When you speak to Raewyn Elsegood, you immediately feel like enough.
Maybe that’s because of her work as a sports chaplain; she is so used to listening to people and truly seeing them for who they are. Maybe it’s because she has been through unimaginable grief in her own life, that she doesn’t ever want people to feel like they’re alone. Maybe it’s simply who she is.
Raewyn would say it’s because of God.
So much of Raewyn’s story and purpose is wrapped up in the life – and death – of her daughter Amy, and how God worked in both of their lives.
A routine blood test
In early 2021, 18-year-old Amy had newly graduated high school when she moved out of home to study dance. Nine weeks later, her local GP rang her after a routine blood test and told her to rush to emergency immediately.
“She had no platelets in her system at all. She was at risk of having one fall, and potentially dying,” Raewyn told the Finding Hope podcast.
“She wanted to come home and get a second opinion… but the doctors were on standby in emergency.
“[That was] the day that changed my whole world as a mum.”
The diagnosis that changed everything
Amy remained in hospital for two weeks receiving daily blood transfusions, but continuing her studies online, before a diagnosis was reached. Amy had severe aplastic anaemia, a rare blood disorder which needed treatment similar to leukemia.
“He didn’t mention the word cancer so we thought we were out of the woods,” Raewyn said.
“But my husband googled [the diagnosis] and that’s the worst thing he could’ve done.
“We found out she had a five-year life expectancy.”
Fighting for normalcy
The next four months of Amy’s life were lived inside hospital walls: she received blood transfusions, chemotherapy and a bone marrow transplant. She continued fighting, taking one day at a time and, against all odds, she started to get better.
On the day of her nineteenth birthday, Amy was discharged and returned home to her family. Immediately, she started physical therapy and even began teaching online dance classes. Life was entering a new phase of normalcy. Until it wasn’t.
Less than six months prior, a routine blood test had changed the course of Amy’s life. Now, another one was about to turn it upside down again.
A turning point
Routine testing found a virus called CMV in Amy’s body. After mere weeks at home, she returned to hospital to fight the virus.
“She managed well on her own, until she didn’t,” Raewyn said.
Eventually, Amy’s body began shutting down. She couldn’t walk to the bathroom on her own, was being fed through a tube and was on oxygen, as the virus had entered her lungs.
However, through all of this, Amy remained optimistic and positive.
“The story she kept telling herself was if I get through today, tomorrow will be better,” Raewyn said.
“I think if she said it out loud… just how bad things had gotten, it would be real herself.”
A “Hail Mary” moment
However, try as she may, Amy could not escape her declining health. Although she continued to fight bravely, her lungs began shutting down. She was transferred to ICU where she deteriorated quickly, before being put on a ventilator; what Raewyn described as a “Hail Mary” attempt to rest her lungs enough so she could keep fighting.
Raewyn got to say her goodbyes to her daughter, not knowing if she would make it through.
“I got to say to her ‘Amy, I am the last person you are going to see when you close your eyes and I’ll be the first person here when you wake up. But if it’s not me, it will be Jesus, and that’s a win-win’.
“And she just shut her eyes.”
A final fight
After three days of ventilation, it became clear that Amy was not recovering as expected.
“We were told that her lungs had failed to a point where they couldn’t come back from,” Raewyn said.
“We could see the screen. The numbers were going down.”
Amy moved to palliative care within the hospital, and her family was given a few days to say goodbye. Raewyn’s husband and son were able to visit, and her older sister Courtney joined virtually from her home in New York, unable to receive a travel exemption due to COVID lockdown. Amy’s last days were filled with laughter, tears, memories, worship songs and love.
Amy’s last days were filled with laughter, tears, memories, worship songs and love.
“We started each day with worship songs, followed by video messages from her friends,” Raewyn said.
“We believed that she could hear us.
“And we wanted to fight with her until we were told to stop fighting.”
After 10 days of ventilation, Amy’s fight was over. Her thanksgiving service was one of joy and life – filled with dance performances, worship music and messages from loved ones. A final show for their dancer.
Raewyn is now working on a memoir and podcast to share Amy’s story and how she continues to touch the lives of so many.
Almost 18 months after her death, Raewyn believes that her daughter is never far away.
“As a Christian I believe that Amy is in eternity and I will see her again,” she said.
“But I don’t want to wait to see her. I want to feel her.
“So I wake up every day, feeling like she’s walking with me.”
Listen to Raewyn’s full episode on Finding Hope in the player above. Part Two is also available on Finding Hope.