Hanging in there

Hello all! I've got a lot of news, but not ton of energy so I'll try to share as much as possible here quickly!

Unfortunately, things have not been going as planned here during the last week especially. A couple of weeks ago we had my big day of testing at Karmanos to see if I could get into a new experimental trial. It was a really long day with many appointments and tests, but overall it went as good as could be expected. It really ended up tiring me out for the rest of the week however. I guess that all of the waiting, and needles, and stress of the hospital just ends up getting to me during a long day like that and it knocks be back for a little while.

We were able to go back to Ohio then for a week and enjoy some time at home although I was really struggling with fatigue and pain. We had a fun time getting ready for and watching the Super Bowl with my sis and bro-in-law though. A pretty exciting game! We're still getting settled in slowly there and just enjoying being in our house together.

We came back up to Michigan this past Monday because I was supposed to start my new treatment on Tuesday. However on Monday I noticed that my right leg was not responding properly. It was just kind of a slight floppy feeling in my leg that wasn't quite right. I mentioned it to the doctor on Tuesday and she was concerned about it. She thought it was probably due to the tumor near my spine that we had decided not to do radiation on earlier. Unfortunately this meant that they needed to do radiation on it now to try to shrink the tumor because it is difficult to regain leg function once it is lost. This was a big blow to us because it meant we couldn't start the new treatment. The same day they got me in for an MRI of my brain and most of my spine. It was about a two hour MRI in a tube. I was ready to get out of there by the time it was done!!!

There was a possibility that they would start the radiation on Tuesday already. The radiation oncologist received the MRI results very quickly and we found that there is a lesion on the top of my brain along with 4 very small spots, the tumor near my spine that we had known about, and another growth on some nerves near the base of my spine. I've been really worried all along about this getting to my brain - so this was obviously really hard to hear. They got me set up for some radiation for Wednesday to try to shrink the tumors. We went in and did that the next day and it seemed to go fine.

However, Thursday morning I woke up and my leg was much worse. I couldn't move my foot at all and my leg was very numb. I took a shower and got dizzy and had numbness going up my right side and into my arm as well as some blurred vision in my right eye. We called the doctor and she told us to come into the emergency room. So Jess's folks took me down to Karmanos and they eventually admitted me to the hospital where I stayed for Thursday and Friday night. I've continued on the radiation and they have me on some steroids to reduce swelling on my spine. Thankfully I was able to get out of the hospital on Saturday. My leg is somewhat better, but I am walking with a cane. I have a couple more radiation sessions on Monday and Tuesday and then after that I don't know what the next step is.

This progression of the disease just came on so quickly that we're still trying to wrap our heads around it. We'll be talking with the doctor tomorrow to find out what comes next. It sounds like I still may be able to get onto one part of the experimental treament I was going to be on because that particular drug is in more common use now. However I may have to go back to the University of Michigan to do that. Basically though we just don't know where things are going from here.

This week (and month) have really been incredibly hard for us but we keep bearing up under it thanks to tremendous support from friends and family and the grace of God. We're just continuing to refuse to give up hope no matter how bleak everything looks. One of these days we're bound to get some good news! We just ask for your continued thoughts and prayers as we continue through these uncertain and scary times. It is so great to have your support. I'll try to write again as soon as we have some more information about our next medical moves.

Take good care!
Much love!
Brian