About a month into Josiah’s chemotherapy, one of the nurses asked if we had been getting beads for Josiah. I wasn’t sure what she was talking about, so the child life specialist came in with some beads and explained the Beads of Courage program to us.
“The Beads of Courage program is a unique program designed to honor the challenging journey you and your family take while receiving care for cancer or blood conditions. Through the program, your Beads of Courage collection symbolizes your courage and serves to honor milestones you have achieved along your treatment path.” –Beads of Courage brochure
Each bead is a way of saying “This may have been hard, but I did it!” The strings of beads tell Josiah’s story, each procedure, blood draw, chemotherapy and hospital stay are recorded with a bead.
Here is the list of procedure/bead color that Josiah has received.
- Biopsy – Beige
- Chemotherapy/Immunizations – White (Josiah had two of these each week, as he had two types of chemotherapy given to him.)
- Clinic visit – Blue
- Dressing Change – Gray
- ER/Unusual Occurrence – Magenta
- Infusions (antibiotics) – Purple
- Inpatient admission (one per day of hospital stay) – Yellow
- Isolation/fever – Lime
- Line placement (PICC/Port) – Orange
- Mediation Challenges – Bumpy
- Mobility Challenges – Bumpy
- Pokes (IV starts/blood draws/port access) – Black
- Surgery – Star
- Test/scans (MRI, X-ray) – Light Green
- Transfusions/blood transfusion – Red
- Tube placement (NG, Chest tube, Catheter) – Aqua
- Transfer to PICU (Pediatric Intensive Care Unit) – Heart (Josiah got one every week of chemotherapy, as each treatment was done in the PICU.
- Care Team Visit (Therapy) – Rainbow
- Child Life visit – Hand (I opted to only get one hand per month, ending each string of beads with the child life hand bead.)
- Milestone Beads:
- Special Accomplishments – special bead selection (He got a special bead for his birthday!)
- Act of Courage – Glass selection
- Completion of treatment – purple heart
When the child life specialist brought us the beads for that particular chemotherapy day, she gave a special bead to signify all of Josiah’s previous hospital visits/stays. Because I had journaled every day, I asked if I could go back and fill in the information for the previous beads. She was very excited, and of course, said yes! That became my project each Monday as we spent the day in the hospital for chemotherapy. The child life specialist loved being able to come in and see the progress that was being made, which was such an encouragement.
I first had to fill in all the circles by going back and reading through the journals and looking at my calendar to find the days we had doctor visits. When I received the beads I wasn’t sure where to start – there were so many! I decided at that time to string the beads by color for each month, signifying how many pokes, overnight stays, infusions, etc. he had. I ran out of room on the string I was provided, so I had a string for each month. In order to keep the strings somewhat organized, I went to a craft store and purchased alphabet letters to string the month on each string. While at the craft store, I noticed there were number beads, and thought it would be a neat idea to get those as well, so we could place the day of the month what procedures were completed. That required going back into the journals to see what day each procedure happened, so I could string the beads in the correct order on the correct day. While time consuming, it gave me something to do during Josiah’s hospital stays. With four young kids, it certainly wasn’t something I could do at home – I tried once, it didn’t go well!
The beads became a topic of conversation at the hospital, and it was really neat to see the progress and be able to tell Josiah’s story with each bead on each individual string. The month of October 2012 is rather impressive, since that was his 28 day hospital stay! It has 72 beads!
Here is Josiah’s completed bead board, enclosed in a shadow box that we can hang on the wall. These beads are from diagnosis in September 2012 to completion of chemotherapy treatment in June 2014.
Here’s a close up look at some of the beads! Yellow for each day he was at the hospital, rainbow for therapy, black for IV pokes, hands for child life specialist.
This long string of beads is from October 2012, with a grand total of 72 beads of courage!
We were also given a bead bag to keep our journals and beads all together. VERY helpful for transporting back and forth from the hospital!
The heart bead is for each stay in the Pediatric Intensive Care Unit. The bumpy bead, smiley face bead and “I did it!” beads are milestone beads and special accomplishments to help signify the end of treatment.
Josiah’s name beads were the first he received, along with his “wingman” bead. The large colorful beads signify each 100 beads. Josiah’s well over 500 beads! The heart is Josiah’s “purple heart” for his completion of chemotherapy treatment.