Well, we may have gotten some questions answered, but left with a whole new set of unanswered questions. All I have to say is, this sure is a lot to deal with!
We met with a lot of people this morning/afternoon as part of their brain tumor clinic. We arrived early, as to alleviate any anxiety. As we were waiting, (and waiting and waiting), we were informed that they were running over an hour behind. We didn't get in until close to 11:30. Codys patience had run out!!
We reviewed the MRI that was done last week. It did show areas of increased intensity, which indicates the cancer is continuing to grow. There is also more than one area (multi-focal) of cancer growth. We were not surprised by this, knowing it has been 7 weeks since surgery with no treatment. Now, we just have to move forward.
(*the trial involving the polio virus has been determined to NOT be an option. Because of the multi focal tumors-that are more than 1cm apart, as well as being too close to the thalamus. Both of these do not allow him to qualify for the trial).
He does, however, qualify for another clinical trial. We were given a lot of paperwork to review tonight and mark up with questions. This trial is using immunotherapy rather than chemotherapy. We were told that they are finding the newest/better way to treat cancer, is to get our own immune system to do it. Which to us, makes complete sense. When cancer cells grow, they put up a barrier around them that does not allow anything to attack it, and therefore just continues to grow. The drugs in this trial, would help to break down those walls or barriers in order for the immune system to kick in and start attacking. There are two different cohorts to this trial, which is decided by randomization. The risks and side effects are certainly scary when reading it on paper. There is a lot to think about and discuss. But cody feels like he doesn't have an option, he has to be a part of this. He doesn't feel like he can pass this opportunity up. He told me today "I'd rather die fighting than die waiting to die." How's that for a punch in the stomach?
We meet with the team again tomorrow at 10:00 to have our questions answered and to sign consent if he wants to go through with it. I hate that I have reservations simply because of the logistics of it all. Being a part of this trial is going to be a huge financial responsibility, as it will require us to make a trip to Duke every 2-3 weeks. Codys work has been amazingly flexible and accommodating. But school starts for me on Monday, and I don't quite know how I'm going to make it work. Plus, we have 3 small children to think about. How are we supposed to make decisions like this? If you have any insight for us, I would LOVE to hear it before 10:00 tomorrow morning. Text, Facebook msg, blog message, anything....Seriously!
I am not always the best for advice and I couldn't imagine knowing what to do being in your shoes, but here is what I do know: you two have amazing families that will be there to help out no matter the circumstances. You have amazing friends that will drop anything to be where you need them. A job is a job, and I know that is easy to say and so much harder to let go, but in the end a job is a job and well Cody, he is Cody. God has already taken you to Duke and I can only imagine is pushing you to see it through, because in the end it is Cody and he is part of your everything, your happily ever after. We love you guys and whatever you need from us we will do/be/say/etc. I don't know how the school district runs but I know that you might have options with FMLA for short term disability that could help you along the way. These decisions are impossible to make but follow your hearts, they haven't lead you astray yet.
ReplyDeleteLove you always,
Marcus, Jo, Sawyer, and Hanna