October of 2020: Avery Tronsdal was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) complicated by Macrophage Activation Syndrome (MAS), a mysterious and rare inflammatory condition, at two years old. Little is known about MAS except that it can kill within hours and that it tends to strike about 10 percent of children who have SJIA.
This is how it happened……
May of 2020, then 19- month Avery old developed an aggressive rash. The rash morphed and changed as the day progressed and by the following morning it was gone. After a trending fever of 105.4, the local ER had her airlifted across the bay to a children’s hospital in St. Petersburg. She arrived around 4:00am, and by 10:00am the specialists were lined-up outside of Avery’s room, waiting to take a crack at the newly admitted medical anomaly.
Weeks later, Avery's blood work started to spiral out of control. She had an infusion of Intravenous immune globulin (IVIG) and responded beautifully. She even walked out of her room and down the hallway, all on her own. It was so encouraging to see her smiling again. Unfortunately, it was not long before the fevers resurfaced. What I later discovered was IVIG's purpose was to slow Avery's spiral and buy the doctors some time. With each passing hour I knew her in my heart that her little body was shutting down.
The morning of June 19, 2020 is one I will never forget. The resident overseeing Avery’s case softly woke Daniel & I up at 6:45am. Her lab work, blood pressure and O2 level were reaching dangerous levels and once again... the fevers were back. Everything after that moment is a bit of a blur. Hours later doctors explained the perspective diagnosis as HLH (an “extended cousin” to MAS) and before lunch Avery was transferred to the hematology/oncology unit and began chemotherapy immediately.
July & August 2020 were a blur for the entire family. Avery had good days and bad days. She lost what little hair she did have, and the steroids made her puff up quite a bit. Come September, completed the final round of chemotherapy, steroid and immunosuppressant therapy. Returning to normal, everyday life was on the horizon.
September 12, 2020 was Avery’s 2nd birthday. She had a coloring station, cake, and tons of new toys! 3 or 4 days after her party I saw a picture of Avery taken during her party. The look in her eye was painfully familiar. It was a look I had not seen since May when this entire journey began and that night, sure as shit, 2-year-old Avery developed an unpredictable rash (water, rinse, repeat). Doctors confirmed she was experiencing a flare but had no answers past that. The decision to seek a section option from was a no-brainer. The process of transferring her care was emotionally, physically, and financially exhausting.
Finally, September 25, 2020 Avery was transported via medivac from Tampa to Cincinnati . The all-female crew of pilot and nurses volunteered themselves to escort Avery at no cost. They were also all moms.
Before the ink on the admission paperwork was dry, Avery was being worked up by the Division Director of rheumatology, Dr. Brunner and by the end of the day we had a road map of what Aery’s new treatment plan would look like.
Avery receives a shot of Anakinra every day, and twice a week is transfused with Gamifant . Both medications are commonly not covered by insurance because of the immense cost. Knowing this, we are continuing to move forward with treatment.
Good News: She is responding to the combination of medications
Bad News: Avery can’t come home until after Christmas, at the earliest.
Gamifant is only available for immediate use at few hospitals in the world so we have no choice but to remain in Ohio until she is moved to outpatient status and only needs to be seen once a month. Otherwise, we run the risk of not being able to safely get her back to Cincinnati.
The cost of having a critically ill child is becoming a constant worry for us and is taking away from time we could be spending with Avery.
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