Josh showed some improvement today. His swelling went down somewhat and he’s breathing on his own mostly. They have the tube still in place because he’s at risk for his airway closing. They did an ultrasound on him today.
We got word back on the preliminary results to confirm Josh has PTLD or a form of limp node cancer, and it is likely an aggressive one. It has affected not only his throat but also in his armpits, his stomach and possibly his brain. Dr. Laura Newell will come in to talk to us about our options in the morning. She has been very diligent to do research on the different drugs and their toxicity risk on FA patients. She even called one of the best doctors in FA in Minnesota and will reach out to another one. Please pray for us to have wisdom in all the decisions and that we’d all (including the doctors) be well informed. We want Josh to be a part of the decision making process. However, having a breathing tube down his throat makes it so he cannot talk.
I asked God if they could just be able to take that breathing tube out ASAP; if the swelling in his throat would go down, they could remove it! It’s almost unbearable for him. It’s hard for him to communicate with us and that’s frustrating to him. His hands are restrained so he won’t yank the breathing tube out. He can’t eat or drink… today he signaled that he was hungry and thirsty. All the nurse could do was to clean his mouth to try to provide relief for his dry mouth. It reminded me of the suffering Jesus went through on the cross when he was thirsty and they finally gave him wine mixed with gall to drink. I did tell Josh that he reminds me of Christ and what Christ did for us on the cross. Pray for him to be comforted and ministered by the Holy Spirit. Please pray for him to be alert when we talk to the doctor, and for all of us to have discernment and wisdom as to how to proceed.
This Thorny Rose 