Radiation-- Day 1

He's HOME!!!

And, believe it or not, he said he wasn't sore at all!  Tender Mercy!

Caden's first radiation appointment today was at 5:15pm.  We made it before his time (because I don't like to be late) and had to only wait for maybe five minutes before they said they were ready for us-- they were ready early, which I love.  They took us back to see the room, since this is our first time, but we won't be allowed any other time.  Because it was his first time, they did more work to make sure everything was precise, so they took longer than any of the other appoints will take-- 30 minutes, instead of the normal 15 minutes.

 I wanted a picture of the mold.  This is the mat that he laid on that is filled with foam.  Once they had him the way they needed him, they sucked out the air, which compressed the foam into the mold.  He will use this mold for the duration of his treatment, and then they'll release the cap that keeps the foam compressed and be able to reuse it for their next patient.

 This picture is difficult for me to look at.  It kind of looks like Goliath, even though I know it is going to "help."  He looks so small next to it, my Boy in the Bed.  I may need to change it to my Man in the Mold.  My goodness, I love this child.  I can't believe this is my life.

 Randy wanted a picture of the door.  Pretty intense.

I found myself staring down the hallway that Caden would come down when he was finished.  My leg was bouncing, my heart was pounding, my fingers were tap, tap, tapping, and I was ready to run.  Or barf.  Or both.  Next thing I know, I look over to see my Mister twitching in sleep.  How the heck can he sleep at a time like this?!?!  I guess I take on the anxiety of the whole family, and leave the rest to my family.

We left him in the Caution-- High Radiation Room right at 5:15pm, leaving the facility exactly at 6:00pm (Imagine how easy it was to breathe as the minutes ticked past the 30-minutes they said they'd take.  I could have powered an entire city with the wind my bouncing leg was generating).  Things were going great, he was playing with family in the pool and I was starting to think things might just be OK, when he was suddenly slammed with nausea and extreme fatigue at 9:00pm-- two symptoms they said to watch for, although they said they didn't think his nausea would be too severe.  Caden is nothing, if not predictable with his stomach issues.  Once again, he's going to bed with a green bag next to his lips and a mom that wants to crawl in bed to be near him.  And it breaks my heart.  One down, twelve to go...

Please pray for my son.  And for me.  I don't know if I can watch this..... I'm too tired, and I'm not ready.

"We don't like doing this to children.  It's just not fair."  Truer words have never been spoken.

Trek Updates

Caden's Pa, Monday 10:33PM:  "He's doing awesome."

Caden's Pa, Tuesday 8:53AM: "He's on Baby Duty this morning."

Caden's Ma, Wednesday 6:32AM: "Caden is doing awesome!  We have a super family and he is such a great helper!  So impressed with that boy!!!"

(Thank you for this angle, Mara)

My son is well taken care of and much loved.  Just over 24-hour before we get to hear his personal account!  And hug him deeply.

UPDATE:
Tri-City Herald, June 28th

The wind kicked up and the already dusty travelers got even dustier.
Thunder sounded and lightning struck, and they had to get down off a hillside, leaving their handcarts and supplies while they waited for the storm to pass.
And the blisters. Oh, the blisters.

Read more here: http://www.tri-cityherald.com/news/local/article158746419.html#storylink=cpy

“Right now, I’m doing this,” said Matthew Hall, 14, jumping from one foot to the other, giving each a few seconds of relief.
But for Matthew and about 130 other teens from the Richland Stake of the Church of Jesus Christ of Latter-day Saints, the wind, the dust and the other discomforts were nothing compared to the fun they had and the lessons they learned during a recent four-day trek near Plymouth.
The trek was meant to give them a window into what their Mormon ancestors experienced when they journeyed in the late 19th century from the Midwest to Utah — many of them pulling their belongings in handcarts — in search of a place to practice their faith.
Pioneer trek reenactments are a tradition in the church and are done throughout the country.
The Richland Stake group started its journey Monday on AgriNorthwest land outside Plymouth. By the time the crew wraps up Thursday, they’ll have walked and pulled their handcarts about 18 miles.
The teens wore traditional clothes, from vests and wide-brimmed hats for the boys to bloomers, aprons and bonnets for the girls. They camped out at night.
They “hunted” for game, using slingshots to hit cutouts instead of actual animals, and they “fished” for goldfish.
Each trekker got a bucket for his or her personal belongings, and they took turns on handcart duty.
It wasn’t all pure work. Several teens talked about the fun they had playing “stick pull,” a pioneer game. 
They also deepened bonds with one another, gained perspective and learned more about themselves and their faith.
The teens were divided into “families,” each comprised of about eight youths and an adult “Ma” and “Pa.”
“You really bond with your ‘family,’” said Nyah Miller, 15.
Logan Powell, 15, said the experience “has been very humbling.”
Matthew, with the tired feet, nodded. “That’s a good word for it,” he said.
MaryLynn Haggard, 15, said it amazed her to think that “the pioneers were so tough, they pulled even farther than we pulled. And in harder conditions, too.”
The Richland crew did have to contend with Monday’s storm, although it mostly passed them by — kicking up wind and sending some showers, but not raining them out.
One of the most moving parts of the teens’ trek was the “women’s pull,” in which the girls had to maneuver the carts up a hill without the help of the boys. It signified that many pioneer women had to do just that, after — for example — their husbands or sons fell ill or died.
During the pull, the boys stood along the trail with their hats over their hearts and the girls shouted encouragement to one another, even running back down the hill to help later groups.
Dr. Byron Burrup, a leader in the Richland Stake, said he hopes the teens gain a better understanding of their ancestors’ sacrifices and take lessons of family, service and prayerfulness with them to high school.
That seems a pretty good bet.
Caden Dirks, 16, said the trek has given him “a newfound respect for the pioneers. They were really strong.”
For Jacob Ritchie, 18, the experience prompted some reflection. “The simple things we take for granted didn’t exist at all (back then),” he said. “It makes you feel grateful for what you have.”

Read more here: http://www.tri-cityherald.com/news/local/article158746419.html#storylink=cpy

What a day!

Monday, June 26th

Richland Stake Youth Trek

4:56am- The kids could not wait another minute to play with their cousins, so they woke early to play.  This made the adults super happy.  {Yawn}  Caden woke this early for Trek, immediately got dressed, made his lunch, and then anxiously sat around till our 7:20am leave time.  When we asked if he was excited for Trek, he always responded that he didn't really know what to expect, so he didn't really know how excited he was.  The way I see it, if you wake up in the four o'clock hour on your own, you're pretty darn excited.

7:20am- I asked Caden if he'd put on his deodorant.  "It's all in my bucket (which was checked and packed in the trailer on Saturday night).  I'll get everything prepared when I get there."  Yeah, right, like you're going to want to pop those buttons, raise your arms, and slather your pits in front of your friends!  We captured a few pictures at the church before his friends started to arrive and then came home quickly for him to get fully ready.  You're Welcome Trek family!

It was difficult to drive away.  Knowing what we know, I wanted to stow away and watch him experience this amazing opportunity.  And, to be honest and totally real, I cried as I drove home, thinking, "This week is a glimpse of how it will be when he is gone.  Four kids with me while he's doing spiritual things away from our earthly home."  My gosh, it hurts so much knowing our time is so short.

It was also hard knowing that we were going to have some blistering weather.  While Ashlee and I were spraying sunscreen on our kids at the pool at 1:00pm, we were commenting how hot it was and how much we were sweating.  I said my thousandth prayer for my Caden right then.  I took this picture at 3:00pm exactly, anxious knowing that the hottest part of the day is between 4:00-6:00pm.

I shouldn't have had to worry about the heat-- a completely unexpected storm blew in before 6:00pm, drowning us in both water and worry.  It started with a loud clap of thunder, a blinding flash of lightning,  and then immediately we had sheets of blowing rain and hail.  A thousand prayers were offered in less than an hour.  

Once we found out that the storm was much worse on our side of the mountain, that the Trek members had to hunker down for only a few minutes while it rained, it was much easier to breathe.  They had a difficult time pitching tents in the wind, but everything was dry by the time they were ready for bed.  Bishop sent me a message at 10:33pm saying he was doing awesome.  I slept last night.

During the most stressful time, just after a series of consecutive lightning flashes, we started to smell smoke.  And then we saw the cause...

A home not 2 miles from our home had been hit.  It took four fire trucks to get it under control, despite the rain.  Oh, the wind!

Ashlee and I drove by from a distance after getting the kids to bed.  Still battling the blaze two hours later.  It was heartbreaking to see the devastation.

And then our day came full circle with a beautiful sunset.  Just as we experienced many weather experiences during this one day, so did we experience many emotions.  Adoration seeing Caden dressed in his Pioneer garb.  Joy seeing his excitement to go on Trek.  Sadness driving away, knowing I would not witness his amazing experience.  Sorrow thinking of our reality.  Fear and anxiety at the changing temperatures and weather conditions.  Relief hearing they were safe and dry and well on Trek.  Love having family here to distract my kids with play and fun and post-rain dancing.  And the absolute confusing hardship and relief it was to have Hospice come to our home.  I still felt this overwhelming desire to ask her to leave, that this was all just so wrong, yet knowing how much we need them.

Hospice will come into effect as soon as we are done with radiation on July 18th.  Insurance will not cover both radiation and Hospice at the same time, even though his radiation is end-of-life care, like Hospice.  So, they'll check back in with us in a few weeks.  They are able to offer a nurse weekly to come into our home, who will be the eyes and ears for their medical director and attending physician.  They can prescribe Caden comfort medicines that will be delivered directly to our door, so that we never have to worry about leaving him to get his medicines.  They are able to change those medications on a daily basis, if needed, to ensure that he is as comfortable as possible.  They can get us equipment within the day, things that can make him comfortable, whether that be a bed, a bedside table, a commode, whatever will make it easier for Caden.  There are also support groups and activities for grieving parents and siblings.  "Anything and everything needed to make sure that we are all as comfortable as possible during this difficult time."

It was agony as we talked about his passing.  Words needed to be spoken that felt like fire as they left our throats.  We will have the option of having him home, or choosing to have him pass in their hospital setting.  She said it is completely up to us, since it varies on a situational basis.  Some want it to happen at home, while others wouldn't be able to live in their home if their loved one passed there.  I'm not sure what we'll do.  Mostly because it's too hard to think about right now.  And it hurts so deeply knowing that we will have to do these hard things soon.  As I listened to her say that once he's gone, we just need to have the nurse come and pronounce him dead, that they'd call the funeral parlor and take care of the rest.  I didn't cry, which surprises me, because it all just felt so surreal, like we were talking about someone else.  It can't be my son that we are talking about, right?  Oh my gosh, my son is dying.  I drove Randy to the airport moments after our meeting.  Our drive was silent and heavy as we both processed what we had just sat through.  Reality is cruel and unforgiving.  Reality is gut-punching us when we least expect it, and ripping out our hearts while we try to live a normal existence.  I can't believe how much this hurts, and how difficult it is to find something good at times.

We had a meeting with Hospice yesterday.  We talked openly about witnessing our child die while they help keep him as comfortable as possible.  Oh, what a day!

Anniversary Adventures

Because the water levels are higher than they've been in seventy years, it's picked up a ton of debris long settled along the shore, sending it floating down the river.  Because of this, and the age of our new-to-us boat, a few days after we bought it, it went into the shop for repairs.  Due to the lack of boat shops in a place that has three rivers and many boats, they were a bit backed up-- 60 boats were ahead of ours to be fixed.  By the time we got it back yesterday, we were ready to get out there and play.  Time is ticking, my friends.

 Brennon still has a hard time wanting to be on the boat.  He's getting better, but there still ended up being some tears.  Heavy sobbing and horrible asthma without an inhaler in the car (I had taken it out the day before, when he found out the inhaler he had in his pocket for Scout Day Camp was actually at zero) forced me to take him home while the other kids played.  I think it worked out well for all of them-- Brennon wasn't complaining about how fast we were going, and the other kids weren't complaining that we weren't going fast enough!  Win-Win!!

 Randy got some great pics-- he is so good to me.  Trying to give them the best tube-catching-air experience, he ended up wearing them all out.  By the time I got back (it ended up being an hour, round-trip) they were all telling me how much their hands, backs, and legs hurt.  Randy admitted that he may have gotten a bit carried away.  I don't see them complaining in these, though!

 They can all barely walk today.  Brennon used it as just one more reason why he's glad he got off the boat early.  The kids asked if we were going today, but since it was our Anniversary (17 years, can you believe it!) we didn't go.  Instead, Randy and I each got a 60-minute massage.  I giggled as I got onto the table, relatively pain-free, thinking of my complaining kids at home.  Brennon actually did an air fist punch when we told him we had too much planned for our day.  Not to worry, we have plans to go tomorrow.  We'll bring the boat, our friends will bring their kayaks, and we'll all have a grand time.

I have commented to Caden many times that we need to take him to get his hair cut.  Because we are trying to fill our days will all-things fun, it has been put off for a bit. 

 I'm debating whether he needs a cut at all, after seeing these!  Look at that handsome face!

The wind blown look has never been so striking!

Shelby woke this morning and immediately told me how difficult it was to even walk down the stairs.  She complained many times during the day about her legs.  It never dawned on me until she was at her Blue Belt Testing, but Oh My Gosh, she was put through the ultimate test to earn her Blue Belt today.  She was expected to do splits (which he singled her out and told her to go lower), a kicking combination that involved some high kicks, one right after the other, and eventually break a board doing an intricate kick after a jump.  Watching her struggle to walk during the day and then barely struggle there gave me a glimpse of just how determined and fierce my Shelby is.  There were a few times I could tell her legs were truly burning, but she did incredible!  The fact that I know how much they had been hurting all day and then watching her perform so perfectly makes me even more proud of my Beautiful Blue Belt.

Red Belt, Brown Belt, Red & Black Belt, and then finally Black Belt.  My girl is determined to earn her Black, just like Grandpa Burrell (even though his was in Kenpo Karate, not Taekwondo).

Master Roach awarded Caden an honorary Black Belt today.  "You've earned this, in my opinion."  I tried my best, but I couldn't hold back some tears.

I'm the luckiest girl in the world.  I'm so grateful for these days of play without cancer pain.  We're playing hard.  And have the sore bodies to prove it!

Tattoos

This is going to be a vent post, as well as in informational recording of his appointment yesterday.  It did not go at all how I thought it would go.  I realize now that we have been very sheltered and pampered at Seattle Children's.

We arrived at our appointment on time, scheduled to watch an informational video about what to expect.  Caden didn't much care to watch the video, but I soaked it all in.  I was fascinated to see how they have a special person that works with the oncologist to set up the exact direction/angle to shoot the lasers.  The software that they use is pretty amazing and wildly interesting.  I have seen my share of Caden's CT scans, so it was cool to see how they use those scans to administer the radiation to the exact spots.  Truly, I watched that movie thoroughly.  The only thing that stuck out to me was that they take scans every five treatments.  Other than that, I felt like it was pretty straight forward.

They took us back to their "mapping" room.  She showed us the CT machine, which looked identical to the ones at Seattle Children's, minus the Buzz Lightyear stickers all over the front.  She showed us the mat that Caden would lay on, that would eventually become a mold for his body.  They would get him into the position they needed him in, have him relax as much as possible, suck the air from the mat, which pulled the fabric tight around the foam, making a mold of Caden's body.  He will be placed on this mold each and every time, making the process a little faster and more accurate.  They will still double check everything each day.

She then started talking about what she was going to do that day to map everything out, mentioning the word "tattoo" many times.  Here's where we have been sheltered at SCH: Caden has always been marked for surgery.  Every.Single.Time they have used a purple marker on him, similar to the ones they use when they pierce ears.  If anything needed to stay for a few days, they used a Sharpie marker and then just colored over it each day.  That was what we thought she meant by "tattoo."  She told us he'd be about 30 minutes, and then showed us to our waiting room.  As we were sitting on the chairs that looked stylish but felt dang hard, we talked about her multiple use of the word "tattoo," and if that meant what it usually means.  I asked Randy if he thought she was serious, to which he replied that he thought it would be more than just the marker, but not a real tattoo.  25 minutes later, we were brought into a room to wait for him, as well as talk with support nurses that are there to answer our questions.  We had barely sat down when Caden was escorted into the room.  I immediately noticed his face-- I knew something was wrong. 

I rushed the "meeting," wanting to whisk him from the room.  Showing just how naive we were, Randy asked how long the "tattoos" would last, to which she looked incredulous at him, "Forever."  Caden did not know.  His face fell ever so slightly, and he began to stare at the table.  My rage ignited--  HOW DARE THEY MAKE ME LEAVE THE ROOM AS THEY DO THAT TO MY CHILD!

Caden begins radiation on Thursday.  That ink, placed just below the surface of the skin, will light up with their equipment, making it easier for them to get the positioning right.  I would have allowed it, absolutely, but it would have been nice to know that that was what they were going to do.  We didn't have any clue that that was what they meant.  This is our first time with both Radiation and a facility other than a children's hospital-- we didn't know we needed to ask more in-depth questions!!!!!  I have never been asked to leave the room, unless a doctor was checking Caden below the belt- or surgery, of course- so I never thought that they would do anything like that with me not right there to support MY CHILD!!!!!  Caden may not ask to hold my hand every single time he is poked any more, but he has always wanted me in the room.  I know I wouldn't have been able to take the pain away as they shoved that thick needle into his stomach FIVE times, but I would have been there to support him.  Instead, they asked his parents to leave.  Policies need to be put into place EVERYWHERE when it is a child.  I understand that most patients they see don't need "support," but this is not just anyone, this is MY son.  He may not have wanted/needed me there, but he should have been given the option.  He should have been told that he was going to be given permanent tattoos, that it may hurt, and whether he wanted one or both of us to stay.  Not once did they ask whether he understood what it meant, or what he wanted at all.  "Do you have any questions" is too broad.  Sometimes you don't even realize that there are questions that should be asked, because you don't comprehend the situation for what it really is.  It feels like we have been through a lot, yet not enough to fully understand. 

I asked him if it hurt terribly.  "Yes.  Especially the one on the left.  That one was bleeding."

I kid you not, it felt, at that moment, like I had gotten that tattoo.  And it fueled my rage even more.  HOW DARE THEY MAKE ME LEAVE THE ROOM AS THEY DO THAT TO MY CHILD!

(One on each side, with three down the center front.)

They are only just dark spots that look like freckles, not the entire circled star of the Sharpie (which is what I thought it was going to be, Sharpie!).  And, honestly, they are not going to be the most noticeable thing on his stomach.  But, it's the principle of it all.

You better believe I will be using a few choice words when they have me fill out the "What could we have done differently to make your experience better?" portion of their survey.  I just don't understand how they couldn't have been more sensitive.  I mean, the kids is dying of cancer, getting freaking radiation during the first few weeks of his Summer vacation!  The least you could have done was let us sit in the room with him!

How is Caden?

On the morning that Randy and I were to head to Seattle for the care conference, Caden prayed for our morning family prayer.  "Heavenly Father, please bless that we hear good news today.  But if not, please let us be OK with it."  As we were telling him the detailed report of our meeting, telling him that there were no other options after we did the radiation to control the growth to give us more time, he simply said, "That sucks," and started to cry.

As the days have gone on, Caden has shown incredible courage and strength.  Truly, that boy lives each day to its fullest.  There have been a few times that we have questioned him about how he's doing or feeling, but each time he tells us he's OK.  As the days go on, despite how I think he should or would react, he's proven to us that yes, he really is OK with it all.  He knows the truth-- the words have been spoken aloud enough-- and he's OK with it.  Looking back on every single aspect of this, he truly is the strongest, most courageous boy I have ever known.  His faith is such an example to me.

We have noticed that Caden has been more active and has taken less pain medications recently.  It has been almost a week since he's needed to take anything on a regular basis.  He even told me this morning that it has been about four days since he's taken anything at all.  He said he's not sure whether the pain has lessened, or if he's just gotten used to the constant pulling/pressure/cramping at his belt line.  We've seen this before, where the pain intensifies and then lessens, so I'm not thinking it will stay away, but I sure will take this reprieve.  Our time is so much more fun and special without the fear and worry of pain.  Worrying about and witnessing his pain is what cripples me the most through all of this.

As I sit here reflecting on my Caden, I listen as he and Keilie play together.  I hear them calling out requests to one another, playing well together, laughing together and my heart swells.  This is what Summer feels like.  How grateful I am to stay close to home as we make our Last Stand.  We are still Master Arguers, but our home is filled to capacity with love and laughter and joy.  Like everything these last three and a half years, Caden's attitude makes everything just a little bit easier to bear. 

He is my hero!

Parent Win

I had one of those "Parent Win" moments last night that feels amazing.

Wanting to keep my kids' reading momentum going, and also wanting to give the kids an extra incentive to read this summer, I have given them a challenge: for every hour they read or listen to a book, I'll give them a dollar towards a family activity.  They were all for it.  We jumped in the car on Thursday afternoon (less than an hour after they all got out of school for the summer) and headed for the library. 

One of Keilie's teachers helped me see that sometimes it is easier to listen to a book than simply read one for hours and hours.  It is even an added bonus if you can listen to the book being read while following along.  So, armed with this knowledge that has really helped Keilie find joy in books at all, I found as many books as I could that they could follow along while they listen.  Oh, and it is also a stipulation that they earn money for the books that I choose.  Keilie and Shelby would most likely try to get away with Kindergarten books, read in mass quantities, for $50/book!

Tyson is pretty advanced in his reading. {Contented Sigh}  Knowing that Brennon had finished reading The Indian in the Cupboard this year, and remembering that it was one of my favorites when I was in Third Grade, I went in search of that one for Tyson.  Paperback book found-- check.  Book on... TAPE found-- check. 

That's right, my friends, our local library has a book-on-cassette!!  The only way that he is able to listen to it is in our Yukon.  He's even learned that you rewind (Remember that word?) Side One, listen to it, and then it is ready to flip over to listen to Side Two.

Parent Win:  He asked if I would help him listen to the book again before bed, after listening to it for two hours earlier yesterday morning.  I asked him, "Tyson, are you wanting to read the book to get paid, or do you like the book?"

{Waiting on pins and needles, holding my breath in hopes of just one answer}

"Because I like the book."

I feel like a million bucks!  It is the second time in as many months that one of my sons has said they like a book of my choosing and gentle insistence to read.  The first was when Caden read all of the Gregor the Overlander series by Suzanne Collins while in Seattle.  I have been telling him for years to read it, that I knew he would enjoy them.  With enough time on his hands, he did.  And he liked it.  He is reading The False Prince by Jennifer A. Nielsen now-- another one I know he will really enjoy.  Keilie is reading one that I recently found and LOVED-- Stargirl by Jerry Spinelli.  I LOVE the message of that book!  I hope my kids learn to love reading as much as I.  Even if I have to bribe them with movies, museums, water parks, and roller coasters!!  I feel no shame.

Radiation

It was nice to immediately feel at ease when the radiation specialist walked in today.  I knew before he shook my hand, as he was shaking Caden's first, that I was going to like him.  It was even nicer for him to start off our meeting with a special request from friends that lived across the street from us on The Loop, that he take good care of us, and give us their love from Minnesota.  Hi, Karlee and Kyle!!!  Kyle was in his 3rd year of medical school when he did rotations with Dr. Jones.  They have remained in contact, enough for Kyle to reach out to him when he learned of the connection.  That made me like Dr. Jones even more.  I know we are in good hands.

So, here's the skinny:  After agreeing with him on his assessment of Caden's case, we have agreed to meet with him on Thursday for a CT scan to map out the exact location of all known tumors.  He will put measurements (kind of like a latitude and longitude kind of thing for his body) into the system, so that we can radiate the exact spots each time.  Each and every time, they'll have the laser set based on those measurements, and then double check each place with an x-ray that it is still correctly placed.  He said most of our time spent each day will be to double and triple check everything.  "You can never take back the radiation, so we want it precise the first time."  To that I say, Thank You, Kind Sir!

Caden will leave for Pioneer Trek on Monday.  Everyone is well versed on Caden's condition, but everyone is also doing all they can to make sure he goes.  Some peers even talked about being willing to push him in a handcart or even carry him, should he need-- they are that amazing!  We know it will be a life-changing event, one that will build him up for days ahead, so we are all doing all we can make it happen.  If anything pops up (intense pain or other cancer side effects), we have three people that will contact us to come and get him.  Dr. Jones does not foresee anything happening between now and then, but you never know with cancer.  He feels completely comfortable allowing Caden to wait, though.  Caden will begin radiation the Thursday afternoon he returns from Trek.

Standard end-of-life care is 13 doses.  He will begin 6/29/2017, with his last treatment 7/17/2017.  It feels very doable right now.  I left with answers, feeling better than I have for a few days.  The end result is still inevitable, but getting there doesn't feel AS daunting.

I also got a call from Hospice today.  We met with them in March 2016, but it felt WAY TOO wrong-- we still had many other options.  It still feels wrong, but now we know we really do need them.  I have a meeting with the nurse, here in our home, on Monday (conveniently planned while Caden is away).  We will go over all of the particulars of upcoming days, even though we don't know really what is going to happen.  I agree that we need to have relationships in place before it is more stressful.  But, my goodness, it still feel so surreal.  Hospice is for OLD people that have lived a long, full life, not 16-year old boys.  Hospice is for people that have their great-grandchildren surrounding their bed, not four younger siblings that can't imagine their lives without their older brother.  I cannot believe this is my life.

It has been much less heavy in our home as days go on.  Less forced laughing, less trying too hard with our jokes, less anxiety-filled arguing and crying.  We are trying to fit in as much fun as possible while we wait for the inevitable, and it is getting easier to believe the fun is real.  I'm grateful for that.  Because one thing that will never change: we will never stop having a blast together.  We are a living, breathing cliche-- Together really is our favorite place to be.

Guitar Love

Ever since we've been married, I've heard more than one hundred and sixty six million billion times that Randy would love to play the guitar.  Maybe one or two more times than that, actually.  When Caden said he wanted to learn, I think Randy actually did a cartwheel on the front lawn, he was so excited to live vicariously through Caden.  It has always been a dream for him, is all I am saying.

When I asked Randy what he'd like for Father's Day this year, he told me he got what he wanted: a boat.  Since that negates the kids being able to give him something, I decided to see what fun ideas I could find for them to give.  When I saw the example we chose to copy, I knew we had hit gold.  I got all of the supplies (after literally counting each candy item out and getting just enough) and we worked our copying magic to give him a gift he has always wanted: a Guitar.

 The kids did 100% of the work for this bad-boy!  It's hard to see it from the picture, but it actually has six jute strings!!!  I showed them the example, and they took off!  When I asked what the pun should be, we all threw around some ideas.  Caden screamed out his as soon as I asked, and we all agreed it was genius.  Say it out loud, "You Guitar Love."  Get it?  The Boy in the Bed has words!

Wanting to document, I asked them to look up and smile.  I noticed that Shelby's eyes were closed, but didn't notice Tyson's face until after taking the two pictures.  He was posing with his "smolder" face.  They are slightly different, so we'll call this one, "The Smolder," 

 And this one, "Magnum."

We had such a fun time putting it together, although there was A TON of arguing.  My goodness, we sure can argue-- even if we are crafting a masterpiece!

Just to document and remember: There are 72 gold-wrapped Ferrero Rocher candies on that wicked instrument.  As we were getting ready to watch a show,  I asked Brennon to go put it in our room, forgetting to ask him to shut the door.  About 15 minutes in, I left to go and put on some comfy pants.  As I was walking into our room, I noticed Mira's tail.  About a step later, I realized what she was doing and loudly gasped; enough for everyone to come running.  I hurried into the room to find that FIFTY SEVEN of the candies were gone.  In 15 minutes.  Without a break for a drink!  The girl has a weakness for chocolate and bread.  Many Google articles said she would be fine, so we didn't take her to the vet.  She has been fine since, but my goodness, the guitar only lasted for about 2 hours!

Happy Father's Day, Randy!!

You Guitar Love!

Cheer Sesh

I love winning.

Like, a lot.  So, when Randy found out that he'd won a FREE six-inch sub from our local Subway, I had to celebrate.  Randy was Customer of the Week!!!  And let me just say, he barely stopped me from squeezing into my cheerleading uniform.  Busted can of pasty-white refrigerator buns is not his favorite look, I guess.  I'm fairly certain he hid my pon-pons, last minute, too.  He told me that I was not allowed to cheer and scream or even clap.  He even stole my daily-used line, "Just fill your mouth with food and be quiet."  Sometimes he is such a party-pooper!

So, I took this picture real secret-like and cheered for my Mister in my head.  And I screamed and cheered and clapped and leaped until I was tired.  It was beautiful.  And graceful.  And not at all cheesy or lame.

So there, Customer of the Week that does not like to cheer or party!

Doc-tah Jones

We got a call yesterday at 3:00pm from the radiation oncologist in Seattle, telling us that a doctor in Kennewick is very interested in working with us.  He is actually a sarcoma specialist, which is pretty cool.  He told us that we should be hearing within the next few minutes from him.  We didn't yesterday, even though we kept my cell phone close at hand the entire night.  And all day today.  24- hours after the call with Dr. Ermoian, Randy decided to call the office of Dr. Jones himself.  I can't help but hear it in my head and say it out loud like the boy from Indiana Jones-- Doc-tah Jones.  His name is not Indiana, in case you were curious, it is Guy.  The receptionist saw that we had a referral and told us that Doc-tah Jones could see us on the 28th.  "Ummm, no, I think he wants to see us much sooner than that.  Could you talk with him and call us back?"  Five minutes later: "How about Monday at 11:30am?"

Done!

I guess there was talk between colleagues about a possibility of doing two to two and a half weeks of treatment, using higher doses of radiation since the goal is not cure, but stabilization.  I think I would prefer that.  I would rather have him sicker than normal for just two weeks, than to have him nauseous for the entire 5-6 week, possibly losing too much weight in all that time.  We can do anything for two weeks.  I say that now, on this side of even having him try it, but that's what I think as I sit in my comfy desk chair, sipping on my flavored water.  It feels nice to have even just a date to meet with someone that could help.  Not cure, but help.

It's weird how it feels that life should just stop after news like that.  Laundry still needs to be done.  Dishes still need to be washed.  Grass still needs to be mowed.  I do it because I need to, not because I really care.  Sometimes I do it just to feel normal, because that is what I used to do before the news.  Life moves on even though it feels like we're characters in someone else's movie; a romantic comedy drama that quickly turned into a horror.

Confusing

I thought getting the Scan news was hard.  That was easy compared to telling our kids the truth-- especially Caden.  I did not know how he would take it, but I almost wish he would have raged, and screamed, and kicked, and punched.  Instead, he just cried and cried.  It was hell to watch.  Keilie started to name all of the things that Caden would not get to do: mission, marry someone (she doesn't even realize that he hasn't had interest in dating, so he's never had a girlfriend, never had a first kiss), pester her husband, meet her kids.  It broke my heart to see how she's grown.  One of the times that we found cancer again, she blurted out, "I don't want to be the oldest."  This time, when the news was "official," she looked beyond her own suffering to see Caden's.  Shelby is the one that raged, and screamed, and kicked, and punched.

We grabbed a notebook for each of our children to write in, prompting them to write all that they feel, no matter if it was just a doodle.  How grateful I am that back in 2007, Randy sat down to start a blog and then made me learn it and take over.  How grateful I am that we have 9 books on a shelf right now that tell the story of our lives-- the good, the bad, the raw, and the ugly.

I thought that yesterday was hard, that it couldn't get much harder until the end, but I was wrong.  It was hard falling asleep last night, even with sleep aid.  I have started a very real schedule of sleep aid every night.  I kept thinking, "I wish I could sneak up to Caden's bed and just watch him.  I wonder if he fell asleep quickly, or if he is upstairs having a hard time falling asleep because he is thinking.  I wonder if he is scared tonight."  I was relieved to hear that he had gotten rest.  And then it was time for Shelby to say our morning prayer.  First thing she prayed for: "We are thankful to spend time with Caden before he dies."  And it felt like a bullet in my heart.  I almost didn't want to look at Caden when she finished, didn't want to see his pain at hearing the words spoken out loud.  But I did.  Two bullets.  And then I saw him woodenly get out of the car to stand on the sidewalk for his last day of school, face pale white, no expression-- devastated, and freaking scared.  I personally regret giving him to option yesterday.  I feel like we made a mistake, that we robbed him of his last day of Sophomore year.  Regret feels awful in the heart.

It is so confusing to be so devastated over my child praying thanks out loud for something that I pray for inwardly every single day.  My first instinct was to be MAD at her.  And then I felt such guilt for being mad that my child knows that she can pray for anything to our Heavenly Father-- who am I to tell her what to pray for and when?  I had to inwardly talk myself out of my anger and guilt and confusion.  It still hurts.  She is so young, and hurting so much, that she doesn't realize that the words that she innocently spoke to her Heavenly Father caused SO MUCH pain.  Her childlike brutal honesty was a slap in the face that burst my heart.  I feel so inadequate to help guide and instruct.  I have no clue what the heck I am going to do with myself, let alone children that need me.  I am so tired.  My pain is so big.  My thoughts continue to be consumed with Caden, now, both physically and emotionally.  I don't feel big enough to do it.  I am confused.  And scared.  And am trying to hold together during a pain that hurts so much already, but is only going to get worse.  I cannot imagine worse.

I have heard that the pain never really goes away, but it does get easier as time goes on.  But my question is very much the same as my children's: How can I live without my Caden?  What is our family without Caden?

How am I ever going to be able to move on?  I feel like I am dying.

The Secret

Our meeting was both a scrub and a rip.  Dr. Hawkins presented us with some chemo options-- all were things that have shown promise in some, but did not have enough evidence or proof that it would do anything but make Caden sick.  We are not interested in going down the list of chemo options, checking off the ones we've tried, trying all that are available.  We just don't want what few remaining days we have with him to be sickness without cure.

One option that was presented, something we are calling our Last Stand, is radiation.  Here's the thing: words were spoken that we already understood from the Scan-- they do not believe we will ever find a cure for Caden.  Dr. Hawkins said it would have to be a pretty big miracle.  We all see the evidence, we all know the equations.  Chemo does not equal cure, immunotherapy does not equal cure, tumor removal does not equal cure, so it stands to reason that there just isn't a cure.  Even when we thought we had a home run, when we were told that the first massive tumor had zero live cancer cells in it after resection, it never shrunk; it was still a massive, two-pound plus tumor.  There was evidence that the second batch of chemos he was given were killing the cancer, and may have done much more if we would have done more than just one Round, but it was not eating up that massive, 2-pound tumor either.  And, as we can all plainly see, nothing is really killing the cancer.  Radiation is an option not to cure him, but to stabilize the tumor growth, hold off the pain for as long as possible, and give us more time to say goodbye.  Our Caden is dying, and there is nothing we can do to stop it.

If we lived in Seattle, the radiation choice would be simple: Proton Therapy.  But, because there isn't strong evidence to show that Proton will cure him, because they don't know, really, which is best for Caden's Ultra Rare Circumstances (this is the first and only case that has gone anything like this in the world, ever) we are looking to go the Photon Therapy route, since we most likely will be able to do it closer to home.  There is no evidence to prove that we should take him from his home, his family, his dog, and move to Seattle.  Proton Therapy is very specific, targeting only the spaces they choose and nothing else.  Photon is also specific, but it can also touch around it, like the halo of light around the target.  But, again, words were spoken that we already understood: this will only help what we are targeting, not the other tumors that we all expect to grow elsewhere in his body.  Tumors that may actually be growing now.  Tumors may grow as we are trying to stabilize growth of the known ones.  Radiation is not a cure.  There is no cure.  We are hopefully choosing to give him a better quality of life while he is here, buying more time as we sprint hand-in-hand to his finish line.

We will find out more tomorrow from the Radiation Specialist.  He is reaching out to colleagues here in the Tri-Cities and in Yakima, telling them of our "case," hoping that someone will say yes.  Treatment would be 5-6 week, Monday through Friday.  They expect that he will be fatigued and don't expect him to be too nauseous.  But, because he is the most nauseous kid Sue has ever seen in her 20 years experience, we were told that if it becomes too much, he can always stop.  Because there is no reason for him to be sick when we know the end result of all of this.  Our Caden is dying, and there is nothing we can do to stop it.

Because Finals are so important to him, we are choosing not to tell him the whole truth until tomorrow.  We found out today that he has one more tomorrow, so we are waiting.  It may just kill us, this waiting.  We want to get it over with.  We want to start grieving.  Together.  We want him to have all the time he needs to accept it all and die on his own terms, as he wishes.  It is hard to keep this "secret."  It is confusing to want to give him what he desperately desires- this normal high school experience of Finals- but know that what you have to tell him is much more important.  But, it matters to him, so it matters to us.  So we keep him young just one day more.  Tomorrow, after his final day as a Sophomore, everything changes.  Our sixteen year old son will hear the words, "You're dying, and we can't do anything to stop it."

UPDATE:
We gave him the option of hearing the details of our appointment today, or we could wait. He wanted them today.

He knows. And it was just as heinous as you can imagine.

Flappy

I got a call from the Elementary on Tuesday, expecting it to be the School Nurse.  Many times it is for Brennon (honestly, as I wrack my brain, I don't think she has called for anyone but Brennon)-- he had to take two puffs of his inhaler, he got hit by a ball on the playground, he says his head hurts and needs some medicine, etc.  On Tuesday, it actually was Brennon.  "Mom, I fell on the playground and hurt my knee.  It was on the new ground and my skin is really black.  I have flappy skin.  They wanted me to call you."  Having him call me did the trick, I went immediately to get him.

Randy and I doctored the knee for a few days, watching it very closely.  It actually was bad, I'm glad they had him call me; the flappy skin was actually a cause for concern.  Two mornings after it happened, I knew I needed to scrub a bit to get some of the debris out that had risen to the surface from the night before.  I was scared to do it, scared to tell him, scared to hurt him.

"Brennon, I need to scrub this with hydrogen peroxide.  I will make it very quick, but it needs to be done.  It is getting infected because there is still rocks and dirt in it.  I need you to take a deep breath and hold it while I scrub.  I will go back-and-forth only five times, and then I will be done."

As he looked at me with horror, his eyes filling with tears, he asked me not to.  "Mom, that is really going to hurt.  Please don't do this."  I told him that if we didn't get it done at home, he'd had to go to the doctor.  Within a breath, he said, "Mom, I have found that if I pinch myself really hard, it takes away from the other hurt."  And so he pinched his calf while I scrubbed his knee.

When I told him I was finished, that he could stop, his breath came out in a huff.  "Is that all?  Mom, I thought you were going to rip off the flappy skin."

I was shocked.  One, that he mistook scrubbing for ripping off a fat chunk of skin.  And, Two, because it didn't take him very long to go from cringe to courage.  He just took a deep breath, pinched himself hard, and trusted me.

It took many doctor sessions, but I am happy to report that his knee is much better.  My Brennon may not like fast boats or rollercoasters.  My Brennon may not like to try new foods.  My Brennon may not be as outgoing, adventurous, or as fearless as others.  But he has his moments of intense courage.  We may not see his courage often, but when he shines, it is blinding.

I am going to follow his example.  I am going to hold my breath and pinch my leg while Sue and Doctor Hawkins doctor us today.  Time will tell whether they scrub or rip.

Apostle

We have known that an apostle of the Lord, Elder Neil L. Andersen, was going to come for a special conference on Sunday.  After our news on Wednesday, Randy asked Caden's primary doctor, a member of our Stake Presidency, if Caden could possibly get a Priesthood Blessing.  The answer was the one we anticipated- he could not.  Knowing that every minute had already been planned out, we knew to expect this answer, but Randy's typical response was the same, "You'll never know unless you ask."

Caden's pain started on Saturday morning.  Like the last time we went to Silverwood in July 2015, we had just found out that the cancer had returned and he did not feel well.  But, just like last time, he did not let that stop him from having a good time.  Because we played so hard the day before, Caden's pain was pretty severe on Sunday morning.  Even after prompting and urging from Randy, Caden still did not want to go to the conference-- he did not think he would be able to sit for that long.  I have mixed emotions about him not going.  On one hand, I really wish he could have been there.  But on the other, things would not have come together the way they did if he had been.

Knowing that the building would fill up quickly (we knew of people planning to arrive 2.5 hours early) we decided to take the memory foam cushions from our kitchen table to transform the "hard seats" into "comfy seats," allowing us to leave only one hour before the beginning of the meeting.  We walked into the back, found six seats quickly on the very back row, and felt pretty genius at our inspirational idea.  As it turns out, those cushions were not necessary-- they saved those six seats and stayed empty the entire meeting.

20 minutes before the start of the meeting, Randy was approached by a friend from the ward.  I thought he was coming to give us an "I'm so sorry," instead giving us a, "Would you like to meet him?"  I could not believe it.  It was more than I had hoped for.  And it just kept getting better and better.

I felt like I was floating as we were lead back to the room he was in.  As I watched him shake the hands of my kids, I was wishing deeply that Caden could be there.  He was asking their names, and repeated it back to them, telling them he was glad to meet them.  When it came time for me, he shook my hand, saw that I was choking back torrential sobs, and said, "I'll just call you Sister."  He never did get my name.

It was at that time that I saw the others in the room:  The Dan and Kristi Ostrowsky family.  Their 12-year old son, Landon, suddenly and unexpectedly passed away in December.  We were in Seattle after Caden's surgery when we heard the news that he was being flown to a hospital just moments away.  Even though our stories were much different, and although I didn't know exactly how Kristi was feeling, I knew that it was hard to watch your son be packed away in a jet, bound for a hospital far away, not knowing really what was or would happen.  Our friendship has grown out of shared sorrow.  We would later find out that our meeting with Elder Andersen was because they were kind enough to share their experience with us.  I will forever and eternally be grateful for their generosity.

He talked with us all.  We found out that this big world was made smaller by his being Dan's Mission President in France many years ago, and his companion speaker growing up just South of where Randy served his own mission in Brazil.  Portuguese was spoken between Randy, Elder Anderson, Elder Koch, and our Stake President, President Powell.  It was a neat experience to have my kids hear Randy speaking and understanding another language.  He asked us how far away our home was, and upon hearing that it was too far for us to simply grab Caden, he pulled out a personalized card and envelope and wrote Caden a little note.  I stared at his hand as he wrote, thinking, "And apostle of the Lord is writing my son a letter!"  He slid it across the table to Keilie, "Will you give this to your brother?"  And then I was watching his lips as he spoke words that I still cannot believe.

"I am going to add Caden's name to a special Prayer Roll for the session that the Quorum attends on Thursdays."  And I thought, "The Quorum of the 12 apostles are going to pray for my son on Thursday."  And then I bowed my head as Elder Neil L. Andersen said a prayer for both families in the room.  My heart was overflowing.  My head was thumping from trying to keep my sobbing quiet.  I was sitting within arms' length of an apostle as he prayed for my sweet family, wishing my Caden could be there then.  However, because he was not, he got a handwritten letter and a promise to be prayed over by 12 of the Lord's servants.  It was the most beautiful moment.

It still is a little confusing how we ended up sitting on the stage with him.  He looked me in the eye and said, "You stay with me."  So we did.  People scrambled to do his bidding as he asked for more chairs to be brought for us.  Keilie, Brennon, and Tyson were sat on three seats next to the Stake Presidency on the left of the stand, while Randy, Shelby, and I were seated directly next to Elder Andersen on the right.  I was a mess.  I did not want to be seen by more than 1,566 members (the counted number of those in attendance) of our Stake.  But it was amazing to continue to sit in his presence, close enough to touch.  At one point, Elder Andersen even leaned over to whisper to Randy a shared inside joke!

(Shelby on his left)

Although it is something that I wish to forget, I do want to document this little "funny" story, although it is too soon for me to laugh at it just yet.  I am still quite mortified.

Because we did not know we would be taken on the stand with him, we didn't have time to prepare our kids.  We did not have time to threaten impress upon their minds to be good.  This meeting was being broadcast to other buildings, as well as being broadcast in our own building to those too far to see, and in other rooms.  For the record: my kids are really quite good during Sacrament meeting.  Because it was going to be a bit longer than our usual meeting, we allowed them to bring paper and pens, but they were left with our cushions on the back row.  So, my kids sat reverently the entire meeting.  I was very proud of them.... until the closing song sung by the choir.

Keilie noticed on the screen at her feet that she and her brothers were being recorded on TV.  Probably because Tyson had loosened his tie and was flipping it around in huge windmill circles.  I watched in horror as she waved for them to notice.  She wasn't using massive hand gestures (definitely no bigger than the windmill tie!), but it was very distracting seeing movement at all from the girl on the front row of the stand.  And then came the moment where I was literally praying to my Heavenly Father to strike my children down, maybe cause a deep sleep to come upon them.  Tyson decided that this would be the perfect moment to give Brennon bunny ears.  Brennon did not like that very much, so he started to slap Tyson.  And so, right there, for all to see, were the Dirks' kids cat fighting during the closing song, while their mom watched in horror across the stand.  Take. Me. Now. Heavenly. Father.  Yes, those are my kids.

The past month has given us many Tender Mercies from our Heavenly Father.  Caden's birthday party.  Catching the Fly Ball on his birthday.  Silverwood on Saturday.  Elder Andersen the Sunday after the news.  And even The Study, that gave us an entire six weeks of hope and happiness.  It was not the miracle we wanted, but it was the miracle we needed.  Not once did we worry about him.  Not once did we question whether he should be wake boarding, or being thrown around in a raft going 30 MPH on the water.  Not once did he feel pain, or sickness.  I'm not sure what would have happened, but we had plans for another major surgery in April.  Maybe he would have always gotten this tumor in his pelvis, but because of The Study, we did not cut his stomach open again in April just to be told another had grown soon after that was inoperable.  Instead, we played and had fun and lived a good life.  We lived those six weeks with love and abandon and joy and hope.  Our Heavenly Father knows us, He sees us, He loves us, He is leading us.  I LOVE Him.

I am the luckiest girl in the world. 

Silverwood or Bust!

A few weeks ago, Shelby's Kids of Steel teacher sent home a schedule for upcoming events-- one of which turned out to be a Tender Mercy from the Lord: Silverwood Theme Park.  We traveled the three hours and ten minutes to hear Shelby play on stage as Silverwood opened, then we had the rest of the day to play.  No way would we have made the decision to go after Tuesday, but because we had the tickets purchased and a Shelby that had a performance, we went.  And had a great time playing!

As soon as Shelby was done playing, we released Caden and Keilie to hurry to the rollercoaster they were most excited about while we cleaned up and loaded the trailer.  Because it was now 11:30AM, we took the other kids to grab some lunch while we waited for them to come and eat.  It took longer than they had planned, so Shelby, Brennon, and Tyson quickly went on a close ride before we all headed to the other rollercoasters.  Look at Brennon's face-- quick before you miss that smile...

 Because they hadn't even made it once around before he asked to be let off the ride.  This was a Medium Intensity ride, I was very concerned about the High Intensity ride he "really wanted to go on next."

As we stood in line, he kept telling us that he couldn't wait, that he really wanted to do it.  We'd watched some YouTube videos of people actually on the ride, so he thought he knew what it would be like.  So, here we are, ready for the ride to start...

As soon as it started, I could tell that he wished we weren't on it.  After the first drop, I looked over at him and never once took my eyes off his face again.  It made it a bit scarier for me, since I didn't know what was coming up next, but his white face, his gasping, shallow breaths, and his sheer terror could not be ignored.  I just kept telling him, "You've got this, Brennon."  "We're almost done."  I was holding his arm, willing him to breath, hoping beyond hope that he didn't pass out.  And as the ride came to a stop, he told me he didn't want to do another one as long as he lived.

We all cheered and clapped and congratulated him-- he'd ridden the fastest of the rides!!  But he was done for the day with those rides.  I am proud of my Brennon for going on that ride!!!

While Brennon was taking it easy on this ride, being the sweet helper that this little boy needed to ride the ride,

 The rest of our family was having the time of their lives!!!  Randy was in another car, dang it!

These faces are 100% real.  Take just a few minutes to look fully at each face, taking time to laugh hard at each one.  Oh, and know that the kid that looks all carefree and happy is only seven-- the baby of the bunch.  He was in his element.

Randy bought the photo for me.  He knows me so well.  I could barely stand, I was weak from laughing so hard.  I could barely breath, my stomach hurt like crazy.  Each glimpse after (and I looked a bunch the rest of the day) set me off again.  I still cannot look at this picture without my stomach hurting from so much laughing.  This will now be the first picture you see as you enter our home!

Because it was so cold (93 degrees the weekend before, 59 degrees today), I did not want to go on this ride.  Well, that, and I don't like being wet. 

 Little did we know that just moments after Caden, Shelby, and Tyson had gotten out of their log, the ride would break down.  They have no idea what was wrong with it.  So, Randy, Keilie, and Brennon were stuck here for about 10 minutes, at one point trying to guide their long where it needed to go. 

 So, of course I needed to get a picture!

I wish I would have been able to get all pictures of our Antique Car drives!!  Brennon drove me, Keilie drove her own, Shelby drove Randy, and Tyson drove Caden.  It was a nice, slow, easy ride.  And the younger kids loved being the drivers of the Seniors.

We played hard all day, going on every ride the kids wanted to go on!  The drive home gave us plenty of time to pick up a few extra passengers headed for Richland.  My goodness, we were so generous picking up so many hitchhikers!!

Randy: "I was able to forget for a little bit today."

Heavenly Father gave us a day we never would have done without those purchased tickets.