Patient stories
Fighting a rare blood cancer
Raya dreamt of being a comedian, but instead of practicing in front of her classmates, she had to tell her jokes to those trying to save her life.
Raya, 15, was was diagnosed at the age of 10 with precursor B-cell lymphoblastic leukemia, a type of rare blood cancer.
Doctors initially thought Raya’s symptoms were stress-related and brought on by the COVID-19 lockdowns, but after several trips to the hospital it became clear that she was seriously unwell.
“Raya was feeling tired more than usual but most worryingly, she experienced twitching in her hand that spread to her face and eventually affected her walking, balance and short-term memory,” Raya’s father Nader Eloshaiker said.
“Eventually she was diagnosed with blood cancer and while traditional chemotherapy treatment began right away, it did not make much of a difference after two rounds.”
Image: Raya during her hospital treatment
After undergoing CAR-T cell therapy, a type of cancer immunotherapy treatment, a bone marrow transplant was required to prevent a relapse.
Nader said Raya was in good spirits throughout the entire ordeal and her jokes came in thick and fast.
“Each hospital staff member received their own unique gag,” he said. One of Raya’s favourites was a paediatric haematologist that shared a name with a famous Australian comedian.
“Raya wrote in her book of jokes every day and she had fresh ones prepared for each specialist, which really made their day and helped keep our spirits up, too.”
Image: A page from Raya's joke book
Nader became his daughter’s bone marrow donor as he was a close enough match.
“The transplant was a success, but Raya spent another two months in hospital post-transplant due complications with the donor cells,” he said.
“It was such a relief when Raya was given the all-clear and could start to live her life like any young woman. Instead of being a comedian she now wants to become either a pharmacist or pharmacology researcher.”
Nader said he was grateful to share Raya’s journey and help health professionals understand the perspective of parents whose child was going through cancer treatment by completing a survey for the Bone Marrow Transplantation in Paediatrics Priority Partnership.
Image: Raya with her father Nader who became her bone marrow donor
The partnership, an international collaboration led by Murdoch Children’s Research Institute (MCRI), is focusing on the journey of young leukemia and blood disorder patients and whether key questions or concerns about bone marrow transplants remain unanswered.
“I’m thankful to be able to share my experience,” he said. Sometimes it’s just a matter of keeping information short and simple, so that tired, anxious carers can properly comprehend a diagnosis and support their child, especially through a bone marrow transplant.”
The survey closes on October 31. To take the survey or find more email show email address