It has been some time since I have updated this blog and I apologize for that. Things have been changing quickly around here and I am doing my best to take care of my amazing man and the two others seeking to become like him.
Today marks the day we went to the ER close to midnight, Brian had an MRI, and then just after midnight, found out that he had this terrible tumor growing inside his head. The shock has not worn off, honestly. I still cannot believe how this thing came from out of the blue and has forever altered our lives. What is so crazy is that since then, we have met and have become acquainted with so, so many others that have the same diagnosis. Glioblastoma Multiforme, stage 4, possibly the deadliest and fastest growing adult cancer. Unbelievable. My heart is so heavy for them, but it is also so encouraged to see so many brave and wonderful souls fighting the fight and keeping their faith, their hope, and their spirits high.
Our precious Brian. Things for Brian have not gone medically well these past couple months. But let me begin with stating that we are still praying for a miracle. God is able. He can do anything at any time and if it is His will, He can heal Brian. Glory be to Him whether He does or chooses not to. We trust that He has a perfect plan for us and that is where we stand.
After my last update in April, Brian began the new chemotherapy, Lomustine, and continued with the Avastin and Optune. His blood tests began to show that his platelets were low and there was some concern that he would not be able to take his second cycle. Also, he got a terrible rash that lasted a couple weeks. They believe it could have been a reaction to the new chemo. I felt so badly for him. On top of everything, the poor guy had an itchy rash that plagued him. It was such a blessing to have some remedies that helped with the itchiness until it went away. And it went away just in time for us to get his platelets back up. Right when we got results that his platelets were up enough to start the second round of chemo, everything took a turn for the worse.
June 5th, the very same day of the more positive blood test, Brian experienced his first seizure since all this started. And it was a doozy. It was full blown tonic-clonic (grand mal) seizure. Fortunately, it happened while he was just about to take a nap, so he was safely in bed. It was terrible. Trust me, you never want to see someone experience this. Both of the boys were there and it is something we will never forget. The blessing is that Brian has no memory of it, which is common for all those who experience it, thank God. The paramedics came and he was brought to the ER, at which he experienced his second tonic-clonic seizure. They then admitted him to the hospital.
While there, he was very out of it and it was so hard to see. I stayed with him in the room the entire time. In addition, he must have pulled or strained a muscle in his back during the seizures, because whenever he needed to move he had so much pain. X-rays revealed nothing, so it must have been muscular. The pain slowly went away over the next week and a half, thankfully.
To top it all off, they did an MRI which showed significant growth of the tumor. Given all that had happened, it was not a surprise, but was certainly devastating. The treatment wasn't working and the tumor was growing. Rather than continue with infusing Brian with poison, the doctors recommended, and two other neuro-oncologists that I consulted confirmed, that taking Brian off all treatment and seeking to make him comfortable was the best thing to do. It's a very hard thing to grasp, still. But as I mentioned before, we have not given up hope and we are praying for our miracle. We are also continuing his natural supplements in the hopes that they will reach and shrink the tumor.
Since his hospital stay, Brian has lost most of the use of his right hand, right leg and has experienced some vision loss in his right eye. The right side of his face also shows some loss of muscle use. His speech has sadly also suffered terribly. It is so incredible to see this when it has just been a year since he was diagnosed. My heart is so heavy for him- to see the man who was once so loving, active, engaged, intelligent, charming, fun and athletic - struggle so much. We have arranged the home to make it accessible for his walker and wheelchair. Hospice, oh how I hate the word, has begun. It has provided help and support on many levels, but I am not ready to give up and I am looking forward to getting the "hospice graduation" certificate that was mentioned at our consult.
It has been a mighty change around here, but God is providing strength and comfort on a daily basis. We have been blessed beyond measure by the same incredible outpouring of love, help, and support that we have been throughout this journey. We see the hands of God on a daily, sometimes hourly basis, in the hands that come here in person and virtually, to lend their help, their hugs, their expertise, their know-how-to-organize-and-fix-all-things, their food, their financial assistance, their prayers and countless more. We could not do it without them. I know it's all part of God's comfort being poured on us and I will be forever grateful.
Thank you for being patient and for checking in even when I haven't posted. I know you love Brian. I know you also want a miracle. Thank you for your persistent prayers. I believe a miracle can happen at any time. Because God wants to give us abundantly more than we can ask or imagine.
The song "Even if" by Mercy Me has been going through my mind often. It's a good one. It's a hard song to sing but it represents the truth of where we are right now. Here it is if you want to take a listen.
Bless you, friends.
Now to him who is able to do
immeasurably more than all we ask or imagine,
according to his power that is at work in us,
to him be the glory in the church
and in Christ Jesus throughout all generations,
for ever and ever! Amen