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
Hi friends and family,
All good news to report. We are now 6 months post chemo and all clear. My oncologist said my PET scan was "rock solid"... can't beat that. I mentioned last time that I thought surely they would space my follow up to every 6 months maybe, but it looks like I will have a CT scan and check up in June and then September, and likely at that time we'll space to every 4 months. It definitely beats every 2 weeks though. I can definitely see that my energy is completely back to normal, which I only realize in hindsight.
Since I last wrote, Erik and I have had many fun adventures. In January Erik surprised me with a weekend vacation to sunny southern California. We had a great visit with my Mom, playing tennis, walking on the beach, and of course whale watching.
On March 24th, Erik and I celebrated our first anniversary back in Randolph, Vermont. It was a beautiful and relaxing weekend, bookended with 10 hour train trips. What a difference in the setting though... feet of snow banked everywhere (as compared to 50s and sunny that we were fortunate to have last year). It couldn't have been better though. We stayed with our dear friends at their bed and breakfast and even had a little party in our honor from our photographer. We ventured outside of the town this time and met some very friendly cows too, that was definitely a highlight.
In the career arena... my travel position in the Peds ICU was cut short due to budget problems, but it opened the door perfectly to my new job in the Neonatal ICU right in the heart of the city. I start at this position in early May, which gives great time to relax and enjoy early Spring.
In the spirit of doing things a little differently... Erik and I will embark on our honeymoon to Croatia this month. Just a preview of what we hope to see...
Happy Tuesday!
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