How Lenox is Beading Cancer…

There are these beads … Not the ones that Lenox stuck up her nose a year ago…
But beads for cancer kids where “every bead tells a story of strength, honor and hope.”

Logo for Beads of Courage, Inc.

The beads are part of a program called Beads of Courage. The program is designed to support and strengthen children and families coping with serious illness by using colorful beads as meaningful symbols of courage and to commemorate milestones along their unique treatment path. The program helps cancer kids in coping with serious illness and provides something tangible the child can use to tell about their experience during treatment and after.

Lenox first began participating in the program at our first hospital visit when she was given a length of string and beads that spell out her name. We were also given a bead bag and a bead color guide letting us know which color or style of bead correlates with specific treatment milestones. Over time Liz and I log those milestones and then get the beads from our clinic Child Life Specialist and Social Worker. Lenox strings the beads – she has chosen to do several different strings of beads instead of one long strand.

Lenox’s Bead Bag

I want to share some of what these beads represent for Lenox, beginning on her very first day of diagnosis. Even Liz and I had not realized the number of times some of these things had occurred until tallied. So here are some stats on Lenox’s beads aka her treatment stats to date.

All of her strands of beads all together.

• Lenox has earned just over 400 beads
• You will note in the pictures lots of blue – Those represent 68 clinic visits
• All those yellow beads – are 57 inpatient hospital admissions and/or nights spent at the hospital!
• Total between yellow and blue this is 125 days of clinic or hospital time – approximately 4 months straight if taken all together!
• The most prevalent color, black, represents 91 “pokes” (IV starts, blood draws, etc.)- OUCH! Liz and I are fairly sure this is actually too low of a number because in some cases it took them 2 or 3 tries to get a vein or access her port and occasionally her line would be compromised and have to be redone (those are not counted here)
• Not including the daily dosages of chemo, or home administered chemo, Lenox has had 37 chemo treatments
• Lenox has been to the ER 6 times
• She has had 16 lumbar punctures (spinal taps)
• she has had 21 surgeries / events under anesthesia in the OR
• she has had 16 types of tests, scans, x-rays, etc
• Lenox’s beads when laid out measure more than 14 feet!

Another neat thing thing about the beads, is that there are beads relating to special accomplishments or acts of Courage – what is so special about these is that they are self-identified challenges and Lenox was able to hand select the beads from a beautiful selection of glass beads. For Lenox some of the special challenges/accomplishments we identified were : learning to take pills; creating and using a routine strategy to get through each needle poke/access; making the transition from consolidation to maintenance; making her own tough decision on whether to get a port again or deal with the pain and issues of having a new arm IV at each visit; going through 3 horrific sinus washes; and last but not least, the thing that Lenox considers to be the one most scary thing is having to do the “white medicine” which is where we carry her into the OR and they give her an initial anesthesia (that is white) that has her cough/gag and then crash out.

There are also a few that are just generally about this road she is on – for instance, they gave her a beautiful glass fish that represents her having to struggle against the stream during treatment.  Also you will see in the picture a  bead that is a face with hair – that bead represents her hair loss.

You can see the glass fish bead (aqua) above her name. Also note the face of a girl to the right of her name. That represents her hair loss.

The strand of mostly more special or challenging issues.