Rachel’s story, as told by her Mom.....
Rachel Elizabeth Mann was born on August 4th, 2011,at the IWK Grace, she came into the world quickly, with all the gusto one can imagine from a newborn and immediately made her space in my heart along with her brother Warren who was 2 at the time. Rachel was a happy and healthy baby, toddler and pre-schooler and started school in 2016 excited to finally be in “big school’ with her brother. Her endless curiosity, big heart and her huge blue eyes endeared her to everyone that met her.
In August of 2019 things changed drastically. Rachel’s road to diagnosis of Leukemia was a bit different to most but it was, fortunately, quick. Rachel started to not feel well, nausea, belly pain, and vomiting, her appetite decreased dramatically,and she was very tired. I took her to a GP who thought she had a virus and we accepted that. However,8 days later, no better and seemingly feeling worse we ended up at the IWK ER to hopefully rule out appendicitis as she was complaining about intense abdominal pain. The DR’s determined that there was something wrong with Rachel's kidneys, an ultrasound showed that they were swollen and had decreased function. Rachel was admitted under Nephrology and was to undergo a biopsy of her kidney. The Dr expected that she has nephritis,and we would be in the hospital for 5-7 days. Our whole world turned upside down when the biopsy came back with cancer cells. It was the last thing any of us were prepared for. Those first few days are a blur for both myself and Rachel, I remember grabbing the Dr’s hand and begging him to promise me that he would make her well again. Her Diagnosis was B Cell Acute Lymphoblastic Leukemia.
The next few days were agonizing as Rachel prepared to start Chemotherapy with endless tests, biopsies, and placement of a port -a-cath and trying to take in the gravity of the diagnosis and what it would entail for Rachel. It is difficult to know the best way to handle this with your child when you are filled with so much fear yourself. Rachel was so brave, she showed me what courage really was. What I could see in her eyes was bewilderment, her life had dramatically changed, from spending the summer swimming and playing to suddenly being in the hospital with a serious illness at 8 years old is something that we can’t truly comprehend.
Rachel would spend the next 3 weeks in the IWK, we finally came home,and she did even manage to go to school for a few hours here and there.
In October of 2019 we went to our first Light the Night event. A friend of our family is a Lymphoma survivor and we all decided we would go together as part of her team. Rachel was still very weak from steroids at that time and needed a wheelchair to make the entire walk,but she did it and she held her lantern and dazzled us all with her smile. It was very emotional to be there, to walk past the hospital that we now knew very well and contemplate what the next two years would be like.
Treatment for ALL is 26 months, The first 8 months of ALL treatment is intense.There was not a week we were not at the hospital, IV Chemotherapy, Lumbar punctures and blood work became part of our routine. Once frontline is complete kids enter the maintenance phase of treatment where they take daily oral chemotherapy, IV and lumbar punctures every three months and monthly bloodwork. It sounds less intense and in many ways, it is but Rachel struggled through most of her maintenance therapy.
Finally in Oct 2021 we approached the biggest milestone of her life. Rachel officially took her last dose of Chemo on Oct 22nd! We celebrated with family and friends, we had a “jump for Joy” party at Get Air and we organized a fundraiser for Light the Night as it was held on Oct 23rd. We invited our family, friends and community members to meet usand walk around Sullivans Pond. So many people came out for Rachel, and I can’t really explain how much it meant to me to walk for Rachel as a survivor.
There is so much to Rachel’s story, challenges that came up along the way, side effects from chemo, endless trips to the ER and many hospital admissions. It's an honour for Rachel to represent the LLSC as an honoured hero now that those days are behind us and she is starting a new chapter in her life. We hope that her experience can bring some hope and a message of healing to others.