Edward’s legacy secured with gift in Will
Edward Rhoades and his mum, Jan, knew they wanted to give others impacted by blood cancer a brighter future after he suffered from the debilitating side-effects of a stem cell transplant, to which he eventually lost his life.
Edward was only 21 years old when he was diagnosed with blood cancer in 2011.
“He was started on an experimental chemotherapy protocol that is usually used for children and very intense,” said Jan.
“But after three months he still couldn’t achieve remission and the doctors advised he would need to have a stem cell transplant.”
In April 2012, Edward underwent an allogeneic stem transplant.
An allogeneic stem cell transplant is used to treat blood cancer by collecting stem cells from a genetically matched donor and injecting them into the patient’s bloodstream or bone marrow.
“For the next five years he suffered from major complications, developing graft versus host disease (GVHD) of the gut and caught a fungal infection called fusarium,” explained Jan
GVHD is a common, and sometimes serious, complication of a stem cell transplant, where some of the donor’s immune cells try to reject the patient’s own cells as foreign.
Fusarim, a plant pathogen commonly known for attacking tomatoes, is often fatal in immunocompromised patients who have undergone a bone marrow transplant as it causes prolonged neutropenia and T-cell immunodeficiency.
“This caused a huge amount of destruction in his system, and he was on anti-fungal treatment permanently as his doctors were too scared to ever stop it.
“He ended up with the infection in his knees, his legs were constantly bent for years, and he struggled to walk without aids.
“I would need to go over to his house every day to help him get dressed for work. But he was a young man and didn’t want to rely on his parents or anyone for that matter.”
Edward died on Thursday, 16 February 2017 just a month before his 27th birthday.
“I always say that boy who died, wasn’t really our boy,” said Jan.
“He didn’t look anything like himself. He was so thin and in constant pain. When he died, it was almost a relief.
“Edward was funny, cheeky, thoughtful, and marched to the beat of his own drum from the day he was born.
“His desire to live was strong to the very end and I know for a fact that he was convinced he was going to get well again.
“He was a young man after all and had his whole life ahead of him.”
Throughout his journey, Edward was passionately involved with the Leukaemia Foundation and was instrumental in setting up a young adult support group.
“He was also supported by a Leukaemia Foundation Blood Cancer Support Coordinator, Kate,” said Jan. “She was just exceptional, and he had a really special friendship with her throughout everything.”
Early on in his treatment, Edward decided to include a $10,000 gift in his Will to the Leukaemia Foundation.
“I would encourage every young person, regardless of if you are ill, to get your Will in order and make your wishes clear,” explained Jan.
Click here to read about the important research project, partially funded by Edward’s estate, which is using precision medicine to reduce the impact of toxic treatment.
Jan has also recently updated her own Will to include a gift to the Leukaemia Foundation and is an active supporter of the organisation.
“I can’t sing the praises of the Leukaemia Foundation, the doctors, nurses, transplant coordinator and support staff enough,” said Jan.
“They did everything they possibly could to care for Edward and with such incredible kindness.”
“I’m heartened to see the improvement in treatments, particularly around targeting therapies to each individual, which hopefully decrease the chances of GVHD.
“I see this gift in Will as my parting gift to the many more families coming after us who hopefully won’t suffer such a terrible fate.
“This gift means Edward’s memory will be kept alive and it’s a great comfort to know his name will be remembered long after we are both gone.”
Edward was diagnosed with a type of blood cancer called acute lymphoblastic leukaemia (ALL).
Acute lymphoblastic leukaemia (ALL) affects the blood and bone marrow with an overproduction of immature white blood cells, called lymphoblasts or leukaemic blasts.
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