Continued prayers please

Dear friends, it’s Jamie again.  I am writing to update you on Jen’s status.  After 3 long weeks in the hospital, Jen is back at home.  She completed 15 days of whole brain radiation, which knocked her out for lack of a better term.  That, plus the progression of her cancer has really taken a toll.  Most of her days and nights are spent sleeping.   Her body is frail, her voice is weak, but her spirit is still very strong.  (Those of you who know her well will not be surprised by that.)  Thank you so much for your prayers as she is now resting comfortably and surrounded by loved ones.  And thank you for respecting the privacy of the family at this time.  The very best way you can love the Clouse family is by sending a card, commenting on this blog and/or by continuing to pray for Jen, Scott, Lincoln and Jane.

God continues to show up in big ways.  He is present in the details.  We continue to praise Him despite difficult circumstances, and know that He loves Jen even more than we do.

Thank you so much for your faithful companionship on this journey.  It is so appreciated.

Much love to you all,

Jamie

**As a side note, Jen’s phone stopped working about 2 weeks ago.  If you have sent a text to her during that time and did not get a response, that is why.  Again, sending a card or commenting on this blog is the best way to communicate for now. 

Pray for Dallas, Pray for Jen

Hi dear prayer warriors. This is Jamie again.  What a sad day in Dallas’ history and in the history of our nation.  My heart goes out to the families affected by the tragedy of last night’s shootings.

I am writing today to activate this army.  Our friend, Jen, is sick.  She went into the hospital last weekend with severe pain and nausea.  The doctors have been trying to get it under control this week, but she is not well.  Being the fighter that she is, Jen is still undergoing radiation treatment while hospitalized in hopes of decreasing the cancer lesions in her brain.  This, in turn, may help decrease her overall nausea and pain.

Jennifer, Scott, Lincoln and Jane would greatly appreciate your prayers.  Specifically, please pray for wisdom for Dr. Osborne and Dr. Casanova as they develop a plan for what could be her new normal.  Please pray for Lincoln that he would feel the Lord’s love flowing through all of his sweet and sacrificial caregivers.  Please pray for Jane to feel the Lord’s comfort in her moments of sadness.  Please pray for Scott to feel the Lord’s peace in times when he feels supremely overwhelmed.  Please pray for Jen’s friends to feel the Lord’s strength when weariness overtakes them.  And most importantly, please pray for Jen to feel relief from this extraordinary pain.

For now,  Jen is spending this time with her family.  Thank you for your continued care and concern for our sweet friend.

As we get on our knees before our heavenly Father grieving for those who have lost their lives and those who are suffering, may we be reminded that we serve a loving, caring, forgiving, gracious & merciful God.  And may we somehow have the opportunity to share that truth with those who need it the most – even if that includes ourselves.

Much love to you all,

Jamie (aka B)

 

 

Snuggles, Cinnabons & Reepicheep

Good morning friends.  It’s Jamie again.  Feels like it’s time for an update on our friend, but I honestly don’t know where to begin.  Those of us close to Jen have experienced so many different emotions throughout this journey, yet each day still seems to produce new ones.  A cornucopia of sad, mad, frustrated, confused, joyful, content, helpless, exhausted & grateful is the latest offering for me personally.  And that’s just in the last 5 minutes.  I can’t even imagine what it’s like for Jen, Scott, Linc & Jane.  I’m so thankful we have God’s truth to rely upon when our feelings are so uncontrollable.  Psalm 27:13, 14 says, “I would have lost heart unless I had believed to see the goodness of the Lord…I will wait on the Lord…and He shall strengthen my heart.” Blessed reminder.

Jen is settling into her new normal, which basically means a lot of time resting and trying to eat.  She is able to enjoy some perks like snuggle time with Linc in bed.IMG_9609.jpg

I don’t know about you, but my experience snuggling with an active 5 year old means knees in the back and an occasional elbow in the face.  I’m going to pretend that Linc’s sweet little fists folded up under his chin are going to stay put for Jen & Gigi’s sake.

Same for this scenario.  Keep those elbows tucked in, buddy.

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Jen had chemo last Thursday and is still tolerating that fairly well.  Especially when Cinnabons are part of the deal.  IMG_4356.JPG

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For now, chemo is the chosen course of treatment.  Things seem to change rapidly, however, so I don’t know how much longer this will be the case.  A brain MRI on Monday showed more metastasis, which could potentially alter the next steps.  Please continue to pray for wisdom for Jen’s doctors (Dr. Osborne, Dr. Casanova & Dr. Cheek) as they process and plan.

As for Lincoln, the only thing he’s planning is how he’s going to play with his birthday hamster, Reepicheep.

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Someone call Hallmark.  This is too precious.  And a little unnerving.  In fact, I think snuggling with Reepicheep may be the actual equivalent to how I remember snuggling with my 5 year old boys.  Just add elbows.

Friends, I’ve been tasked with updating this blog.  I hope it’s helpful, and that it allows you to feel connected to Jen and to know how to pray for her and her family.   Some days I don’t know what to say.  Today is one of those days.  This is tough.  This is surreal.  This is at times unbelievable.  But this is life.  And for TODAY, this is the day that the Lord has made.  And if I know Jen, she will choose to be glad in it.

Thank you for your continued support through prayers, calls, texts, cards, errands run, laundry folded, bills paid, play dates, etc.  The Clouse family is grateful.  And thank you for respecting their time together as a family.  Jen is in need of a lot of rest, but would love to connect by reading your comments below.

Much love to you all,

Jamie (aka B)

 

Scan Results & Update

Hi everyone – it’s Jamie again.  I asked Jen if she would be okay with me updating the blog with scan results from last week, and I got the green light.  Jen’s people (YOU) are extremely faithful in prayer and concern, so I know you’ve been awaiting the results.

Last Thursday was a very long day for Jen.  She had to be at the hospital at 6:40am to begin her scans.  (PS: I’m thankful that Gigi was assigned that driving shift).  She then proceeded to undergo a myriad of scans that lasted until about 1pm.  Somewhere in between 6am and 1pm, however, Jen got into a scuffle with one of the nurses and I showed up as the drama was dying down.  Let me just say you don’t want to mess with Jen or else you mess with us too.

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Don’t be fooled by those smiles.  We can be really fierce when provoked.

We were grateful Jen asked for some food after the scans were over, and Burger House was her first choice.  Being the good friends we are, we ate fries and onion rings alongside our patient.  (As a side note, just because your friend needs a shake doesn’t mean you do too.)

After lunch, Jen was able to get in a quick nap before her 3pm appointment with Dr. Osborne.  Scott and Jen then went to the appointment where Dr. O shared the results.

Basically, Dr. O said there were ‘mixed results but overall not as good’ in every area where there was some stabilization (defined as less than 20% growth).  She is watching the following:  liver, lymph nodes around clavicle, mediastinum (chest) and fluid around lungs (which is present ~ indicating activity).  The neck CT takes longer to get back and she doesn’t have results from bone scan yet.  Also, they did not do a brain MRI as it’s on a different quarterly schedule.

They also spent a lot of time talking about ways to increase her appetite and about next steps for treatment.  Jen will stay on the same chemo for now, but will decrease the frequency to every other week to hopefully lighten the negative side effects.

If you are like me, you were probably wanting more conclusive information.  (Somehow I feel this illusion of control when I have a lot of details.)  I’m confused by the results and all of the percentages.  I’m frustrated by medical terminology.  I’m wanting to hear something more concrete.  A timeline, a definitive plan, an opportunity for a miracle.  But I’m realizing quickly that cancer is cancer.  And Jen’s body is riddled with it.  And whether a tumor has grown or not doesn’t change the fact that God is in control.  I am not.  He’s overseeing every single detail of this journey.  And although He never promised that our lives would be easy, He does promise that ‘our present sufferings are not worth comparing with the glory that will be revealed in us.’ (Romans 8:18).  Thank goodness our hope doesn’t depend on something as unreliable as scan results or tumor marker numbers.  Instead, our hope is in the one true God who never changes (Malachi 3:6a).   Psalm 56:4 says, “… in God have I put my hope; I will have no fear of what flesh may do to me.” I find peace in this verse as I watch this insanely cruel disease take over my friend’s body.

These truths are especially poignant today as one of Jen’s friends in her Pink Not Grey group passed away from stage 4 breast cancer yesterday.  Oddly enough, I grew up with this friend in church and know the family very well.  She was 41 years old and also a patient of Dr. Osborne.  She was a lover of Jesus and shined His light brightly.  She had lots of friends who loved her well.  And she leaves behind a loving husband and one precious child.  My heart simultaneously breaks for her family as well as for Jen. The parallels hit way too close to home.

I heard someone once say that “pain is the soil where the deepest kind of faith in God grows.”  And for those of us in pain, our love for God is able to mature if we turn to Him.

As Jen enters a new stage full of unknowns, please continue to pray for daily reminders of God’s knowns.  Pray for Scott as he cares for his wife.  Pray for Lincoln to be surrounded by love and to have no fear of his future.  Pray for Jane to feel the Lord’s arms around her.  Pray for Jen’s friends and family to seek God in times of confusion, sadness and helplessness.  Each of you are a part of this story and we continue to place our hope in the Lord as he writes the pages of Jen’s book.

Much love to you,

Jamie (aka B)

 

 

 

 

 

Scans Today – Please Pray

Hi everyone!  It’s Jamie again.  It seems like so much has happened between the last post and now, but I will try to give you the abbreviated version as we would appreciate your prayers today.

Jen has her ups and downs, but has been plagued with extreme fatigue as of late.  That, coupled with a lack of appetite, has left our girl weak and thin.  At the urging of Scott on Tuesday, Jen contacted Dr. Osborne to let her know she was not feeling well.  Dr. O asked Jen to come in for fluids to help with dehydration.   We laugh because Jen told Gigi ‘it shouldn’t take too long’ when we were deciding on who’s car to take to Baylor, but I reminded her that Baylor can be a little like quick sand and once you step in the doors it’s really hard to get back out.  Let’s just say the quick sand was in full force because Jen ended up being there for most of the day.  She received an IV concoction of Magnesium, Potassium, and some other things I can’t spell or pronounce.

Dr. O also examined Jen then returned for a visit later to let her know she really needed to start eating.  Apparently her blood work looked like that of a person who was starving.  Literally.  Normally, I would make a joke of how ironic this is because Jen loves to eat.  But it was actually such a sobering moment that I can’t muster up any humor.  To watch my friend lose so much weight in such a short period of time is difficult.  Like really difficult.  There are moments on this cancer journey where I can almost pretend like it’s not really happening because Jen is so upbeat and looks so hip with her bleached pixie cut.  We laugh like normal and do life like normal.  But those times are starting to fade and my heart is breaking all over again.   My friend has cancer.  And her outward appearance is not letting me pretend any longer that it’s not happening.

Today, would you please pray as Jen has her scheduled scans to determine what is actually going on inside of her body?  She will be at Baylor for most of the morning then will have an appointment later today with Dr. Osborne.  I will be back in touch after we know the results and new plan going forward.

Jen’s faith is as strong as ever and knows that the Lord is still very much in control.  She clings to His promises daily, and reminds us of His goodness despite the circumstances.  Thank you for your continued encouragement for Jen, Scott, Lincoln and Jane.  This road is not to be walked alone and they are comforted by your prayers, texts, calls and cards.

I always like to end on a positive note, so I wanted to share that Lincoln turned 5 on June 1st and had a rainy celebration at Caruth Park fishing with friends.  Right before the celebration was to begin, however, the rain came POURING DOWN.  So much so that the party was even in question.  But miraculously the skies cleared up just in time for the party and fishing commenced.  Somehow I feel like that’s a beautiful metaphor for this journey. One minute the rains are drenching us and the next minute the sun is shining.  We are praying for a little sunshine today.  IMG_0052.JPGIMG_0025.JPG

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Much love to you all and a very HAPPY BIRTHDAY to my favorite 5 year old!!!

Jamie (aka B)

 

Rainy Day Update

Hi everyone.  It’s Jamie again.   What a privilege it is to update all of you, faithful friends, on Jen’s journey.  So many people have inquired about our sweet friend lately because she’s gone blog silent.  And for those of you who know her well, silent is not in Jen’s vocabulary (can I get an AMEN?!).

So much has happened in the past few weeks that it would be difficult to recall it all.  (And let’s be honest, I just turned a year older and I’m clawing my way to the end of the proverbial school finish line, so really anything is hard to recall).  But I CAN remember what happened this week (#winning).

And it looked something like this.

IMG_3690.JPGThis is Jen crouching down in the elevator.  Why, you ask?  Because her body is SO DARN TIRED.  Tired of the radiation (which is now complete), tired of the chemo, tired of, well, CANCER.  I was surprised she mustered up a smile for me because it was pretty brutal.  But hey, a girl always knows to be picture worthy because SOCIAL MEDIA.

Jen is finding it really hard to even get out bed lately and has been sleeping a lot.  Unfortunately, we can’t say the same for her nausea.  It’s wide awake.  On her Wednesday visit to Dr. Casanova (palliative care physician), he recommended she receive some IV fluids to see if that might boost her energy and decrease her nausea.  As soon as she hit that chair and they draped her in a warm blanket, she was out.  And truthfully I can’t blame cancer for that, because once I was offered a warm blanket (and accepted it shamelessly) I fell fast asleep too.  I’m sure it looked like a page out of a preschool book complete with vinyl mats and mini pillows.  NAP TIME.  There are moments when cancer gives you unexpected little gifts and this was definitely that.

IMG_3694-1.JPGSorry for my big face, but I knew this was a memory I didn’t want to forget.  How often do you get to nap with your friends in the middle of the DAY once you’re past the age of 3?!  Priceless.

And since we are doing silver linings,  Jen received some encouraging news on Monday from Dr. Osborne.  Her blood work looks good, and the protein in her liver tumors are decreasing.  We’ll take it.  She is due for additional scans in the upcoming weeks which will give more information about what is actually going on inside her bod.

And if you can stand even more positive news, the Clouse family has finally moved into their new beautiful home!!  And it is JUST that.  A home.  With all of Scott’s hard work and attention to detail, and Jen’s final touches, it is as if they’ve lived there for 20 years.  It feels new, but somehow very familiar.  It feels roomy, but cozy at the same time.  It feels like a place that wonderful memories have already been made and will continue to be made.  Basically, it feels like love lives there.  And who can’t get excited about that?!  Thank you to EVERYONE who pitched in and worked super hard…

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IMG_0043.JPGIMG_0020.JPGAnd even to those who didn’t work quite AS hard…

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It was all worth it for these moments of joy at the end of a LONG DAY…

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See?  Love most definitely lives here.

Lastly, Jen and Scott were able to get away for an anniversary trip to Turks & Caicos thanks to Jen’s generous running group.  (I’m contemplating how I can join this running group despite the fact the only place I would actually ever run is to get on a plane that is heading to TURKS & CAICOS.)   And while sleep may have been a dominant activity on Jen’s daily itinerary, at least she awakened to a beautiful view of crystal clear water and not her friend’s big face.  In between naps, she and Scott even got in some paddle boarding and fishing.  Apparently fish appear smaller in photographs than in real life.😉

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Seriously, though, I think this is a fancy fish of some sort (bonefish?) so to Scott I say: WE ARE PROUD OF YOU, SAY WE ARE PROUD OF YOU, hey hey hey.

In conclusion, Jen wanted me to pass along that even though her people pleasing is alive and well and she wishes so badly that she could write to those she loves (that would be YOU), her pain and fatigue is even more alive and well at this point.  Your prayers, cards and messages are so greatly appreciated, however, and I’m here to say THANK YOU to each one of you on her behalf!!  The Lord continues to meet Jen’s every need, and she is so grateful for His daily provision in every single detail.

He is GOOD.

He is FAITHFUL.

He is ENOUGH.

With SO much love,

Jamie (aka B)

Pain Pain Go Away…

Hi guys, it’s Jamie again.  Jen asked me to update her blog so here I am.  :)  I love that when I ask Jen to give me the highlights of her health journey so that I can post accurately, her text is SO LONG that it has an arrow at the end.  Has anyone even seen that before?  No.  Is anyone surprised by this?  No.  I’m the first one to tell you I write long texts, so I have no business throwing stones. But mine has never had an arrow at the end indicating ‘there’s more’.

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See that little arrow on bottom right (>)?  When you click on that bad boy an ENTIRE NOVEL pops up.  I’m not kidding.  Oh how I love my verbose friend.  I’m debating on whether or not to just cut and paste the rest of her text and call it a day.  As much as I’d love to, however, I’ll try to do this post justice by relaying HER words through MY words.  (I can just see Mrs. Merryman, Señora Plexco, Coach Hines and Mrs. Snell harkening back to the day of hearing both HER words and MY words all day long while trying to use THEIR words in class – so sorry about that!).

Anyhoo, Jen is doing this in Florida right now in case you are wondering.

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While Linc is doing this…

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And while it all looks and sounds like a little piece of paradise, she is still hurting a bit as you can read above in her text to me (right before the ARROW indicating you are about to read WAR and PEACE).

And while I was joking about copying and pasting Jen’s text, I just finished reading it and I am totally going to copy and paste it.  She even wrote it as she were writing a blog.   And she called herself out on it at the end of her text.  Like why didn’t she just write the darn thing?!  And it’s a good thing because the end is actually all I ever read.  In ANY novel.

So here is Jen’s latest update:

– started radiation to spine and hip/femur on Tu – going well until Friday and back pain that escalated to 10 by Sat if, heaven forbid, I needed a deep breath or cough or LAUGH. Pain was in new area and felt like a broken rib.

– doctors on Monday speculating that back pain is bc if radiation and as they target the spine it causes temporary inflammation that is pushing on nerves along the left/right of the spine (T8-T11 for the medical peeps). The original pain which prompted radiation for relief was on left side so I didn’t connect it to radiation when the pain was on right side but makes sense when it’s explained as mirror image of original pain and inflammation from the spine.

– expected to also likely have tummy issues and esophagus issues nc radiation waves cross all those areas but nothing too troubling yet.

– I’ve had 6 out of 15 treatments – at Monday’s appt (and via text from Dr O at 8p on the first day she arrived from a 2 week vacation … Who does that?) I learned that my liver numbers were up

– these ‘tumor markers’ are supposed to be 1-6 in healthy people and when I first got diagnosed in Feb 2012 mine was 1.2. When re-diagnosed as stage 4 (Dec 2014) they were 25 and over the last 18 months have, on average, stayed in that area w some bounces up to 60 but also coming down to 11 when various chemos worked for short seasons. So, NOT GOOD when the same number that was 30 on last blood test was 140.   Dr O had two possible explanations: 1. Not good or 2. Can happen when chemo kills a lot of cells that are dead and turn into protein before they can be flushed out of liver (or something like that?). If it’s 2. we would see them start to go down after first cycle of chemo (cycle for this round is 2 weekly treatments and then 14 days off) and I was at the tail end of first cycle w chemo again on TH if my other numbers were high enough.

– based on blood work on Monday, we were very pleased to hear that both the ‘tumor markers’ they measure were down from 140 to 120! And are THANKFUL and HOPEFUL they will continue to come down. I don’t really know what 140 means but something tells me that being 40-45x the max of normal/healthy range just might not be a good sign for my livers ability to do its job

– in other blood news, the numbers for white and red blood cells were pretty low (expected on this chemo). Not at dangerous levels (i.e. not needing blood transfusion) but at ‘wash your hands and don’t get sick and if you get a fever call me immediately…’ levels.

– as for the don’t get sick, it wasn’t such good news to find L sooo hot yesterday and not eating breakfast or lunch and telling him his throat hurt and requesting a nap. Who is that kid?! In my mom-greatness (or denial) I didn’t connect dots of potential sickness until he put his face against mine and I felt the temperature. And what does any good mom do in that situation!? Ice cream. And while he’s not the most photogenic kid (Scott and I blame his parents) I think it’s funny that he can’t take his eyes of the ice cream even for a picture.

 

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But the best news of all is the location of the picture and the timing of bad news mingled w good news and needed rest… In the picture, Linc is at gate 5 headed to the beach. Or, as Scott overhead him telling his teacher at school when he picked him up early yesterday, ‘I’m going to the beach. It’s called Summerside.’ Or Seaside?! Tho actually it’s neither and we are going to a friends house in Rosemary Beach with a couple girls and then repeating our fall trip to Watercolor (sooo thankful for generosity of the Harrells!) with friends and family starting Friday when Scott and the rest of the gang arrives.

Speaking of trips, I’ve gone quiet on blog so never shared the post hospital update that we decided, after 12 days in the hospital, that it would be too hard to spend 2 nights together as a family and then leave at 430a, without Lincoln, for Turks and Caicos. So, in our friends grace and kindness, they rescheduled the trip for us and we are sooo excited that it could be so soon. We are headed back to beach (sans a 4yo!) on May 14. As if we weren’t sooo excited before, this just gave us another month of counting down the days!

[Jamie again starting here]

Y’all.  This was ALL IN A TEXT.  A TEXT.  And I’m afraid to even ask her if she did it via voice text because that girl has mastered the art of voice texting.  We laugh because when I attempt voice texting with Siri, and say ‘period’ at the end of my sentences, Siri always just types out ‘period’.  That can be unfortunate in some situations.  But JEN.  She just bosses Siri around with her ‘period’, ‘exclamation point’ and ‘comma’ and Siri LISTENS.  I’m reduced to thinking Siri obeys me about as well as my children do.  Period.

And to make a long post even longer, I do need to interject one more thing before you get swept away with dreamy visions of Turks & Caicos, Rosemary Beach, Watercolor, etc.  This journey is not for the faint of heart.  It can take your emotions from ceiling to floor in about 2.2 seconds.  I’m sure those of you who are close to Jen or anyone with cancer can relate.  I can’t even wrap my brain around how Scott, Lincoln or Jane must feel.  My heart breaks for them.  And even though I’ve actually gone awhile without crying, the last few times I’ve been with Jen I’ve cried.  And by crying I mean super ugly cry – not dainty tears.  What is up with THAT?!  I think the Lord is continuing to remind me to cherish every moment I have with my people.  I often wonder if this experience with Jen has changed me forever in a way that I will not ever take my relationships for granted again.  I sure hope so.   Jen and I have had so much FUN through all of this that sometimes I forget what she is facing and how this will all end.  But other times something will trigger my heart and mind and remind me that our time together is limited.  Our laughs are limited.  Our hugs are limited.  Our times for sharing stories is limited.  Our times for her introducing me to fancy food is limited (and thank goodness for that ’cause my pants are getting snug).  And in those times, every single second feels like a gift.  I like to take a mental picture of these moments hoping that in the future I can somehow recall them with abundant joy.   I know we joke a lot both on this blog and in person. But I have to be honest that it’s getting real up in here people.  This cancer is everywhere. And it doesn’t want to go away.  I LOVE my friend dearly.  And I’m so very proud of her.  To watch her embrace life, embrace family, embrace friends and most importantly embrace Jesus in spite of her circumstances is one of the best examples of a true believer I’ve ever seen.   And I imagine God is up there putting a little arrow (>) in the bottom right corner of Jen’s life saying to her ‘there’s more’ to be done here on earth, good and faithful servant.  And for that, we are grateful.

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Much love to you all,

Jamie

PS: No one was harmed (or exhausted) in the building of this amazing sand castle except maybe the people who actually built it.  But it does make for an incredibly precious photograph, don’t you think?

PSS: Sorry for any typos, Leo Tolstoy, but I’m not ABOUT to go back and proofread this novel.

 

 

Pain, plans and provisions…

Well, friends, this has been a wild one. So thankful for B stepping in to bring you up to speed and solicit your prayers.Prayers bless us and remind us, ever so sweetly, that we are not alone. And that says a lot when pain keeps you from visitors and even texting. Who am I? I didn’t quite recognize the girl who didn’t have energy for friends nor cared about food (B confessed she gets most worried when she says she ‘will bring anything…’ and I decline or don’t eat!) nor texted nor showered but every 3 days. Not exactly like I was dirty with the limited activity of 3′ to bathroom and snail’s pace walks around the hall but this girl likes herself some clean even if it ain’t pretty. I went over a week without even going outside. Jennifer Lewis Clouse seems to have gone MIA in room 409 of Pickens.
Friends. That is all because … Oh my gosh the pain of Thursday morning was other-worldly. Still not sure why/how/what tried to kill me but on the way to the ER I confessed to Scott that death was far superior to that pain. Poor guy. What do you do with that? I don’t remember much but little flashbacks are more like images of bad tv where the girl is alternating between screaming bloody murder in the ER and crying like a baby begging the nurse at my side ‘you have to do something!’ They tried the ‘let’s work on your breathing to calm you down’ trick and let me tell what a girl in that situation can’t do … Breathe calmly. Scream?! Yes! Breathe?! No. I even remember one of those high-drama moments where out of nowhere a needle is stuck in my leg while they are trying to get the good stuff in my port and I am pretty sure that might have been an ‘anti psychosis’ something or other. Wow. I presume you understand that Thursday was awful?!

And as B brought you up to speed (thanks again my friend…) I really hope you laughed when you come upon the unexpected line about our car disappearing from the dropoff lane?!?! I still can’t get enough of Scott telling this story nor will I forget my legs crawled up around my chest and Scott putting both hands on them and saying (in his forever-calm-voice), ‘it’s going to be ok but our car was stolen…’ And since ‘our car’ also included my waiting-to-unload purse and wallet in the front seat and Scotts backpack, work computer and iPad in backseat. It. Was. Everything. 

I love Scott’s impressive teaming with Baylor Hospital PD (yes the image you conjured up is as unthreatening as reality…) and his genius first-time-ever-usage of ‘find my iPhone’ detective skills, he somehow recovered the car within :30 with everything but about $200 (even left visible $5 bills in bottom of my purse!) still in it. 

Thank. You. Lord. We’ve said over and over that we can’t fathom the stress of having spent the rest of our stay here canceling cards and police reports and replacing a car all from suite 409! And did I mention I haven’t been feeling well? Needless to say, we are thankful beyond words for the Lords protection and provision. And the list of those reminders of His provision is very long…

We spent the first half of our stay (his post started on Monday which is day 11 I believe but will finish on Tuesday morning by the dim light of monitors…) trying to figure out the source of the pain. Pretty quickly we concluded that it was a pain problem with a side of nausea – and the nausea was only because of the pain. In November, during our other (and now maybe to be expected for future as we are learning…) longer stay, we also had a nausea problem to address. Thankfully, this time, the nausea subsided once pain was under control. 

It’s hard for us and the doctors and anyone else looking at my charts to not need an explanation for such a quick onset of such intensity. But, by the end of last week, as much as we wanted real answers and solutions to fix the problem, we all resigned that answers were eluding us. And, in the most advanced medical terms possible, we have concluded (drum roll please…) I have: cancer-related pain. Yep. That’s it. Cancer. As my mom said last week during the zealous search for other answers, ‘we just want an answer that doesn’t start w C…’ But, the reality is, I have cancer. And it isn’t very nice and it is wreaking havoc in my body and in my bones.
In search for explanations, we did several MRIs and while they didn’t diagnose the source of accute pain they highlighted some high risk areas for impending fractures. It was funny to me that after each doctor saw the scans, they would come in and say ‘are you sure it doesn’t hurt when you walk?’ I think it probably does hurt but the previous pain management regimen was keeping it at bay and hiding the progression. 

Now that we’ve seen the scans ourselves and seen an inverted horsehoe of grey around my hips, pelvis and down into my femur, we see the problem they see. So, our next steps will be radiology therapy on that area as well as my spine. My spine, per inages, doesn’t seem to be as fragile as my lower pelvis area but, from my standpoint, I think it could be a source of the pain in the flank/abdomen, so we will   address those too. Those treatments are daily/short dosages of 12-15 radiation in the targeted areas. We are not yet sure if we can do the spine and right hip/pelvis/femur simultaneously or not but meet with that team again on Friday. And have chemo on Wednesday. 
Once we turned the corner from diagnosis and pain control to simply pain control, it has been an interesting process of deciding which medicines and how much of each and how to balance oral meds (which can be taken at home unlike my very happy relationship with the button at my bedside) with my pre existing ‘happy patch’ of fentanyl for the right ‘morphine equivalent.’ As well, we are coming to appreciate that with these new combinations come ‘new normals’ as it relates to an acceptable level of pain and acceptable level of activity (given the known side effects of fatigue and not wanting to ‘overdo it’ on pain management side and limit life involvement with grogginess). 
My pain, with the new combinations we’ve been building while here, is under control and I am sooo thankful. I think my emotional confidence in that plan has lagged by a day. Sunday, when the pin management doctor mentioned ‘going home Monday if they unplugged all of the Iv pain management options’ was unexpectedly scary. Scott lit up and I panicked. But, with his encouragement and a little time, my head and heart caught up and I expect I will be released Tuesday or Wednesday depending on how the nights go.
Speaking of nights, Scott has happily and steadfastly taken up his little sleeping spot in 409 and a little desk space for work too. He comes and goes for appointments and meetings, has a new running route or two from Baylor, and provides a palpable sense of security with his presence. He’s been a rock. For me and for this preciousness too. They shared Scotts cozy sleeping spot for a Sunday nap.  

 Revive my heart.

Poor guys were worn out after this raucous game of pillow fighting ok Sunday. This was approved for ‘hospital  play only’ using their plastic pillows and not at home with anything we might actually use.  

 Lincoln has been with his beloved-but-not-biological Aunt Steph. I daily marvel at the compassionate, empathetic, availabile, likeminded, heart, capacity and perfectly provided and ordained gift she is to our family. And as if it mattered what I think … Linc adores her. And, so sweetly, that feeling is mutual. In my pained and panicked state on Thursday morning, Scott called to ask her to take him to school so we could go to the ER. And he has spent every morning and night with them since.  When I think of Steph and Ted, my mind lands on Psalm 92 … 

1 It is good to praise the Lord and make music to your name, O Most High, 2 proclaiming your love in the morning and your faithfulness at night, 3 to the music of the ten-stringed lyre and the melody of the harp [oh yes we have with Miss Mary…] 4 For you make me glad by your deeds, Lord; I sing for joy at what your hands have done.
In our hospital stay (and well beyond) the evidence of His goodness to us is worthy of ‘singing for joy at what His hands have done…’ (and, trust me, that has been done through tears in these halls) but the daily reminder that our God perfectly provides for our most precious 11-day-concern is grace upon grace! And more grace upon grace on top…

Here is our Aunt Steph and her daughter in law, Judy:   

 She has taken care of everything we could have possibility thought of for him. And then some. As I type l, I am waiting for her to bring him up to have dinner with us. A healthy dinner that she has cooked (and probably let him help!) so he can come have dinner with his parents bedtime. As precious as it is, it stinks that a kid has to eat dinner with their mom at the hospital while she’s tethered to pain poles and our play area is limited to a hospital room and grounds. Thankfully, yesterday, he said ‘dad, do you like staying at the doctor?…’ I wondered how Scott would respond and can’t even remember because was so sweet to hear Lincolns follow up: ‘I do.’ And despite the cords, I admit he can make it fun. Here are some highlights from Sunday’s visit and the discovery of roly ploys and caterpillars in the prayer garden.  
 While I indeed loved being with my little man I feel like this smile is a bit inflated. This is probably me saying ‘your dad would love to see this guy … I have no idea if he is poisonous … I don’t know what kind of caterpillar he is…’  

This smile is a bit more legit because watching ‘fasty’ (named by little cuteness there) transfer from one of us to the next was quite thrilling for family fun. 

And then you can always come back to the room and let Juju read and answer ‘what does …. mean?’ for the umpteenth time. 

 In honor of some family fun and time together, all a Mama wants is a cute picture – right? Why all the fuss as at even the mention of the word ‘picture’?! And why all the nonsense that must follow? See above with Steph for more evidence. How about just a 2 second smile and we can all wrap this up? John Travolta hands completely unnecessary. 
 But, then, after coaxing to get that nonsense, this happened…  

Not posed. Not even requested. Not goofy. Just a boy. With a real sick Mama. Playing in the prayer garden while she is connected to pain meds and fluids. Celebrating that God is good. God doesn’t make me mistakes. We can trust Him. And as much as I love this little boy and the daddy that has been by my side (and thankfully sound asleep as I rouse for pain meds and realize I didn’t finish this post) I can rest knowing God loves them even more than I do. And that’s A. LOT.

Thanks for the ways y’all have all loved all of us. And that’s A. LOT.

We have had lots of pain and lots of changing plans to manage life and pain and now passed 12 days up here and our God has perfectly provided.

Psalm 92:4 For you make me glad by your deeds, Lord; I sing for joy at what your hands have done.

When in Doubt, Accessorize

So everyone knows how much a gal loves to accessorize, right?  Jen is a perfect example of this (has anyone SEEN this girls’ jewels?!).  She’s dripping in diamonds and 14,000 bracelets on any given day.  Or on EVERY given day, rather.  We had a great conversation about this on Monday because our friend, Amy, always seems to coordinate her jewelry perfectly with whatever she’s wearing.  And she has 4 kids.  I can barely make it out of the house in anything other than workout clothes and maybe a pair of fake studs.  And I have one less kid.

Anyway, the point being that Jen noticed the next day when I stepped up my game and swapped out my fakes for the real deal because I finally took time to transfer the one and only pair of earring backs I have from one pair to the other.  And that even wore me out.  But nonetheless I got props and it reconfirmed to me that Jen is an accessory lover of sorts.

Well, when Dr. O suggested that Jen might need to start using a cane because of the fragility of her hips, any old (lady) cane was not going to do.  We had the best time searching for CANES online (seriously, we did) and came up with this little number.

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I’m not joking.  This is going to be Jen’s new accessory and Dr. O said she should name it.  So…if anyone has any suggestions please let her know.  (This reminds me of when I was in elementary school and the Dallas Zoo got a new baby panda.  Or maybe it was a giraffe.  Either way, our class submitted names for the contest and it was all kinds of fun thinking mine might be chosen.  It wasn’t.  But knock yourself out with those names.)

In other news, Jen also thought the fuzz growing in on her hair was a little too black for her liking, so this happened.

IMG_2046-1.JPGI love this pic for so many reasons, but mainly because it corroborates what I was saying about Amy’s jewels and Jen’s bracelets.

After the salon party, Jen was much happier with her shimmer from a box.  However, because she is now starting a new chemo (and actually had her first round at 10pm one night this week), this shiny new fuzz will soon be gone.  But the memories and laughs WILL NOT, I assure you.

And speaking of memories and laughs, during a riveting conversation this week there was a knock on the hospital door.  A lovely Baylor volunteer named Mary came in with her mobile harp (who knew this was a thing?!) and asked if Jen would like for her to play.  I was certain it was going to be a ‘no’ because we still had a lot of ground to cover.  However, Jen sweetly said ‘please come in – I’d love to hear some hymns’.  And that proves Jen is either nicer than I am or more of a people pleaser, cause I’m gonna be honest I was ready to finish our conversation.  It was surprisingly beautiful, however, and I found myself glad that Jen was either nicer than I was or a people pleaser.  The only bad news was that Jen had just taken a little concoction of things to help her bowels move and Mary wasn’t about to let up on ‘How Great Thou Art.’  See Jen?  It’s okay to say NO.

All kidding aside, Jen is still in the hospital and still in pain.  She pushes that morphine drip like a man mowing his yard on a Saturday morning in spring.  (Not really, but I got going on the analogy and could’t stop myself).  But she is STILL IN PAIN.  Her palliative care doctor, Dr. Casanova (I just love saying that), visited a lot this week and let her know that she would most likely not be leaving the hospital until early next week.  She is settling in, however, and this stay is not nearly as awful as the one in November.  Jen is even doing her taxes in bed and not antsy to leave.  And Scott has his mobile office all set up in the room as well, complete with a laptop and blueprints.  I wasn’t trying to be nosy, but I know someone has got a fancy master bathroom on the horizon.

As for little Linc, he is doing REALLY well with Stephanie, Mandy and lots of other friends.  I’d say SOMEONE is having a riveting conversation of their own on this trampoline here.

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I really want to tell Linc’s little friend (I think this is Andrew) to speak quickly because if a nice lady with a harp comes around the corner, you might not be able to finish those thoughts!!!

Here’s another sweet pic of Linc’s rendition of SPRING SLEDDING:

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Lincoln is doing well on his visits to the hospital.  He did tell Jen, ‘I don’t like your doctors because they keep you away from me.’  And to that I say AMEN LINCOLN!  This precious little soul has experienced so much more than most 4 year olds, but the Lord is always quick to remind me that He has very unique plans for Lincoln and that all of this is just training ground for the finished product.  I had a good cry with Jen about missing my time with Lincoln.  I get the benefit of being with HER so often which I do not take for granted, but my heart breaks that my bond with the little man is not nearly as strong as it once was because of our lack of time together.  I know the Lord will work that one out as well in time, but it’s these kinds of emotions that you can’t prepare your heart for.  So thank you to Stephanie, Mandy, Jenn, Molly, Cynthia, Jane, Gigi, Miriam, Lezley, etc. etc. etc. (there are so many I can’t even list them all) for swooping in and LOVING Lincoln through this difficult time.

And to all of YOU, thank you for continuing to love all 3 of the Clouses.  Tears are streaming down my cheeks right now because of the beautiful way you show them how you care.  It’s unbelievably touching and so completely overwhelming.  Much like our Father’s love for us.  I’m just thankful He’s making that so tangible right now.

Well…how I got from a champagne pink cane to a sobbing mess so quickly is lost on me.  I guess this is just how the cancer journey goes.  Thanks for hanging in there with us.

God speed and good accessories,

Jamie (aka B)