I will say of the Lord,
"He is my refuge and my fortress,
my God, in whom I trust."
I want to start by thanking everyone for their patience in this journey with us. I haven't been able to update this journal as frequently as I had anticipated. Right now, we are deep into treatment for Brian and he is tolerating it very well. He has had targeted radiation treatment to his tumor every weekday for nearly six weeks now. Every morning, after dropping David off at school, we head down to Elk Grove for his treatment. It has been emotionally taxing, but the wonderful news is that it is over in 2 days! His last radiation treatment is this Thursday, September 22. The radiation effects have been much fatigue and hair loss for the left side of his precious head. His smile keeps shining, though. He is an amazing trooper though all of this, truly.
We had a scare a few weeks ago that brought us to the emergency room. Brian returned from a short trip over Labor Day to visit his family and friends and woke with a debilitating headache. After his surgery and beyond, he never ranked his pain over a 3 on a scale of 1 to 10. That day it at an 8/9. He was sick and it was extremely frightening. Driving to the ER a half hour away was one of the most stressful times in my life. The doctors were worried about the possibility of a brain bleed. If that won't make you drive like a maniac, I don't know what will. In retrospect, it may have been more wise to call an ambulance, but I just didn't want to waste a minute. Thank the Lord, it was not a brain bleed, but a result of much swelling from the radiation and the combination of the taper off of his steroid medication. He is now back on the medication. The offers of help and prayers being sent our way that day were amazing and I am so grateful for that.
The course of treatment continues with our bi-weekly trips to UCSF for the clinical study. The doctors, nurses, and social workers there are all so amazing. They are attentive and so helpful in everything we need, from helping with medical and insurance forms to just being there to support us. We are very blessed by them. He gets the infusion of Nivolomab every time we go, and will continue to indefinitely, unless they see disease progression. That last phrase scares me. I am not going to lie. As of right now, we are praying this drug is working along with the radiation to completely obliterate that residual tumor. We pray there is no new growth of tumor, nor any other tumors coming forth.
So when will we have more information? Our next MRI is scheduled for October 25th, at UCSF. It needs to be scheduled out about a month from radiation because of the resulting swelling in the brain. Hopefully, most of the swelling will be down by then and the doctors will get an accurate picture of a tumor-free cavity! That is our prayer, though we will also take a stable scan.
Brian is in good spirits, friends. He feels all your love and support because you have been so gracious in showing it. On a daily basis, we receive one form or another of encouragement, prayers and gifts. Thank you. Truly, it helps gets us through each day and we feel the love of God in a powerful way with each gesture. Physically, Brian is fatigued, and his speech, reading and writing are still off so he cannot work. He badly misses his work and his co-workers. We pray that he will be able to return one day and that his speech and cognitive issues will be restored in God's perfect timing. Right now, that is not God's plan for Him, and he knows he is in His hands.
Thank you for all your support. I wish I could tell you more at this point, but we are essentially in a waiting and trusting period. We are thankful for each day and for you all. Please continue to pray for us and for Brian's complete healing -of the cancer, the speech and the cognitive issues. Please pray that we can continue to see the joy in each day, because we know each day is full of blessings for us all. It is just a matter of opening our eyes and hearts to see them.