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Brian's Journey

Receive updates and prayer requests for Brian as the Smiley family walks out this season in faith and hope!

Latest journal entry

Pressing On

Hello our beloved friends. Thank you so much for all you are doing in this fight with us. We will be eternally grateful for the outpouring of love, prayers, and support (both financial and countless other ways) coming our way. We are so blessed by you and please know that not a day goes by without us feeling your love and thanking God for what He has given us in you.

I cannot believe it is almost the end of March. Tomorrow it will be nine months since we found out about Brian's tumor. March 28th we will celebrate our 19th wedding anniversary.  On March 1st,  Brian had an MRI and received mostly good news from his neurooncologist. The MRI showed that the tumor had appeared to shrink in size from the December MRI and the swelling was way, way down.🙏🏼  We are grateful and joyful at that news!

Brian's liver enzymes, however, were very elevated and they have keeping a close watch on them to avoid liver failure. Last month, they trended down after chemo and we were hoping for the same this month. They did go down some, but he was supposed to have started his third chemo cycle this past Monday and was unable to because they had not come down enough. So we will have some lab tests Sunday and hopefully can start the next round of chemo on Monday. 

The Optune is going well. They say that he should have it on 75% of each day, and Brian's compliance has been between 91% and 94%. It is not really conducive to taking off and reapplying frequently. It now takes me about 25 minutes total to place the arrays and we change them every three days. He is such a trooper. We are praying that it is doing what it is meant to do - preventing cancer growth - while at the same time buying us the time until some amazing cure comes along. We are hitting this from every angle!

Last weekend, I was able to attend a two day brain tumor conference held at UCLA. It was a very intensive two days and very intellectually and emotionally challenging; but I am very glad I went. It really highlighted areas of hope and I was able to interact other warriors and caregivers in this fight. Brain cancer is really such an evil beast. The brain is amazing, with it's blood brain barrier protecting it from harm, but that barrier also thwarts some of the amazing immunotherapy and other cancer treatments from getting to the cancer at time. There is much hope, however, with incredible techniques for finding genetic markers and for workarounds that would boggle your mind. It's fascinating and terrifying. 

Brian is my hero and is doing well in spirit. Your prayers and love are felt daily and though he has some down days, his spirits are up most of the time. He is extremely fatigued now, and he is having a hard time with his speech and cognition, but he presses on. You can definitely tell we have been married for 19 years and dating for 24. I am able to capture things that would be very tough without years of being so intimately connected. Since his speech was comparatively above average before this, however, it doesn't really appear very off to anyone who didn't know him prior to his diagnosis. 

We just went in for an Avastin infusion today, which we do every three weeks. We are tapering him off his steroids VERY slowly. He has ended up in the ER twice while tapering and we do not want that to happen again. But the steroids are really messing with his body and he is ready to kiss them goodbye. I know if he were writing this he would tell you to never, ever get on them if you possibly could help it and if you had to, get off of them fast. We pray that he will be able to taper completely off with no side effects. 

So that is the latest update on our amazing Brian. Thank you again for everything in your support of us through this. When I get your letters and read them to Brian, tears stream down my face. I love the way you express your love for my husband, your friend. Your words highlight the beautiful man that he is and how he has touched your lives. He is also moved to tears and tells me such sweet stories about how he knows you. He gives me details about how special YOU are and it fills me with joy. He is so moved by your compassion and it blesses us immensely to hear how knowing Brian has touched you, because you have touched us in so many wonderful ways. 

We give glory to the Lord for bringing us through this and showing us love always. 

The Lord bless you and keep you; 

the Lord make his face shine on you and be gracious to you; 

the Lord turn his face toward you and give you peace."

Numbers 6:24-25