beads of courage.

After spending a few years in different children's hospitals as an RN and an NP, I became aware of a program known as "beads of courage".  This organization began in 2005 as a way to encourage children and families during their journey with childhood cancer, cardiac surgery, and more recently time spent in the neonatal ICU.  Children are given beads to spell their names and then a specific bead for each IV, x-ray, chemo, surgery, etc. and over time they build something beautiful through a lot of pain.  Although this is intended for children... I decided that I really wanted to do this too, to tell a story, and to remember the details of this last year.  I was unable to order true "beads of courage" beads... so I searched through some beads I had from Ghana and some online and came up with this:

I like that it's a windy, sometimes uphill journey.  So just like any other child, I began with my name... then the story starts upward and counterclockwise.

January 2012:
Initial labs after the lump was detected (light blue IV bead)
IV and CT of my abdomen and pelvis (light blue & white bead with blue dots)
Labs to rule out infectious causes to the lymphadenopathy (light blue)
ECG and labs prior to surgical removal of one lymph node for study (red & light blue)

February 2012:
Lymph node biopsy *instead of surgery* with IV (light blue & skinny yellow bead)
Lung function testing, ECG, and ECHO prior to chemo (bright blue & red x2)
IV and PET scan for cancer staging (light blue & sky blue with white and dark blue details)
Labs, oncology clinic visit, and bone marrow aspiration (light blue, green, & cream colored with red and blue details)
Labs and MRI of hip (light blue & white with blue dots)

March 2012 - May 2012:
IV for port placement (light blue & clear)
Chemo 1 - 4 *each chemo:  labs (light blue), port access (brown), and chemo (yellow)*
PET scan with IV (light blue & sky blue with white and dark blue details)
Chemo 5 & 6 (light blue, brown, & yellow)

June 2012:
Lung function testing, ECG, and ECHO (bright blue & red x2)
Chemo 7 & 8 (light blue, brown, & yellow)
PET scan with IV (light blue & sky blue with white and dark blue details)

July - August 2012:
Chemo 9 - 12 (light blue, brown, & yellow)
PET scan with IV (light blue & sky blue with white and dark blue details)
Completion of treatment! (bright big yellow bead)

September 2012:
Labs, oncology clinic visit, ECG, and ECHO (light blue, green, & red x2)

October 2012:
IV and port removed (light blue & clear)

December 2012:
PET scan with IV (light blue & sky blue with white and dark blue details)
Oncology clinic visit (green)

March 2013:

PET scan with IV (light blue & sky blue with white and dark blue details)
ECG and ECHO (red x2)
Labs and oncology clinic visit (light blue &green)

Way more information that you ever wanted to know... but it helps me to make sense of everything.  I left very little slack in the string, just for scans and clinic visits every few months.  Thank you for all the great support during this journey.

Love,
Katy Jo