Bryli has always gotten sick more than the average kid so it wasn’t concerning to her docs like it would have been for a “typical” kid. She started getting petechiae when she would vomit. Something she never had previously. She said she was tired more and had a sudden onset of severe sleep apnea. The final straw was I felt her coloring was off. I took her in for blood work to just check and make sure everything was okay. They called within an hour of her blood draw and said get her immediately your daughter has cancer.
She was on life support for the first couple weeks of her battle and remained in the ICU for a month and a half. She has had just under 100 blood and platelet transfusions. She’s had multiple lumbar puncture surgeries, back biopsies, a lung biopsy involving a lung surgery, a bronchial surgery, leg surgery, a picc surgery, and central line surgery. She had to be hospitalized for her entire 6 months of treatment in an isolation room. She is doing great and is currently in remission. The hardest part I think now is the PTSD for everyone.
We’ve had constant anxiety while putting on a positive and brave face. For her, she is scared of any slight pain or off feeling. She is always afraid of being sick. She gets really upset when kids call her a boy or look at her differently. I went 6 months without my other children while I stayed exclusively in the hospital with Bryli. Joe stayed for 4 months until she was more stable and went home with our other girls. Then of course the more obvious one is financial hardships. No savings left and finding a job that accommodates appointments and caring for her has been really tough.
She has clawed her way back and overcame several obstacles! She is a fighter though and is now in remission. I am so proud of her and so thankful for her every day!
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