Book about deceased cancer patient Juul is making waves

Book about deceased cancer patient Juul is making waves
Book about deceased cancer patient Juul is making waves

Almost ten years ago, doctors discovered a brain stem tumor in Juul, the then 12-year-old daughter of Ellen Eerdhuijsen. Not long after, Juul died. Ellen and paramedic Menno Hagemeijer published a book about Juul’s last months at the end of January this year: ‘Always looking for a party’.

Juul woke up in 2014 and saw double. A visit to the hospital and after seeing several doctors the diagnosis was known. Juul would not have long to live. “Juul was 12 years old, so she could and was allowed to be present at all conversations with the doctors. So she was also present at the conversation in which we heard that she would only have six months to live. I was very angry about that,” says mother Ellen in WNL In the Canteen on NPO Radio 1. “In retrospect, it was nice that she was there, because how are you going to tell your child that she doesn’t have long to live?”

Juul always had a positive attitude, but the lives of Ellen and her family changed in one fell swoop. “I could no longer make plans with her about which high school she would go to, for example. We suddenly had conversations about what Juul wanted to wear at her own funeral. It felt like I was failing as a mother.”

Last wish

In the meantime, Juul has built up a special bond with paramedic Menno Hagemeijer, co-author of the book. Menno: “Juul immediately took over. She wanted her family to enjoy themselves. She especially wanted to spare her 9-year-old brother from all the worries.” Menno has also worked as a volunteer for Make-A-Wish for more than ten years and assisted Juul and her family with her last wish. That was to the Efteling and the Beekse Bergen.

Ellen: “I would have preferred not to get to know Menno, because then Juul would have still been there. But I am extremely grateful to Menno for what he has done and what he has meant to us.” Later Menno was also present at Juul’s funeral. “I normally never do that with the children I care for, but Juul was in my heart.”

‘Laughed a lot’

“Juul’s last months were not all sad. We also laughed a lot together,” says Menno. He often pushed her wheelchair and they had the most fun together. Mother Ellen agrees. “Especially in the hospital we regularly had fits of laughter, Juul always knew how to make something of it.”

Yet death quickly presented itself. “At one point the shine was gone from her eyes. Juul said that her head hurt a lot and I wanted it to stop for her, but I am her mother so I didn’t want to lose her either,” says Ellen. “I had to promise her that I would celebrate my birthday. A few months after her death I turned 40. I celebrated it for her.”

It was only years later that Ellen bundled her diary fragments and photos that she took of the last months of Juul’s life into a book. Menno helped her with that. All proceeds from the book will go towards research for brain stem cancer.

The article is in Dutch

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