Averi's Journey
Written by Averi's Journey
Averi’s journey really began in April of 2014, at 20 months old. She was diagnosed with Kawasaki’s disease. She was hospitalized for a few days & treated with ivig before being cleared to go home. At 21 months old, she had a reoccurrence of KD, which we were told was highly unlikely because the recurrence rate is 2%. This time, she needed 3 different types of treatment other than ivig to treat her.
Just before her 3rd birthday, after noticing a lump in her neck, she was diagnosed with a thyroglossal duct cyst by her pediatrician. Shortly after her 3rd birthday, her rheumatologist was becoming more concerned about her leg & back pain that she had since having KD the second time and asked to have her get a spinal mri while under anesthesia. He thought she had a tethered spinal cord but instead found two arachnoid cysts on her thoracic spine that were shifting her spinal cord but not compressing it so no surgery was needed for the time being. Just a watch and wait situation with a neurosurgeon.
Almost a year later, 3 weeks after turning 4, Averi was diagnosed with Pre B Acute lymphoblastic leukemia after ending up in the ER with intense leg pain and fever. To make matters worse, her arachnoid cysts complicated typical treatment. She only was able to have 3 lumbar punctures before her oncologist and neurosurgeon decided she needed to have an ommaya reservoir placed in her brain to replace the LPs that the next 2 years of treatment called for. She had her ommaya placed a month after being diagnosed with cancer.
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The surgery took a major toll on her and she ended up in so much pain that she couldn’t hold a spoon or even hold her head up. Once we got her pain controlled, she needed a lot of physical and occupational therapy to get back to a good place. She was hospitalized several times during treatment for several things, from neutropenic fevers to sepsis.
After finishing treatment, she was still vomiting every day & having stomach pain. So after 6 months, Her GI found that her pyloric sphincter was spasmed shut and performed a balloon dilation. Three months later, she started having migraines so bad that she would vomit. One morning, she woke up in intense pain and started vomiting every 30-45 minutes. After two ER trips and after vomiting more than 24 times in less than 24 hours, she was admitted and got to spend her 7th birthday (and her brothers 6th birthday) in the hospital trying to control her pain and find a reason for her pain but two years later, we still don’t have an answer.
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Her stomach pain was also getting out of control and last year, she finally was diagnosed with biliary dyskinesia (3% function, very rare for her age) & her gallbladder was removed which helped with pain for about 4 months but after contracting covid, her abdominal pain came back with a vengeance.
She also suffers from mild brain damage (from chemo), depression, anxiety dyslexia, dyscalculia, neuropathy, bladder issues, chronic pain, chronic migraines, chronic muscle spasms, sleep apnea, hearing loss, reflux, & continuing abdominal pain. She is nine years old and has spent majority of her life in the hospital or in clinic. She takes multiple medications daily just to help her function with daily life.
Averi’s strength, resilience, and optimism inspire me so much. She is so kind, compassionate, generous, tenacious, & fierce and has handled more than any human should ever have to.
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