Knox Update - 5/14

Knox Update - First, I do apologize for the length of time between updates. We appreciate everyone's prayers for Knox and for our family. Let me ask that you earnestly pray and seek the Lord and this may be a way for God to bring you closer to Him. When I last updated, I was gathering information from many places on what Knox's next steps could possibly look like. We are so thankful for Knox's doctors and nurses at UVA and their love for us. They have been super caring, attending, and helpful. Without great detail, we have looked into and opted for an immunotherapy treatment at the Children's Hospital of Philadelphia. Part of Knox's care will be there and part will continue to be at UVA (again, they have been super helpful in figuring all of this out and will still be greatly involved in his treatments). The treatment is called CAR-T therapy that uses his own cells. These cells are collected from his blood, re-engineered in a lab to recognize the leukemia in his body, then re-infused like super-hero cells that go to town destroying the leukemia. I would invite you to look up CAR-T to see what it's all about. We are at peace with this decision due to God's mercy in answering our prayers to work in me to provide wisdom and comfort as I worked to gather info and decide what to do. We are praying that God would be pleased to use this therapy to heal our son and that we may be able to proclaim Him in this way and to further promote this therapy as a possible treatment for so many kids to come. Our timeline is roughly this...we will go to Philly next Tuesday to get into town. We will be there Wednesday to meet with the team, then he will undergo cell collection on Thursday, the 21st. I can update more on that as we get closer. We will then come back that evening and expect to be at UVA on Friday, the 22nd. It takes about 30 days or so for the T cells to be "supercharged," so while that is happening, Knox will be making trips to UVA for chemotherapy. We aren't sure exactly what that will look like yet, but we do hope there's no need for hospital admission, but that's certainly possible. After the cells are prepared and they are ready to be infused, we will go back to Philly for about 6 weeks. He'll get 4 days of chemo there, then the infusion, then we have a number of follow up visits there. Everything there is designed to be outpatient, but Knox and I will "live" in the area for those weeks. Again, I can update more about that when we get closer. Many have started to ask about lodging, food, etc. Some of that is taken care of through the hospital, but we'll get more details as we get closer.
Knox had his most recent LP to treat his CSF this past Monday and after only a few treatments, his CSF has virtually cleared up from the Leukemia cells. What a blessing that he has responded to treatment this well so far. There's no more scheduled treatment for Knox until we go back to UVA next Friday.
The outpouring of gifts, love, and prayer has been incredible. I don't know everything about why this is happening, but I can at least say that God is glorified through this situation by directing so many to him in prayer, acts of love, and His word. To God be the glory. Please pray that Knox will stay free of any normal sickness. Please pray that his body will remain strong while under chemo here for the month or so that he receives it. Please pray that CAR-T will be used to get rid his Leukemia for good AND that God will be glorified in this way.
Blessings to you all - Buck

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