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. 

Anxiety

Today started out with Caden not feeling too well.  I had my suspicions that he was nervous about the day, but he assured me that he wasn't nervous at all.  As the time drew closer to us leaving for the appointment, his stomach ached more, and he was just not feeling well at all.  It all exacerbated when we had a surprise appointment added to our day- one that caused my own anxieties fly through the ceiling...nutrition.

Since it was the first time they were putting the needle in his port (last time he was asleep from surgery) he asked for me to go back with him.  This surprised me, since it wasn't his first time.  Turns out, I was needed...it hurt.  Bad.  He was squeezing my hand for all it was worth.  Remember, he got this placed under his skin just 8 days ago.  That doesn't mean that they can't do their process any different than normal- they needed to actually move the port around a bit for better access to the center placement point.  His head started sweating, his face lost all color, I was ready to punch her even though I knew she needed to do it.  I was screaming in my head at her, though. 

As soon as we made it out of the room, he was throwing up.  It was pure anxiety coming up.  I was telling him to take large, cleansing breaths, knowing that we don't have much weight to lose before they tell us that we have to do a feeding tube.  I feel bad now, but it needed to be said.  Each time his stomach revolts, it gets us closer and closer to the thing we all hate most about cancer care. 

Weight check showed that he's lost 4.41 pounds this week.  If he loses 4.4 pounds at any point, getting down to 42 kg, we will have no choice whatsoever.  None.  The nourishment is needed for his body to be able to recover after the surgery.  And, let's face it, to make it through the surgery itself.  It truly is a life-threatening surgery, one that he needs to be strong enough to have. 

As a mother, you always want your kids to have enough to eat.  I've been trying everything I can think of to help him keep the weight on.  I find myself thinking about all kinds of foods to temp him.  Food is always on my mind!  So, when I heard that he is malnourished, and is soon to enter into the moderately malnourished category (he was mildly malnourished when he came in), it was hard not to feel like a bad mom.  I know that I am working against something much bigger than I, but man, it is hard to hear those words about the child that is entrusted to your care and, right now, the main focus of your attentions.  I am desperate to help my child gain even one pound right now.

Chemo took less than 15 seconds to give today.  However, five hours later has Caden writhing in his bed, jittery and uncomfortable.  His entire body hurts.  He can not get into a comfortable position.  His tumor is hurting worse than ever, and he says his bones hurt so much.  He barely wants to talk, he doesn't want to eat, and his patience is running thin.  He's cried a few times today, anxiety bubbling over, no matter how much he is trying to hide it.  Today has been super hard for him.  Not because of throwing up, but from something just as difficult to keep down- anxiety.  

Today has been full of anxiety!

Remember how Sue said that this particular chemo has only caused two of her patients to throw up? Well, because of the pain it is causing the actual tumor, Caden has thrown up three times tonight from the pain. When the tumor takes up 1/3 of your gut, and the chemo is aggravating it this bad, you can imagine the amount of pain he's had tonight. Cancer does not like this chemo stuff. 

How is Caden?

I realized that many have asked through text how Caden is, but I have not given a recent update on him for a while.

Answer:

He is doing well.  The nausea has passed, for the most part, so he is able to eat a little more.  We have cut back from nausea medicines every two hours to every eight.  This makes for a nice, long night...if the upstairs neighbors would be a little more quiet.  I have had to go to the front desk three times now between 10:30PM and Midnight-30.  Bouncing balls, slamming closet doors, and the pitter-patter of running toddler feet do not make for a quiet sleep environment for the downstairs neighbors, who knew?!

He has been having more and more headaches, which we have learned are a side effect of this kind of chemo.  With Oxycodone being given every four hours, I can't imagine what they would be like without any pain medication.  He is very light sensitive, so I'm wondering if it is migraines that are tempered by the pain medication, so they feel like a 'normal' headache.  Either way, I don't like that he is in pain.

He is having other side effects from the chemo, as well.  One of them is a rare side effect, affecting less than five kids out of every one hundred.  Of course Caden gets the rare side effects fighting his rare cancer!  It is causing him to have blurry vision.  And, since he is blind in one eye (amblyopia), it is really bothering him that he can't see well out of the one that has always been 20/15.  Hopefully this passes soon.  We'll talk to Sue about it tomorrow.

He is also having a 'common' side effect- jaw pain.  It has been hard for him to eat much.  He bit into a luscious, delicious Reese's Peanut Butter Cup (Thanks, again, Teachers' Quorum) and moaned in pain and set it aside.  He was not able to finish it, it hurt so bad.  So, not only does he have 1. a massive tumor pushing on his stomach, for which he can't eat a lot or it 2. pushes on the tumor and causes pain, he also has a hard time eating 3. because of his jaw and 4. because everything tastes metallic.  He's lost a lot of weight, I'm kind of getting nervous.  Stupid Chemo that is killing his cancer!!!  Double-edged sword, that chemo stuff.  I kind of have a love/hate relationship with the poison.

With the absence of all of the nausea meds, he is more alert and happy.  Aside for the 19 hour nap he took the other day, he usually only take two 3-hour naps a day, now.  We have watched a lot of Wicked Tuna and Impractical Jokers- cheering and laughing are so good for my soul.  We have also been able to go on a few walks.  Seattle has had sunshine for the past two days.  Tender mercy.  On one of the walks, I suggested that Caden walk behind the wheelchair (Thank you, Howard and Janelle) and then get in it if he needed, and I would push him the rest of the way home.  He never needed me to push him, he was strong enough to not only walk, but push something too.  He is getting stronger every day.

With each passing day, he gets more energy, feels a little better, and eats a little more.  I'm hoping that the next two weeks of chemo, which will be a syringe pushed through his port (like 2 minutes, for real) will be as easy as Sue says they are.  She says that in the 20+ years she has been doing this, only two kids have actually thrown up.  Knowing Caden, he'll make it three kids, but I'm hoping to be surprised.  In medical terms, this drug is like giving water- she said.  Water that makes him lose his hair, sure, but easier than any he's had.  It would be nice to have him as comfortable as he is at this very minute.  He needs this time to gain back some of the weight he has lost.  He needs a chance to fight to keep that feeding tube out.  WE DO NOT WANT THAT FEEDING TUBE AGAIN!!!!Everything always looks so much better when he is feeling as well as he's felt today. 

My Caden doesn't need a Mohawk to look tough, he IS tough!

Good Kids!

While waiting for our meeting with Sue on the 20th, we hid ourselves in a hallway to give Caden some privacy, should he throw up again.  Well, privacy from other patients, this hallway is used by all of the nurses, doctors, and staff of the hospital.  One nurse walked by, abruptly stopped, turned to look at and count my kids, and then proclaimed, "If I were blind, I would have never known that you had five kids sitting next to you.  You have some GREAT kids!! I need to learn your secret!"

The truth is, I don't have a secret.  My kids are just good kids from birth.  I have so many opportunities to see this, too.  It feels good, as a mother, to be told that your kids are well-behaved and so obedient, but it feels better knowing that my kids are great kids that will become great adults and great parents to my many, many grandkids! 

For example:

Keilie was finally able to get a bag of chips that she wanted with her sandwich meal.  We don't always value meals for our kids, but with the stressful news that slammed us, we decided to splurge on our kids, so their memories would be fun instead of fear.  However, Brennon's meal came with the wrong ones.  Before he even had a chance to be sad, Keilie switched him.  She wasn't loud about it, and didn't even say anything, but I saw it.  I know how much it took for her to give up what she wanted most, but she did it without even asking for recognition.  That is a good kid!

Just minutes after hearing the news, I needed to go down to the Sibling Playroom to ask if they could keep my kids just a few more hours.  She asked that I take them out for a quick little drink and snack, so they could stretch their legs.  It was kind of stressful not being able to go straight back to Caden, but I knew what she said was true.  I took them to the vending machine that takes credit cards.  Again, wanting them to have the world, I told them they could each choose one of their choosing, usually we have them share.  They were so excited.  Brennon and Keilie wanted chips, while Shelby and Tyson wanted fruity candy.  Brennon and Keilie chose quickly, so I got them first.  Well...I put in their orders first, that doesn't mean that they got them first.  Both bags of chips got wedged between the glass and the other snacks. 

 They would not come out, even with a simple shove.  I decided to just use the other snacks that we were buying to dislodge the chips.  First one...fell on the chips and sat there.  It felt like I was being punished.  Why now?  Why, when my kids are getting exactly what they want in a time of great heartache, does this need to happen to them?!  I didn't want to simply shake the machine, I wanted to go postal on it.  I had instant images of picking up the chair next to me and bashing the heck out of the glass.  I was going out of my mind.  The people that were sitting next to the machine said that someone else had had the same thing happen just moments before.  I finally got the Starbursts down, but the chips stayed as they were.  Since so much time had passed, I said that I would get the Skittles, and that they would now have to share.  The people left, we got our treats, and turned to go.  They had left their extra snacks near my purse.  It almost pushed me over the edge I was trying so hard to stay away from.  I had not cried yet, and I didn't want to do it now.  Since Brennon's chips were the ones that got caught, he was going to have to take one of the snacks that were left.  Brennon is a very picky kid, so he was saying that he wouldn't take anything.  Shelby immediately gave him her Skittles and took the other snack.  Brennon knew (this time) that she was giving him her stuff and said thanks.  "I'm giving them to you, because I love you, B-boy.  You're my brother."  That is a good kid!

With Shelby's birthday last Friday, she came home with so much.  Sunny, our amazing photographer, had stopped by her school and dropped off a bag full of snacks and a HUGE stuffed giraffe.  And when I say huge, I mean bigger than Shelby, huge.  There was so much!!  She looked through the bag and picked out the snacks that she wanted to give to Caden.  She knew that he liked sour during chemo, so she found the sour and called to show us what she was going to share.  Next, she looked at her stash and said she remembered that Mrs. Leggard, her tutor, liked Doritos, so she wanted to share those with her.  Then, after dancing around the front room with her giraffe, she asked me how Anna was doing (my cousin's little girl that was diagnosed with a brain tumor on 1/21/16, although it is not cancerous YAY!) and said that she wanted to give her the giraffe to make her happy.  As it stands, she did give Caden his snacks, she gave a portion of the chips to her tutor, and would have given the giraffe to Anna if she would have still been in the hospital.  She ALWAYS looks for ways to give her stuff to others.  She is always wanting to share, to make others happy.  She didn't have those birthday gifts for more than half an hour before she was thinking of giving them away to those that she loves.  Most times, we have to stop her from giving all of her belongings to others.  That is a good kid!

Caden got a gift from his High School on the very day that Anna was brought into the ER at the same hospital.  Caden had just been given some morphine and nausea meds, so he was pretty out of it with pain, nausea, and dizzy-sleep.  Just before he fell asleep, I got the text from Ryan saying they were there, and asked if he would mind if I popped down to see them.  "Mom, take the bear I got today.  Tell her that I wanted her to have something to hold onto so, she wouldn't be as scared."  That is a good kid!

There are many, many examples of my kids being amazing.  These are just examples from this week!  I hate being parted from them so much. I miss them so much!! We could have chosen to uproot them to have them closer to us, but we know that they are where they need to be.  We were lead to Richland where they have supportive school staff, teachers, church and school friends, and a home that gives them comfort and normalcy.  But the one thing I do like is that family members that we have not lived near for their entire lives get to know my kids.  They get to see for themselves their personalities, their struggles, their curiosity, their rambunctiousness, their spunk, their learning style, their obedience, and their love. 

I have good kids!  Thank you for praying for, supporting, and taking care of my family.

I am the luckiest girl in the world!