October 3, 2023. Halftime

It’s halftime! Alyssa has reached 6 months into the investigational drug trial. Until now, she has been “blinded” to what she is infusing. “Blinded” means we don’t know if it could’ve been medicine, or it could’ve been placebo (fake). Now she switches over to open-label stage of trial, where she is for sure on the medication pegcetacoplan. 🎉 👏👏👏

Please pray that this next stage goes smoothly and helps her health. Pray that there will be minimal side effects. Most of her symptomatic struggles until now have all been due to the side effects of her medications. Pray that she responds to this drug and goes back to remission.

I previously mentioned another relative getting sick. My relative had a couple procedures done over the summer. There were some problems and had to have a big surgery to remove a tumor. My relative is finally healing well. ❤️ Thank you for your prayers!

I (Alyssa’s mom) finally got to see my endocrinologist after a near 6 month wait after my head MRI showed a mass in my pituitary gland. It is a cyst. Yay, it’s not cancer! I am still getting more hormone tests, and so far nearly everything is coming back normal.

Later this month, we will attend a C3G conference. Alyssa will be a panel speaker to share about her experiences with the pegcetacoplan trial. Apparently, she is currently the youngest trial participant in North America (still yet to be fact-checked for sure). I’m catching wind that there might be a couple younger participants to possibly join soon, on compassionate care, which means they’re sick and need to try something soon. So if they join the trial under compassionate care, there is no placebo time, only the real medication, because it would be cruel to test a placebo on someone very ill. The people designing the trial have to tread carefully, as they do their best on deciding a safe but effective dose for smaller children. Please pray for their wisdom, and pray for these children. Hopefully Alyssa sharing her experience can help answer questions for others, including families such as these.

Al has shifted his work schedule around, and will be able to start taking over some of the drives to Iowa. I am relieved to get a break. ☺️