment; to create something that she could keep forever; to share a message of hope and positivity with children and families all over; to put a piece of Celeste physically in people’s homes and in their thoughts so they would send her positive energy; and to contribute financially to the Hospital.
My daughter just turned one, and has by now undergone over 20 chemotherapy treatments, 100 steroid intakes, dozens of scans, probably hundreds of poking and blood testing, and she is still growing, developing, and smiling like a regular kid. I am very proud of her, and how us as a family have managed to find joy in our lives everyday despite these challenges.
I know that no matter how much time it takes her to heal, she is in the kindest most capable hands at The Children’s.
Martina, Celeste's mom