I know it’s been a while since the last update on Brian. Things were going well until 5 weeks ago. Brian and Stephanie received devastating news this week.

With the new year starting comes deductibles starting as well. If you are able to share even a little to help them through this heart breaking time it would greatly appreciated.

Please see Stephanie’s update below ❤️‍

Things have not been going very good over here lately. Brian has been declining quickly over the last 5 weeks. He was unable make it to his spine MRI on 12/19 due to weakness and yesterday morning he took his 5th fall the last few weeks. Getting him to appts has become nearly impossible and just not safe anymore. I sent the doctor a message and she called me back quickly. This is what has unfolded…….

Dr. Johnson and our favorite PA Susanne are in agreement that even without MRI confirmation the tumor is growing rapidly and has figured out how to grow and win against the avastin and Lynparza/loumustine treatments. Once “the beast” figures out a way around the barriers that Brian has been on for over a year, the growth is rapid and having the BRCA gene is not helping with the extremely quick progression of things. Brian’s legs are not working……the left leg is especially affected and very very heavy. There is no muscle mass anymore so when he attempts to stand he collapses. These symptoms point to definite spine spread and if the doc had to guess she thinks it is low, probably around L2 since the legs are having such trouble working properly. Brian’s pupils are also 2 different sizes now which is indicative that the tumor is now on the base of the brain stem as well. The doctors have assured me that they have thrown every trick in their arsenal Brian’s way and there is nothing more they can do. They have recommended that Brian go on hospice care to ensure he is comfortable and able to spend whatever time he has left with his family.

Susie and I told Brian today, along with the help of the most precious bridge nurse Lauren. There were tears…… lots and lots of tears. The unknown of how this will progress is frightening. Lauren promised us that with hospice onboard, we will be prepared for whatever is coming our way — comfort meds, 24/7 ability to get in touch with an oncall nurse and supplies delivered directly to our home. There will be no more worrying about how we will get to appointments and if we can do it safely. It was not 20 minutes after Lauren left our home , hospice had already called and Brian will be assessed and admitted to comfort care tomorrow morning between 9 am and 10 am. We are patiently awaiting a hospital bed for downstairs so we can enjoy Christmas around the tree, open presents, and celebrate his 51st birthday on 12/27. He also has an electric recliner coming—a bday present from his mom.

The kids have not been directly told what is going on but, I believe, they sense something is not right. We will talk to them in due time and will not hide any information if questions are asked. They are what Brian is most concerned about. I have been slowly trying to prepare them over the last 14 months. I pray that we all find some sense of peace and calm whatever that looks like.

Please give Brian some time to absorb this heavy news and please give him some space and time to reply to emails and texts. We plan on celebrating this beautiful time together making memories, taking pics, snuggling, and recording videos that we will have forever. This will be a Christmas all about Brian and whatever he wants.

Merry Christmas from our family to yours. Keep us in your prayers and your arms wrapped around our family as we begin a new year full of changes, probable heartbreak, and a trek into the unknown. My faith remains unwavering just as it has throughout this journey. With God by our sides, we can face anything head on. I am leaning on my Savior now more than ever.

Continue to pray that Brian is courageous and strong. Continue praying that he remains pain free. He is a warrior and we all love him so so much.

With Love,

B,S,L& R