Tronsdal Family Hope Fund
Update…If you have been following along with Avery’s story, you noticed this blog had gone idle. And for good reason! For the past 3-6 months, Avery has been thriving! Her monthly rheumatology appointments at John’s Hopkin’s in St. Pete became routine and uneventful. Every 3 months we traveled to Cincinnati for a more extensive, yet still routine, follow-up with Dr. Grom.
Until this point, there has been nothing new to report.
On June 3rd we marked the anniversary of one-year full year since Avery’s diagnosis. We celebrated with a little cake and muttered “we did it...I can’t believe it” back-and-forth to each other as our little girl rubbed cupcake frosting all over her face. Remember feeling as if I could breathe for the first time in 365 days.
With a few minor exceptions, Avery was living, acting, and developing like a “normal” toddler. We started applying for Pre Schools, potty training, and play dates at the park! Avery was able to slowly wean off steroids and it truly felt like our little girl’s soul had returned.
The beginning of July we spent hours exploring neighborhood splash pads and searching for the perfect swing set. No one was particularly shocked when a typical case of hand-foot-mouth knocked her on her ass. In hindsight, however, this is when everything started drifting down-hill.
July 18th was a particularly shitty.
It started with Aves being unable to keep any food or water down without vomiting. We took her to the ER just in case she needed fluids and to rehydrate. We figured it little tummy bug – nothing a little Zofran and rest cannot fix, right? Well, in true Avery form she turned the entire hospital on their heads when her blood work showed her glucose at 11 (E-L-E-V-E-N!!!). This led to a week-long hospital stay to monitor glucose levels and treat the vomiting. Turns out, she was severely constipated, so they performed a total bowel clean-out. But as “shitty” as it was, none of this was related to her sJIA+MAS. Her glucose level required medical intervention and deemed an isolated event related to weaning off steroids too quickly.
Two days after being discharged, we are in Cincinnati for a routine follow-up with Avery’s primary rheumatologist, Dr. Grom (side note: If you have read anything credible about Avery’s illness, chances are, it was written by Dr. Grom.) These appointments tend to be long are always very thorough. We spoke about Avery’s ongoing fatigue since having hand-foot-mouth, terrible constipation & patches of rash on the bottoms of her feet.
Dr. Grom studied Avery’s lab work and explained his lack of concern: In normal, healthy kiddos, Hand-foot-mouth can linger in the body. He noted how great her blood work was and was confident she would bounce back. Cool. That answers that.
Just before walking out of the office, I asked his opinion about Avery’s recent hospital stay and the scary glucose drop. It so happens, no one contacted him about the admission. Before we knew it Dr. Grom was putting in motion for Avery to be admission for labs and observation. Cincinnati Children’s did a full endocrine work up testing for any adrenal deficiencies combined with hematology consult for bleeding disorder. In general, her lab work came back normal with no evident adrenal issues or bleeding disorders and after a week with loads of tests the medical team cleared her for discharge.
Monday, July 26th we return home from Cincinnati.
Friday, July 30th
Avery developed a rash over her entire body. It was the same rash we saw consume her body 365 days earlier… back when this all began.
Saturday, July 31st
she had a fever to 104.8 at home and was fussier than usual. We rushed to the ER at Hopkins where Avery was immediately admitted…. again! At this point we had no idea what was happening. The past 3 weeks she was in the care of one hospital or another, and her lab work was consistently trending in the positive direction.
Our phones beeped at the same time, indicating the lab results were posted to her chart. We knew immediately this was the MAS waking up, and the beginning of a flare. She was immediately administered High dose IV pulse steroids which continued for 3 days with slight improvement, but other markers continued to increase. This is equivalent to dumping buckets of water on a house fire.
By this time everyone agreed that Avery’s best chance for survival was immediate transfer to Cincinnati Children’s. The insurance company could not guarantee a timely medivac, so Tuesday morning we signed her out and were off to Cincinnati.
So here we are thinking that Avery was in medicated remission to current labs suggestive of ongoing MAS with no known discharge plan. I have never in my life felt so helpless than the past couple of days with every emotional feeling bursting out we are scared and tired. Avery received another infusion of Gamafant tonight with hopes that will calm her MAS enough for Dr. Grom and his team to figure out Avery’s next steps regarding treatment.
We are back at the beginning again. The only difference is the sense of relief we feel to be back at Cincinnati Children’s Hospital. Dr. Grom and his team eat this disease for breakfast, on the daily. Avery is exactly where she needs to be.
Love and apologize for the length,
The Tronsdal Family
