Homegiving

written by: jamie kraus

We laughed at our friend Hite the other day for using the title ‘Friendsgiving’ for a picture he posted on social media.  (Apparently this is really a thing because I’ve seen it a few other times since then).  And while I am definitely not as hip as Hite,  I am officially coining the term ‘Homegiving’.  I’m pretty sure that’s what you get when you combine homecoming and Thanksgiving.  It seems only fitting that since our Jen got to come HOME from the hospital today (yes, you read that right), we can celebrate her homecoming along with celebrating Thanksgiving.  All in the same week!!  I’ve always loved a 2 for 1 deal.  But this one seems extra sweet.

Drs. Casanova and Osborne determined that Jen was well enough to leave the hospital when they visited this morning.  And let’s be honest.  Jen’s reaction to that news would have been pretty excited without medication.  But Jen on steroids?  Please tell me you’ve seen ‘There’s Something About Mary’ because Jen’s actual reaction was akin to Magda’s energy level after she accidentally swallowed a ‘mystery’ pill in her drink.

magda.jpgI’ve known Jen for over 30 years and I really don’t think I’ve ever seen more energy exude from that body of hers.  I guess after 9 days of being cooped up in the hospital, the thought of going home jazzed her up a bit.

Too bad I already vacuumed my couch this week.

Jen said the only one not jazzed up about her going home would be Lincoln, as he’s grown very fond of his hospital room (Pickens 518).

Here he is with his first ‘pet’ aptly named Ladybug.  Juju took him for a walk around the hospital one day and he found the pet he’s always wished for.   T. Boone, you’ve done it again.  Thanks for making dreams come true.

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As cute at Ladybug was, no one else was fighting to stay one more night.  Except maybe Phil Collins.

Over the past year, we have been praising our heavenly Father for the ‘small victories’ (as we call them) on this journey.  Today, we praise Him for allowing Jen to come home.  These are our praise hands.

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We also praise Him for the care of the nurses, the wisdom of the physicians, the countless acts of kindness that occur on a daily basis, and the friends who ADORE and take care of the precious 4 year old owner of “Ladybug”.  All gracious gifts from above.

Jen and I also had a nice little chat today on the way home from Baylor about the Lord miraculously providing all she had needed to get through each day in the hospital.  He truly is steadfast and faithful.  And even though being home from the hospital will prove to be a challenge in many ways (organizing Jen’s daily medications would make even the most type A person sweat), we will cling to the promise that our Lord will meet her every need in the days to come. (Philippians 4:19)

[A side note: the difference between me and Jen writing this blog?  I had to google the reference to that verse and she would have nailed it from memory.  Just keepin’ it real.]

Many of you have inquired about what the future holds for Jen. If she knew,  I promise she’d be the first one to tell you.  But the hard truth is none of us know.  Not even the doctors.  Yes, she’s home from the hospital.  But that doesn’t mean that she didn’t throw up an hour after she returned home today.  Is this her new normal?  Most likely.  I’ve learned that stage 4 cancer is like an uninvited visitor that has overstayed its welcome, and has no intentions of ever leaving.

For now, we continue to pray for peace & comfort for Jen, Scott & Linc.  All it takes is one look at this picture to prove that God is providing just that.

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Happy Thanksgiving to you and your family.

And Happy Homegiving to the Clouse house.

With a grateful heart,

Jamie

PS: Just got word that CC has already made a spreadsheet of Jen’s daily meds so the ‘medical management team’ (aka her helicopter friends) can keep it all straight.  THANK YOU CC!!!

 

One week makes one weak.

So Jen is still in the hospital.  It was a week ago today that she was admitted.  The physicians remain a little perplexed as to why she is still throwing up (among other things that we don’t need to mention, except that I just did).  Earlier in the week, the physicians began treating her for adrenal gland insufficiency.  And just for fun they added more steroids to the mix.  She’s had an abdominal X-ray and a GI scope thus far, and today she had an abdominal scan.  Couple that with a few IV bags of Magnesium and Phosphorus, and it’s safe to say her body is weak from all of this.  The doctors are ultimately trying to determine what’s causing the vomiting and diarrhea (oops I said it out loud).  As Jen said, it’s opposite day.  What needs to come out stays in and what needs to stay in comes out.

The good news is that Lincoln has frequented the hospital and even spent the night last night with Jen.

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We, at the aforementioned Four Seasons, call this the corner floor suite.

Dr. Osborne prescribed a little family time and suggested that Scott, Jen & Linc watch a movie together in the hospital bed.  He was happy to be with Jen, and even tried to feed her dinner (we didn’t feel it was necessary to tell him that outside food gets delivered each day and no one really eats what is underneath that mysterious plastic dome).

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Movie night thankfully included a shake and some snuggle time with mama.  Who needs buttered popcorn when you have that?  (I’m praying that you can’t see me raising my hand.)

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This picture needs a moment.  Unbelievably moving.

As difficult as this is on the big people, little Lincoln is definitely feeling the effects of not having Jen around.  We are comforted only by knowing that God holds this precious boy in the palm of His hands.  Even in the darkest moments.  The Clouse trio is having some good quality family time at the hospital to ease the burden on Lincoln, but as you can imagine it’s challenging trying to entertain a 4 year old in a hospital room.  Thank you for your continued prayers for this little man (they paid extra for the wall vent in the suite for those of you wondering).

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The other good news is she went for a little walk yesterday and got a dose of sunshine (albeit the chilly kind).  It was probably my most favorite memory this week.  To see her breathe fresh air and feel the wind on her face was priceless.  We giggled, though, because as hard as you try to pretend like things are normal, there’s always THIS little companion to remind you otherwise.

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I feel like a broken record when I tell you that your prayers are greatly appreciated.  But they are.  I’m assured it’s what gets Jen, Scott & Linc through each day.  We honestly don’t know what the remainder of this journey looks like, and it can be scary at times.  But we DO know who has it all mapped out.   Jen is confident in the Lord’s plan, His provision, and His goodness.  Regardless of circumstance.

She remains the truest example of faithfulness in her walk with the Lord that I have ever witnessed.  My heart swells with pride to be her friend, and with gratitude to have the opportunity to care for her.

Along with her army of angels (including HER dear Mama, Jane), we say a sincere THANK YOU for the many little things you are doing behind the scenes to help her life (outside of these walls) run smoothly.  Each errand run, however small, has not gone unnoticed.

We serve a mighty God.  And it’s in Jen’s weakness, HE is made strong.

“My grace is sufficient for you, for my power is made perfect in weakness.”            2 Corinthians 12:9

Much love to you all,

Jamie (aka B)

PS: We will post a quick update with scan results as they become available.

 

 

 

 

 

If only this were the Four Seasons…

written by: Jamie Kraus

If only this were the Four Seasons Resort & Spa instead of Baylor Hospital, Jen would be thrilled for her extended stay.  However, the only cold refreshing towels being served to her are by me after a violent episode of vomiting.

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It looks a lot like this.  Without the cute little tongs of course.

Our sweet friend has had a really rough week.  Thank you for your prayers, calls, cards & concern.  Jen & Scott appreciate the many engines that keep this train moving in spite of this set back.

Dr. Osborne & Dr. Casanova were in for a visit today and have formulated a plan for Jen’s pain relief & discomfort.  Please continue to pray for her as she remains in the hospital at least for another night.

Will keep you posted when we have more news.  Or find some tongs.

Much love and gratitude,

Jamie (aka B)

Great is thy faithfulness.  Great is thy faithfulness.  Morning by morning new mercies I see; All I have needed thy hand hath provided.  Great is thy faithfulness, Lord, unto me.

 

 

 

Good Friends and Indians. Or Not. 

We are in a super hard and super sweet spot when it comes to Lincoln. Hard not to be with him all the time, hard to see his outbursts of anger knowing his little world is upside down, and can be challenging to coordinate the people/places/plans of his little world without me at the helm. But when I think back on this season I have no doubt that the strongest memories when it comes to Lincoln will be how incredibly sweet it is to have a host of friends and family that love him, care for him, feed him, organize his closet, play with him, pick him up from school, take him to school, give him costumes when we needs costumes, read to him, and even take him to get his haircut. 

We have many heroes like these and on any given day any number of precious friends is stepping in to make his very abnormal life as normal as possible. Today, that friend is his Aunt JJ..
She took him to Chapel School where all the kids were expected to dress like pilgrims or Indians. Or not. This is the report I got: Well dressing up as Indian or pilgrim was NOT in Linc’s plans for today. He was intent on being a shark. Sweet Kate Meyer offered to give him “Indian face paint” and he said “only if you paint a shark on my cheek.” I tried to play it up and say “oh awesome…let’s put on the Indian tshirt and your Indian name can be “Little Shark”. Not so much. 

And if you look closely at this picture you might like to add “Little Shark Who Needs a Haircut.” After B sent y’all the hospital picture yesterday I was a bit taken aback at how overdue we were for a haircut so asked Jenn to help with that today after school. And I got this report:

He just said “JJ” under his breath…I looked up to see this– notice the adorable thumbs up in his lap 👍 

  
So we are thumbs down for dressing up but thumbs up for our lollipop with favorite stylist, Tempe. 

And then she sent me this update:

We are having a good day even with wheels off thanksgiving feast! 

He just said “my mom is coming home today!”

I said “well, you know what…I just heard from your mom and the doctors have decided to keep her in the hospital for one more night.” 

He said “but my dad told me she’s coming home…” 

Me: I know buddy….that’s what we all thought too. 

Linc: this is not fair. The Drs just can’t keep my mom

Me: I know it doesn’t feel fair. They are trying to give her medicine to give her energy…

Linc: why can’t she just drink a drink for energy? 

I think it’s fair to say that Lincoln is thumbs down for another night in the hospital for Mama?! Thankful that he is headed this way to see me in a little bit. Excited to get my arms around this cuteness…

 And then I’ll fall happily back asleep I’m sure. That’s where I’m headed now…
Thanks for the sweet prayers and messages. And my dear friend Alex confessed it’s hard not to come see me but, as I told him, he would be very disappointed to come watch me sleep. I marvel that my body’s sleep needs seem insatiable. But I’ve never been one to turn down a good nap when it was an option. Night night with much love…

Update from Pickens 518

Hi there.  This is Jamie with an update on our precious friend.  Let’s just say before I begin, I continue to marvel at her strength and resilience throughout this journey. 

Last Tuesday I offered to drive Jen to her Bible study and instantly knew something was different when she walked to the car.  She looked frail and unsteady.  There was no way Jen was going to miss bible study, however, so despite her condition we championed on.  She was scheduled to lead that day, but on the way there she mentioned she might not be up for the task.  Thankfully the Lord orchestrated our arrival to coindcide with Kay’s so that Jen could ask if she’d take over right there in the foyer of the church.  Throughout Bible study, Jen closed her eyes and listened intently to God’s word being spoken over her.  Or she slept sitting up.  Either way, we made it through with no complications.  On our way home, Dr. Osborne called and wanted to have her blood drawn, so we rerouted and made our way to Baylor. 

Wednesday we headed back to Baylor for Jen’s first round of the new regime of chemo – taxotere.  (Her hemoglobin level wasn’t quite where it needed to be for a new trial that was originally an option, so chemo was the chosen course of treatment).  She was still very weak and her pain level had increased significantly, which was extremely hard to witness.  She went back home, where a few friends gathered for lunch.  Thankfully, Jen felt like eating so we were slightly encouraged.  Then a long nap was in Jen’s future (which is becoming more and more her norm).  

Thursday Jen rallied to go see her grandmother with Hite, and managed to eat a sandwich.  (I realize that’s a random detail, however when your friend has lost approximately 15-20 pounds in the last few weeks, it becomes quite significant.) With her increase in pain, her pain medicine was also increased.  She then slept most of the afternoon. 

Friday, Jen was complaining of significant pain especially with deep breaths. Difficult day for sure.  

Saturday, her pain was about the same as long as she remained inactive.  But by that evening, she began throwing up.  This continued through the night and into Sunday.  

After a phone call to Dr Osborne, prayer,  and much contemplation Scott decided to take Jen to ER.  Jen received fluids for dehydration, anti nausea meds, pain killers and a blood transfusion.  Nice little cocktail, don’t you think?  Well, it worked!  She’s now doing much better and feels good, which is key.  A brain MRI was ordered as was a GI scope to look down her throat and into her stomach – looking for en explanation for the pain and episodic nausea.

Dr. Osborne just came in the room, and I think she did the equivalent of a physician toe touch.  (Pam Merryman you’d be proud!).  She was so excited because Jen’s brain scan showed that her lesion and even any scarring of that lesion were gone.  Thank you, Lord!

We are still waiting on the results of her GI scope, which we expect later today.  In the meantime, rest is crucial for her to regain strength in order to return home.  The best way to show her love and support at this time is your continued prayers – or if you want something tangible, a text, note (6022 Goodwin 75206) or even comment on this blog would bless her too.  We will make sure she hears each one.  Please refrain from visiting so Jen can get back to being Jen as soon as possible.😊

Jen and Scott appreciate all of your prayers, concern, and babysitting more than you know.  I feel like I have a front row seat to the most beautiful concert of generous possible.  What an amazing example you all are of God’s love for us.  Unwavering, unconditional, abundant and ALWAYS available.  Thank you for loving my friends, and for taking care of their  sweet (& spunky) four year old.  Even HE gets to enjoy the cool hospital bed.  

With a grateful heart💙,

Jamie (aka B)

“May your unfailing love be my comfort…” Psalms 119:76

It’s been hard. God’s good. We have hope.

These are the times when I sooo want to update you all with what has transpired in last couple of weeks but can barely keep it straight in my own head or remember all the details myself or remember where we left off. I am writing today on the presumption that ‘something is better than nothing’ and will try to fill in a few details from our pink world. Here are some highlights …

– On Wednesday, 10.28, we met with Dr. Osborne and all agreed it was time to surrender the trial. We had learned that I wasn’t the only one who struggled with the pills and no one ahead of me on the trial was still on the trial. In the back of Scott’s mind, he’d had a hard time surrendering the trial ‘just in case this was the silver bullet that would work if you could just keep the meds down…’ He was more aware than anyone of the daily torture and hated that for me but he was also the most hopeful for it to be effective. But, once Dr. Osborne felt like the quality of life issues were overtaking the possible benefits, he was quick to agree. 

– On Friday, 10.30, we met with the palliative care team at Baylor … Wow. The place little overflowed with love and compassion and care. One nurse introduced herself, told some of her story (including personal loss of her husband and son), and described her job as ‘we are here so you can just breathe…’ and I looked up to see that tears were forming in both of our eyes. Just breathe?! Those were precious words. We spent the next hour learning about palliative care (pain management, child and family services, hospice) with Dr. Casanova listening intently to our needs and concerns. As we talked to him, I had to move seats (from chair to lay down on table) and he specifically commented on my visible level of pain. We discussed some of my other issues (appetite, fatigue, weight loss…) and he asked me to prioritize my needs so we could work on one at a time and not introduce too many variables. It was easy to choose pain management! He immediately increased my pain patch and switched me over from hydrocodone to diladid. Over that weekend, I was still in lots of pain and the days included lots of pills. But, day by day, we are making progress and I am so very encouraged! The pills still make me want lots of sleep but as the pain gets better and my body starts getting accustomed/regulated to the associated fatigue, hopefully I can be more active and, subsequently, more energetic. As it is now, I am pretty limited in how many activities I can (or can’t!) handle.

– Over that weekend (Halloween), we committed to having the hard conversation with Lincoln about the realities of our future. We had told him in many ways but not so directly as to say ‘because of cancer, Mama is most likely going to die.’ And we didn’t try to follow that up with any salve on the wound but just let those painful words hang in the room and let him ask questions (he didn’t…). It seemed to ‘go well’ though we had zero expectations – it ‘went well’ just because we had done what we felt the Lord had directed us (with input from child life specialist) to do, in the spirit of love and truth, for Lincoln’s benefit. 

– The only clues we had about what was happening on the inside was his outward behavior on the night of Halloween … And it was wheel’s off! As in, worst.night.ever. As a wise friend who has parented her kiddos through some hard situations said ‘what can’t come out through words will come out in behavior.’ And I would say that his behavior communicated that he was/is angry and confused and overwhelmed. But the ‘tiger chef’ sure looked cute didn’t he….?!  

His fun ended shortly after this moment and he was in bed by 6 because he lost the privilege (after yelling, screaming, spitting and blowing snot out of his nose!) of any more fun!

– In sharp contrast, the very next day, Sunday, was one of the sweetest days in the life of our family. After church, Scott crawled in the backseat of the car with Lincoln and put his arm around him. He said ‘Lincoln we had to give you some hard news yesterday…’ At this point, Mama interjected and said ‘what was the hard news?’ And Lincoln said, ‘that Mama us going to die…’ Scott picked it up so sweetly and said, ‘we know this is hard but there’s something else we need you to know … We need to know that God loves you, God can be trusted and He doesn’t make mistakes. And Daddy is going to take care of you. And Mama is going to take care of you as long as she can…’ And before Scott could finish these thoughts it was sooo cute because Lincoln started naming all of his ‘aunts’ and grandparents and our friends who would take care of him. They have given him a great deal of confidence that they will love him and take care of him. Ummm, is that not such a precious gift to all of us?!

– This past week, we began discussions about ‘what’s next?’ to get back to fighting cancer and not just manage side effects. We’ve explored 2 chemo-based options. One is a trial and the other is a standard of care drug (taxotere) that is usually used for lung cancer. Though Dr Osborne even reached out to the CEO on my behalf to request access to this trial, we don’t think I will qualify – one of my liver mets is above the maximum limit of 7cm (mine was 7.4cm as of last scan) and also because the HGB (red blood cells) need to be 9. And in recent weeks mine have been dropping below 9. They were 8.6 on Wednesday when I was at my appointment and we suggested I go back for blood work on Friday to see which direction it was going – it was going the wrong direction and down to 8.5. Given her assumption that the cancer is now in my bone marrow and my counts are dropping we are moving forward with the standard of care drug. It is administered every 3 weeks starting this Wednesday at 830a. 

Those are the highlights I can come up with right now. Not sure that ‘highlights’ is the best description for anything related to cancer but, in between the small font, I want to make sure you picked up that we have made some slow but noticeable improvement in my pain management plan – and that is encouraging!  There are still several other issues but it’s super encouraging to see progress with pain management and specific answers to prayers … So, again, thank you for praying! And caring. And rejoicing in good news. And concern for Lincoln. And loving our family.

I am too tired to edit so I apologize if you have to play a word game or two to interpret what I am trying to say or the chronology of events. Let me summarize: it’s been hard but He’s been good and we have hope💗