Lengthy August Update :
Lydia is still doing well. She had an upper respiratory infection & ear infection but thank God, she didn’t need to be admitted because she didn’t have a fever! Praise God for healing!
Lydia is getting back into the swing of things but tires pretty quickly. She handles her medication at home very well and she’s now a champ at swallowing pills! That makes things so much easier! (She takes her pills with yogurt if you’re wondering 😊)
We have some genetic testing coming up in a few months. We would really appreciate your prayers that her results come out favorably. (If you’re interested in the more in depth gene testing, I’ll explain more at the end)
Her hair is coming back in beautifully and in her words, “she never wants her hair cut again !”
Her oncology team says that “Maintenance looks good on Lydia.” She’s had blood work done, and no adjustments to medication is needed. Another Praise!
Lydia has had several transfusions during all of this and since starting maintenance she hasn’t needed any. But one of her levels she struggles to keep up is her antibodies. We are thankful that she is able to get them when she needs them, but we would rather her body produce more so she wouldn’t have to need one. The levels showed a decrease this time, it wasn’t low enough to need a transfusion, but pray her levels don’t drop lower. And again, I am incredibly thankful to you all who donate to help save lives! Lydia is alive today by God’s grace and selfless donors. We are so thankful!
To summarize:
1. Pray for favorable genetic test results.
2. Pray for her antibodies to increase on their own.
3. Pray that she continues to thrive and stay in remission.
Thank you!
Now for the more in depth gene stuff:
The gene they are testing is called TP53 gene mutation. It’s also called Li-Fraumeni syndrome. (LFS) is a genetic disorder that increases the risk of multiple cancers, including leukemia, especially in children. In a child with leukemia, LFS may lead to a higher chance of developing additional cancers, which affects treatment options and requires careful monitoring.
Li-Fraumeni syndrome (LFS) is a rare inherited disorder that greatly increases the risk of developing several types of cancer, particularly at a young age. It is caused by mutations in the TP53 gene, which normally helps suppress tumor growth.
If she were to have this gene mutation we would also have RJ and Abigail (as well as Richard & myself) be tested for it.
So it’s been one of those things where I just have to give it to God, the one who formed her body and gave her to us. He knows our concerns and cares. And I try not to think about this often. But the testing will happen in about 4 months. So please keep praying !
