I met Lowie backstage, about an hour before my own talk earlier this month. I had butterflies in my stomach for all sorts of reasons. I’d read about him prior to arriving and perused the blog he’s written about his daughter’s cancer and his family’s journey during her life and death (you can have Google translate it into English). It was so nice to meet him.
I was really looking forward to his talk although a part of me knew I’d need to brace myself, dig fingernails deep into my legs and let my throat tighten when he started to speak. I knew his words would fill my eyes with tears.
His story detailing Guusje’s voice and needs during her cancer treatment did, of course, cause me to cry. But the images he shared also gave me great hope. Learning about his daughter’s life implored me to share his lessons. I realized we could share the beads of courage widely and put these beads in the hands of other families everywhere. You know we can learn a lot from those in the Netherlands — they did just top this list from UNICEF for child well-being for the wealthiest countries on planet Earth.
Beads of Courage
In the Netherlands when a child is diagnosed with cancer, they immediately spell out their name with beads and then chronicle their courage each and every day in order on a string. Each day of chemo, each radiation treatment, each terrible, bad day (green), and each good day gets documented, strung up in line, and valued. A ledger and journal of the courage a child maintains as they fight for life.
To me it seems obvious that these beads of courage can represent a child’s endurance, perseverance, experience, and will. A hand-held way for a child to see where they are and where they’ve been. Yet reflecting on and re-watching Lowie’s talk I realized that more, these beads can represent the wishes and life experience of a child who courageously fights for life during a chronic or life-threatening disease in a health care environment.
These beads can be a tactile acknowledgement of humanism in health care.
Imagine if every child received a bead for each experience they endured in treatment for any disease? Imagine how caregivers and families could visually acknowledge the great journey. What if every injection we gave came with a documentation of the courage it took to take the needle?
Lowie and Yvonne van Gorp shared Guusje’s beads of courage with me after the talk. The meters of beads were heavier than I expected and more beautiful, too. With two of Guusje’s siblings and her 2 parents gathered around, I heard them repeatedly effuse about Guusje’s immense pride for her beads during her 7 month journey with cancer. It was obvious that all four of them carried with them a great sense of honor, these beads an emblematic string of their love.
Beads of courage can remind us the import of childishness in health care. For children, a need for a strong voice in decision-making, a need for school, for moments of creativity, mindfulness, and play each and every day. These beads can be more valuable than their weight in gold.
Listen to Lowie in this 8-minute talk as he details his experience with Guusje’s diagnosis, cancer treatment, and courage. Share with me ways that we can get these beads to be considered the standard of care here in the US. Let’s really increase well-being for us all.
Do you know any hospitals that start the beads of courage like they do in the Netherlands?
Heidi Roman says
I was introduced to Beads of Courage during my residency training at Children’s Hospital and Research Center, Oakland. The oncology department had a very robust program and it was very powerful for patients and families (and for us as trainees to witness). Would be wonderful to see programs like this become standard of care.
https://www.childrenshospitaloakland.org/healthcare/depts/beadsofcourage.asp
Wendy Sue Swanson, MD, MBE says
So wonderful to hear!! Dr Roman, thanks so much for the link. Will hopefully get this going elsewhere!! It’s likely happening far more than we know.
Wendy Sue Swanson, MD, MBE says
Also just found this organization that supports the program for hospitals here in US
https://www.beadsofcourage.org/
Elise Opel says
Children’s Hospital of Wisconsin also gives beads to patients receiving treatment for cancer. A parent shares,
“E has quite a string of beads…we actually have started two strands already…they are sooo nice for the kids…..They get them after chemo treatments…”bumps” in the road, mind you E has a few of those…and then for bravery and just having a good day!!!….
Kelly says
Beads of Courage is offered to cancer patients at Seattle Children’s.
Cindy Wright says
Yes we do have Beads of Courage @ Seattle Childrens! I have been working w/ Beads of Courage here since it’s inception 2 2/1 years ago. I work in the hem/onc clinic and am responsible for ordering all the beads for the clinic and in patient departments. Beads of Courage has meant so much to our patients and families. It shows the journey that these patients take, through ups and downs, and the patient can tell what every single beads means. The bead necklaces can sometime be over three feet long!
Currently @ Seattle Children’s we only offer beads for the hem/onc patients as we don’t have someone to sponsor us. Beads of Courage is graciously funding us @ this time. In the future, we would love to involve Chronic illnes and Cardiology.
With Beads of Courage will be having a walk the weekend of May 17th, I’m not sure of the date as of yet so stay tuned! All proceeds from the walk will go to funds for Seattle Children’s Beads of Courage.
Wendy Sue Swanson, MD, MBE says
Awesome!! Keep us posted.
What percent of heme/onc patients do Beads of Courage?
Cindy Wright says
At this time, guesstimating, around 60%. Our AYA patients aren’t always involved. That said, we’ve had all ages and genders receiving beads. Parents are often starting them for their infants or toddlers.
Karin Wagner says
2013 Seattle Beads of Courage – Bead Challenge
Please join us for the 2013 Seattle Beads of Courage ‘Bead Challenge’ on Saturday, September 21st, 2013 at Seattle Glassblowing Studio. This is a day for participants in the Beads of Courage program to meet glass bead artists and watch beads being made. A bracelet making table and other activities are planned as we honor courageous children coping with serious illness.
WHEN – 10 AM – 4 PM on Saturday 9/21/2013
WHERE – 2227 5th Avenue, Seattle, WA 98121 [in the Belltown neighborhood, between Bell & Blanchard, under the Monorail]
For more information, please contact Seattle Glassblowing Studio at (206) 448-2181 or visit the Facebook event page:
https://www.facebook.com/events/499412980148245/
Wendy Sue Swanson, MD, MBE says
Wonderful — thanks for sharing here. Will do my best to swing by!!! (And will share this on FB, etc, this week)