In January of 2018, Elia started to get low-grade fevers (99-100) and developed hives that would sporadically fade in and out all over her body. Doctors believed she might have allergies, but my momma gut knew it was something more. Her pediatrician ran a CBC and, because her white blood cell count was extremely low, they sent us to MUSC to rule out leukemia. We spent hours there in a small room watching movies and refusing to believe our otherwise healthy girl would have cancer. The doctors returned with the results and assured us she did not have leukemia and that it was not oncological. We spent months talking to various specialists who ran a multitude of tests – only to come back without an answer. Elia was admitted to MUSC for several days and doctors from each department ran every test imaginable – ophthalmology, rheumatology, infectious disease, oncology, pediatrics, and dermatology. She was released without a diagnosis. Her fevers started to get higher and higher and she was spotted like a leopard with hives. Finally, in April, having no other tests to run, rheumatology recommended a bone marrow biopsy. That is when they discovered she did in fact have leukemia.
Elia has spent the last (nearly) two years on constant chemotherapy treatment. She has had countless rounds of oral chemotherapy, IV chemotherapy, and spinal chemotherapy. She has had painful bone marrow aspirated and has to have a port that was surgically implanted accesses with a long needle more than I can count. We have had to give her injections and have to race her to the ER if her fever goes over 100.3. She has lost her hair and regrown it. She has doubled her weight due to steroids and then sometimes refuses to eat all together. She recently broke her leg just tripping on a carpeted floor because her bones are brittle from treatment. She cannot be in crowds and even sending her to school makes us nervous with things like the flu and measles that could potentially kill her.
Our lives will never be the same again. Elia has spent half her life – all of her memories, as a cancer kid. She doesn’t know what it’s like to be a care-free kid. Our son, who has his own share of struggles with autism, worries about his little sister. My husband and I will always have PTSD, worrying about each bump and bruise. Because of the treatment that is saving her life, Elia will also be at high risk for a long list of side effects as well as an increased risk of other cancers.
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