February’s Warrior of the Month – Rachel

Rachel and her twin sister Naomi were both diagnosed with infantile Acute Lymphoblastic Leukaemia when they were just 7 weeks old. They had high dose chemotherapy for 6 months, including steroids and monthly lumbar punctures, followed by a bone marrow transplant donated one of their sisters who was 11 at the time. During transplant Rachel stopped breathing and her heart stopped. After several minutes she was resuscitated, intubated and sent to ICU where she stayed for roughly a month on dialysis and breathing tubes. She was eventually extubated, but developed acute lung disease a week later and ended up in ICU on 100% oxygen and inside a perspex box with nitric oxide (known as a scavenger box). She stayed inside the box for a couple months. She was allowed home on her first birthday, but then developed a telescopic bowel and needed surgery.

Rachel’s twin sister Naomi sadly passed away after her bone marrow transplant. Although Rachel survived hers, her recovery was gruelling and she relapsed in her central nervous system after being home only a few months. She was given a dismal prognosis (less than 5% chance of survival for 5 years) and began high dose chemotherapy with lumbar punctures and cranial radiotherapy. As a result of the treatment, she suffered methotrexate encephalopathy – a brain injury which has impaired her intellectually.

She is now a very feisty 8 year old, but is struggling academically and socially due to her poor language skills, and has to move to a new school this year because the school she has been attending have no resources to support her. Despite an extremely low IQ she is able to read, write and converse at a 5 year old level – but her peers find it difficult to relate to her. She is already entering puberty due to the effects her treatment has had on her ovaries and pituitary gland, but she will never be able to have children of her own. She is expected to have early onset osteoarthritis, and has a short stature – her medical team expect that she may reach 4 feet tall if she stays well. She also has a turn in one eye which will be corrected by surgery later this year.

Rachel (and her twin Naomi) have brought something incredibly beautiful and profound to the lives of those they touched. Rachel’s family say that although the pain of losing Naomi was and is still at times, unbearable, the joy of having Rachel survive such a precarious treatment is inexplicable. She has beaten all the odds time and again, and her Warrior spirit is still fighting strong!

Rachel loves music – she’s not learning an instrument but bashes away on the piano, drums and guitars belonging to her brothers and sisters. She loves art and can craft up a storm for hours with her sisters. She loves swimming, and delights in teasing the dog with the garden hose!

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