Hi friends. I know you all have been wanting an update since our last post, so here we go.
Actually, we wanted to take a moment first to say thank you. It literally cannot be understated how loved we feel. You all have reached out in so many ways, and it’s been amazing and humbling and such a blessing. So thank you. Thank you thank you thank you.
Ok, the good: the spinal fluid came back showing no disease in the spinal fluid. So thankful to God for that and thankful for all of your prayers. However, the spinal tap was ROUGH on Anna. She was extremely sick and having headaches and had to go back for a blood patch (a procedure where they draw your blood and inject into the same spot where the spinal tap was and it stops the spinal fluid leak). The majority of people I’ve spoken to who have had a spinal tap have all had to go back for a blood patch. Seems like that should just be standard procedure, but I guess I’m no doctor.
Anna ended up having NINETEEN spots removed from her brain in her last gamma knife procedure. A bit more than we thought. She’ll have a follow up MRI in the weeks to come to make sure it was successful and there’s nothing new.
A major issue we’ve still been dealing with is her pain. Again, because of the PleurX catheter and all of the inflamed tissue in the pleural space on her left side, Anna has a TON of pain in her left shoulder that radiates up and down her back. She has also been dealing with spasms where the catheter is, which is extremely painful for her. My wife who has birthed 4 children has called it 10/10 pain; just to put that into perspective. She hasn’t been tolerating most of the pain meds very well, and we’re still looking for that “magic bullet” so to speak that takes care of it and doesn’t make her feel worse.
Also, her most recent round of CT scans did show some growth in some spots and the blood biopsy did show a minor uptick in her mutation. As a result, there’s been a change to her treatment plan. The additional med she’s been taking on top of her original target med has reached the end of its usefulness, so she is being switched to a new med. It’s a med that her amazing oncologist has been fighting to get approved since our last update. She was even overseas in China at the time and she was working on it there! We’re so thankful to God for her. The reason why she’s had to fight for it is because it’s a new drug that is in between the end of clinical trials and being approved by the FDA. There were a bunch of lawyers involved between the hospital and the pharma company, and that was the reason for the delay. The drug was finally approved literally while we were sitting in the waiting room this past Friday. This will unfortunately not be a pill and she will have to go back to having once-monthly infusions. She starts this Tuesday.
So here we are yet again asking for your prayer support. We could use a win and it would be great if this med finally helps both reduce the disease and relieve a lot of her symptoms.
”He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.“
Ecclesiastes 3:11 NIV
I’m trying my best to believe this today. We would love to see that beauty soon. We know that we cannot fathom what God has done, is doing, or will do; so we are trying to trust. He is always faithful, just, and true. Please pray that we can see reminders of this for those times when we’re feeling like we’ve been run over by the emotional steamroller.
Thank you. We love you.
