Christian's PPB Cancer Journey

We were home for a couple days and we had to put him back on oxygen he started to de-stat.

Monday he went for a chest CT and did it awake we were so happy and proud of him again. The doctor started talking about possibly going in and draining the fluid. His pulmonologist put him back on a steroid and within a short period of time he didn’t need the oxygen. The pulmonologist also decided to continue the IV antibiotic at home for an additional week. Thursday we went to the oncologist office for labs and so they could re-access his chemo port. They have to change it out every week. This past Tuesday we had another appointment with the pulmonologist. He said that his lungs are sounding better and that the last CT scan looks better. Wednesday we went to the hospital for an ultrasound of his chest to measure the amount fluid remaining in his lung.

They want us to repeat this ultrasound again in two weeks. Today we went to the oncologist office so they could do labs again and remove his port access for the first time in like 8 weeks. We spoke to the oncologist about new treatment options since the he isn’t eligible for the lightbeam trial. We are going to start a new medicine thats is going to target 2 of the genes that he expresses.

We had to go round and round with the insurance company to get the medicine covered through insurance. A month supply is normally $8,000 and with the insurance our copay would be $800 per month out of pocket. We did some research today and found that Mark Cuban started a prescription drug manufacturing company where we could buy a two month supply for only $256. We talked to the doctor about it and they’ve used before. The insurance companies are ridiculous. Using Mark Cuban pharmacy it is not only way cheaper but we will have his chemo medication in 2-4 days. We want to share this with everyone so many people could save so much money when it comes to medication.