On the road again.

We head back to Seattle this afternoon.  I am sad, but ready to keep fighting.  Each day gets us closer to that tumor being removed.

Caden's pain has been lessened with the recent prescription.  He is on a slow release, every 12- hours dose, that has made it so that he is off of the every 4-hours medicine.  It has changed his pain level substantially.  That has been a great relief.

Caden's nausea has still been persistent.  It hasn't been as often as it was at the beginning of the week, but he has thrown up everything that has touched his stomach.  He's able to keep food down for a longer period, thus getting a few calories in his system, but inevitably he throws everything up before going to bed.  He has gone to bed with an empty stomach for the entire week.  In a way, he feels better with nothing in his stomach.  It's been hard wanting him to eat (and eat, and eat, and eat), but watching him writhe with nausea from such an upset stomach.

He is still very weak and tired.  No wonder, with his body working on fumes.  But he is still my Caden.  He found a project on YouTube to surprise the kids with.  He hasn't been able to finish it, but we have plans to take it with us and hopefully be able to show them their surprise when we are together next.  It is something for him to look forward to. 

He still has his humor, too.  With his hair buzzed short, it was taking a while for the hair to fall out.  One day, as he was using a lint roller to help the hair loss along, he gasped.  Worried about any number of things, I nervously asked, "What?"

(Pause for effect) "I...have.........the best idea!  I could sell my hair on these sticky sheets as ART!"

He got the rise and the reaction he wanted: Worried, to eye roll, to laughter.

I'm worried for this week.  Tomorrow starts the five days in a row of intense chemo.  From what I've heard from Sarah Gallaher (Remember her son, Caleb, is Six and went to my kids' elementary) -we are following his chemo schedule- this drug is the most harsh for Caleb.  He throws up more with this one than any other.  Perfect!  Caden's not stopped throwing up from the "easy" one, I am totally looking forward to what this week will bring.  {Insert epic eye roll here.}

Thank you for your continued prayers.  It has been super hard this week, but I have felt a peace that can only be attributed to a Heavenly hand.  Thank you so much!  Please continue to pray for Caden.  This week is going to be his biggest challenge yet.

We made it safely to Seattle tonight. As it stands, today has been the only day that he has not thrown up. Yet. And he's actually eating. It breaks my heart that it is so close to chemo tomorrow, but I'll take the calories he's eating. He's actually eating!!!!!!! 

And one more bit of good news...

I got one of these babies this week!! I LOVE these papers!! It is like a plaque or trophy from my "boss." I have found that they give them only when no one is in the room. My room is always clean, but Randy was in the room last week, so they just stuck their head inside the door. I was SO sad that I couldn't collect one of these bad boys. Simple pleasures, my friends. Simple.pleasures. 

Shoot!

Yes, there is another way to kill cancer!

CRUSHED IT!!!

Not-so Epic

I was hoping that the time away from Seattle would be exactly like it was over the weekend.  On Sunday, when we were 49 miles from home, Caden sat up in the back seat with anxious energy, "I'm so excited!"  From there, he was such a different boy.  It was an amazing two days home.

I thought that he would feel better being home after the "easy" chemo on Wednesday.  Instead, because of my high expectations, it's been harder.  He's not more sick than he usually is, I just thought he would feel better being home.  So, without the miraculous healing of home, I just feel depressed again.  Caden truly is sick.  More sick than he has ever been, to be quite honest.

Since Wednesday, he has been able to keep nothing down.  Nothing.  Being Friday night, that is three full days without nourishment.  He is also suffering from so much pain that they have bumped up his dose of narcotics yet again, making this the third time in a 23 days.  Where he was completely off of pain medications by the third week 2 years ago, he is getting worse week three this time.  Since January 17, 2016, Caden has barely been able to eat, has been in so much pain that he needs constant hardcore pain medications, or he's been too nauseous to even function.  He has not been living, not really.  And it breaks my heart.

The kids had a dentist appointment this morning, one that has been scheduled since August 2015.  Caden was not able to make it, obviously.  Before they began, while they were getting all of the paperwork updated, they asked me if I would like to go ahead and make the kids' next appointment.  I was finishing up some signatures, only half paying attention, when I heard, "OK, so I can fit all four in on August..." I had to stop her right there.  I could not listen to her for a second more.

"No, wait, I have five kids.  I know Caden is not here today, but could you please, please just schedule him in August?"  My heart had gone cold, my mind was screaming, "I am not ready to schedule for only four.  I have five kids!!!" 

I had to walk away and catch my breath.  I felt bad for how awkward I had made the situation with my tears, but I just couldn't plan for Caden to not have an appointment, like the many, many appointments they have always had together at the dentist for the last three years.  It was a deep yearning in my soul to have hope that my Caden would be able to make that appointment in August.  Because that would mean that  Caden was still with me, that we had broken free of Seattle, and that we were together as a family.  I have FIVE kids, dang it!!!!!  Please help me keep him on my future schedule.

It feels like we are having more and more hard days.  It seems that each day just adds to the sorrow of the previous ones, getting heavier and heavier.  To watch your child suffer as we are- losing more and more weight (he is skin and bones, but for the massive tumor that makes his tummy distended), sleeping more and more, being in near-constant pain- it hurts worse than I could ever imagine.  It is getting harder and harder to keep my emotions in check. 

I am terrified for next week.  With as much as he's thrown up with the "easy" chemo, next week has five days of intense chemo, with only a two day break before more "easy" chemo, I don't know how he's really going to benefit from the feeding tube anyway.  It's not like the feeding tube is going to make it any easier to get nourishment into his body.  He's not throwing up because he wants to!

I was hoping to be able to write about our epic fun week, the one where we all recharged our emotional batteries for the upcoming challenging weeks.  Well, more challenging, if we can even believe there could be more challenge.  But the truth is, he is progressively getting worse.  March 9 seems an eternity away.  Please pray. 

Like Quentin L. Cook said, "Hope you Know, We Had a Hard Time."

sunnywrightphotography.com

 It needs to be mentioned that these were the last of the family pictures that we took.  By this time we were all frozen.  I'm not sure how she made it so all of our noses aren't flame red.  Thus Shelby's 'broken arm' above.  And Brennon's missing hands.  She fixes the problem below.

Looking up to their big brother.

 Randy forgot his black shoes, so the Temple one is an honorable mention.  Oh, and Tyson's pants are hitched pretty high.  I love everything else about this one.  I love the curved look.  Gorgeous!

Sunny, I can't thank you enough, it seems.  I don't have words adequate enough for the feelings and memories these pictures create.  From the bottom of my heart, THANK YOU!  Thank you for capturing the love we have for each other.  

Thank you for capturing the beauty that I get to call mine.  

{Families are Forever}

Home again!!

We busted out of Seattle last night at 5:30PM!  We made it home by 9:00PM and slept in our own beds.  It was a great night.

I got our pictures from www.sunnywrightphotography.com, and am in LOVE, but I don't have time to post them all just yet.  I've got a date with Caden at Target!  We have freedom to go shopping!!! 

Real quick- we met with a new doctor on Caden's team, Dr. Pinto.  He suggested that we may be able to move the surgery up, seeing how much pain Caden is in.  I almost kissed the man.  Maybe that would have made the decision, actually.  We could have got the surgery moved up...or had to find a new doctor.  Anywhoooo, it may turn out to only be a nice thought, but I'll take nice thoughts at this point.

Off to live our lives today. 

It's a good life.

Valentine from Caden

It was SO good to be home. Caden ate more, walked more, ate more, laughed more, was awake more, ate more, and played more than the entire three weeks we have been gone. He was so much happier!! 

It was nice to be together for two whole evenings, eating around the table, playing games, singing songs, and just snuggling. I got to put my kids to bed, relishing in their "one more hug" requests. They make me so happy!

Chemo is tomorrow at 11:00 (it is pushed through the port in less than 15 seconds). We are hoping to be able to turn around and come home within a day or two. We have no appointments until the 17th. Fingers crossed that we get our wish. 

Caden's hair started falling out yesterday as we were trying to dye it blue. It fell out more on the drive back to Seattle. Coincidence so close to Valentine's Day?

I think not! 

Week three begins tomorrow!!

Faulty

Both Brennon and Tyson left for school today with the startings of holes in their right knees. 

While re-stringing Tyson's shoes, I pointed out the fray and asked what had happened. Without a moment's pause, "It was Brennon."

Indignant, "Nuh-UH!"

"Yuh-huh! You were six longer than I have been!"

It's true, actually. Brennon was the first and longest to wear those jeans. Tyson started the season with defective goods. Naturally it is Brennon's fault!

My cute boys in new jammies. LOVE being home with my kids!!

Home

There are times that I worry about the raw truth of the words I write.  Yesterday, my mind was not in a good place.  It was the hardest day, to date.  It didn't matter what we did, what we gave him, or how he was positioned, Caden was in pain.  Mega pain.  He was moaning and fidgeting all day, at times crying silent tears in the bathroom to hide it from me.  By the end of the night, after he threw up at the apex of his pain (getting us closer day-by-day to his feeding tube cut-off weight), I pulled out the hardcore medications to knock him out.  I could care less about calories at this point of the day.  I could take his pain no more.

Randy made it to the RMH in time to see the end of it, only seeing Caden awake for about an hour.  It was a hopeless day that felt like we could never win against the demon that is leaving no room for his vital organs, eating, or even breath sometimes.  Randy asked if I had blogged, to which I responded that no one should hear about a day that I had just endured in any sort of truthful detail.  Randy said we should just write, "Today sucked!" and leave it at that.  I was tempted, but couldn't muster up enough energy to even type.  I had the arms of my Mister around me, while my son snored in a drug-induced stupor- I was content, if but for a moment.

Today was a better day.  A much better day.  We got the results of his Platelet count, which were unsurprisingly perfect, and cruised home for two days.  Caden said, "The only way that it will be worth the nausea is if we get to go to church."  So we did, making it only a couple minutes late.  He stayed for the remainder 2 1/2 hours.  On the way home, full of pain, Caden said, "It was worth the pain I feel."

His testimony strengthens my own.  I love him so much.

(By: Eliza Terry Roylance, Ensign 1/2016)

For now, we are home, we are happy, and we are together.  Two days of Heaven on Earth.

The struggle

After chemo on Wednesday, Caden was pretty much done with the world. Any suggestion or question was met with a terse, "I just want to sleep!" I know he was physically tired, but I also knew he was emotionally exhausted. We asked him if he minded if we went to grab some lunch at a local Indian restaurant. He was all-too happy to be alone. I tucked him in, gave him some medicine, placed his cell phone within easy reach, and left him to some much-needed alone time. We also got some much needed alone time, too!

Just a few blocks East of the RMH, we stopped at a fairly-busy intersection, and waited. And waited. And watched car after car pull up, pause, and then drive on. After a few moments, Randy gasped. 

"Oh my gosh, I was waiting for the light to turn green!"

We were at a four-way stop. 

At that moment, I realized that my Mister is distracted.  As I ate my amazing Butter Chicken and Naan, I reflected on all that is asked of my amazing Man. It burned in my heart just how blessed I am. 

When my world turned upside down, I packed up my bags (rushed from the unexpected news that his port surgery was a day sooner than we thought), kissed my kids, and left them in the care of family, friends, church and school support. I knew I would miss them, but I also knew they would be taken care of. My "job" in the home was handed over to others, while I assumed my role in cancer care again. While not easy, it is infinitely more easy than what Randy is dealing with. 

With the acquisition of New World Systems by Tyler Technology, there have been many new, and exciting changes. Added states to his territory, just to name one. While I was finding out all of the added stress of our 2016 with one word- cancer, Randy was finding out all that was now required of him for 2016. And it was not a small list. And before finding out the news, Randy was pretty excited about his upcoming work year. He called me during a small break during Sales Training while I was in Radiology with Caden, just to tell me how challenging his year would be, but pumped that he had some ideas that he could implement. He has always loved a good challenge. 

But, now, his mind and heart are torn. He knows he needs to work. He wants to do good by the company that he works for, and loves. At the end of the year, he wants his success or failures to be because of or in-spite of how hard he worked, not clouded by our one word- cancer. He wants to give his all, win or lose, and continue the streak he started last year- President's Club. 

Yet, with the uncertainty of Caden's future, Randy has stated to me that he wants to spend as much time with Caden, before he doesn't have a chance. 

But the times that he is with us, he feels so lazy.  It's Randy's dedication to our family that drives him. It's his ability and knowledge of sales that make him so successful. He truly is an amazing salesman. And as a salesman, who needs to be paid to support a family of seven, he needs to work and make sales. 

But when he works, he is not focused on what his heart wants...memories with his son, in case this fast-growing, rare cancer steals him away. 

The many men and women that Randy works with have become more than just co-workers- they are our friends. They have been so supportive and caring, bolstering Randy through this. But, in all honesty, I can't help but wish that I could help him more. I can't imagine the struggle. 

September 30, 1999 was the first time I ever laid eyes on Randy Dirks. Never in my wildest dreams could I have imagined such an amazing life, married to such an amazing man. We'll figure this out. All will be as it should. But Randy's struggle is real. Our one word causes more stress than I previously thought. A pain I understand only through the stressful venting and frustrations from the man I love most. 

All because an amazing man chose me. 

Together

I keep going back to these pictures that I took while Caden was admitted after the news.  Caden  was able to give Tyson just what he wanted- time to play video games with his big brother. 

"I can't wait to play this for real!"

Pitcher above

Batter below

It may not be the game of swords that they played mere days before the news, but Tyson had a blast with Caden. In fact, he was the one that got to play longest, yet whined like he didn't get to play at all. This boy loves Caden. And video games. 

But moments later, we found out the real reason for his whining. "I don't want Caden to die!" He climbed into Caden's bed, right next to his big brother, and cried himself out. Caden just soothed him, while I left the room for air. 

Sometimes it hurts that this is our reality. 

And other times

It's not that different from home. We still find time to play together, to teach our kids how to play Checkers, and still quiet the arguments that arise from our competitive natures. It's just the room that looks different. 

While I hate so much of what has happened the last two weeks, (heck, the last two years!) I would still give anything to keep our family as it was in these pictures. Together.