Alyssa is in remission!
We went to Iowa in a one day round road trip, for a 3rd opinion. Last year at this time we went for a 2nd opinion in Ohio. The Iowa specialist was extremely knowledgeable and insightful, giving us more wisdom and insight on how to treat Alyssa. Good news is, she did not recommend that $300k/year medication. Instead she assessed that Alyssa is in remission, AND invited Alyssa to join a study, which offers new opportunities. The best opportunity is that when Alyssa turns 13, she qualifies for a new trial drug that addresses her specific issue. There will be more visits to Iowa in the future.
The not so great news is that when we went, she had a peculiar urinalysis, which we repeated back at home, which hopefully is nothing significant. We suspect it might be a minor UTI, but as usual, we need to watch and wait. We’ll follow up with home doctor again in a month.
She is going to discontinue most of her medications, hooray! She will wean off of her high dose steroid, which she had been on for over a year. She will hopefully be completely off of it by fall. With that, she will discontinue her cholesterol medication and antibiotic, and will hopefully get off of her low-salt, low-fat, low-cholesterol diet, low-happiness diet. She does need to stay on one immunosuppressant, her Cellcept (aka MMF) and vitamin/calcium supplements, possibly for life. We’ll just have to watch and wait, as usual.
This does not mean she is cured, for there is no cure for her condition. This is the best outcome we can hope for, to preserve her native kidneys indefinitely. She will continue to be somewhat immunosuppressed, and at risk for relapsing after maybe some kind of infection, and we keep masking. So we continue to seek wisdom as the world rapidly unmasks. But it doesn’t stop us from enjoying travels with measured precautions. We mask and sanitize everywhere and shower right after every outing. Enjoy some more photos of our recent travels.
My friend shared this advice to balance the struggle with anxiety and depression: focus on living in the present. Anxiety is fear of future, depression is like, being down and stuck in the past. I love this advice, and it helps us live with more appreciation day by day. ❤️
One in a Trillion: Alyssa’s medical journey 