Discharging from the hospital can be great news. It often indicates a bit of recovery and everyone is glad to be headed home. While going home on Wednesday was a positive change, our departure did not make us feel like celebrating.
In fact, I was holding back tears as my brother-in-law helped load Josh in ole Ravi (our adventure vehicle). I continued leaking tears as we drove home and finally decided some music might help. I turned on the Hamilton soundtrack set to One Last Time, “George Washington’s going home…” to lighten the mood. It indeed helped.
We embarked on our return trip home with a heavy heart. You see, we discharged from the hospital without a plan to return to treatment through oncology but instead to begin hospice care. There is much weight and meaning to this word. And over the past several days, we have discussed in-depth with the doctors, nurses, family and friends what it means.
What we’ve come to realize is that the treatments have really weakened Josh’s body. He is now battling additional issues that are complex, and at times equally life-threatening, including blood clots, bleeding, pneumonia and non-recovering platelets levels, etc. We're in a cycle that is not good or easy to fix.
While last week’s MRI showed signs that the brain tumor may have shrunk slightly, it is still located in a really bad spot and continues to be inoperable.
We were and still are hoping for more positive news. Even in the midst of knowing that GBMs are some of the hardest kinds of cancers to treat, it is a gut-punch to shift to this plan. Even saying, typing and sharing the words hospice is hard.
While facing this reality, we still cling to fragments of hope. Our doctor reassured us many times that we can still evaluate Josh, check his levels and even meet with her. If Josh appears to gain strength or improve we can move out of hospice and reevaluate treatment options - which even still are limited. For now, hospice allows us to receive the most consistent care while remaining in the comfort of our home. The focus is on enjoying time together in our home, with family, friends and even our pups.
This is in no way easy. Our hearts are very heavy. And there's still a lot of uncertainty.
Josh does understand what’s happening but is weak and still has trouble sharing many words or even at times the right ones. Simple things like standing up and moving a few steps are a struggle that calls for some extra hands and help along with creative thinking.
Of course, many tears have been shared as we continue to process this as family and friends. While, it’s natural to want to ask the question, “How much time is there?” We, of course, can’t answer this.
Instead, we continue to take one day at a time, choosing to see and embrace each moment together.
God continues to be evident, providing strength that I don’t even understand as I love and care for my husband in new, complex ways.
I continue to pray for more moments, smiles and adventures as I trust in a God who can do anything. Each day, I try to remember the joyful moments – and strive to not get swallowed up in the not so great ones.
There is joy to still be found in watching movies together, eating meals together and even navigating new challenges together. Because, as the sign on our living room wall says,
“Together is a wonderful place to be.”
In the midst of this, I am beyond thankful for family and friends who surround us in this season. God’s love is being displayed greatly by so many people who care so much and want to do any and everything.
Thank you all!!
Please continue to pray for good moments, wisdom and so much more.
In April of 2019, we learned that Josh had a large brain tumor, a glioblastoma, in the middle of his brain. At the age of 41, this was quite the surprise. Josh sadly passed away after a short battle on September 30, 2019.
View his obituary
These past months, we've navigated the complexities of treatment, and hospice care and learned that there wasn't really treatment and that in Josh's case, the tumor was inoperable.
We're sharing our hearts and experience as we navigate this unexpected turn and God's goodness in the middle of it. We hope to encourage others by sharing our story.
Thank you for following along with our journey even in grief.
Feel free to message us.
If you'd like to donate to medical expenses, here's a link or you can email us questions
More about Josh & Jenn
Jenn Brown is the author of this site, a loving wife and communications guru.
Josh Brown most recently served on staff at Fellowship Bible Church in NWA as a Springdale Community Pastor. We've served in ministry in Missouri, Texas, Virginia and Nevada.
Cancer has been big part of our story. Josh has battled cancer three times already with the first to being non-Hodgkins lymphoma at ages 15 and 25 and the third thyroid cancer last year and a GBM, brain tumor this year.
Jenn's mom, Carol passed away from breast cancer 21 years ago and her father also went through treatments for Chronic Leukemia (CLL) in 2017 and is doing well now.
Friends & Family
We have been so encouraged by friends and family. Thank you for the practical ways you are caring for us! We love you all! This is just few photo highlights of some meaningful moments.