Does the Turtle Win the Race?

Things are moving at a turtle's pace. It is very stressful, when we are talking about Brian's life being on a time limit. I feel angry that God seems to dangle things in front of us, then whip them away, like a sick joke. Ultimately, I know this isn't how God works, but it still hurts.

Sometimes I wonder if I should pay someone off, or get nasty and mean, or wonder who to kiss up to, or if I should just beg. I've prayed and prayed, and that is working only within the realm of how God wants it to work. I've come to find that whatever happens with this is going to happen.

There appears to be a glitch with the anti-ctla, as Bristol Myers Squibb is now wanting to provide this as a expanded access protocol instead of as a compassionate use protocol for individual patients. I am sure you have software on your computer if you want to find a way to translate that into English. How I can best explain is to say that they are wanting to set up a whole program for compassionate use, but that takes longer than just getting the drug for Brian. Dr. Anderson is concerned that this will take a while, and has tracked down a melanoma specialist in Chicago whom he knows and respects that would likely take Brian immediately. There is a lot to consider, and I would put him on a plane in the morning if needed. Melanoma Intl. has already said they will help us get there. It could be an option to start in Chicago and then transfer to Ellis when everything is set in place.

I don't know how to expedite any of this. Melanoma Intl. is going back to the drug company tonight to see what they can do.

We have also requested an evaluation with the neurosurgical oncologist and radiation oncologist regarding options for the brain. We just can't sit back and let a 2cm lesion kill him, so we are seeking treatment. We don't know what the answers will be, and whether Brian will agree to anything they offer, because indeed quality of life is important, and they are concerned about permanent damage to this area. If this disease progression is inevitable, then there is absolutely no reason to cause additional trauma and distress to Brian, and he wants to be able to be free of these symptoms for as long as possible, not speed them up. I don't know when this is going to happen, but it will be soon if they listen to my desperation.



We have also basically said to start the process to head to Chicago, so we'll see. This all seems to change at a moment's notice.

I wasn't going to post this, but have decided to give some basic information just for you to pray specifically. I have been diagnosed with a cyst-like tumor on the backside of my uterus. I know these type are often easy to take care of, but I'm down so low that it makes it very difficult to even think rationally. I have told God that we are beyond our limit, and I am unclear as to why we keep getting dosed such a heavy load. I don't know what life here on earth has for us, but our rewards in Heaven surely will be great.

Please continue to pray for Bryce. His MRI results today showed 6 new brain tumors since the last scan six weeks ago, and they no doubt have some very difficult decisions to make.

Jenni