Dear Taxotere…

I have to ask. Do you hurt the cancer as much as you hurt me? I sure hope so because you do quite the number on me. I hate the way you make me feel after treatment. I hate throwing up. I hate begging for pain meds and being disheartened when they aren’t enough. I hate tossing and turning in my bed begging the Lord for sleep. It’s sad for my little boy to only see me horizontally for 2 days. So, after all that, I always lay there wondering if you are doing as much against the cancer as you are against me?

I see how you and your chemotherapy friends put people in quite an emotional and practical ‘pickle’ that few people understand. The topic of quitting treatment is uncomfortable to all. Including me. But this past week, in the 2 days post chemo, I understand why friends that have gone before me have surrendered and sent up the white flag. It’s quite difficult to knowingly subject yourself to the pain of drugs like you. You go in our veins for a short hour totally painlessly and then you wreak total havoc on our bodies for 2 days straight and then unpredictably in the following weeks. 

You don’t do much for our quality of life and allowing us to enjoy the people and things we love. You make us isolate and withdraw just because our brains and bodies don’t have the ability to interact. You keep us home instead of out enjoying sunshine and weather and people and events we would enjoy. You keep me from  the privileges of taking care of my family with even the most basics of housekeeping and laundry. You make me watch the world through the window instead of engaging with it firsthand. You keep me from being able to lead bible study and go to lunches and go for walks and greet Scott and Lincoln at the door when they get home.

And what’s the point of extending life if you can’t enjoy it?  What’s the point of giving me more time if I can’t enjoy the people I love and want to be with?

And then, after all those thoughts and questions, you let up and give me a reprieve. And then I am so thankful to the Lord for His relief that I am almost giddy with excitement about being at church yesterday and being with friends for the Super Bowl. Taxotere, you tortute me and then the Lord uses you teach me how to appreciate the little things in life that I have often taken for granted: standing up for :10 to fold laundry, sitting on the couch with Scott to watch the debates instead of laying in the bed in a separate room without even wanting the noise of the television on, mere interest in food even if I can’t eat very much, and desire to see friends even if they see the same site over and over (me in my pajamas on the couch!).

You are not for the faint hearted, Taxotere. As Scott and I discussed, we understand more clearly now why Dr. O asks so many questions about how I feel and then asks me ‘are you sure about this decision before I approve your chemo? I hate beating you up like this…’

Yes, you beat me up. And make me miserable. And we just hope and pray and thank the Lord for good scan results that indicate the cancer we hate may actually hate you as badly as I do. 

This wasn’t the first time you’ve done this to me but it was definitely the worst. And I don’t want to live with a spirit of fear but I have had thoughts of dreading this happening again on February 25-26 after chemo on the 24th. But next time I will be better prepared to ask my people to be extra girded in prayer that you, a means of both good and evil, will be strengthened to do war against the cancer but with less war against me. 

Taxotere, I need to remind you that you are subject to the will of my God. He doesn’t need you to heal me but He is more than able to use the miracles and minds of medicine if He so chooses. He hates cancer because it brings death and He loves life. He enables men and women to use their intellect to fight diseases such as this with medicine. And He enables it to work because He made the body and holds all things together. He hates the way I feel in this broken world and broken body but loves me so much and holds me close during the hours of torment. He never leaves my bedside. And He sees and hears each of my cries for help. Thankfully, I never feel alone. And He sends dear friends to text or call or deliver food or check in just when depression wants to knock at my heart. And my God is creating in Scott the most amazing semi-single dad with confidence and connection with Lincoln and it’s a sheer joy to watch – or listen to if I’m just hanging on horizontally in the other room. My God is taking care of my family. My God is using your destructive powers to destroy cancer cells while sustaining me. My God is able to bring good and glory and sweetness even in the midst of a hard season and even in the midst of a horrible couple of days. 

So, Taxotere, while we have a love/hate relationship and I continue you as long as the Lord allows, I also want you to know that I’m not scared to break up with you if it’s too hard on me and my family. I don’t want to be controlled by you or by fear of you because I know my God is able to sustain me with or without you and He is able to grant me peace and joy in life as well as in the face of death.

If the Lord wills, I will see you again in 16 days and I will be ready – covered in prayer and protected by the Lords providence. In the meantime, can you please lighten up on my breasties while putting the hurt on their cancer? You’re a meanie some days!

Goodbye for now. And since you’ve exhausted my body I will go back to my happy nap (without pain) with the confidence that the Lord holds me and my people.

More good news! Thankful thankful thankful…

I haven’t felt so good lately and as a result even the most regular tasks seem a bit daunting – even updating the blog. And that’s especially pathetic considering I do it on my iPhone with dictation. It’s not like it’s hard for me to talk!

I had scans again on Thursday – of my abdomen and pelvis and chest as well as my neck. It was super cute and should have been a good sign that when Dr. Osborne texted me to ask if I could talk she had Christina in the room with her too. Apparently Dr O wouldn’t let Christina call without her and they waited to call until they could both be in the room and share the good news. 

The overall report from the radiologist says “stable with moderate improvement.”  Considering we would take stable as really good news it was actually wonderful news to hear ‘stable  plus improvement.’ I’m crying as I say this. I see the kindness of our God in so many ways. My liver shows mixed results with some lesions that are bigger but some that are smaller. And the fluid that was around my liver is gone. My lungs are stable and the lymph nodes in my sternum and diaphragm are a mixed bag of growth and recession. We are thrilled! As the Lord sweetly ordained it, Scott had come home mid-day on Friday to pick me up to have lunch with him and his partner and employees so we were together to hear the good news. Those of you that know Scott well know that he is not even kind-of-sort-of-or-even-slightly-dramatic-or-super-expressive! He is my steady. But he was precious in his response of thanks to our God and a kiss for me. As Job talks about receiving good from the hand of the Lord as well as the bad it seems that we are so accustomed to accepting the bad that we were shocked and delighted with the good encouraging news. 

As a result, we will stay the course with this chemotherapy of Taxotere every three weeks. As I’ve mentioned before using Dr. Osborne’s highway analogy, she expects that my cancer will eventually outsmart this drug and work its way around on an alternate path but, for now, we celebrate that the Lord has blessed me with more time with those I love on earth. 

And now I’m bawling like a baby as I record this update for you all. Have I mentioned that our God is truly good, kind and always faithful? He has sustained us with bad news and then encourages us with good news. 

On a day to day basis, I feel like I have more hard days than good days. Some days I’m just exhausted and other days I’m exhausted and also feel pretty crummy. Today it is both. I haven’t thrown up in a long time but, as I’ve shared before, sometimes it’s hard without an appetite to take medicine and, many days, not very much sounds good. Especially first thing in the morning. Today I may have overindulged with a shake from Harry’s as my only sustenance (only thing that sounded good) and my handful of medicines didn’t consider that adequate nutrition. So I took a handful of meds and before too long I was back in a familiar place over the toilet. Oh well. You win some and you lose (literally!) some.

Our little family is in a sweet season. Lincoln can go from a firecracker to a cuddle bug in less than three seconds. Often, when he comes home with Scott or from a play date, he finds me laying down which makes me a bit sad for his reality but he always runs to me and crawls up to cuddle with me on the couch or in bed.  And in God’s kindness he recently told some friends of mine (his teachers at Chapel School) that what he loves about me is that I ‘play and build things with him.’ My friend shared that with me and it is a gift to know that his only thoughts of me aren’t as being sick or laying down. He also told the same friends that he loves his daddy because ‘he makes me eggs and the very best cinnamon toast.’ Adorable. Needless to say, his daddy takes on a lot of my jobs and is doing them very well. I am so thankful for such a fine father for the boy I love so much.

Thank you for following our journey and praying for us and serving us in countless ways. We are a blessed family. May the riches of the Lord’s blessings be yours today as well.

 

 

 

Happy News Year…

The Clouses definitely send love and wishes for a Happy New Year. And, in addition, it’s fun to share Happy News in a new year.

I had chemo again yesterday (every 3 weeks). Chemo seems to be effectively stabilizing the tumor activity as far as we can tell with the ‘tumor markers’ they measure from my blood. I’ve recently learned that ‘healthy people’ would have a number between 1-6 and when I was very first diagnosed (02/2012) my number was 1.2. Mine is ‘down’ from mid 40s to mid 30s and has been stable over last couple of weeks. In our highly defensive strategy with the simple goal of keeping cancer at bay as long as we can, this is a win. It’s not necessarily a game changer in the big picture of my prognosis but until my cancer figures out how to work around this plan of attack we stay the course because liver numbers are better/stable and I tolerate the chemo pretty well. I have intermittent, unexplained and often hard-to-pinpoint abdominal pain. At times (unfortunately one of those times was Christmas Day…) that means I am horizontal with my eye on the clock planning for another pain pill. Thankfully, that’s not every day. My more common everyday-burden is fatigue. I become winded (to the point of needing to sit down immediately…) with just one flight of stairs or any quick burst of effort. I’m pretty much in complete disbelief that I could have ever possibly run a marathon. Or a mile. Or around the block. Jennifer Lewis who?

The other good news around here is probably another reason that I could cause some of you to struggle with jealousy. Especially if you go to Watermark. Or Northpark. Or pretty much anywhere in Dallas. Can you appreciate the greatness of this signed paperwork? 

I am soon to be the proud and unashamed owner of a handicap parking pass. While many of you had your eyes on PowerBall last night  (including Clouses who were easily persuaded to join the office pool) I feel like I had my own little ‘jackpot’ moment when those signed papers were in my hand. Friends will line up begging the Powerball peeps for their new money and I think my friends may line up asking for a ride to church. Don’t blame em. Come on!

Our Christmas was really sweet. Lots of time together with our little family but also enjoyed sweet time with all of Lincolns grandparents too. Thanks to the friends who decorated our tree for us again this year we also discovered, on Christmas morning, that Lincoln had also hit the jackpot. And that was very helpful for Scott and I since Scott had said, as he cooked breakfast, “Babe, did we get Lincoln anything?” I had to rack my brain to tell him what (chemo brain isn’t so sharp either) and it certainly wasn’t much but based on the generous provisions of our friends, he wouldn’t have even noticed if we hadn’t wrapped (or should clarify ‘if Sterling hadn’t wrapped’ because I also had a last minute wrapping fairy after I had declined other help thinking I could do it … not so much) anything. Again, another way our friends bless and care for us in unexpected ways.

As we talked to Dr. Osborne yesterday, she thinks it is time for another CT scan in the next few weeks. And we find it interesting (she agrees)that now my left breast (not the ‘problem girl’) shows noticeable redness that reminds us of the inflammatory breast cancer I most recently had in the right breast. And for those of you who have been reading and walking and praying along with us for a while, can you appreciate my big girl vocabulary in using breast instead of boob? It still feels awkward. I am starting to think it always will.

Here’s another ‘action shot’ from yesterday. We’ve given up on my tired veins to give blood so now each time I go in I have to bug our ever-helpful nurse to take blood from my port (I love and will miss the girls in the lab but they are only trained to take it from veins). She’s a tall girl and both Jamie and I squealed (as awkwardly as we’ve done since high school) when she raised me so high. Who knew this table could be a ride?   You need to know that Christina is almost 6′ (unlike Dr. Osborne who is so petite that she wears children’s shoes) to appreciate that at this point I was towering over Jamie and Amy.

The bald pics remind me that my friend Becky hooked me up by restyling my old wig and I think our Tuesday Bible study girls would agree (since they’ve only ones who have seen it in public yet) that it is soooo cool. Human hair and well colored and cut and if I didn’t reach back to pull hair out of my eyes and inadvertently pull it off my head while in Bible study I think they would agree that it looked completely natural.

I debuted it the night before for Scott and Lincoln. Scott doesn’t care if I wear it or not but continues just to say “that’s almost creepy” because it looks so real. On the other hand, expecting Lincoln would think it was cool at the least, his first words were “I hate it.” Pretty strong words from a four-year-old. Too bad he is short on opinions like his Mama. He went on to elaborate and say “I like it when people ask you why you were bald.” I thought this might be some deep thought about wanting us to live in the honesty of our reality or that he liked me bald or that maybe it explained some things that he wanted explained. Nope. It all came back to him. He said “I like it when they ask because you can tell them that I shaved it off.”

   True that. Love this boy.
Scott, Linc and I have started grief counseling for him. Hard reality but thankful for the finances to do it and friends like the Monroes who connected us with counselors who focus on families in these situations. And it’s a bonus that it is Theraplay so Linc loves it! Scott and I are learning tons too. Would would cover your prayers for this as well.

And I would love continued prayers for Scott. He is currently making some pretty big changes in his schedule to be more available for me and take on more of the primary caregiving for Lincoln. Taking him to school and preparing his breakfast and getting him dressed and a day or two  away from work so that we can be together as a family. I know that’s not easy on him or his partner or Redo (their construction company) but I am thankful for all and confident in the Lords provision for our family. As I told Scott the other day, and I get tears as I start to type, I’m confident in the Lords provision of Scott as my husband through realities we would never have ever chosen and I am also confident in his ability to be both mom and dad to Lincoln. Mom is not a job he ever intended to backfill but I see that the Lord has ordained him for these roles and he is faithfully walking in them. I would covet your prayers for continued strength for him, confidence in his roles and the gift he is to us, and for the Lord to bless Redo’s labors and work even without him there all the time.

It’s been sweet of several of you to ask for an update. This is been slower than I intended. I really wanted to include some sweet pictures of our Christmas but my pictures from the couch aren’t so impressive. Thankfully, Scott and my mom saved the day and I don’t think it ever occurred to Lincoln that his mom was either miserable or drugged for most of Christmas Day. Again, as we experience so often, grace upon grace.

This is sent with much love and many thanks for all the ways your prayers and efforts and service to our family continue to sustain us.

Our God is good. All the time. And we trust Him.

Christmas Gifts

written by: Jamie Kraus

Hi everyone.  It’s Jamie again reporting on Jen’s behalf.  (I so wish I had one of those cool caricatures to let you know it’s me writing today {Hite, can you help me out?}) .                          IMG_2297.png

Today was a good day at the hospital.  Yay!  After experiencing some really hard days in November, it seems that we are increasingly more appreciative of the good ones.

In light of the Christmas season, I thought I would list the ‘gifts’ that the Lord blessed Jen with today.

  1. Jen started the day off with a chest X-ray due to her shortness of breath.  Thankfully it was all clear.  Gift #1.
  2. Jen’s labs showed that her liver tumor markers are down, which is also good news.  (We have to remind ourselves often that the numbers being ‘down’ are all relative when they are in the 40s and should be <6, but at least she’s trending in the right direction).  Gift #2
  3. Jen’s white blood cell count was down so she is fighting anemia (other possible explanation for shortness of breath).  She may need blood in a week or so if her energy (which is the greatest issue) doesn’t improve.  But TODAY she did not need a transfusion.  Gift #3
  4. Dr. Osborne opened up Jen’s exam gown today and exclaimed ‘AWESOME’  when looking at the ‘girls’.  There had been some evidence of inflammatory breast cancer, however, that appears to be decreasing and we hope that means chemo is working.  (Let’s be honest, ladies.  What girl doesn’t want that reaction when opening her gown?)  Gift #4 (Oh & Gift #5 I guess too).
  5. The fact that Angela took a picture of the aforementioned exposure and I am not posting that picture.   Gift #6
  6. Lastly, the nurse who had to access Jen’s belly for a shot after chemo immediately said, ‘You have no fat!’.  We both grinned at each other and our former fatty selves gave each other an imaginary high five and a wink.  And although Jen would not recommend cancer as a weight loss strategy, she might as well enjoy those skinny abs if she’s gonna spend Christmas Eve’s Eve in the hospital for chemo.  Gift #7

Jen and I both agreed that today’s post would be short, but I know she would want to continue to express her gratitude for your kindness, your prayers, your errand running, your cards (both the ones she received and those you designed, addressed with her and stamped/stuffed for her to send to many of y’all), your decorating, your selling, your babysitting, your counseling, and your friendship.  (She would have used many more paragraphs to say the same thing. You’re welcome).

For now, the course of treatment will remain the same.  She will have chemo again in 3 weeks, and we are praying the numbers continue to go in her favor.  The side effects seem to have waned a bit, which is fantastic.  Jen has lost her hair, however, but found some snazzy hats to up her style.  I wasn’t surprised when I showed up this morning and she was in head to toe pink.  I couldn’t resist taking a pic.

For those that really know Jen, she loves her some pink almost as much as she loves her new flat tummy.

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It takes a special person to pull off a free pink crochet beanie from a basket in the waiting room.  Just in case you’re wondering.

As 2015 comes to an end, it seems natural to look back and reflect on the past year.  And wow, what a year it has been.  But the Lord has shown us favor time after time in unexpected ways with unexpected gifts.  Jen would be the first to highlight not only those gifts, but also/especially the Giver of those gifts.

I think it would be fair to say that the Clouse family wishes you a new year filled with knowing and experiencing the ULTIMATE gift: a relationship with Jesus Christ.

Merry Christmas with love,

Jamie (aka B)

 

Y’all. He hears. He answers.

Psalm 40:1-3

I waited patiently for the Lord;
he inclined to me and heard my cry.2 He drew me up from the pit of destruction,  
out of the miry bog and set my feet upon a rock, making my steps secure. 3 He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord.
I hope as you read this, after B’s reports from ‘the pit’ (not of destruction but of heavy pain meds and lots of pain and endless throwing up questions and few answers …) that this read as ‘a new song in my mouth … A song of praise to our God.’ Because I am for SURE singing praises and gratitude. It has been a rough few weeks and got rougher instead of better in the hospital. For 9 days! What?! Before cancer I had never spent night in a hospital except when Lincoln was born so NINE DAYS?! And assuming each day that surely I was going home but at same time I was scared to death to go home because, well, actually I felt like death. When doctors would say ‘I think you need to stay until we get this resolved …’ I would be sad for Lincoln but relieved for myself. As people have said ‘I know you were soooo glad to be out of hospital…’ Ive responded the same each time: in that much pain I was happy to stay and have access to meds and help and I was far from concerned about anything I was missing in the outside world. My closest friends have since confessed that they were hovering because they were so heavy hearted and wanted to help – but also because they were afraid the next blog entry might be details about my service. I should have told them much sooner that I never feared for my life but I admit that I would have welcomed death if things didn’t improve. Those are serious words but this was moments of serious pain. And throwing up all day is for the birds. As if anyone needed that reminder or news flash.

But I marvel at the doctors’ care (both my oncologist who I always rave about and our new amazinf palliative care doctor, Cassanova) as they worked together for the source of the problems and solutions. And both daily set by my bedside with great concern and compassion. And I marvel at my mom wanting to spend every night with me (I told her she needed her own sleep at her age and she couldn’t hog the lovely coveted pullout couch but she for sure wanted to not miss a throw up or escort to potty … Poor Mama…) and my friends who I literally woke up to at my bedside and tucked me in every night. They were right to demand I not have visitors because who wants an audience for throw up and pushing the nurse call bottom to ask for more IV pain meds so I could go back to sleep…?! As many of you have noted and said, and I agree, yes, my friends are amazing. B even writes the blogs (hilariously well I might add!) for me. She has yet to say ‘no’ to a single request and she and Jenn and Molly and Amy and Angela can now grab the throw up bags like a ol’ Wild West cowboy drawing his six-shooter out of his holster. The first day that we were in the ER it was comical to watch them get one and unravel it and give it to me – and then give me another and another – but by the end of the stay they had mastered it.

I don’t know why or how my body got the ‘we are going to be well now’ memo but it did … And flipped a switch on Sunday! On Saturday night I tried just a bite or two of salad and went straight to couch with 2 dilaudid (5-7x strength of hydrocodone) to bear the stomach pain. And my tummy had been that fickle and painful since Thanksgiving. I had quit throwing up but maybe not eating for 6ish weeks and then eating Thanksgiving lunch as your first full meal was, shall we say, overkill for the stomach?! But somehow and someway and (maybe because I laid on couch on Saturday night and begged the Lord to be better?!) but on Sunday I ate like a normal person and felt like one too! I practically seem hyper compared to my energy level and capacity over the last few weeks. And it is wonderful. 

Huge hugs and thanks to all who prayed for us during the hospital stay and beyond. He has heard our cries and answered. And I sincerely pray that others can see the provision of our God for me and learn to trust His goodness for themselves. I recently learned that the Lord used the blog and our story to bring a friend’s friend (if you are Lisa’s friend I am celebrating you!) to saving faith in Jesus and acceptance of His gift of grace. And I was overcome with joy. I couldn’t agree more with the message of Luke 15 … Cancer is worth it for just one soul to be redeemed and know the grace of my Savior. Yes it’s a high price to pay but comparing the rest of my days to her eternity leads to a pretty simple comclusion. And, for me, it is truly what John said (1:14) ‘… blessings one upon another…’

Linc continues to keep us laughing and persevering. I am losing my hair again. And, yesterday, as he was awake far too early for my taste and cuddling in bed listening to an iPod that one of my ‘pink ladies’ pre-loaded for me, he said, “Mama, your hair is everywhere … that’s disgusting … why did you make your hair blonde and fall out?” Little man, it ain’t my hair color. That be the chemo. But my friend Becky trimmed it all up again and I’m sure a shave is in my near future. This chemo (taxotere) is so hard on hair that they can tell you to the day when it will fall out … And I woke up on that day to wads of hair coming out in my fingers. Lovely. Thankfully, I’m over hair. 

Lastly, as I think about Ps 40 and the joy that I have along with gratitude for feeling so much better I wanted to share the words of a long-time favorite hymn. Because, truly, whether it is because I was naive about how sick I was or whether the Lord just sustained my mind relative to not fearing death, He made it possible for me to sincerely say ‘it is well with my soul…’ And I think I would be foolish to give the impression that He is good because I feel better. That’s not true. It’s far simpler…

He is good. All the time.

And it is well with my soul… As so beautifully written, out of his own heartache, in this hymn by Horatio Spafford.

1. When peace, like a river, attendeth my way, 

when sorrows like sea billows roll; 

whatever my lot, thou hast taught me to say, 

It is well, it is well with my soul. 

Refrain: 

It is well with my soul, 

it is well, it is well with my soul.

2. Though Satan should buffet, though trials should come, 

let this blest assurance control, 

that Christ has regarded my helpless estate, 

and hath shed his own blood for my soul.

3. My sin, oh, the bliss of this glorious thought! 

My sin, not in part but the whole, 

is nailed to the cross, and I bear it no more, 

praise the Lord, praise the Lord, O my soul.

4. And, Lord, haste the day when my faith shall be sight, 

the clouds be rolled back as a scroll; 

the trump shall resound, and the Lord shall descend, 

even so, it is well with my soul.

Thanks for reading and bringing meals and organizing Lincs closet and my new iPod and bringing green throw up bags and loving us by loving our little man and flowers and notes and gift cards and taking our picture and doing our Christmas card and money and errands and picking up medicine and fixing my computer and making Lincs lunch and giving us hand me down clothes I love and for praying and loving us

Our God sustains our soul and He uses y’all to meet our physical needs and sustain our bodies. He has indeed met ‘every one of our needs according to the riches of His grace in Christ Jesus.’ And all Gods people said…?!

And just to pretty the post up can I please share one of the precious pictures that Kristin captured of me and my love bug?! I think it is a cross between so so so sweet and that’s weird … Are they making out?! In his words, he is often ‘out of kisses’ and other times it’s a little all-boy-overly-aggressive-affection. It makes me smile though.

 And just to keep things real you should know that as we walked from the back house to the park at the end of our street he threw an all-out-flail-on-concrete-fit about the whole picture-taking thing because, as he often says, ‘I hate pictures!’ So right after the fit he was, as pictured below, Mr. Headless NonCooperation. Let this remind you not to believe the lie that tempts you to believe ‘it is well’ in every home but yours because of pretty Christmas card pics…  

And on top of us sweating in this picture and begging Linc to act normal, I also look pregnant. That is medically impossible but the picture tells another story. Just keepin’ it real for my peeps.

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