At the end of each or every second day, if he feels well enough, Nicholas, his new growth of soft hair on his sweet-child head bends over a box on his lap and builds a necklace out of beads, one at a time.
The beads are made of wood, porcelain or metal and represent the different tests, procedures, infusions and occurrences with this dreadful disease. Depending on what happened during the day a child may pick any one of, or a few of, the following wooden beads.
Red is for transfusions
Salmon – emergency/ ambulance/ unusual occurrences
Fuchsia – tests/ scans/ EEG, ECG, MRI, bone scan
Teal blue – tube insertion/ chest, catheter
Grape – dopamine, morphine, sepsis (blood infection)
Cinnamon – lumbar punctures
Dark blue – one sleep over in hospital
Green – stem cell harvest/ dialysis/ total parental nutrition
Maroon – good day
White – chemo infusions
Brown – hair loss
Black – needle pokes
Yellow – crappy day
Bone – bone marrow biopsy
The coveted fancy metal or porcelain beads are round ceramic – surgery; fancy ceramic – transfer to ICU; glass or fimo – bone marrow transplant.
The bead program is inspirational for the kids because the assortment of beads on their necklace documents their very personal and hugely difficult journey with cancer and its treatment.
The box of beads travels from room to room while a child is admitted to the ward. The beads are also collected on the way out after a child visits the day clinic on the main floor of the hospital.
The children anticipate their beads almost like payment after a hard day’s work. It is astounding and humbling, but part of the scheme of things around here that receiving chemotherapy counts for a coveted wooden bead. And the porcelain bead one child proudly held up was chosen for losing a limb to osteosarcoma.
The kids wear their necklace just like a brave soldier would wear his medals. How fitting that the beads are called Bravery Beads.
Sunday Feb. 28