Reflecting on weeks 1&2
We've been home officially with hospice care now for two weeks. There is both good and hard in being here.
It is, of course, wonderful to relax in our home, visit with family and friends, sleep in our own bed and be able to roll out to the back porch for some fresh air.
The hard is in navigating care at times. Josh is still too weak to stand on his own and the brain tumor continues to limit conversation, making it hard to know exactly what he's needing or thinking. Thankfully, after several year's together I've gotten a little better at mind-reading/guessing. It's not perfect but we're learning.
Generally, there’s a lot of creative thinking and movement when trying to move Josh from the bed to a wheelchair to the couch, commode, around the house, etc. (In case you didn't know, Josh is a whole foot taller than me -- Tricky indeed). Sometimes we even call for aid from nearby friends to assist with a move on weaker days. While it's nice to have extra people around, it's also nice to have time together just the two of us.
We’ve developed somewhat of a pattern in our day with a little venture outside to the back porch in the morning, followed by rest, lunch, rest, dinner some show/movie watching and more rest. The hospice team checks in with us regularly and offers support and encouragement. We continue to be in the waiting, resting, hoping and praying mode.
Visits with dear friends are wonderful but take a lot of energy and often require more rest and recovery - so these are pretty limited at the moment. Even though Josh enjoys seeing people, his brain is working overtime to keep track of the conversations and his body is working hard to just be able to sit or stand up when needed. His status hasn't necessarily improved but hasn't gotten worse. We're still taking it one day at a time.
In the middle of navigating new challenges, there are beautiful moments with friends and family when we can temporarily forget that all of this is really happening. It almost feels surreal as we share stories, meals, movies, and smiles together. We love these moments.
While our photos might often appear happy, there is still much sorrow behind the smiles, of course. Although I still don’t know what God has next in this particular story, I know there is much joy and beauty to be found in each day. Because we have this day to be together.
Since returning home, I started writing about each day. On the first night, I started thinking about some of the things I missed already - simple things like brushing our teeth in the bathroom together, going out to eat, to a movie or walking the dogs. I soon realized that it would be so easy to dwell on what I already miss that I begin to miss the beautiful moments that are part of this day. I don't want to miss the joy found in today. With some God-inspired prompting I decided to also start a "But today we enjoyed" list:
A quick recap of some of the things from this week:
Today I missed:
But today we enjoyed
Through this process, I know God is reminding me of the beauty of today. Occasionally, there are days when the "missed list" is longer, but not often. I know it is good to acknowledge the hard but rejoice in the good too. I hope our story encourages you or reminds you, today, to see both parts of your day no matter how good or hard it might be.
At the end of our first two weeks of hospice, there is still a joy to be found in the daily moments together. I continue to be honored to be in a place and time where I can love and care for my husband in a whole new way. I am thankful today that we can even sit beside each other on the couch.
We continue to ask for your prayers for great moments, strength and wisdom.
“Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.”
Psalm 90:14 NIV
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.
Tuesday 3 a.m.
I really want to stop posting sad things but “sad bombs” keep blowing up around every corner, with each embrace, with each tender moment.
A not so smooth bathroom break at 3 a.m. made for some scurrying and the need for some extra pain meds as Josh's legs hurt from standing. Now, he is back to sleeping heavily. Meanwhile, I am wide awake.
Within the past 15 minutes I may have briefly tapped into all stages of the grief cycle: Denial and isolation, anger, bargaining, depression, and acceptance (Mostly the anger is due to the ice machine directly across from our room, "Why does anyone need eight cups of ice a 3 a.m.?" – Seriously!).
My focus though, lands more on the sorrow-filled parts of the cycle as I have a complete pity party while laying on a pillow on the edge of Josh’s bedrail watching him breathe.
Is this what the 'depths of despair' feels like?
The words to a song by John Mark McMillian enter my mind,
“I could lay my head in sheol
I could make my bed at the bottom of darkness deep
Oh but there is not a place I could escape you . . ."
From this spark, I begin to wonder, “What is sheol?” (Having not remembered all those seminary words that Josh may have used around me). I snag my computer for an internet search that quickly gets out of control.
In the process, I re-learn that "sheol" is a Old Testament Hebrew word which refers to the grave. This, of course, is a bit of a jarring thing to think about at such a sensitive time, so I just Google some more (Distractions, right?), and learn even more about the word. Along the way, I find some additional late-night encouragement and began to see how this word, that randomly popped in my mind, is presented in scripture.
Where can I go from Your Spirit?
Or where can I flee from Your presence?
If I ascend to heaven, You are there;
If I make my bed in Sheol, behold, You are there.
- Psalm 139: 7-9 (NASB)
This is a complete reminder that the Lord is there; that the Lord is near.
In the depths of my despair, the Lord is near.
Almost exactly an hour after the night-time pit stop, I begin to rest in God’s presence again. As soon as I do, Josh makes a weird sound and my heart rate increases with worry.
I pause, pray, breathe and remember the rest of the song lyrics.
“Your heart won’t stop coming after me
Your heart won’t stop coming after me
Your heart won’t stop coming after
Coming after me”
What reassuring words. Not only is Christ here, but he keeps finding ways to come after me (and us) – in each moment because he loves us so. (Whew!)
For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord. – Romans 8:38-39
Hugging in a hospital bed isn’t quite the same as regular hugs, but it is something. And it is special. As I rest my head on Josh's chest, his arm comes around me and squeezes as tight as he can. My heart swells. I breathe deep. And, of course, my eyes leak.
Today is our fourth day in the hospital, on our second trip in the past two weeks. Time is a blur. The words to the old song “Fly Like an Eagle” come to mind, “Time keeps on slippin’, slippin’, slippin’ into the future.” Time seems to be moving oddly quick, even in this.
As we sit in this moment, we’re navigating some really hard conversations as a couple and as a family. We’ve talked more with our doctors about the current plan and whether it is working and how to best solve the continual challenges we are facing.
What we know right now is that It appears the radiation and chemotherapy pills may have stopped the growth of the tumor but are not doing much more. In fact, staying on chemo pills has seemed to cause more problems, making it so we are continually battling sidebar issues that are really life-threatening in other ways. Things like dropping platelet levels, bleeding, blood clots, pneumonia, etc. are a terrible mix on top of the primary issue of brain cancer.
Ugh . . . Yeah . . . So what do we do?
Continue to pray for a miracle? Of course.
Trust in an Ultimate Healer? Yes
Cry a bit? (or a lot) You bet.
We also begin to talk about how to make the best of the worst situation. Again a LOTR quote comes to mind (I just can't help the inner geek).
“‘I wish it need not have happened in my time,’ said Frodo (when talking about the ring and hard battles).
‘So do I,’ said Gandalf, ‘and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.’”
That’s where we are.
We currently don't have an answer to the pressing question many are thinking and wondering, “What are you doing?” We are right in the thick of that process, praying, discussing and trying to decide what is the best next step to take.
We need your prayers.
As move forward – without doubt that God can do more but still with hurting hearts – we continue to trust and know that God's story is much bigger than ours.
We know He is with us as we linger in the comfort of His embrace.
Thanks as always for your love, encouragement and support.
God of Comfort
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too.
– 2 Corinthians 1:3-5
Yesterday, we quickly headed to the ER, per a recommendation from our oncologist with added concerns over Josh’s heavy breathing and even more weakness when trying to walk or move even a small distance. The afternoon and evening were a whirlwind of activity with tests of all kinds ordered and more.
This morning when thinking about it all, I popped open the Bible app for some reading. Following the previous RPT:Repeat post, my Bible app offered up some related verses that might be equally encouraging. After swiping past a few and nodding in agreement, I ultimately stopped at Philippians 4:5, which states, “Let your gentleness be evident to all. The Lord is near.”
Reading this was both an encouragement and a challenge, but yet again, so timely.
When shifting in and out of high-stress environments, like the sudden need to go ER, showing gentleness with ALL isn’t ALWAYS the first reaction.
It’s hard to not want to pull out the fighter instinct especially when answers seem to shift. For example, when four different doctors and nurses give us four different answers in less than two hours about whether to start or not start a medicine? Or when you have to rewrite the same list of meds over and over for the same facility and they still miss up the dosages. Or better still, when another medical professional directs questions only at Josh that he can’t answer, then they look confused and announce they haven’t read his chart which clearly states he has a brain tumor – Sheesh!!
And there it is. The slip from gentleness. The moment when I want to and even need to defend but forget momentarily to live out gentleness. In this same moment, I also might forget that the Lord is also oh so near.
Now don’t read this wrong. A strong patient advocate is needed especially in these situations and it’s totally okay to ask ALL the questions of doctors, nurses, etc. and to ensure that Josh (or whoever you might be caring for) is getting the best care. But here in these moments is also an opportunity to be light and love. To really show Christ in a time and place when it is least expected. To show gratitude or listen to a story of someone cleaning the room who really needs to share.
The great thing, as a friend reminded me today, is that whether I am living out gentleness or not. The Lord is still near.
Anticipating the day, and on edge about what is going on internally with Josh, I already feel my anxiety increasing and gentleness seeming less than interesting. But I rejoice in the fact that the Lord is near. Through his strength, I hope to also keep finding moments to live out gentleness, self-control and loving kindness in this season.
How precious is Your lovingkindness, O God!
And the children of men take refuge in the shadow of Your wings. – Psalm 36:7
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness,
self-control; against such things there is no law. – Galatians 5:22-23
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.