Saga XVI: Anointing

It’s June 2nd.

At 4:30pm, doctors called me while we were in the cafeteria to let me know that Scott had started bleeding again, and that nothing was stopping it.  They said the Intervention Radiologist (IR) team would do their best, tho’ they had claimed prior to this that they were out of options.  We were grasping at straws.  We were all losing him.

Our church had assembled and was praying in Woodland.  Loved ones were on their way to be by Sarah and my side at OHSU.  I still remember my text to a dear friend, begging: “Please come now.”

“I’m so scared.” I texted our pastor, as he, his wife Katie, elder Jim & wife Vicki were on their way.

This part of the Saga, this evening, felt so very long.

I remember realizing it was time to gain the courage to do something that I didn’t want to do.  To face something I didn’t want to face:  It was time to talk to a couple of very specific men in our lives, asking them to step in and be there for my children for the long haul.  It was one of the hardest things I’ve ever had to ask someone ever.  Ever, ever, ever.

There were many things that I hold close my heart during these precious hours*.  Many things that I simply don’t have the umph to face, share, or talk about here for now.  The intensity in those hours were like a hurricane.  Raging.  Unfathomable.  Calm.  Awesome.

As Scott was going farther away, the closer God made Himself apparent.  The scarier it was, the more I rested in knowing God was in control, and that His peace fought for me.  The more I thought Scott would leave me, the more I cherished every moment I’d ever spent with him.  It was the ultimate pendulum, pulled strongly and equally to both sides.  Opposites were colliding.

At 7:30pm I got the call:  They had stopped the bleeding.

Out of surgery. Moving back to ICU. Bleeding stopped. Keep praying. He’s alive!!

We didn’t think Scott would live through this day.  The medical world had all but given up, with “no options”.  We still had hope.  It’s by the grace of God that those incredibly skilled doctors performed magnificent miracles on Scott’s body.  If you tried to convince us otherwise, well, you’d be wrong.  And that’s a shame.  It is that simple.

At one point during this evening while we waited in limbo, I was talking with one of the men that had come to the hospital.  He kept trying to encourage me, “I just know Scott will be okay…  Why would God put him/us through this if it weren’t going to work out?”  I had to look him in the eye and tell him that we didn’t know Scott would live.  We hoped!  But that God works in big ways, not always our ways.  But that we had to trust Him no matter what.  Our faith could not waiver just because it doesn’t go the way we want to, if it must end [to us] horribly.  I remember worrying that the thousands of people watching Scott’s story may lose heart if Scott died.  I wanted to reassure them.   I remember feeling urgency, like I had to tell them now that God is good, even in the bad.  To explain that we cannot base our faith on what we want and feel.

But then, this man held faith like a child.  How could I discourage that with my worldly sense of ‘logic’ and self-preservation/protection?!

When the IR nurse called to give me the good news, I just cried.  I was overwhelmed.  Grateful.  So scared still.

Each hurdle ending in “good news” gave me less exuberance than the last.  It was harder to think we could just breathe again.  It was harder each time to relax or celebrate.

I stayed with our loved ones in the cafeteria for some time.  The nurse had let me know it’d be a while as they got Scott ready to move back to the ICU, where I could go to him.  One side of me wanted to stay in the cafeteria longer.  Just to be.

At last, Sarah and I went to see Scott.  He was swollen more than ever.  His eye sockets were bulging, not indented.  His hands were completely puffy and tight.  He had machines covering most of the parts I could see, his body surrounded in pillows and blankets to secure and prop him.  The face mask and padding that held his ventilator in place was stained with blood.  They had done their best to clean him up, but he had blood puddled in his ears.  Crusted into his facial hair.  His breathing monitor, which once provided soothing sounds as it supported his lungs, was sporadic and non-rhythmic.  His vitals were sketchy.

Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord.  And the prayer of faith will save the sick, and the Lord will raise him up.  ~ James 5:14
Continue Reading »

Saga XV: No Stopping

Get your tissue.  This is going to be a difficult one.

This Saga Chapter was an especially hard one to write. These particular days held many intimate moments and details that will be left out for now. It’d be an additional books-worth!

This was one of the most powerful days of my life (as well as the next installments’). ~Summer

Monday, June 2nd

This morning we slept as long as we could.  Once up, I noticed my cell phone wouldn’t turn on.  My heart skipped a beat.  This is how the ICU contacts me if anything is going.  But as quickly as I panicked, Sarah reminded me that they had her number as a back up.  I called in, and they said the night was uneventful.  Scott was still soundly sleeping, barely upgraded to “semi-stable”.

I turned my cell phone over only to realize my battery was bulging.  What to do.  $4 on Amazon and $30 at BatteriesPlus in Hazel Dell was the difference between getting it today vs. getting it in 4 weeks.  We made the obvious move.  Next door was a salon.  Sarah said she wanted to treat me to a pedicure since we were right beside a good place to do it.  Seeing my major resistance, she reassured: “It’ll only be an extra 30 minutes, and let’s call the ICU right now to see how things are.”  We did, and all was well.  Of course.


what a lovely stress relief!

Now, pedicures aren’t a new thing to me.  But this was the best one I’d ever had.  The chairs were fully massaging.  The lovely women worked long and hard – longer than usual.  How did they know?!

9am – Sleep was a good thing.  This morning is a new day, with new hope. I am thankful for a good nights rest, and for a bit of clarify of mind.

For God is not a God of confusion but of peace. – 1 Cor. 14:33

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. – 2 Cor. 4:16-18

When we got back to the car after getting a pedicure, Sarah’s phone was waiting for us with a missed call and message from OHSU (my phone was charging with its new battery).  They were going to “do a procedure” and wanted my clearance.  My heart, once again, skipped a beat.  How could I miss that call?!

I dialed them back quickly, and they assured me that they would go ahead with any necessary procedures even if they couldn’t contact me directly, but they would always try to first.  Meanwhile, they had not done anything, as there was no emergency need.  They were wanting to go down his throat again with a scope to see if they could get a better look of what was going on, and to possibly “glue off” the trouble vessel.  You’ll recall they tried to do this last May 24th unsuccessfully.  The risks were that the glue could go into his heart, mainly.  Yikes… But….  Okay!

11am – Docs are going in with a scope right now and are hoping to be able to “glue off” this vessel that’s giving us grief. Pray for success. What a blessing this would be.

While we waited, I got a message from our pastor, asking if he and some elders could come and pray over Scott this evening.  I welcomed it.

1pm - Scott’s stomach was too full of clotted blood that they could not vacuum out to see what was going on well enough. They pulled out and are giving him medication to help clear it out, if possible, and will try again later today.

He did introduce the option of surgery to remove his stomach if this doesn’t work.

Please, please pray that they can get good access later today, see the problem, and have success.

I have NO idea what a no-stomach kind of life means.

We’ve paged doc for a talk. I need to hear more.

Please pray. His body is tired, and may not be able to deal with another surgery, if necessary. I hope it’s not necessary.

At this point, I was really a mess.  I knew Scott would struggle immensely with this possibility.  I couldn’t help but be so sad that he has slept through most of this.  How would I tell him what all he had been through when he wakes up… That he has no stomach?  How would I cook for our family, knowing he may permanently have to be fed through a tube in his side?  Would I watch him wasting away over the next hand full of years, only to die a sad and miserable death?

Wendy blessed me so much by calling.  She has a history as a trauma nurse, and was able to “hold my hand” through these thoughts and questions.  She said that yes, it can be hard, but people can live long, healthy lives without a stomach.  Doctors can even form a “pouch” of sorts, limiting intake, but allowing patients to orally eat, etc…  That God would give us the strength to tackle this if we must.

Sarah & I went to be with Scott in his room.  We spent every moment we could with him, aside from eating, and very limited visiting with loved ones.  I really felt like God allowed me the opportunity to focus on him fully right now, and was blessed that I could be by his side, even if he was sleeping.

The doctor that was overseeing him in the ICU that day said that he had really given them a “run for the money” during the endoscopy earlier today, bleeding excessively and requiring massive transfusions while they were working.  They got it okay, but he was definitely keeping them busy and challenged.

In the last few days, my upper chest hurt.  It was hard to take deep breaths.


Later in the day, I ran into Dr. Orloff on the main floor.  The liver team had met for 2 hours this morning to discuss a plan.  She gave me a print out of what the upper GI and stomach removal would look  like.  She included a several-page study that her father had written, with several case studies and statistics.  It was a plan.

We talked about how Scott could not go through this surgery right now.  This could absolutely not be done as an emergency, but would have to be well planned out over the next few days, and he’d have to be stronger.  That he would have to recover a bit, asleep and comfortable.  This would be a serious and huge surgery.  One that the outcome would be dicey on a perfectly healthy individual.

We were running out of options.  It was the “best” thing these doctors now had up their sleeves to help him.  There was no doubt that they had been furiously trying to implement all other techniques before having to do drastic things.  But we all wanted him to live.  So it was time to stretch a little more. Continue Reading »

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Isaiah 41:10

June 1st,

Julie had driven us home, and so was generous enough to spend her morning driving us back in.

2:20pm: Good news!

I just went in and talked to Scott. He squeezed my hand and nodded his head. He’s mostly sedated, but is doing SO SO MUCH better* than after his last bleed, even tho’ this was almost as bad during. I don’t understand why, but I am thankful.

Our German surgeon is amazing. He talked to me for a long time, and asked me if I had more questions until I was completely satisfied. He said that yes, last night was very dicey, but that today he was very, very, very confident (he said it three times!).

This particular conversation with Dr. Cristoph was over the phone, in the ICU room.  I hadn’t seen him this morning, and wanted a report, so the RN paged him.  Dr. Cristoph apologized profusely for not being at OHSU to talk to me personally.  He was at the grocery down the hill.  This was quite reassuring to me.  He wouldn’t be there doing something so leisurely if he thought Scott was in immediate need.

Sweet relief. What a roller coaster.

Our doctor thinks that this may have just been residual pressure bleed. The ultrasound showed the shunt doing excellently (great, great!).

But we’re watching him like a hawk, and the ICU is his home again. And I’m wondering how we ever breathe again care free. But we’ll do that later. And I’m okay with that.

Today we simply waited.  They still would not call Scott “stable”, but again, was doing “good” considering all he had been through. The tube was still in, and he was on a lot of support.  Girlfriends stopped by and shared lunch with us in the cafeteria.  Lisa brought her babies.  Babies are so therapeutic.

Knowing Scott’s aversion to tattoo’s, Clairissa shared: “I kinda want to get a tattoo for Scott just because he very much dislikes them. I can’t wait to see you and hear your fantastic jokes. I love you and have missed, both you and Summer, this past week. There’s a special bond between volleyball 2’s partners, and I couldn’t have had a better one these past years! I really can’t wait to see you. — I’m feeling optimistic.”  This spurred a discussion by several close friends, talking about what would make the most bestest art piece that he’d most enjoy.  Or most loathe.

This day was a day of quiet hope.

In the evening, since Scott was tucked away comfortably, we drove home.  I texted some friends so they could come over and share in dinner.  I hadn’t seen my kids in so long.  I hadn’t been home in so long.  I knew I didn’t want to be “alone” there, even with my family.  I didn’t want to feel what it would be like.  I couldn’t do it.  I felt so small.

I was so tired.  I had a hard time focusing at home.  My house was full of love.  Everywhere I looked was loved ones, smiling, talking.  I missed them all so much.  I missed home.  I went upstairs to grab something from my bedroom, and couldn’t step into my room.  I couldn’t go there.

When I got into the car to leave, Adyn hugged me and said: “You know how sometimes you say I look tired?  I’ve never known what you meant until now.  You look tired, Mom.  Try to get some sleep.”  Our little man, always trying to take care of us.

In the middle of the night, the wee hours of Monday morning, I posted a song that I couldn’t stop singing in my head:

Feeling exhaustion setting in. Kissed my man goodnight, and now will focus on getting more than a couple hours of sleep. Thankful for friends sharing their home, for the hours I spent with my friends and family at our home tonight (first time in 10 days!), and for all of the love we are receiving. I tell Scott all day long. And I know he’s hearing it!

I will say “amen.”

a dear friend posted this from Christmastime

a dear friend posted this from last Christmastime

*I have no idea what I meant by this.

Saga XIII: Unity

When our Associate Pastor Doug talked and prayed with Scott last Monday, he left his Bible on the chair in the ICU room….  He had left in a bit of a rush as Scott had started to bleed, off to fetch me from the waiting room, where I was chatting with his wife and sweet littles.

That Bible turned out to be a real blessing and conversation opener.  Over the next several days, and up until we left the MICU when we returned it, Sarah and I really noticed a change in the general vibe of the room.  There was a softness, and a familiar peace among the nurses and doctors.

Our church history is more complicated than I sometimes realize, tho’ both Scott and I grew up in ‘christian’ homes.  To sum up: He and I attended a large Nazarene church in Arizona on and off for many years of our lives.  During my formative years, my family went to a community church that instilled many conservative principles (and also developed some knee jerk hiccups against legalism & hypocrisy).  Despite those developments and by God’s grace, after Scott & I were married we held to conservative christianity and attended a home church for several years.  It dwindled as families moved, and we were left to find a new church home.  Two years later, exhausted and thirsty, we found ourselves at Woodland Christian Church in August of 2011.  Who would have thought we’d land ourselves at a church so near home?  We’d always travelled up to an hour to commute one way to church in the past, as we were pretty picky with where to fill our ears and invest our lives.  For some reason, we had never looked in our own front yard.

Struggling with family relationships at the time, we were especially thankful to plug in to a community of believers to hold our feet to the fire, a solid place to delve into God’s Word and to regularly fellowship again.  Little did we know then they’d become our family*, more close knit than I imagined possible, yet right in line with our belief of what communities ought to be.  Something I didn’t realize still existed outside of our imagination.

Though we promised to ourselves that we wouldn’t be those church goers (note the distain in my voice) that attend every time the church doors were open, we’ve done just that.  The fervor for God pierced our hearts, and the desire has not waned since.  I am thankful for a God that continually stretches us and keeps us actively searching and growing and desiring more.  His grace has allowed us to broaden our self-made boundaries** and be flexible to adapt to unexpected and enormous blessings long before this particular Saga began.

100 years since it's start, Woodland Christian Church in 2013

2013 marked Woodland Christian’s Church 100th year in our community, photo courtesy Scott LaPierre

Only several days into the hospital stay at this point, this family of ours was right by my (our) side, physically and metaphorically.  Every single thing was taken care of.  They fed our children at home and us at the hospital, they remodeled and prepared our old house for sale, they raised funds to assist financially (with the continual reminder that they would be there for us for the long haul with logistics, if necessary).  They prayed perpetually.  They wrote me constant love notes.  I had no burden of life outside the hospital, and was able to focus wholly on the situation at hand.  And clearly was not alone.

As much glory as I want to give to our church right now, they know as well as I do that it is not the people, or the building, but a powerful God who gave us all the situation to handle with Him or without Him.  And we (all) chose Him together.

Which is a perfect segue into Pastor Scott’s Sunday morning sermon, June 1st, 2014.  The [later] morning after Scott nearly died Continue Reading »

Saga XII: Slow Motion

Saturday was such a fabulous day.  Good news kept coming.  With each hour, it seemed another IV would come out – he started the day with 7 or so.  Another line would be pulled.  Another monitor would be turned off.  Waiting for a room on Floor Four (Recovery), we watched the second game of the Final Four basketball championship.  Scott was certain they were reruns.  Later I learned that the same two teams played battled each other last year.

At last, the Transportation Team arrived, and we were walking the walk to Recovery.  Sarah and I may have been dancing more than walking.  We had graduated from the urgency of an ICU.

On the ride down, we were giddy.  Scott was asking to swipe every cup of soda he spotted, Sarah was complimenting nurses on their complexion.  When we saw the room, we were floored.  It was like a comfortable, dated hotel.  There were very little electronics, very little sign of medical assistance at all.  Scott may have asked: “what is this, amateur hour?” in his haze, and his clear recognition (and my appreciation) for the lack of need of all of the bells and whistles the ICU had to offer.  It was like apples and oranges.

The room had older wallpapering, medium-oak cabinetry.  Floral curtains.  Definitely classy back in it’s day, but…  Let me just put it this way: there was a VHS player.  Yeah.  The private bathroom, however, was slick!  It was roomy and very nice.  And to think, a bathroom in the room?  We were going to be living it up!  Sure, it was for the patient, but they were pretty lenient here, I could tell already.  No more ‘beeping’ back in after every potty break for us.   Multiple times they offered Sarah and I tea, coffee, juice.  Blankets.  “Anything” to make us comfortable.  They were gems.

The nurses were much different.  These were all CNA’s instead of RN’s (tho’ there were a few of the latter on the floor).  They were all – well, stereotyping, but “mostly” would be accurate – older, heftier, and … comfortable.  It was clear they were here to keep you cozy and comfy while recovering, that there was no need for the high-skill (and ridiculously thin, fit, and attractive females – what?!) that the ICU provided constantly.  They were gentle, loving, patient and so very kind.  Don’t get me wrong, the ICU folks were amazing, but these ones were all about hospitality and caring as their #1 goal.

We instantly moved from perpetual monitoring to once every 4 hours.  It made me nervous.  But it was a good thing, right?  Right!

Scott’s Mom, Sharon, was at the hospital still, and was able to visit his room a couple of times.  His Dad John, and John’s wife Nancy, also visited several times.  We tried to keep visits short, as Scott was still very exhausted.  He was up for a visit from a couple of friends who happened to be driving by, and so Ruth & Rachel came up and delivered flowers in person.  His first visitors outside of family for what seemed forever.

Sarah and I were giddy with excitement.  There were nice recliners, plenty of room for us to sleep comfy all night and to set out all of Scott’s gifts and cards and posters that people had brought.  Until now, I couldn’t even bear to read them myself, Scott unable to.  They were the sweetest, most loving, encouraging, warm words and gifts.


One of many in a ring bound ‘book’ of words of wisdom, handmade by I-don’t-even-know-who all

We were rubbing Scott’s feet, his arms.  We were all over him.  It was so good to see him awake and semi-alert.  It was so good to hear him talk, if raspy, and enjoy visiting with us and others.  It was sunny out.  Nancy brought Sarah and I a slew of Aveda goods to clean up with.  We were so happy.

At 7pm, The Recovery floor started to slow down.  The hallway lights were dimmed.  Things really mellowed.  It was shift change, with fewer nurses coming in for the night shift.

Sarah and I had spent a while in the waiting room earlier in the afternoon, then I had to run down to connect Sharon with friends who were picking her up to take her to some friends to sleep comfortably for the night.

When I got back, Sarah was cozily sitting next to the bed.  Scott looked uncomfortable.  He said his head hurt (it had for a while), and his stomach was sore (to be expected, right?).  Sarah had already pushed the call button to ask for some Tylenol.  They hadn’t been back with it yet.  Things were quiet in the hallways.

I was frustrated that I had spent so much time away from Scott this evening, clearing up logistics and other things.  But I was back now, and ready to get us all settled and snuggly for bed.  I walked up to the side of the bed to love up on Scott (as much as one can from beside a hospital bed, sides up).  I ran my fingers through his hair.  He looked miserable.  He rolled over to lean closer to me.  And then I saw it.  One of the worst images that creeps up on me still.  One of the few that haunts me.   Continue Reading »

Saga XI: I Made It

May 29th.  It’s 9am when I posted:

Scott is doing really, really well. He’s still fairly out of it, but did squeeze my hand this morning and showed signs he could hear me. They are starting to take him off of meds more now, hoping to wake him a bit, tho’ will leave him somewhat foggy and comfortable.

I spoke with one of the surgeons who was beaming with pride, who seems to love Scott in a special way. I expect to visit with Dr. Orloff later this morning at some point.

Scott is swollen (from drugs, transfusions and surgery), with a slight fever, and covered and poked with tubes and attachments – but he’s doing excellently!

Please continue to pray that he heals well (no bleeding, no clotting, diminished fever, no infection, etc), that the shunt “takes”, that he is comfortable when he wakes.


These is a day of nervous excitement. And the need for bedside napping! I treasure these moments with Scott. This crazy weekend is filled with memory-makers in the making.

I have so many amazing stories to share about this journey so far. I’ve said to many doctors in nurses: “even tho’ this sucks royally, and even when he’s nearly crashed – the timing and situations have been so impeccable that I just can’t help but be thankful.” I can’t wait to share more of the many, many details of the little things, but for now – I want to go love up on my fellow!


12:30 in the afternoon

12:30 in the afternoon – lookin’ good!

Posted from a friend: Thinking of my friends Scott & Summer this morning! Trials always show us where our hope truly is. Or as James 1:2 puts it, trials “test” our faith showing what it is made of and God brings forth much good if we trust Him through our trials. My friends Summer and Scott are living out their faith and demonstrating that their hope is truly in the Lord!

Jere is a beautiful prayer that captures what Summer has said in various posts.

“In you, Lord my God, I put my trust. I trust in you; do not let me be put to shame….No one who hopes in you will ever be put to shame, Show me your ways, Lord, teach me your paths. Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. Remember, Lord, your great mercy and love, for they are from of old. He guides the humble in what is right and teaches them his way. All the ways of the Lord are loving and faithful My eyes are ever on the Lord, for only he will release my feet from the snare. Turn to me and be gracious to me, for I am lonely and afflicted. Relieve the troubles of my heart and free me from my anguish. Look on my affliction and my distress Guard my life and rescue me; for I take refuge in you. May integrity and uprightness protect me, because my hope, Lord, is in you.” (from verses in Psalm 25)

Keep praying for:

1) no more bleeding
2) no clotting
3) diminished fever
4) no infections
5) that the shunt they put in will “take”, and
6) that Scott is comfortable when we wakes


“I made it” – Scott Steenbarger’s first words in days


They took all tubes out of Scott’s throat. He’s waking up a little, smiling and saying all sorts of funnies. He is even cracking delirious jokes.

He is doing very well.


220pm: He’s still so very sleepy, and so not coherent. But so very good.  <3


5 pm: Scott says he wants Mountain Dew and root beer.  He is very, very sleepy. :)


May 29th 11pm: 24 hours ago.

This has been the worst – and the best – week of my life. Continue Reading »

Saga X: The Red Tent

last nights hotel

last nights hotel

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.
Joshua 1:9

saying goodbye to the MICU

saying goodbye to the MICU

Posted by Summer around 8:00am Wednesday, May 28th – Leaving the Medical ICU for good.

The nurses all love Scott, and were attached to his story and life.  They saved his life.  They were sweet and loving and fabulous all along.  He has made a big impact.  I invited them all to come visit later today!

Heading to surgery!

Sarah and I went down to a more private waiting room on the 8th floor.  Soon folks started arriving to surround us with love, prayers, and distractions.  By 10am, I got the call from a nurse in the Operating Room that all preparations were finished, and surgery was beginning.  There was a brief moment of panic.  As soon as it came, I pushed it away.

Girls brought baskets of food and gifts for Scott.  We ate.  We talked.  We laughed.  We cried.  New friends were made by all.  It was hard to not be thankful for these people in my life in those moments.  It was hard not to see all of the good around me.  I didn’t have much opportunity to delve into my fear.  To remind myself how intensely risky this surgery was.  That Scott was on a table, open.  <shudder>

So much of the day I lived like a fly on the wall, observing a room full of beautiful women – like a “red tent” of centuries ago, women sharing with women deeply and compassionately.  The day went swiftly by.  The O.R. nurse kept me in touch completely.  As ridiculous as it may seem, the whole thing felt like a dream, even in the moment, not a nightmare.  It was beautiful.  There was so much richness during that day.  Even in the moments of horror when my mind wandered to the Operating Room.

Just shy of noon, the Operating Room nurse called again and said they were just getting to the “problem area”, and things are going well.

keeping the babies happy at home

keeping the babies happy at home

My Dad was great about texting us pictures all the time.  It was such a blessing for us to feel a part of what the kids were up to, and to also be comforted by knowing they were having such a great time.

2pm, Summer: Nurse update: They moving right along, he’s stable, and things are good so far.

Just after 4pm: Nurse update: They’re truckin’ right along, still stable, things are great so far.  6 more hours to go.  Maybe.  Morale is good. Continue Reading »


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