3-12-2021. Diagnosis

Alyssa feels fine, but over the years we found some odd labs and are now finding answers. A couple Thursdays ago Alyssa got a kidney biopsy, and was discharged the day after. Biopsy went smoothly and she is recovering well. She’s restricted to low activity for 4 weeks: no running, jumping, or lifting anything heavier than a gallon of milk. She is recovering well and I have to remind her to slow down. Biopsy results are in, and she has c3 glomerulonephritis. She needs to do more tests. Her immune system is dumping proteins that hurt her kidneys. Alyssa’s C3G was caught early, so our nephrologist is hopeful and so are we. She also has a rare blood clotting disorder (slight factor 11 deficiency), where she takes a few seconds longer to stop bleeding, and it may be related to other health issues. Each of these conditions is like 1 in a million, so I joke that she’s one in a trillion. We are doing our due diligence and going to search for a second opinion, looking into places that have experience in cases like Alyssa’s.

We are writing to you because you are our cherished friends and support, but right now I need some time to process. While we appreciate the support, one of the hardest things for me is to retell the whole story and answering questions. We appreciate your prayers. I will send out updates as we are ready to share the information.

In case I haven’t talked to you in the past few months, a lot has happened. Christmas week our dog Q-Tip went into uncontrollable seizures and eventually was euthanized at home. A month later our other dog Charmin collapsed from blood loss from a 5cm tumor in her intestines (rare cancer in dogs), had blood transfusion and surgery, and is now making a miraculous comeback. Brother alone is returning to in person school, due to some speech-therapy related needs. Alyssa is continuing remote school. Our house is having a lot of work done, windows are being replaced, leaking roof the day before biopsy, so now, we are tired.

We cling to God’s grace and His faithfulness. We believe in the power of prayer and appreciate every word you can lift up for Alyssa. For us, it is a bit of a roller coaster. We read about success stories and have hope that Alyssa will join that statistic. But we do not want to rely on statistics but on the Power of God.