Adjusting to life after being diagnosed with a chronic illness can be overwhelming for children and families. Having a resource, such as Tiger Livy, is helping kids understand their medical experience, validate emotions and build resilience. I’m excited to feature this newly published book with you and host a giveaway.
Spotlight on Cellie Coping Kit
Learning of an illness diagnosis never comes easy, no matter what your age. The challenges surrounding the diagnosis, treatment, and recovery can be overwhelming at times, with each family member coping in their own unique ways. Some will cope well, adjusting to their “new normal”. However, some may need additional support. It’s during these times children and families need extra support to cope and tools, like the Cellie Coping Kit.
The Cellie Coping Kit is a child friendly, research based tool designed to help children and families cope with illness. The kit includes Cellie, a stuffed toy, coping cards for kids, and a book for caregivers. The kit helps kids acquire new skills and strategies for coping with their illnesses. For example, the coping cards provide suggestions for what to do if a child feels sad, hates taking medicine, or is worried about a doctor’s appointment. The companion book for caregivers mirrors the child’s cards, addressing common stressors related to the illness (for example: my child gets sick on the way to the doctor/hospital) and tips to help them cope. General topics covered include communication about the illness, appointments and procedures, treatment side effects, adjusting to treatment, school and friends, and challenges concerning the whole family.
Research on Cellie suggests that families find the kit helpful, engaging and educational. Children and parents report learning more about their disease and ways to manage the challenges and stressors effectively.
One patient wrote, “I hugged Cellie really tight so I didn’t get hurt” (needle stick). Another patient said, “The pain tips help me. And like the signs, and the pain thermometer, the faces, and the belly breathing card, that helped me a lot”. A caregiver shared, “ I like the Kit because it gives a definition of the disease and details, things to do to help prevent pain crises, and tells you how to deal with them when they do arise”.
The Cellie Coping Kit is designed primarily for children ages 6-12 and can be used by the child on their own, with parents or other trusted adults, in conjunction with a child life specialist, mental health therapist and/or the medical team. Currently three versions of the kit exist: Cancer Cellie (English language), Spanish Cancer Cellie, and Sickle Cell Cellie. Cellie’s future includes additional disease adaptations, currently undergoing research for usability and feasibility.
When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”
I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.
I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.
This rare, incurable, autoimmune illness had incredible power over us and I wanted to destroy it with my wishful thinking.
As you can guess, it never came true.
However, other unexpected wishes did.
Resiliency, Empathy and Hope.
These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.
I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults and I would speak up. They needed to be aware of an invisible disease.
I wanted people to feel included and accepted as they are.
Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.
Those were nights that I searched for a shooting star.
I became very comfortable in a hospital setting and I loved to rummage through their storage cabinets and take whatever I was allowed to, ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadow to my career.
These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it is never an individualized disease. I know there are always setbacks with an additional diagnosis, complications, and waiting for an FDA approved treatment. I know that people living with chronic illness don’t want to have a pity party or talk about their health, they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and other’s that struggle with life’s challenges and still find the courage to push forward.
I’m now 35 and still making wishes.