August 26, 2021. Back to School

We are still so happy about her kidneys recently improving to normal function. There are other labs and measurements of this rare disease, and nothing has returned as impressive as the kidney improvement, which was our major practical immediate end goal. So we still watch and hope and pray for continued improvement of all labs, for the sake of maintenance of her kidneys and rest of her body. If all goes well, then she continues to head towards remission, which is our best outcome, and after that we wait and monitor indefinitely until she gets sick again like flu, cold, COVID, anything, and the cycle starts again, and hope and pray that the medicine works again next time.

School started. She’s thrilled. I’m nervous. But realistically for us, it is not just COVID. It is every sickness that can restart her condition to dumping proteins in her body. Covid is a bit more complicated for her. She is under 12, so she is still not yet vaccinated. Her medication makes her immunocompromised, which unfortunately also means the vaccine may not be as effective in her. FDA approved a 3rd COVID vaccine to immunocompromised adults. So, it will take a while before she miiiiight be vaccinated against COVID, which unfortunately is mutating faster than kids’ vaccines are being dispensed for her age. Can you imagine when young immunocompromised children under 12 will get that 3rd vaccine? Ha. And by then, maybe COVID kappa or omega will be out. Disclaimer: I’m making up “COVID kappa or omega”. My point, it may be years before she’s truly vaccinated against COVID. I can only hope for the rest of children to get vaccinated, or for her to achieve remission and reach age 12 to get regularly vaccinated like a regular person. We can’t wait indefinitely for this. Remote school messed with her mental health. Al reassures me and says to keep doing what we usually do, mask, sanitize, be careful, and she should be fine. I pack an extra wound kit for her, send emails to the school staff, pack spare masks and hand sanitizer, and remind the kids to be careful. God showed me He had her before, so I take a deep breath, a leap of faith, and pray hard.