Five years ago, I first began chemotherapy at Arkansas Children’s Hospital to treat my first cancer diagnosis. It was at that time that my first child life specialist, Emily introduced me to the Beads of Courage program.
The Beads of Courage website describes the program as: “Every Beads of Courage® program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed. Every time a bead is given courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed.”
Essentially, there is a chart with a list of treatments and medical procedures that oncology (and other frequent) patients have to go through, such as scans, needle pokes, clinic visits, chemo, and a night in the hospital. For each treatment or procedure listed, there is a specific colored bead. Patients (and their parents) fill out the chart with the procedures they have had, and a nurse or child life specialist gathers the colored beads they have earned.
While I immediately was open to the idea of the program, it did seem a bit childish at first. I quickly realized that it was a good incentive to help me get through difficult days at the hospital.
I began earning beads at a fast pace and I display them on strands of string. Every bead is in chronological order and tells my story. I have now had three cancer diagnoses, so I have three strands of beads.
The program helps me keep track of how much treatment I have had and reminds me how far I have come. On particuarly difficult days, I feel proud to have earned tons of beads.
My beads are now one of my most prized possessions and I am grateful for the Beads of Courage program.
- 1 fungal infection
- 1 tumor biopsy
- 2 allogeneic transplants
- 2 rapid response calls (MET team)
- 81 dressing changes
- 36 eye treatments
- 222 clinic visits
- 46 ER visits
- 171 days of chemo
- 3 donor lymphocyte infusions
- 872 IV infusions + inhalations
- 46 nasal scopes
- 37 days of IV nutrition
- 124 tests
- 268 needle pokes
- 33 times sedated
- 15 operating room visits
- 9 line/port surgeries
- 3 central lines
- 3 ports
- 14 bone marrow biopsies
- 4 lumbar punctures with chemo
- 185 blood transfusions
- 249 nights in the hospital
- 40 radiation treatments
It can be so easy to grow tired and frustrated with treatment. Whenever I grow weary, I remind myself of a few things, one of which is all that I have survived already. My beads are a visual to to every physical challenge I have faced throughout the course of five years of fighting and they encourage me to keep persevering.