Feb 15, 2023. No longer in Remission.

Her urine proteins and trace blood in urinalysis are back up. Alyssa is no longer in remission for her C3G condition, and we now are pursuing next steps. We are revisiting the idea of seeing if she is eligible for joining the investigational drug trial for one of the first drugs for her condition. Not a cure, but a possible maintenance medication to hopefully preserve her native kidneys. To clarify, her urine protein levels are trending up, just barely crossing the threshold of what is considered as “remission.”

We will pursue this investigational drug. Currently she needs to maintain medication and be steroid free for 3 months before being eligible for trial. So if all goes well, we may have a chance at starting this by May. Hopefully she will not need to redo her biopsy. Please pray that she can join the trial smoothly, that she does not get assigned the placebo, and that she does well on the medication.

She had COVID. It’s been a great run, nearly 3 years of dodging COVID, but it has finally gotten to her. It’s her first time getting COVID, and COVID can be rough on many organs including kidneys, so pray for her health, that it would have minimal effect in her kidneys. It’s been pretty mild for her, low fever the first day, and then a runny nose and fatigue, but otherwise fine and happy.

Also, pray for wisdom with working with school. She is struggling to keep up with academics with her combination of poor executive skills and many absences. We are now pursuing making a 504 plan, which is a disability’s rights to education plan, especially since she may be racking up a lot more absences if she joins the trial.

Her eyelid thing from New Year’s eve is a sty, per ophthalmologist. And now she has a new one on the other eye upper eyelid.

She is having recurrent GI problems. As with most of her issues, it is currently an unidentified mystery that we have been watching for months. Ulcer? Side effect of MMF? Stress gastritis from being a 12 year old? Please pray for her pain. It was coming in waves several times a day. It seems to be improving after a long, difficult month.

Al’s busy and burnt out from work. The match is coming up, so hopefully that will go smoothly. I am busy and sometimes discouraged, as it feels like I’m treading water to stay afloat. Al recently broke out into an odd case of dermatographia. He’s very itchy and has inflamed welts all over from scratching himself. He probably ate something he’s allergic to and got all itchy and started scratching himself like a dog with fleas. Pray for his quick healing and relief from itching. He’s got some meds for it. 👍 I’ve got some weird hives too.