Here is the graph of proteins in Alyssa’s urine over time. Her latest results are so low which is WONDERFUL, GOOD NEWS. 🥹
Low is good. This shows that her kidneys are working well with the trial medication pegcetacoplan. ♥️. This was even right after she got Covid! We are so thankful for this trial. Also, her cholesterol is normal! 🎉
Alyssa recently shared that the thought crossed her mind, “I don’t feel sick. What if I’m not really sick?” which is an understandable thought that teens and young adults sometimes have. I reminded her that it’s thanks to medicine that she has more energy than before, and that I am so happy that her pegcetacoplan is working so well that she even forgot a time she was ill. The thought even flew across her mind, “What if people are lying to me about my health? What if my mom is making this stuff up and making me get injections so she can get attention?” This was followed by the thought, “No wait, my mom hates attention.” I’m so glad she was able to share these thoughts with me. We talked about it, we talked about who she thinks she can trust, and what kind of medical care she wants. I reminded her that she has access to her own medical chart online, and reminded her that she is always welcome to be part of our conversations with the healthcare professionals. Then she shrugs and chooses to be lazy and entrust everything to us parents. 😆
“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Philippians 4:4-7 NIV
One in a Trillion: Alyssa’s medical journey 