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.


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.


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.


Happy Thanksgiving to you and your family.

And Happy Homegiving to the Clouse house.

With a grateful heart,


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.


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).


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.)


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).


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.


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.


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💗

Sometimes no news is good news…

… And other times, unfortunately, it means there’s no good news. And while I’m not scared to share the hard it’s just that everything has become rather hard. Including writing updates.

Yesterday, we decided to take me off the trial. I never had developed a consistent  routine that kept the nausea away though we sure did give it a go. We’ve also learned that the ‘cohort’ (trial group) ahead of me on a lower dosage doesn’t have any remaining women in the study either – not sure if that’s because of toxicity problems like I’ve had or disease progression but apparently I’m not the only one who has struggled. Dr O was conclusive and decisive yesterday and I was glad – it had been a hard decision for me to make but also a good opportunity to learn how important ‘quality of life’ is for me as a factor in our treatment plan.

But we don’t necessarily think the trial medicines were the only culprit as to why I feel so poorly – but at least one culprit we could control. We all realize more and more that while we knew (intellectually) that I was sick for the last (almost) 11 months now we are experiencing the sickness. I have pretty intense back pain. To be comfortable I pretty much rotate all night long – I have imagined I look a bit like a pig on one of those roaster spits because all through the night or my naps I just roll 90 degrees and keep rolling – my ribs hurt, then my back hurts, then my other ribs hurt and then it hurts to lay on my stomach. So I rotate again. And again. And again. And after a few rotations I am usually back to pain medication. Right now we are working on the best pain management plan. I’m  wearing a pain management patch that gives ongoing relief for 3 days at a time … And I love the ease and simplicity of it. And we are using hydrocodone to take the edge off the intensity of the pain.

And while I may feel like a pig on a spit (isn’t that what that’s called?) I no longer eat like one … Where o where has my appetite gone?!  I don’t recognize myself at meal times. Who is the blond girl who never eats and lately has declined Starbucks deliveries?! I don’t know her.

And for the first time in over 25 years of on/off struggles with body image, over/under eating, over exercising, I am losing weight but not excited about it. I can see the effects on my energy level and GI system and both need a much healthier intake – but that’s challenging when nothing sounds good. And I know I need physical activity to help offset the fatigue but the most basic of exercises I’ve loved for years and years all now seem like impossible heroics well out of my reach.

My energy level is one of the biggest concerns in my overall wellbeing and my red blood cells have been low and getting lower over the last few weeks. Dr. O expressed this week that she’s concerned that the cancer has traveled through my bones to my bone marrow so that, using her words, ‘we have a factory problem because I’m afraid the bone marrow is no longer  able to produce healthy blood cells for you…’

I shared with Scott and friends yesterday that my body is very weary though I feel sweetly sustained emotionally and spiritually. That’s not to say there aren’t tears but by Gods grace there’s not despair or fear. And the best way I’ve found to describe it as that I simply don’t recognize myself in this life – the limited appetite, limited energy, limited schedule and lots of medicine and sleep. My life has never looked anything like this before. It’s not depressing it’s just different. When I feel this weak I am quite happy with a limited schedule and naps! And also quite delighted in simple sweet moments of friends that visit (not uncommon for me to wake to evidence of their love even though I never heard them enter…) and Lincoln consistently running too hard and too fast and jumping on me (ouch!) when he gets home because he is so excited to tell me about what happened at a friends house. He knows Mama is sick but has connected the dots that that’s why he ha so many play dates. This week,  he found me in the bathroom in the middle of the night and said ‘are you trying to throw up again? … I’ll sit here and wait with you…’ If that’s not a 4yo-go-to-bed-stall-tactic-of-desperate-measures then I don’t know what is!  He, thankfully, thinks all these fun play dates are just because he has the best social calendar and best friends … And both are true!

As is this. And even more so…

2 Corinthians 4:7 But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; 8 we are afflicted in every way, but not crushed; perplexed, but not despairing; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 11 For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. 12 So death works in us, but life in you. 16 Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. 17 For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18 while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

This is hard. And I am in pain. But my hope extends well beyond the temporal that I can see (and feel) to the promises of Jesus to sustain me in this life and welcome me into His presence and joy in the next.

Specifics for prayer, please:

– we meet with the palliative care doctor tomorrow to get, Lord willing, a better understanding of some end of life issues and resources 

– for Scott and Lincoln as the reality of life as a single dad is coming more clearly into focus as my limitations increase

– for my amazing, generous, kind, sacrificial family and friends who are grieving as they watch their daughter/friend/granddaughter struggle (I hadn’t cried through this whole entry but this one started the tears…)

– we plan to sit down with Lincoln this weekend as a family and prepare his mind and heart (as much as is possible at 4) for the hard days ahead for him and us

– a cancer-fighting plan (most likely back to chemo next) that will retard some of the cancer growth and therefore some of the pain

– pain management so that I can enjoy the people and many gifts the Lord has given to me for as long as He grants me life and breath

Thanks for your care, concern and prayers. All of you who read and pray and write and care are part of our sweet story.

Body aches. Heart full.

I just said goodbye to Gigi and Lincoln and Scott as they leave to take Gigi to the airport. Uncle Hite and Aunt CC left earlier this morning. And the Washingtons are already home. As I said goodbye and laid alone poolside overlooking absolutely gorgeous beach I found my heart and eyes fill. I am so very blessed. So very blessed. I love these people I just went on vacation with. I love this place that Id never visited before (and though I will resist the 30A stickers I’ve found slightly obnoxious I now understand the obsession!). I loved hearing Linc tell me I’m the ‘best mom ever’ because ‘this was the funnest day ever.’ I love celebrating Gods grace and kindness to him because I am definitely not the best mom ever. In fact the 3 aunts that were here spent more time taking care of him than I did. I marvel at the ocean. How big and how wide and how deep and what a picture of the vastness of God I can’t understand.

Somehow throwing up my medicine (again yesterday but keeping it down the other days) and skipping dinners because my back hurt too badly (silly tired weary bones) and missing most morning activities because I was trying to recover from the night (terrible night sweats with temps up to 101.9) don’t really matter when you are surrounded by the glory of creation and even more so when surrounded by people you dearly love.

On the way to the beach this morning, Lincoln said ‘God is good because he lets everyone go to the beach…’ and I explained that yes God would love for everyone to see His beaches but not all can afford it (‘what does afford mean?’) so that’s all the more reason that we are thankful that He let us come (thanks to the Harrells) and be with our friends. Needless to say, this girl doesn’t take this vacation for granted. I am grateful. 

I don’t like our trip being truncated by the necessity of tomorrow’s doctor’s appointments but even while I’ve been here I’ve felt loved by our medical team.

In Bible study (that I missed on Tuesday) we were reading the rawness of feelings from Ps 77. And the antidote for despair and depression was his choosing to remember and meditate on the works of the Lord. He then makes several water references that seem to be flashbacks to Exodus 15 and the parting of the Red Sea.

I was thinking of this as I lay by the ocean yesterday and couldn’t imagine how the Israelites ran headlong toward the sea not knowing if it would open – but yet trusting the Lord to deliver them. I thought about how if the Sea had parted 200 yards before they arrived it wouldn’t require the same faith. I admire them. And I thought of how I feel like people give me too much credit for joy and peace and grace in this season but that it’s truly HIM that has opened the seas and provided a smooth path in the face of death. And I’ve seen Him provide supernatural peace and grace. And until I was willing to step all the way up to the waters edge (or He walked me to the edge in my case)  I couldn’t experience the sweetness of this ‘deliverance’ into joy that completely overwhelms me. 

I feel as ‘sick’ as I’ve ever felt – my bones are letting me know, my bowels don’t like all the pain meds, my body is fickle about the pills, the boob that was so badly inflamed seems to show signs of a recurrence and I’m on  continual pain meds (the pain patch … ooh la la!). But my heart is full. I feel loved and secure and hopeful (in Lord regardless of outcome). And, trust me, this isn’t me anymore than it was Moses that parted the Red Sea. It is me in awe of a God who knows all things and does all things and loves all people. And I am finding myself even more willing and desiring to trust Him because of the joy of watching Him do ‘abundantly above all that I could ask or imagine.’

And, lastly, can’t go to the beach without a few obligatory fun beach pics. Here are just a few of my favs… 



Better. And off to the Beach!

Jamie picked me up yesterday at 7:30 and we found Nancy in a reserved conference room with her notepad to document my every move by the minute (8:26 Zofran, 8:32 1/3 bagel…). And just in case there was ‘an incident’ she had this…. 

 It definitely crossed my mind to heave a couple of times but I didn’t! And it wasn’t fun but it’s done. And I just did it again, without her supervision, on our flight to Florida:) Maybe my body will become acquainted with these medicines but in the meantime I feel the power of your prayers to keep them down and keep the medicine in my body.

And we’re off… In case you don’t know, that’s Lincoln – and he doesn’t like to have his picture taken.

We left early this morning headed to Watercolor thanks to generous friends who offered their house. Aunt Gigi is traveling with us now and our dear friends the Washingtons are also en route. Tomorrow, Aunt CC and Uncle Hite will join us. 

I think the beach is exactly what I need – peace, beauty, fun with friends, and a reminder of how very big our God is. And near and close at the same time.

Love to all.

El Sombrero

I introduced you to my ‘career’ at Six Flags earlier this week. I started at the ‘peak’ of my career as assistant foreman but today we shall consider my humble beginnings at age 16. After I got hired there were 2 days of orientation. At the end of the second day we were asked to line up. I had no idea that these were the lines for ride assignments. And as a rather type-A firstborn that is more likely to screw up by being overly aggressive than overly passive, this was the wrong day to try a more passive and laid back approach. I was the last person in line and when it was my turn there was only one ride left – El Sombrero. For those of you who are familiar with the park, it is in Mexico and the spinning sombrero. It is far from exciting. Or adventurous. And, the team at El Sombrero (inside the park, it’s shortened name was ‘El Hat’) also worked at Casa Magnetica. Anyone else besides Pam Merryman remember this ‘ride’?! It actually wasn’t a ride but it was an ‘experience’ with a tour guide. And I was the tour guide. For an hour at a time, I took park guests through the ‘leaning house’ where balls and water ran uphill. Oh yes it did. And I could wow and dazzle the guests with these little tricks and my memorized speech. ‘Buenes Dias amigos and welcome to Casa Magnetica – the house of Don Juan…’ Are you impressed yet?! I wasn’t either. So I worked at the least preferred ride in the park and also had to do guided tours with memorized speech. Glamorous huh? The upside of Casa Magnetica was that it was shaded and air-conditioned. And at El Sombrero, at the time, there was no shade and it was sooo hot that on one of my first days I rested my arm on the rail (which was technically not allowed) and it burned my arm. So, every day for 8 hours, I alternated between Casa Magnetica and loading children on a ride that goes round and round while it goes up and down – in short, it goes nowhere. Except in circles. With lots of ups and downs. Until you get off.

And again, that serves as a great visual for our week – round and round and up and down and not sure if we are getting anywhere or not.

Yesterday, we went in to start the trial and passed all the blood work tests and the EKG. Then Scott, Mama and another 4 friends sat in a conference room with Nancy while she went line by line explaining the protocol for taking the medicine. For those of you have been with us for awhile you probably recall that pill taking isn’t my strength. So not only did Nancy emphatically review the rules (I think ‘lecture’ is a better description) she also looked around room and it was as if she was asking these ‘witnesses’ to help me ‘keep my vows.’ They nodded emphatically and enjoyed lecturing me alongside her. And then I took the pills. 

And then I threw up. It was less than :20 after I’d taken the meds and Dr. Osborne amused Nancy and I because she didn’t approve of our ‘throw up protocol.’ She wanted us to be able to tell her if the pills were thrown up or not – and I was more interested in flushing than inspecting!

Since my blood work had already shown I was dehydrated and now Id thrown up, I was given fluids and anti nausea meds along with my monthly infusion of a bone strengthener. Then I passed the EKG and was sufficiently exhausted.

We started at it again this morning. Dr O wanted me to also take anti nausea meds. So I got up around 7:15 and got my refrigerated meds and anti nausea meds. I took all and headed back to bed. Just minutes later, Scott walked over to kiss me goodbye and couldn’t get out of my way fast enough as I raced back to the bathroom. And up it came. And I don’t know exactly why or what happened but my throat was on fire so it was unpleasant on top of unpleasant. 

Again, friends rallied and took Linc to school, made his lunch, rubbed my feet so I could sleep, ran errands, folded laundry, made calls I needed to make, picked Linc up from school and brought him to see me before taking him for the night, brought anti acid meds, and checked on me. And that was just one day of all the love and care we receive. Gigi also scared me to death because I woke up mid morning to race to bathroom again and there she was – totally unexpected. In summary, my friends are absolutely amazing and a little creepy too:) I had sent friends a text saying I wasn’t feeling good and she was sad and ‘just had to check on me’ so had left school to come see me quickly. But I was sound asleep until needed to throw up again so when I saw her it scared me out of my skin! At least a little levity was interspersed with lots of love.

And, like El Sombrero, we have another round of meds tomorrow but hopefully without so many ups and downs. The drug company asked Nancy to request that I come and take the drugs, per the protocol (rules about when to eat, water consumption, sitting up, anti nausea meds….), at the clinic. So we will see if I do better tomorrow – we have some adjustments planned and are hopeful. She’s mentioned that the drug company is anxious to see if I can tolerate it or, if not, to backfill my slot. I totally understand but … Pressure! Who knew taking 4 little pills could be so stressful?!

Needless to say, lots of ups and downs over the last 36 hours. We are praying for the next 36 to be far less eventful. And would cover your prayers that I can tolerate the medicines. Or trust Lord if this is His plan to direct me to another course of action.

Much love and many thanks, amigos💗