Last July, Cincinnati Children’s Hospital hosted a SJIA festival. Families traveled from around the country to network and attend educational sessions. Since we had just been there in April, it seemed sort of silly to travel all the way back a few months later, but I was disappointed at the missed opportunity.
We have only met one other family with the same sub-type of arthritis, and it was at that hospital.
While David, Cee, and I were having lunch in the hospital cafeteria, I recognized a mom from our online SJIA group. She had mentioned online that they had an appointment with same rheumatologist on the same day, and I was hoping we’d be able to meet. I leaped up from our table when I saw her. “Are you Rashmi?!?!” I don’t remember if she nodded or said yes, but either way, I hugged her. Rashmi is a rock-star.
I don’t want to steal her story, but she and her husband moved from California specifically to be near Cincinnati Children’s. After several episodes with their son with SJIA where hours count, they made the decision to leave family, friends, everything in order to be near this hospital.
Did I mention that Rashmi is a rock-star? She reads medical journals and brings them to doctor appointments. She and her husband founded the Systemic JIA Foundation. I’ve come to value her opinion and feedback (online!) about SJIA very much. She was also instrumental in putting together the conference in July.
Just last week, the videos from the conference were released, and I spent some time sifting through the treasure trove of information.
Maybe I shouldn’t have. The videos are difficult to watch because they are reminders of the unfortunate situation in which we find ourselves, but one talk was particularly troublesome. It was actually one slide from one presentation that has kept me stewing for days.
The slide showed factors that often indicate poor prognosis with SJIA. Cee met half the criteria on the list. Maybe more if we figure out what is classified as “early age of onset.” Is four early?
Today Cee is doing really, really well, especially given where she was this time last year. Last year, our life looked completely different. Last year, Cee wasn’t up to going trick-or-fruiting. (She’s looking forward to it this year! Let me know if you want to be added to our route.) But we know that we’re one cold, one bout of strep throat, one case of chicken pox away from another flare. Another flare— or worse. Poor prognosis.
We had a well-child check up with Cee’s pediatrician since she hit another birthday, and he reiterated that if she is exposed to chicken pox at all, we need to start anti-viral medications immediately. That’s just if she’s exposed. Seeing his level of concern increased my anxiety about the whole situation.
Things are fine. We’ll get the next MRI set up before the end of the year for Cee. We’ll start up swim therapy once the weather gets colder. We’ve got the monthly infusions and weekly shots and re-occurring labwork figured out. Things are fine.
Statistics aren’t everything. It is possible to “beat the odds.” But while everyone expects to beat the odds, not everyone actually does. How do we enjoy this time of stability with the knowledge that things will go downhill at some point? How do we keep our eyes open for all the red flags we need to be on the lookout for without letting that gobble up our happiness? How do we educate ourselves on the reality of the disease while maintaining our attitude of hopefulness? This is our ongoing struggle. This is life with SJIA.
Day 1: I’m baaaaaack!
Day 2: The House Sitchiation
Day 3: An ER Adventure
Day 4: First Reconciliation Head to Head
Day 5: Packing Struggles
Day 6: This Is Us Bookless Club
Day 7: Just Take Me Now
Day 8: Hair Trouble
Day 9: The Crutch of Comfort
Day 10: The Whole Truth About My Summer Break
Day 11: Popcorn and Cardboard
Day 12: Locked Out
Day 13: Apples, a Tattoo, and Babyness
Day 14: Beat-boxing and Generosity
Day 15: A Second Chance
Day 16: Poor Prognosis