Strings, Smiles and the Whispering Voice. Lisanne and Elise’s Story

Lisanne’s grandfather, three of her aunts, an uncle and a nephew – all of them died from cancer. Her daughter got a brain tumour at the age of 1.5 years. They are a Li-Fraumeni Syndrome family. They are living LFS.

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This month marks the 5 year anniversary since Lisanne’s daughter was diagnosed with cancer.

”I remember when me and my husband sat on the big hill next to Sahlgrenska while our precious daughter was undergoing brain surgery. We promised each other to fight this together, to stay together no matter what,” Lisanne says.

The whispering voice has helped Lisanne through the toughest challenges in her life.

“And that’s why I want to tell the story about our family curse. I want to break the taboo regarding cancer and other hard things in life. To make people see how you can listen to the little voice in your head saying; I will try again tomorrow.”

”I will not get a new life, I have to play the cards I have gotten, and make it as good as possible,” she continues.

”Supersnöret”

When Lisanne’s daughter got brain cancer she had to go through both surgery and a massive amount of chemotherapy.

”I wanted to make her journey a little bit easier. I found out about ”Supersnöret”, a string with different beads for different treatments, where the children make there own ”Superstring”.IMG_8082

They had it in Holland, and I thought to myself; This would be perfect for my daughter, and I want it for all the kids in Sweden fighting cancer,” Lisanne says with a smile.

Today most hospitals in Sweden are ”on board” and the ”Supersnöret” is a well functioning therapy, both during treatment, but also after finished treatment, to help showing friends and family the journey of fighting cancer. Find out more about the program below and HERE.

In 2014 Lisanne shared her story for a TEDX talk. About living with cancer. About handing down cancer from generation to generation. About marking the journey with beads. About Living with Li-Fraumeni Syndrome and listening to your inner voice

English Translation from Supersnoret.
SUPERBEADS World’s most important beads

The treatment of children´s cancer is often long and hard. To support and encourage children and young people on this difficult journey, Barncancerfonden Östra presents “Superbeads”

Children receive a superbead for every x-ray, blood test, hospital visit, injections etc. Each treatment has its own specific colorful bead. These Superbeads are added on a string and together they tell the unique story of the childs treatment path.

A few days after diagnose each child receives a waxed string with an anchor and letter beads forming his or her first name. Following this the patients receive new beads for each treatment so they can record, tell and own their story.

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Superbeads purpose
Although the Superbeads can be something children look forward to during hard times it is much more than just a fun collection of beads.

The personal string of beads create a colorful picture of a difficult period that is often abstract and therefore difficult to put into words for the patients. Superbeads give children a better understanding of each stage of their treatment; they get a concrete overview of what has happened. Each patient can fully verbalize his or her treatment/progress by following the story the beads create – every moment in chronological order from diagnosis to hospital visits, x-ray, stem cell harvesting, etc., etc.

If the child is very young during treatment the Superbeads can show them what has happened when they get older. When treatment is over the children and their families have the Superbeads as a colourful informative string of beads to keep and cherish.

How does it work?

All children and young people aged 0-18 that are treated can get Superbeads for free. Staff helps patients and caregivers to learn which bead represents which treatment. After this the patients or their caregivers should ask for the beads they have earned. When treatment is completed the Superbeads are finished with a special bead; no beads are handed out for follow-up consultations.

There are similar programs in different hospitals. Beads of Courage is one program in the US.


Tumor Humor- Screwed Again

Living with LFS can leave you feeling like you’ve lost your mind. Keeping up with doctor’s appointments, screenings, checking out weird lumps or bumps and finally keeping sane through it all. Sometimes the ridiculous happens, or the ridiculously weird and you just have to share it. Introducing Tumor Humor- a new segment of our blog where we can share the laughs with others. Our very first submission comes from Courtney and her son Christopher who are in Seattle.


My son Christopher had brain surgery when he was 6 months old to remove a brain tumor. At that time, they put tiny screws in his head to hold the pieces of bone in place. Recently, while we were at a pre-op appointment for a new growth on Chris’s scalp, he was complaining of some pain in an unrelated place. It was the site of a past surgery. Upon further examination of the most recent CAT scans, the doctor finally concluded that Chris has a screw loose.

One of the little screws that was put in years ago during his brain surgery wiggled out of place. Not only can learning you might have a hereditary cancer syndrome leave you feeling a little screwy, it also helps us appreciate a bargain. For his next surgery we are getting a 2 for 1 deal, removing the growth on his scalp and the pesky hardware that’s causing him pain. 

Do you have a funny story that you’d like to share with others living LFS? Contact us at livingLFS@gmail.com with your story! Laughter is the best medicine.