Finding Refuge

I have to give a warning to this post: Typically when I post things, I have a clear vision of what I want to share. I try to summarize how David is doing and our plan of action. However, this time I don’t really have that. I’m still trying to wrap my brain around some of this, so if some of this update seems disjointed or confusing, know that it’s a direct reflection of how I’m feeling, then.
So David had an MRI on Monday and then his CT simulation on Tuesday to plan for his radiation on the tumor on his pineal gland. The good news is that the tumor has shrunk a little, so he will have only one, very targeted radiation treatment on that tumor next Tuesday.
However, there was also some bad news. The disease seems to have grown on his brain. This is more evidence of the leptomeningeal disease. It’s not a firm diagnosis of it, but it’s pretty much as close as we are going to get without doing a lumbar puncture. At this point, the treatment of it would be stuff he’s already doing (the targeted cancer medication and the immunotherapy) and on top of that, whole brain radiation. It would be a specialized whole brain radiation that would still protect the memory section of the brain, so his memory wouldn’t be effected. It would be about ten sessions and the biggest side effect would be total exhaustion. This would not eliminate the leptomeningeal disease, however, it could slow it down.
We are in the process of praying about what to do and also communicating with his doctors about any other possible treatments, or clinical trials. Overall, our goal remains the same: For David to have as long as possible, good quality time with us. We know how badly the brain radiation effects David. So if he pursues that, we are looking at 3-4 weeks of him pretty much sleeping constantly. If it means it will buy him a lot more time, obviously that’s not a big deal. However, if it will only buy him a short amount of time, it may not be worth the exhaustion that it causes. None of us are fortune tellers, so we really don’t know how effective the treatment will be. Right now David is doing ok. He’s able to enjoy some time with us every day and I would hate to lose that.
As of right now, we are taking some time to decide what to do. David’s radiation oncologist is going to go ahead and make up the plan for the whole brain radiation, so if/when we decide to go for it, the plan will be in place and we can start right away.
Since his diagnosis back in December, David has been in the fight for his life. This week has just made it a little more intense. Before this week, I’ve always been able to be very optimistic about David’s future and felt confident in all the choices we were making. This week has changed things. I feel like I’m not able to think through our choices clearly and I don’t see a “right” path for us to take at this point. It’s a very unsettling place to be.

Psalm 46:1 God is our refuge and strength, a very present help in trouble.

That is where you will find me right now. I am confused, I am not clear-minded, I am trying to remain strong, but only being reminded how weak I am. I am frustrated. I am a huge mix of emotions and I just want refuge. I want strength from someone other than myself and I want clarity, and wisdom. There is no other place to find all of that, than in the presence of my God.
Prayer requests:
-For complete healing of David’s body
-For renewed energy and strength for David, every day
-For wisdom while making decisions
-For God’s perfect peace to be present in our lives right now
-For every day to have opportunities for us to be joyful with our kids
-For our kids and all the challenges they are facing

Love you all and thank you for your continued love, care, support and prayers!!

And as an added bonus for you: Enjoy a picture from our very first dance we went to together, back in 1999.