A Bittersweet Story

Noor Ayesha, her husband, and daughter.

"The fight to save the life of a young Kitchener, Ont. woman has come to a sad end

"Noor Ayesha died Sunday after battling the rare and deadly cholangiocarcinoma, better known as bile duct cancer.

"The 26-year-old gave birth in February 2023, shortly after her Stage 4 diagnosis. Ayesha had hoped to extend her life so she could spend as much time as possible with her baby daughter. A drug, called Pemigatinib and sold under the brand name Pemazyre, was key to achieving that.

"As it wasn’t covered in Ontario, the community rallied to help cover the drug’s $15,000 per month price tag.

"Just last month, there was a breakthrough in the Ayesha’s fight for the cancer drug.

"The province finally decided to fund the Pemigatinib on a case-by-case basis.

'“This came from promising new, real-world evidence as well as patient and family advocacy that prompted the manufacturer to make a resubmission to the CDA-AMC for the treatment of Cholangiocarcinoma (CCA),” read a statement from Hannah Jensen, a spokesperson for the Minister of Health."

Read More: Kitchener, Ont. woman with incurable cancer dies, fight continues to get provincial funding for expensive drug treatment

Daniella Thackray Leaves Heartbreaking Message on LinkedIn

 

This is a heartbreaking story, as people as young as 25 aren't supposed to die from cholangiocarcinoma. What a brave woman, what a short life. Before she died, Daniella Thackray wrote:

If ever there is a tomorrow when we’re not together, there is something you must always remember.

You are braver than you believe, stronger than you seem and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.

Daniella added: ‘I really really do hope that in the years to come more research is done about this horrid cruel disease so that more lives can be saved.

An Insight on “Pop-Up” Urban Memorials

Jane Hutcheon

This video is an excellent insight into funerary practices, specifically memorials. "Those roadside memorials that send shivers down your spine energized a video discussion as Jane Hutcheon opened a dialog with Professor Gordon Coonfield of Villanova University in Philadelphia, PA. The talk centered on how these memorials capture and communicate feelings in deeply personal and very public ways. The video captures the photographs he shared, many from the Kensington Remembers Gallery site."

The video is about an hour long, but it's fascinating if you want to learn more about graphic street memorials, especially concerning violent or tragic deaths (white ghost bicycles, for instance, for individuals who were killed by automobiles while riding bikes).

• You can find Jane Hutcheon at her Substack account, The Juvenile Geriatric.
• Barbara Tien can be found at her Substack, ProjectKin.
• Gordon Coonfield, PhD, can be found at his Villanova University page, where he is an Associate Professor of Communication.

"Forget-Me-Not: How We Memorialise is a six-part series for storytellers and family historians that explores how we memorialize and preserve the stories of people who have died. The series is a collaboration between Jane Hutcheon of The Juvenile Geriatric Newsletter and Projectkin.org, a community of family historians hooked on stories.

"Jane Hutcheon is a Sydney-based journalist and the creator and former host of the ABCTV interview show One Plus One from 2010 until 2019. She is also a writer and performer in theater productions. In 2022 she wrote a show about my mother’s upbringing called Lost in Shanghai, and her latest show is Difficult Conversations with Jane Hutcheon. We’re thrilled to have this Forget-Me-Not series as part of Projectkin."