May 15th, 2014

Caden's birthday was one of great emotion.  Like many days these last few months, I felt extreme ups and downs all in one day.  When Caden woke me at 5:30 AM, I fought hard to wake myself up enough to be mentally present for the situation ahead.  We had gone to bed a little later than normal, had been woken a few times for medications, had been to the bathroom a few times in the night, and was now waking hours before I normally do.  Add to that the stress of a previous day of extreme nausea while trying to add calories and liquid, and you have a zombie.  I felt exhaustion in my bones and very soul.  I got him a pink bucket, had an order in for more nausea meds, and started to head back to the comfort of my stiff couch and scratchy blankets, when Caden said, "I remembered at 4:30 AM, while they were taking my blood, that today is my birthday."  This woke me up more than anything else.  It was his birthday!!  I was a mother of a teenager!!

Rounds happened a few minutes after I returned from breakfast.  They checked Caden's scar, told me that all of the blood work done that morning was impressive, and told us that all was looking great.  Caden looked at Dr. Leadbetter and asked, "Do I get to go home on my birthday?"  We had a pretty impressive case to show that we were ready.  I had proof written on the board of the increase of calories and water, ready for them to see.  Dr. Leadbetter was astounded at the progress and actually said that with all things as they were, he could see no reason why we wouldn't.  He congratulated Caden on working so well even though he was nauseous.  After his excited remarks, he looked to the nutritionist and asked if she thought it was possible.  And this is where we hit a brick wall.  During his talk, she had gone to my perfectly documented writings, where I had catalogued all that he ate and written all of the calories, and wrote over my stuff to say that the estimate was actually only 800 calories instead of 912.  I wanted to scream.  I had gone onto Google to make sure that I knew exactly what he was taking in.  I now know that in one ounce of apple juice there is 15 calories.  In one saltine cracker, there is 45.  I had documented every single little bite that entered his lips.  And here she was estimating 112 calories less than he had eaten.  That isn't much to everyone else, but to a boy that is proving his determination, it is a TON!  I could feel the heat rising up my cheeks.  We had just been told by the main surgery attending doctor that we could go home.  And here she was, all high and mighty, telling me that he wasn't doing good enough for her.  I was deflated beyond belief.  I didn't want to take him home before it was safe, obviously, but when the surgeon says we can go, and when I have so much documentation and detail, how can she not see what we are capable of.  This isn't the first time we have wanted needed to prove he can do it.  I didn't push it.  Yet.

She came in less than one hour later to tell us that she would allow us to go home if Caden could drink 5 ounces every hour.  This may not seem like a big thing, but it is many more ounces than he drank the day before.  But, if we were going to get out, we were willing to jump through her hoops.  She wrote boxes down the board where I had erased our "good enough for the surgeon" calculations.  10:00, 11:00, 12:00, 1:00, 2:00... I thought it would end there.  Nope, she took it all the way down to 4:00.  So we got started.  By 2:00PM he had 35 ounces, 15 more ounces than was needed by that time frame.  When she came in, she gave a louder scream than I dared just that morning to wish him a Happy Birthday.  We had done it!  We had proven that we could do it.  Now send us home!  But wait...

"Let me go now and convince the team."  Wait, what?  We already did that.  Just this morning, Dr. Leadbetter said we could go.  Why do you need to convince the team?  I think his words trump theirs.  Frustration sets in again.  I was heating to fever pitch.  I could not imagine what they were thinking.  How could they not have discharge papers ready for the second we proved we could?  Why didn't they want to let this boy that had been through the seventh circle of hades and back go home?  Just get us out of here!!!  I was getting to a point I don't get to often.  A point I don't want to be at.  Or acknowledge I have inside.

The "team" came in just 10 minutes later.  They wanted to reconcile Caden's medication list to make sure that I had all of the right dosing instructions and didn't need anything refilled.  In a rush I told them that I had everything I needed, I didn't need any refills.  Halfway through all of this, a call came in to take Caden's dinner order.  When I asked Caden what he wanted, he told me he didn't want to be here for dinner.  I told him to order, just in case, but that I didn't think we would be here.  He ordered the same thing for dinner that he had had for lunch, chicken nuggets.  The doctors and I continued our conversation about medications and got it all completed.  I was so happy to see things going in the right direction.  The only time we reconciled our medications was upon discharge.  We were going home soon.  As they were leaving, the doctor in charge said to Caden, "Happy Birthday, Caden.  Enjoy your chicken nuggets."  What... WHAT?  It was 2:30!!  Dinner is at 5:30.  Was she telling me that we were staying longer?  What was going on?  Before my mind could fully comprehend her words, she was gone.  And I was bawling again.  Why aren't we leaving yet?

After a conversation with my dad (he must have known I needed him to call) I determined to just tell them we were going.  By this point, I was willing to risk being taken to jail for attempted endangerment of a child.  My nurse had just come in for his 3:00PM medication.  "They just want to watch him for a few more hours and then they'll let you go home."  I snapped!  "NO!  We are done.  We have already proven he can do it.  More than proven it!  Today is his birthday, he just wants to go home to give his brothers and sisters a hug.  We have missed the window to have dinner as a family.  We will probably even miss the window before they go to bed.  We are not going to stay here for a few more hours.  We are going to leave now!"  She hadn't been filled in yet that today was his birthday.  In fact, she was the new nurse that began her shift at 3:00PM.  These were the first words she heard me speak.  And they were spoken in anger around my tears.  She quickly agreed with what I had said and told me she was going to go tell the team.  By the time she got back, our bags were packed and ready for quick removal.  The discharge papers were printing and IV team was called to take out his port needle, we were going home!  I felt the tiniest bit of guilt for speaking to her so forcefully, after all- it wasn't her fault, but I had had enough. 

All in all, we finally got out of there at 4:30PM.  Our exit was made sweeter as our nurse gathered all other accessible nurses to sing Happy Birthday to Caden as we walked through their tunnel.  Tears fell down my cheeks; from relief or happiness, I don't know.  I was taking my child home for the first time Cancer Free!  On his 13th Birthday!  The best birthday gift imaginable!!!

Traffic was a beast!  It took us 30 minutes to go just 1 mile and a half.  It took us 4 hours where it usually takes us 3.5.  I felt like we were flying.  And when Randy called to tell me that he was going to keep the kids up until Caden got home to celebrate with a surprise party, I couldn't push that peddle down enough.  Curse those speed limits!!!  They don't know our lives!  They don't know what we are speeding to get to!

When we did get home, surprise shouted from the roof tops with abandon, the fun was palpable.  The happiness, excitement, and love was like a blanket around our little family.  We ate ice cream, some had cupcakes, and 30 balloons decorated our kitchen table.  All for the boy that beat all odds.  It was magical.  Caden started to hand out balloons for each of his siblings to have.  And an idea hit me.  I asked for one, too.  And while they were all singing and dancing, bouncing their balloons and being incredibly giddy, I sucked out the helium to sing Caden a song.  All activity abruptly stopped as their mom, with the best chipmunk voice anyone has ever heard, sang "Happy Birthday to you!  Happy Birthday to you!  Happy Birthday, dear Caden.  Happy Birthday to you!!  And many more... You're Cancer free!!!!!"  You know we all took turns trying our chipmunk voices, it was a must.  And if I thought my kids' voices were cute before, you should have heard them last night.  It was the best way to spend a birthday.  All cares of the day were wiped away with our 30-minute party.  A night to remember!

We ended our late-day with family prayer.  We always kneel as a family, but last night we made a circle.  As our seven heads bowed, Randy declared that I was going to say it.  I was filled with so much love for these six humans around me.  I was filled with such love for my Heavenly Father for giving me this family.  I was filled with so much gratitude for my Heavenly Father for guiding us in our lives, for carrying us through this trial.  My prayer began with a husky voice and immediately I felt us all shift closer together.  Electricity charged through our tiny front room.   The Holy Ghost comforted us, soothing our wounded hearts.  We have been truly blessed!  We will never forget!  We have been made stronger because our Heavenly Father trusted us, tested us to become better, gave us each other to hold onto.  Our family is not perfect.  We have our arguments and petty cares just like everyone.  But we are perfect together.  Our family will last forever.  Not to infinity and beyond, but to Eternity and beyond. 

WARNING! Graphic Images

The pictures near the beginning of this post are pretty safe to view. They are from the CT scans before and after chemo.

 

Before Chemo

Looking from the side

 

 

After Chemo 

Looking from the side

 

 

 

 

 

 

Before Chemo

Looking from the front

 

After Chemo

Looking from the front

Also After Chemo

Looking down into his abdomen

 

 

 

WARNING!

Surgery Pictures are below

 

 

Caden's Tumor

This is a picture of the underneath side of the liver in order to show the tumor better. In the next picture they will turn it over and place it back into his body for the purpose of showing where it was.

 

Caden's tumor put back into his body

They had already removed the lower clamp that was pulling down on the opening when they took this picture. The tumor was placed back into position after it was removed in order to take this picture. It is actually halfway back in his abdomen and halfway laying on the outside of his stomach. The right side of the picture is his left lobe of the liver, which stayed in place. It actually grew larger than a normal left lobe during the last four months in order to compensate for the tumor and lack of blood flow in his right lobe. The surgeon's hand is touching the healthy left lobe that remains. The right lobe/tumor is on the left side of this picture. It will take as little as two weeks to grow back to the size of a normal healthy liver. The body seems to know how big the liver needs to be for normal liver function.

 

 

 

 

Caden's battle wound

These were taken with my phone. Once we get the camera downloaded, we might have better pictures of the incision.

 

 

 

 

 

 

Birthday Wishes

Danielle and Caden

His first real Halloween!

First time in T-ball.

He got to choose his props and background. 

Ashlee and Caden

Russ and Caden

Those lips!!!

And cheeks!!!

Caden was always so happy!! And tan!!

We still have not heard from the doctors this morning whether he will be able to go home today. He had 8 more ounces of liquid yesterday than the day before and 3 times more calories than the day before. We sure hope they see how hard he's trying!! We don't want to go home too soon, in case we have to come straight back, but he is very determined. I hope they take into account the massive amount of weight taken out and not hold that against him;) We'll see. 

He woke me up today at 5:30AM. He commented that 13 years ago I was in a hospital, too. Ashlee sent me all of the pictures this morning minus the one with Danielle. Danielle sent that one to me the other day. He is so loved by everyone. I was in the cafeteria when they first came in. I was filled with so much low and happiness for his early childhood that I burst into tears. Right there for everyone to see. I ducked my head to shield my face, which only made it worse. I must have looked a sight with my bright red nose leaking, my second-day hair in a ponytail, and tears running down my cheeks while eating an early breakfast. I just love my birthday boy so much. I am so grateful to be a mom. To have such amazing kids. To be the one to raise them. Oh my gosh, I have a teenager!!! And I wouldn't change it for the world!!

Happy 13th birthday, Mister!!! You have such beautiful eye lashes!  Haha, I am so funny!!

Can you all imagine his eye roll? If so, then you know my Caden well! Doesn't he make you smile?!

Winner, winner?

I am a very competitive person when it comes to games. I love winning, it's as simple as that! But even if I don't win, I'll play over and over for the chance to win.

The first year in our marriage we decided that we didn't want TV in our home, so we bought games. Our favorite game purchase was actually a big surprise for my birthday. Settlers of Catan. We had played many games with Jerry and Veniece when we lived with or close to them. I fell in love! I didn't win much, but with the board changing every game, I always hoped to. Randy and I played often. We made up house rules so we could play as a couple. It is much more fun with four or more players, especially Cities and Knights, but we mostly placed it just us two. It was SO good for our marriage. Until Randy felt like he needed to let me win. 

Randy had had a winning streak of 17 games. That's right, I lost 17 times in a row. I was starting to think maybe we should take a break, maybe forever, from Catan. Randy persuaded me to play just one more time. And guess who won? Me! The game was my new favorite and the challenge was back on. I'm pretty sure he strategically won the next game, but I found myself winning a little more frequently. I was certain I was gettin better, but that reality crashed down one night as we were cleaning up the game. 

I happened to notice that Randy was always quick to mix up the cards in his hand that held winning points. You have a choice when to show those cards, so you can choose to show them on your winning turn. Or, in Randy's case, choose to keep them hidden so your winning-lover wife will win. I was crushed!! I even cried! That is how much I love winning. I thought I was getting so good, winning on my own skill, but it turned out to be a trick. I had not won after all. And I made sure to let Randy know how mad I was. That board, with its sixty bazillion pieces, was swept off the table and left for him to clean up. Yep, I'm that type of baby. Wanna play a game with me?!

Caden has been pretty quiet and still the last few days. When I came back in Sunday I noticed a HUGE shift in his demeanor. He was so still and quiet, not even a small smile played on his lips. In fact, nothing happened with those lips at all. He just sat and did nothing. Being the hover-mother that I am, I panicked. I called my dad to get ideas from when he woke from his own cancer surgery 31 years ago. He gave me good tips and pointers and I decided to just calm down. I love to talk, so it was hard to watch him be so still and silent. I was convinced that if he would just talk, and possibly cry, he would feel better. If he could have had solids, I would have gotten him some chocolate as well. Don't these methods work on everybody?!

As the days have passed, more and more smiles have been shared. Each one feeling like the coming of Spring. Not warmth all at once, but glimmers of more and more each day. I was greedy for those smiles, anxious to see more. Today when he actually told a joke, I swear to you I got burned by the sun. It was wonderful. My Caden is slowly making his way back to me. My days are less cloudy with him as my sunshine. 

With his lack of talking and Randy leaving for work, this left plenty of time for my own reflections. And for my mind to start on the negatives we have endured. It finally hit me that we might not actually be done, and I am scared. And sad. And, let's be honest, swipe the board off the table mad! 

From the beginning there has always been the possibility. I've said it again and again, but never really believed it. They had always kind of played it as "that was what they had to say, not what they believed would happen." A "we have to make sure we cover all of our bases." With each Round endured and now the huge surgery that has left us all feeling desolate, I feel like we should win. That Caden had paid the price up front and could now take home the winnings. But we have not won, more cards were brought to the table that left someone else ahead. The game is not over.

In some ways this makes me sad. If it is the same chemo as before, I know what to expect. As long as it is just one Round. But what if it is more? Or different drugs? When will this truly be over? How many more times are we going to be weeks away from our family?

In other ways this makes me super happy. They are just being safe. They want to kill anything that may be microscopic so that we don't have to go through this again, if they can help it. I like that idea!! If a few more weeks will make it so we don't to spend a few more months, or worse, apart, then let's do this!! I'm glad that they love Caden enough to make sure that they truly kill it all. I'll help carry my son to win this "game" if needed. 

There are worse things happening all over the world. I know this. We have so much to be grateful for. We're tired, for sure, but others have been "playing" much longer than we have. We're at the point of my 17 game losing streak. We'll take their advice. We'll play just one more game. But this time, our win will be genuine. And our sense of pride in that win will trump all sense of loss that we feel now. And it will be wonderful! Because who doesn't like to win, I ask you?!

Pathology

Procedure: Liver, right trisegmented resection

Tumor size: 5.12"x4.92"x3.34"

Weight: 2.47 pounds

Liver size: 9.05"x5.90"x3.14"

Necrosis (death of circumscribed tissue) ~99% post treatment

Dr. Healey said that Caden is right on track. Today's ultrasound was exactly what they'd hope to see. We're still trying to boost his appetite, but things are going well. I hope things continue better than expected to allow Caden to leave on his birthday!

We have been supremely blessed. Goodbye Stupid Cancer!!!

Caden he another episode of nausea this morning at 4:30AM. He has been slowly adding more to his sleepy stomach, but some times are harder than others. After we got things under control, I went to the bathroom before heading back to bed. His nurse, David, stopped me before I made it back to our room. 

"You have one amazing kid in there. I bet he's been feeling nauseous for a while now and hasn't said a word. In fact, he's barely said anything. He is fighting a big fight in there and not complaining."

As he continues, I notice a tear fall from one of his eyes while another tear threatens to fall from the other eye.

"Caden inspires me! That is one of the reasons I do this. But, it's children like Caden that make me realize that I don't do as much for them as they do for me."

It was very hard to sleep after that! It's hard to rest when the mind replays all of the highlights of Caden. 

Funny story: Caden called out loudly to me to help him to the bathroom. He could probably make it on his own if not for the speed-bump threshold between his room and bathroom. Yikes!

Anyway, when he got back in bed, a little perturbed, he asked, "why is it that when I'm trying to sneak into your room at home, you wake up the second I twist the handle, but I have to scream twice to wake you here in the same room?" I ad to explain that here is a big difference between sleep when one is stressed. I'm either stressing to the point of no sleep or completely exhausted and dead to the world. There is no middle ground for me. I'm glad they don't offer kids megaphones!

Child's Mind

Oh my goodness, I think potty training is one of the hardest things about having a toddler.  I would say even worse than all of the slit-your-wrist-threes.  I have to mentally prepare myself for weeks to begin potty training.  Keilie was our hardest, by far.  It's not that she didn't do well, it's just that she would wait until the last possible second to go and then pee as she was getting on.  Every time.  Being fat and pregnant with Shelby, trying to bend over and clean the floor every day, was exhausting.  I cried many times, frustrated with myself for being so frustrated.  After all, it's not that she would just go in her pants, she was really trying, she just liked playing to the last possible second.  It was a nightmare.

Shelby, Brennon, and Tyson came in three consecutive years.  At one point, I had three in diapers.  I had read a book, one that totally changed my outlook on potty training.  Pottytrainer.com.  I scoured that book for information, convinced that the author and I would be friends.  She spoke to me.  She always started at age two and had great results, but I am a lazy person, so I always started my kids at three.  Where she took 3 days to potty train a 2 year old, I took one day potty training a 3 year old.  I didn't want to deal with 2 extra days of stress so I forked out extra money in diapers, each year, per kid to avoid it.  See?  I am a total sloth! 

Anyway, this woman gave the best visual of how a child feels learning to use the toilet.  First off, you have to stop a habit (life-long habit!) and start a new one all in the same time.  I don't even do that.  When I want to do something, I always stop cold turkey, but I don't try to start something new right away.  It would be like trying to potty train and get rid of the binkie at the same time.  Not gonna happen at the Dirks' house, I tell ya!  Then, she said to imagine drinking a bunch of water.  Enough to fill your bladder.  Then...walk to the farthest point in your yard while drinking more.  Get to the point of pain.  Wait at the back corner until you can hold it no longer and try making it back to your house to use the toilet.  To an adult, this is SO easy; just go as soon as you feel the urge.  To a child, they need to learn this fact.  And most times, it's the hard way.  And parents like me, the ones that are lazy and want instant results, get frustrated.  This was what I was able to avoid after reading her book.  Sometimes I just need a good visual to make me see more clear.

Life would be so much easier if you could put all the knowledge an adult has into a child.  Potty training would not be so hard if you could explain 'once that the urge to go hits, should start making your way to the toilet.  Hold it until you get there.  Clear your bladder completely.  And so on.'  But, there are also areas in a child's life where it would be easier to have more knowledge.  Shelby is going through some of those right now.

Keilie is just old enough to understand a little more about what is going on in our family.  She is able to talk to us, understands the ups and downs, has an amazing teacher to help support her, and is doing pretty well.  She still struggles with things she has always struggled with, (homework) but for the most part, is doing pretty darn good.  Brennon and Tyson are still too young to be affected quite the same way.  They are usually in a hurry to hang up with me if I am able to find a time to call, and willingly send me on my way to Seattle now.  They have adapted pretty quick to the change.  But Shelby is really struggling.  And it breaks my heart.

We've all heard the "middle child" stories, so Randy and I have always been active in watching out a little more for Shelby.  With all of the space Caden needs for all of his stuff, we decided to move the boys from their room into Shelby's room.  She sleeps on the top bunk and Tyson and Brennon sleep on the full bottom bunk.  This moved Keilie to her own room in the office with the new closet.  So, with our thoughts on our middle childe, we decided to ask her what we could do.  I sat her down and told her that we realized that a lot of time was spent with Caden, that Keilie had gotten a new room, and that Brennon and Tyson got a new bed (said with the right tone to make it seem like such a cool idea) so we wanted Shelby to decided something that Randy and I could do to make her feel special.  She told me that she was going to think about it.  I admired her for that.

Between the last Round and the surgery we had two wonderful weeks to be together.  Many times during those two weeks I'd find Shelby sitting on the couch, looking straight ahead, sucking her thumb.  When I would ask her what was wrong she'd say she 'missed her friends in Wyoming.'  She said this enough for me to realize that she did, in fact, miss her friends, but may be missing the security that Wyoming held for her.  Things were perfect for her in Wyoming.  Things were great for her in Washington until all of this happened.  So it was easy to miss the good ole days of Wyoming.  I think we all miss those days.  The endless good, uncomplicated ones.  I wish I could put my adult mind in her to show her that one day, hopefully soon, things will settle down for her.  Mommy will be home more than a few hours in a month.  Our family will eat dinner together each night again.  It's just hard for her to grasp right now.

Kimberly waited a few days after the stress of the surgery to tell me that Shelby was having a hard time in school.  She had been sent to the Principal's office for punching a boy in the nose and vandalizing the teacher's desk.  I didn't believe we would come out on the other side of this trial unscathed, but I was just naïve enough to hope.  When I sat down with her on Saturday, there were more tears.

"Can you tell me about punching the boy?"
"He called me a 'baby.'  I was pretending to punch him and accidentally did."

One thing about Shelby, she is very tender hearted.  I'm sure it hurt her feelings to be called a baby.  I'm not excusing her punching him, but I can see how it really hurt her, so she lashed out without meaning to make it count.  She told me that she apologized to him, but the damage had been done.  I was able to talk to her about better options than pretending to punch, and she said she would work on it.  I'm glad to know she didn't mean to.  That is something that I was really worried about.  She's never been quick to violence, so I was worried this trial was changing her personality.

"What happened with the desk?  Why did you write on Mrs. R's desk?"
"It wasn't her desk.  It was a different one."
"Why did you write on it?  Were you mad?"
Shakes her head no.  Tears are starting to form afresh in her eyes.
"Sad?"
Head nodding as the tears fall freely.
"What made you so sad?"
"I miss my friends in Wyoming."

It breaks my heart to know that she doesn't know how to express her feelings.  That she doesn't know how to decipher exactly what she wants to say about her feelings.  Maybe she is missing Kennedy, I know I miss Kimberly all the time, but she hasn't expressed this much emotion about Kennedy before the last few weeks.

"Mom?  I know what I want to make me feel special.  I wan to move back to Wyoming."

It crushed me to tell her that that was not going to happen.  Again, I wish I could pass all of my understanding to her.  How much easier it would be if I could simply say, "Hang in there a few more days, things will get better.  It's ok to be sad, but realize that better days will come," and she would feel comforted.  It's going to take some time, and lots of talking and loving, for Shelby to feel secure again.  But I'm up to the challenge.  Because my kids will always get 100% participation from me.

I hope one day we find that one special thing to make Shelby feel special.  Until then, my endless kisses and hugs, while we're together, will have to be enough.  There is beauty in the learning, but sometimes we don't see that until the very end.  Sometimes years later.

Mother's Day

Kimberly asked me a few months ago when she could come babysit.  I gave her the choice of either Round Four or Surgery week.  Surgery week worked out better for her and Danen, so they booked her flights.  I was touched by her willingness to come all the way out here, by Danen's offer to watch all of her kids so that she could focus all of her energies on mine, but the biggest thing for me is Kimberly's sacrifice to spend Mother's Day away from her babies.  I called her before she booked her tickets, bawling because it had hit me that she wouldn't be home for today.  She said she realized that as soon as I told her the dates, but that she was just excited to help.  Such love for me!  Today, during Sacrament Meeting, the Primary children got up to sing a song to the Mothers in the congregation.  As their sweet voices filled the Chapel, "Mother, I love you.  Mother, I do.  Heavenly Father has sent me to you..." I was struck with such love for my kids and such sadness that Kimberly was missing the song her children would be singing for her.  I love being a mother!  I have always wanted to be a mother!  How grateful I am for another mother that left her babies to watch over mine.  Thank you Danen and Kimberly for sacrificing so much for me and my family.  You are the Aunt and Uncle that was formed through friendship, but are loved just as much as if by blood!

13 years ago, I was sitting on a piano bench playing the piano for another Primary.  My back was killing me.  Not from the hard bench, but from the baby resting in my belly.  The back labor was so intense that after the sweet voices filled that chapel, I went home to rest.  We actually have a picture in one of our picture books of me completely sprawled out on the bed- directly in the middle with legs and arms extending in all directions.  I missed holding Caden in my arms that Mother's Day 2001 by only two days.  I'm missing him in my arms once more. 

Friday night in the ICU, another family joined us in our room.  A baby of only 10 months, returning from brain surgery, wanted to be snuggled by his own mother.  They couldn't find another rocking chair, so I gladly gave away mine.  This left me without a "bed" for the night.  I would give up my place a million times over if it meant that a mother got to soothe her crying child- even for a moment.  Since I was planning to come home on Saturday morning anyway, we decided that I would just drive home Friday night instead.  I was nervous to approach a sleeping Caden to tell him the news.  I woke him for sleep to tell him of the news, wondering if he was going to be ok with it all. 

"Caden, I don't have a bed tonight, so I'm going to drive home.  Is this alright with you?"

A long pause.  And a snore.  He has been heavily medicated, so I knew he probably wasn't really hearing what I was saying.

"Caden, is that alright?"

After a longer pause and in a sleepy-slurred voice, "Happy Mother's Day.  I love you!"

With tears streaming down my face and love overflowing my heart, I kissed my first-born babe.  The child that made me a mother 13 years ago.  The miracle I get to raise.

I'm getting prepared to leave my other four babies to head back to Seattle.  I'm not sure what I've done to deserve these wonderfully perfect spirits.  This is not the scenario I envision for a perfect Mother's Day, but I'm grateful for the time I have today to spend with all of my children.  I love being a Mother!!  I love the children that make me a Mother!  I love my own Mother!  She is the one that taught me so much, that made me appreciate the 'job' of motherhood, and shows me how to be a good one- even now.  I love my new Mother!  The one that raised the best man of my dreams, the love of my life.  I am the luckiest girl on earth!  Or as Tyson would say, The luckiest human on earth.

Happy Mother's Day to all women!!

Great Cake

Dr. Hawkins stopped by yesterday and said that he should have pathology results for us today.  He said he was going to take in some cake to them and make the off-hand comment, "Do you like the cake?  You do?  Great!  So, I am wondering about a patient of mine..." He just stopped by; the cake worked great, we have good news!  And just to give you a better understanding at just how good said new is, he was actually giddy about it!

To ensure that nothing was left in his body, Dr. Healey cut a few millimeters of healthy tissue around the entire tumor.  This would ensure that they didn't cut into the tumor, but also that they would know for sure that nothing had been left behind.  Pathology confirmed that all edges around the tumor are, indeed, healthy tissue. Nothing was left behind. 

Dr. Hawkins also said that we have a few things to talk about.  We are going to worry now only about his recovery, but there are more things to talk about.  On the day that Caden was diagnosed, Dr. Lux said that they were ordering four Rounds of Chemotherapy and then surgery.  There was a chance that after the surgery they would need additional Chemo, but they didn't think it would be needed.  When I asked Dr. Hawkins about it today, he said we had a few options.  This cancer is so rare, that there aren't many case studies to show the results of the type of treatment.  Dr. Hawkins was so happy to say that the treatment that he had gave AMAZING results, better than they even anticipated.  Testing on the tumor showed that it was, in fact, completely dead.  They said this after the PET Scan, but said there could be a chance that deep down it could still have active cells.  Not to worry, that was not the case.  That tumor was completely dead!  So, we have a meeting planned to meet with Dr. Hawkins to discuss options for moving forward.  The conclusion is still the same:

Caden is Cancer Free!!

 

Today has been a great day with great news.  Caden continues to astound the staff.  He is moving as well as can be expected, his scar is healing well, his spirits are up.  The pain is a bit more today, so the pain team has ordered a little more morphine to be delivered each time he pushes the button.  He has such a high threshold for pain.  It was continuously about a seven, but he wasn't asking for more.  When pain team came by, he told them he could just stay at the current rate.  When asking more questions, though, she told him she thought it would be better in the long run if he was more comfortable.  He is having a hard time coughing some of the stuff out of his lungs.  Understandably, that incision is pretty large and right in the center of his stomach, so it really hurts to cough or move.  His blood pressure shoots through the roof when a coughing jag begins.  It is pretty painful for him.  But he bears it silently.  He still has not murmured once.

 

We are waiting for more of his tubes to be removed today.  We're also hoping for a bed to open up on the floor.  He is cleared to leave the ICU!!  We're hoping for sooner rather than later.  A baby came in today and is now sharing a room with us.  It's hard to have just a curtain separating us from the sad cries of a baby in pain from brain surgery.  I don't mind the cries, they do not bother me.  I want to comfort him more than silence him.  But I also want to comfort Caden.  The cries are causing Caden some major anxiety.  Silent tears have fallen as he quietly tells me that he was having a hard time listening to it.  I don't blame him.  We all just want our own room again.

 

Caden continues to improves day by day, but we may have a little more to do.  We're not going to allow ourselves to think about that now.  We're just loving the fact that Caden's progress caused the number one sarcoma Doctor in the country to be giddy.  His news is that good!!

PICU

It’s 10:30 pm. Caden lies in the bed recovering from surgery, and Steph sleeps on the reclining chair that doesn’t stay reclined. They are so peaceful. I hear a call go over the loud speaker, “Code Green RB.6.508,” and repeats, “code green RB.6.508.” I think to myself, “I’m glad that’s not our room; how would that be if it were our room?” Out of curiosity, I look at what our room number is to see if it is close to us. I read RB.6.507 and realize that I am starting to hear a lot of excited voices just outside my door. I noticed about an hour earlier that a small child was brought out of surgery and placed in the room just next to us. That room was vacant about two hours ago.

I glance over at Steph and Caden, both sleeping soundly. Yet just outside our door, and in the room next to us is organized chaos. Voices are loud with an urgent tone. I’m hearing words like, compressions, paddles, calcium, crash cart, code, O negative, and epi. The room is next to us and cattycorner at the same time since the rooms share the corner of the PICU (Pediatric Intensive Care Unit).

The curtains in our room are drawn closed in order to keep the light out with only a foot opened up to the nurses area. I realize that our room also shares a window with that room and wonder if perhaps I might be able to see what’s going on. The curtains on our side of the window as well as the curtains on their side are cracked just a bit. There are people all around the bed. One of them is doing chest compressions and another is squeezing the breathing bag to pump air in and out of the lungs. I’ve been in the OR probably a hundred times and have never seen CPR in person. Some of the people move apart, and I can see the face of a beautiful child about 4 years of age. I have a 4 year old. I also have a child who is in the same type of room recovering from a major surgery as well. I look over at Caden again and back to the next room. I am so blessed to have waited 11 hours to hear great news, and continue to hear great news as things progress. I hear a voice call for someone sterile to take over compressions. At least a dozen people are helping and everyone is gradually getting into sterile gowns.

I can’t do anything to help; I wish there were something. Wait, maybe there is. I look back at the empty bench and immediately make the decision to get on my knees. I take my time in order to receive revelation to know what to pray for. I don’t know the will of the Lord, but I know that He can make anything happen in the room next me. I feel so much sorrow for the parents. Are they in the waiting room? Were they in the room with their child when it started? Either way, they are deeply concerned, and they want more answers than are available. The prayer doesn’t make me feel much better. I’m not on my knees anymore, but the prayer remains in my heart. That could have been my child; it still could be my child. That thought is chilling.

A half an hour goes by and I check again on the progress. Someone else is doing the chest compressions now. They seem to be setting up the room as an OR, a sight I’m very familiar with and recognize it right away. Only, when I’ve seen it done it was actually in the OR. The room is all sterile now. I see just enough to know that that is this hospital newest Operating Room. I knew that all ICU rooms in this hospital and many inpatient rooms are set up with everything necessary to convert them into an operating room in cases like this. The face of the child is still unchanged. I briefly wonder if I’m about to watch this child pass into the next world or if I possibly already did watch that happen. I’m not interested in seeing that, so I walk away and sit down.

It’s been almost an hour now. I look again and see two surgeons, another familiar scene. They have their suction, bright head lights, mayo stand, magnification lenses. I hear someone announce that flouro (x-ray) is here and catch a glimpse of the C-arm roll in. This is now a full operation to save this child’s life. I hope and pray that they succeed. I hope and pray that this is the will of the Lord. I realize that the parents are just outside the room near the nurses’ station watching the whole thing. They were in the room when it all began. This must be the hardest time in their lives by far. The big surgery that this child came from a couple hours ago was over, but a new one has begun. They probably heard that word, “stable” when they brought him/her into the PICU. That word that we kept hearing, “stable”, is not a word they are hearing right now. I remember mocking that word, since that was literally the only news we got of Caden as he was in his surgery. Don’t ever take that word for granted again. Those parents would do anything for “stable”.

Then I realize, that child may not have just come from a surgery. They almost sent Caden to the ICU when he wasn’t doing well during and just after round one of chemo. His body was filling with fluid and his vitals were dropping continuously. This could have been Caden months ago. This child could be in the PICU for hundreds of reasons. All I know is, I have so much to be grateful for.

The Lord has chosen to keep all of our family together in this world. I think of what is happening in the next room while Steph and Caden sleep peacefully. My mind is taken to Steph’s recent post, “while you were sleeping”. I watch both of them sleep now and can’t help but feel so much gratitude and love for them. All of my children are sleeping right now. We have much to be grateful for, and my love for them increases exponentially as I think about each and every one of them while they sleep.

After midnight now. I can’t sleep.

12:45 am update: In the room next door -  I see a transfusion bag, hear monitors beeping pretty normally, and see no surgeons, that's a good sign.

4:30 pm update: Another emergent surgery happened at 9:00 am this morning in the room next to us. They keep taking more machines into the room, not much space left. A doctor talks about option and plans with the parents just outside the room. They seem to be keeping it together pretty well. I don't envy them and the conversation they are having right now. The conversation we just had regarding the pathology of the tumor was awesome. I think Steph is getting ready to blog about it, so I will leave that to her. We continue to pray for the little boy in the room next door. 

Coasting

As soon as the announcement was made that they were done, I didn't care how long it took to be taken back to the ICU.  I knew that he was safe.  It was 13 hours since we'd arrived at the hospital that morning, 11 since he'd left my arms.  To say I was frantic was an understatement.  I got two updates simply saying that he was stable.  Nothing more, nothing less.  When the time began to drag past 9 hours, my nerves were beyond shot.  I am not good at being positive.  My mind always jumps to the dire in times like these.  My thought kept taking me to my deepest fears.  When they finally took us back, I was practically sprinting behind her.  It would have been a race if I would have known which room he was in and how to navigate the ICU.  As it was, I stepped past her at the last second and beat her into his room.  One day I may be embarrassed at how manic I was, but for today, I still can't get the image of him out of my head.  He looked so wonderful.  It was like a breath of fresh air to sidle up to the bed and grab for his hand.  With slow, deliberate motions, Caden opened his eyes and slurred, with difficulty, "I Love You."  And then he searched out Randy, slowly, of course, and slurred those beautiful words to him.  It was all I could do not to scoop him up, carry him to the nearby rocking chair, and just rock him.  I got to say 'I Love You' again, it felt like heaven.

Dr. Healey met us in the waiting room right before we got to go back.  The surgery was harder than he anticipated.  Um... We can deduce that for ourselves.  What was told to us would be a 6 hour surgery turned into an eleven hour surgery.  It was twelve hours plus before we got to see him.  It was hard to get to the tumor/liver because of Caden's size.  He may be at a heavier weight than he has ever been before, but he's still a slim little guy.  The tumor was also sitting more towards the back of the right lobe, closer to his back bone than front.  They also discovered that it had come out of the liver a bit and was attaching to his diaphragm.  Fat and happy little punk!  A little  lot more work than originally anticipated.  Caden did need just one of the units of blood out of the two ordered.  I am just so amazed at how calm under pressure Dr. Healey was.  The other doctors on the ICU floor that came to check on Caden gave us more of an insight into just how difficult it had been.  It was much more intense than he made it seem.  Dr. Hawkins said it takes a lot to get a rise out of Dr. Healey.  I think this is a blessing for my nerves.  I was already feeling like I could run a 5K in 20 minutes, I can't imagine what I would have done if he seemed hot under the collar about anything that happened in that OR room.  His calm demeanor put me more at ease.  He's kind of my favorite human on the planet today.  Well, tied for first.  My favorite human is laying in the bed next to me.  Snoring.  One of my favorite sounds right now.  From Caden, not Randy!

The scar is more than they anticipated as well.  It is causing him a good deal of pain today.  However, he is not swollen as much as I thought he would be.  I can tell a HUGE difference in his rib cage.  In fact, I am so used to seeing him distended, he actually looks malnourished today.  He just looks so skinny without that intruder.  We find out from pathology soon (maybe tomorrow) if it is totally dead.  They test the tissue around the tumor, which had a perfect border around it, to make sure than only healthy tissue surrounds.  If there is any unhealthy tissue around it we will have one more Round of chemo.  I hope this is not the case, but if it is, we know it will be worth it.  They have all been worth it, but Caden just finished the biggest hurdle of them all.  Tomorrow will be day two after surgery, so I think it may be intense, but so far, pain team has been amazing.  He just looks so amazing!

I remember the first time I ventured out of the hospital way back in February.  He was in surgery to get his port placed and his PICC line removed.  We had a couple of hours, so Randy made me leave.  I was almost hyperventilating as I walked out into the fresh air.  Like yesterday, my mind kept going to all of the fears.  When we made it to the restaurant, I was almost in a daze looking at all of the people going about their lives.  I felt so foreign.  I felt like I was going to cry.  I almost told an old woman, "My son has cancer."  It felt so weird to be out in public.  I wanted to run back to the security of the hospital.  Because even though things were seriously crazy and unknown, they knew how to take care of us.  Today is the polar opposite of that day.  I feel like I want to scream over the many balconies of Seattle Children's, "My son is cancer free!!!!!"  I want to shout it to the heavens, tell everyone that looks me in the eye.  I want to tell the whole world.  It is an amazing feeling!

Our roller coaster ride is not quite over, but we have hit that brake.  We are coasting to our final stop.  The adrenaline is still coursing through our veins, the emotions still fresh in our hearts, the images still blazing in our memories.  It has been an amazing, but tumultuous journey.  But our eyes are fixed on the end, our legs bounce in anticipation for that lap bar to release.  We are going to jump up as soon as we can and run down the ramp to our next adventure.  No matter what, our hands will hold onto one another! ( Because together is the place where we belong.  ~ said by Caden just now )

While You Were Sleeping

Caden,

The first gift you ever gave to me was on Christmas Eve 2000.  We had had a busy day of flights from Houston to Salt Lake City and both felt extremely exhausted.  As we were laying in bed that night, talking about all that had happened that day, I felt an undeniable movement in my stomach.  You made yourself known to me that night.  Dad tried to feel for himself, but I was the only one that felt your presence that night.  It was our first little secret.

The second gift came on May 14, 2001.  We had just picked up Grandma Burrell from the airport when I started to feel contractions.  I didn't think much of it, you were due in 8 more days and it never occurred to me that you would come early.  We went shopping that night for a few things, but I was super tired so we went home.  We went to bed early and woke up earlier than we thought we would  My water broke at 3:00AM on May 15th.  What a surprise that was!  You were ready to grace the world with your presence.

Then it's time for the pushing.  "Here she comes.  Here she comes."  Then the release from the pressure and the weight of my precious baby being placed on my stomach.  I had laid my head back on the pillow and heard your dad say, "It's a Boy!"  Oh, what a jokester.  Your name, Keilie Ann, had been picked out for months.  One look confirmed that, yes, I had had a boy!  My own little Caden Randy.  Your first practical joke, and boy did we laugh!

You were such a good baby!  I loved doing everything with you.  My favorite was snuggling cheek to cheek.  And, boy, did you have cheeks!  And thighs.  I found myself making up any excuse to hold you close, to bury my face in your sweet neck.  I found such joy being a mom.  Your mom.  I'm so lucky!

Our first scare came when you were 10 months old.  You had had days of throwing up and diarrhea.  It was getting more and more urgent that you stop loosing weight.  You may have had cheeks and thighs, but you have always been a low weight.  I was ordered to take you into Dr. Sidiki every day to check.  You had another hard night of not being able to keep anything down or in, so the next morning I was almost ready to beg them to put you in the hospital.  When Dr. Sidiki looked at you, he turned to me and said, "I'm sorry to have to tell you this, but Caden has Rotavirus.  He needs to be taken to the hospital."  With tears in my eyes, I said, "Thank You!"  I didn't know how to help you anymore.  We didn't have insurance at that time, but we didn't care how much it would cost.  We couldn't watch you suffer one more minute.  The real miracle came 24 hours after you were admitted.  You had recovered enough to be taken home.  We knew then what a fighter you are.

You were such an inquisitive little boy.  You loved to know how everything worked.  You loved to learn.  You also loved to torment Keilie.  Not so much when she was an infant, but when she was old enough to get around, you were right there trying out different experiments on her.  Like the time you were both sitting on the stairs.  Wooden stairs, remember?!  You were both about 4 stairs from the bottom when I heard a thump, thump, thump, thump... scream.  Keilie was bawling at the bottom, holding her head, as you sat fat and happy up top.  As I scooped her up, asking you what happened, you looked at me in all seriousness and said, "It's not my fault, it was my foot!"

The day you started Kindergarten was an exciting day for both of us.  I knew you were ready, you knew you were ready.  As I watched you walk into the school, not wanting me to come to your room, I was filled with such love for your courage.  And jealousy.  There were other mothers there, holding hands of their crying kids, while I walked away with tears in my eyes.  You have always been a strong boy.  You have always known what you wanted and what to do to get what you wanted.  You just didn't need me to hold your hand anymore.  I was the one that needed your hand, but I had to let you go a little that day.

Do you remember the first year I let you choose your own Halloween costume?  You chose that scary Grim Reaper.  I was a little sad that you didn't want to be a superhero, but knew that you were getting old enough to make some of your own decisions.  That night at the Halloween parade, the Primary had a panel of judges to give out prizes.  3rd place was a cute little girl- I forget her costume now.  2nd place was Little Bo Peep with an adorable dress and petticoat, golden curls bouncing as she skipped to grab her ribbon.  And then comes the announcement of first place.  "And First place goes to Caden Dirks, the Grim Reaper."  How proud (And shocked, didn't they see Bo Peep?) I was to watch you walk to the stage, 'Eye of the Tiger' playing out through the gym.  Out of all of those cute little girls in their beautiful costumes, you had won first place.

Another time of stress was Christmas 2010.  Of course there were many pictures taken, but it was so weird to see your eye glowing.  It was like a cat eye reflecting in almost all of the pictures.  It just felt so wrong, so we called a friend in our ward to ask about it.  The next day found us in the eye doctor's office.  We found out that your left eye was practically blind, that your right eye had been doing all of the work.  Your whole life you had had less vision than most have, and yet you were excelling in school.  As we went out to purchase patches and new glasses, you took it all in stride.  Not once did you complain about the patch placed over the sensitive skin around your eyes.  You never seemed to be self conscience about it either.  You gave off an almost "this is me now" kind of attitude.  And miracle of all miracles... six months later, your eye was seeing 20/30 with correction.  The doctor was amazed at how well you were doing.  Your body and brain fought hard to accomplish so much in such a short amount of time.  Caden, you are such a miracle boy.

From a very young age, you have been so spiritual.  You have always loved going to church, have always talked about loving the scriptures, and have told us many places you would love to go on your mission.  Each time you had disgusting food you would gag it down, saying it was good practice in case you were sent to a place with different foods.  You have always been such a good example of faith.  Do you remember your first lesson you gave at Family Home Evening?  It had been a long stretch of headaches for me, I was barely functioning in our family.  Many times I'd rely on you to help me get the kids dinner, help them with their chores and homework, and put them to bed.  In the lesson, you had a heavy bucket that you asked me to pretend was too heavy to carry.  Then you asked all of the kids to help me lift that bucket, telling them that it makes a load lighter to have many people help.  The spirit was so strong.  Caden, that was when I knew that you would be a great teacher.  Here you were, a 10 year old boy, teaching me the meaning of charity and service.  And now, at almost-13, you are teaching me, again.  You are teaching all of us.

These last few months have been like a dream.  I can't believe I am sitting in the Family Resource Center typing this post while you sleep just one floor below me.  How did we get here?  When looking at the 12 weeks stretching before us, wondering how we were going to survive, I couldn't really imagine being done.  I never thought it would be as hard as it was, or that you would suffer as much as you did.  Those darn feeding tubes!  And now, here we are.  I still don't know how we did it!  We had to check in this morning at 9:00AM.  Start time was supposed to be at 10:15, but when that time came and went without having heard from the doctors, we knew we had passed into Doctors Standard Time.  Finally, finally they came to take you back.  But at that moment, my fears came rushing to meet me, choking me with intensity.  You were going.  Would this be the last time I saw you in this life?  Would things become too much for your body to bear?  Would I see your smiling eyes, hear your laugh, snuggle your cheeks one more time?  How can I trust your precious life to these strangers?  As I held you for the last time, hugging you too tight and struggling to release you, I felt a calming peace come over me.  Caden, I know that prayers are answered, we have felt their power these last three months.  But even before that.  You have been an answer to my prayers from the moment I saw a positive sign on that dollar store home test.  Caden, you have been a light in this world, a beacon of hope for so many.  You have lifted those oppressed by sorrow, given hope to those that yearn for peace, given strength to those that long for their own release.  You are everything that a mother hopes for in their child.  You are my joy, my life, my world.  As I wait for news, any news at all, I pray that you are happy in your dreams.  I pray that not one thought that goes through your head is of any of the horrors you have seen these last 12 weeks.  That you remember all of the good that has happened in your short almost-13 years.  That you see your friends and family, the ones praying for your health.  The ones that will all cheer the moment they hear the news "Caden is Cancer Free!"  Come back to me, Mister.  I need to tell you just one more time "I love you!"

One day you may ask me when it was that we all fell in love with you.  And I'll tell you,

It was while you were sleeping.

Cheap Labor

 Our front flower garden has been a thorn in my side since we moved in.  Our first attempt to fix the mess was one year ago.  My parents came to visit us for Spring Break/Easter and ended up helping us hook the horribly placed bushes to our Yukon to be ripped out.  My mom helped me remove the river rock by hand.  This may or may not be the reason my dad left with Pneumonia.

 With the bushes and rock removed, I was left with a clean slate.  I purchased 10 perennial plants for the perimeter, large grasses to place in front of electrical stuff, and a beautiful azalea bush to detract from the big green phone box.  With the new bushes in, we placed down inexpensive bark knowing that when it got all faded and old we would just vacuum it up and place more down.

 And then the winds of Richland started.  Good bye bark, hello bare spots.  So I decided to pool the bark around the bushes and then place rock throughout the rest.  I loved the look!!  Again, each rock was touched by hand and placed in the garden.  Randy thought I was crazy to do it all by hand, but I love working in the yard!  However, that look didn't last too long.  Wind is not my favorite!  So, once again, I moved each rock by hand while Randy vacuumed out the last of the bark.  It was a large job, but it was nice to have the whole family involved.

 The last of our projects for a beautiful Saturday afternoon was removing the bushes in-between the driveways.  I love bushes and greenery, but each time we opened our door we hit into the bush.  Since we downsized quite a bit moving into this house, our garage is now our shed as well.  One day we'll move to a bigger house with more storage, but for now, we're just fine with this scenario.  

Good for us, not so good for the bushes.

You can see that there are only five members of our family in the above picture.  Someone needs to supervise and capture the pictures (and I'm always happy to volunteer), but where is Brennon?  He got water on his shirt- it needed to be changed.  Again, undeniable proof that he is my child.  I HATE wet clothes!!!

It may not sound like a fun activity to do as a family right before our last hurdle, but it was exactly what we needed.  It felt good to be out in the perfect weather, actually enjoying the slight breeze, and working with our hands.  We sat back and admired our work and ended up going the long way around the loop a few times to look at our accomplishments from every angle.  Caden had to be reminded to take breaks for both rest, water, and food, but it was so good to see him out and working.  He was reduced to a wheelchair after Round 1, barely able to walk upstairs, so it was refreshing to see him helping.  And just to clarify, the picture of them trying to pull out the bush was staged.  Our Yukon should get some credit in this project.  I would hate to hurt its feelings and have it die on us this week!

Easier

A month or two ago, Randy was talking to Keilie.  She said something that was so profound for a 10 year old. "Life will not always be easy.  It is meant to be hard." I have heard this said before by adults, but it struck me differently hearing that my child said it, that she understands that this life is a test.  We were tested on Thursday.

With the anesthesiology appointment at 1:15PM, we didn't have to leave until Thursday morning.  Wednesdays at home usually meant cleaning, organizing, and packing for another two weeks away from home, but this Wednesday was filled with sunshine and laziness.  Spectacular laziness.  Randy had an appointment with King County, so he dropped us off early at the hospital.  Brennon was with a friend so he didn't miss another day of school, which left Tyson, Caden and me to play at the hospital.  Man, it was so thrilling.  If you haven't sat in a hospital for hours on end, you are missing out.  Phew, the fun we had!!  They weighed and measured Caden and told us particulars about the surgery.  He is scheduled for a six hours surgery time with three days set aside for ICU.  He probably won't need three days, but they like to have it scheduled, just in case.  They usually like to give an update half-way through, so don't be alarmed if we get a page in the middle; it doesn't mean bad news is coming.  I felt like I had a good handle on what we needed to do, so the appointment went fast.  However, it also felt like a stone had been placed in my stomach.  Caden's weight was not what I would have liked.  It was the same as it had been one week ago.  I knew I needed to ask Sue about the feeding tube.

We walked to the Hematology/Oncology clinic as if walking through the desert.  Sue was with a patient and the Charge Nurse was on lunch, so they told us to come back after meeting with the surgeon.  I was able to listen raptly to what Dr. Healey was saying, but the thought of what was coming made me a bit distracted.  Good thing I had a paper and pen to take notes.

*The surgery itself would take about five hours.  Six hours was to go to sleep and wake up.
*He had done many liver resections, so he estimated that he would be in the hospital for about 7 days.  This was good news since I was worried he wouldn't be out by his birthday.  Maybe he really will!
*The tumor had shrunk enough to make the resection optimal.  They would, in essence, be able to make a perfect straight line to take the right lobe off and leave the left alone.
*We all have about 60% right lobe, 40% left.  They will need to take about 65% of the liver and leave 35% of the left lateral lobe.  This is enough to sustain Caden while it regenerates.  It will be 100% capable in six weeks maximum.
*Because the tumor had been pressing on the main artery, the left lobe had over compensated and actually grew in size to be bigger than normal.  This means that it has already been working to make up for the right side.  Again, optimal for the surgery.  The left side is used to working for the right, so it won't "notice" as much when there is no right side at all.  It already knows what to do.  Again, if there were a situation that would have the easiest outcome, it's Caden's situation.  We have been richly blessed!!!
*They will take the gallbladder as well.  Caden thinks this is pretty cool.
*The scar will follow under the ribs from the center of the left rib to his right side.  It will not be as big as I thought, although it is quite large compared to some procedures.  Some actually have incisions up the sternum.  Dr. Healey said that some need it, but he doesn't anticipate needing it in Caden's case.

We have a big hurdle to jump this week, but I feel like we are well informed.  Let's get this done!

After the appointment, Caden said in a false voice, "OK, let's head home!"  Man, I wish we would have.  We made it back to Hem/Onc to be told that he did have to get the tube.  He chose me to sit in the room with him while Randy and Tyson waited in the waiting room.  We got all of the supplies, placed the sticker on his face, and prepared for the placement.  Dr. Healey told Caden that those that have good nutrition leading up to surgery fair better than those that don't.  I was reminding Caden of this when he turned to me and said, "Mom, I know this.  I heard him.  But, it doesn't make this easier!"  He's right!  He knew the benefits of that tube.  He knew that Sue wouldn't order it for fun, that she wouldn't do it to make Caden hurt.  That the food being pumped into his belly 24/7 would be better than other foods.  But that doesn't take away the fact that he was getting ready to have a plastic tube shoved into his nose again.  That this was the 13th tube that had been ordered.  Words and knowledge can give us peace of mind, but it doesn't take away the actual pain. 

When Robin sat down with all of the supplies in front of her, Caden sat up straight and said, "Let's do this!" and held his head high.  I have never felt more proud of his bravery.  Not once did he fret, not an ounce of anxiety showed through his armor.  He was ready, he could do this, let's just get this over with.  So she started pushing, he started swallowing, and he started sneezing.  I could see more and more of the tube disappearing, but it wasn't going fast enough.  We both kept congratulating him, prompting him to swallow.  Robin kept saying that she just needed to get it past "the point."  With as much as was gone, I thought we had made it.  She kept pushing, he kept sneezing, and it soon turned into a mess.  His left eye was bloodshot, he was sneezing out of control, and he was starting to get frantic.  After each attempt, he asked if it was done.  She finally called for backup.  In walks Heidi, the one that placed the last one; the best one placed to date.  I was so happy to see her.  She is amazing.  As she was washing her hands and getting prepped, Robin just kept the tube hanging from Caden's nose.  It wasn't coming out on it's own, so they thought they'd made it to "that point" and didn't want to disturb it.  Heidi said she was going to try, and again, Caden sat up straight, ready to be done.  She tried for a few seconds and deduced that she needed to take it out.  Her first small tug elicited a small scream from Caden.  This got a look of concern from both Heidi and Robin.  As she continued to pull it out, each time Caden gave a protest, they told me that it had coiled in his nasal cavity.  Four inches of hard plastic had wound it's way into the back of his nose and was now being taken out.  When it was finally out, blood pouring from his nostril, the tears started flowing.  He was done!

In my mind, if Heidi could start from scratch, she would be able to get it in- no problem.  She was amazing just one week ago getting tube #12 placed.  We had a fight right before, but Caden got to the point where he knew he could do it on his own.  She was prepping all of her supplies to begin again, but Caden was done.  He was begging once more.  Asking me to ask Sue one more time.  Please, just ask her.  Tell her how much it hurts.  Please don't make me do this, mom.  I'll do anything.  Please, please, please.  I was frantic.  I knew Heidi could do it.  She was ready and waiting.  I was tired.  I wanted to go home.  And so "mean mom" came out.  And demanded that Caden sit down and get it placed.  "Mean mom" told him that she would either hold his hand or hold his head, he needed to choose.  But, "mean mom" was tired, too.  So, she called Randy in to negotiate while both moms went into the hall.  And just lost it.  Cried hard enough that a passing nurse asked what she could do.  I'm so glad that it was almost closing time in the Clinic.  I was having a hard time calming myself down.  Tears and sobs of anguish left me without the ultimate relief, he still needed that tube. 

Robin came back to inform us that Sue was with a patient, that she couldn't come right now, that yes, indeed, he needed that tube.  Caden would not be swayed, he wanted to talk to her himself.  Randy, Heidi, and I looked at one another and made a decision that I regret more than anything I have ever done in my entire life.  As if we had planned it in advance, I walked to the chair and grabbed Caden's wrists, Randy grabbed his head, and Heidi leaned in close.  As Caden realized what we were doing, his blood shot eyes opened wider than I have ever seen, his screams of protest rang out for all to hear, and my heart broke more than it ever has.  As Heidi pushed that tube in his nose, Caden was screaming like we were killing him.  She pushed and pushed, hand over hand, and the next thing we see is the tube coming out of his mouth.  She quickly pulled it out, causing Caden to throw up all over himself.  I'm not sure how I was able to even stand.  I was racked with sobs and tears, almost begging Caden to forgive me.  No words actually left my lips, I was spent.  We all raced around to help Caden get cleaned up, all the while seeing the hurt and betrayal in his glances.  What had we done?  We took a boy that had been through hell the last 12 weeks and pushed him past the limit he could bare.  We took away the choice, we made him do it just one more time.  As I looked at the bruises I left on my child's wrists, I felt the last amount of decency leave me.  I hated myself for what I had done.  If I thought I had cried before, it was nothing to how I cried now.  What has cancer done to me?

Randy stayed with Caden while we waited for Sue to come.  Robin left to grab a new shirt for Caden and came back to talk to me while it was sent up.  As I cried, asking the rhetorical why, she said, "You know.  We nurses love parents like you.  You are our heros."  Incredulous, I asked how that could be.  Did she not see what I had just done?  How I had abused my own child, that he had been hurt by my hands?  "You don't like to do it, but you know it's needed.  You love your child enough to know that hard things need to be done to make their lives better in the end."  Her words did not fall on a softened heart, I'm sad to say.  I looked her in the eye, and said, "Yeah, but it doesn't make it easier."  I know why we tried it, I do want him to recover quickly, I do want the best possible scenario for Caden so that when he goes under the knife (and is asleep for 6 hours) everything is at its best!  But it doesn't make it hurt any less knowing that I pushed him past his limit.  I will never forget his face, how his eyes met mine at that moment and begged me to stop.  And how I looked away and wept, holding his wrists even harder to stop him from stopping us.  I hate mean mom!  More than I hate Cancer.  And that's saying something.

Sue found me on my knees.  As I explained what had just happened, hiccuping and drying my face, she gave me a much needed lifeline.  I felt like I was heading down a swift current, grasping for anything at all to stop me from going over, and at the last second, Sue offered me a rope.  She gave us strict orders to monitor his eating and drinking.  I could tell that she would rather have the tube placed, but she knew it couldn't happen again.  She loves Caden enough to know that we had already damaged his psyche, there wasn't a possible way to do it again.  He has been drinking at least 2 liters of water and eating at least 2,000 calories each day.  These are calories that we can count.  Everything that has entered his lips has been weighed, measured, or divided to know the exact count.  This time they are not empty calories from the vending machines, like they were in the hospital, but calories for real meals.  We are weighing him every day at home, monitoring his progress with strict orders to come straight back if he starts to lose weight.  He's not.  I have never wanted someone to be gain weight as much as I want him to.

Words have a way of teaching, inspiring, comforting, reprimanding, or softening.  They can be used for healing or hurting.  But sometimes words are just words.  Even when said with the best intentions, they can be just words.  Because just like my sweet Keilie said, "Life is not easy." Sometimes, when life is hard, we don't want to hear words.  Because, sometimes, it doesn't make it easier.  How totally ready I am for Wednesday.  I feel like we are all at the edge of our seats, heads held high, with our brave face on and our courageous voices saying, "Let's do this."  Because those words are words I need to hear.

Surprise Birthday Party

Caden has always had great teachers and leaders.  Mrs. Fowler in third grade that called me after he was diagnosed with Amblyopia, asking what she could do for Caden while he had to have the eye patch.  Mr. Ridgeway in sixth grade that challenged and befriended Caden and became his favorite teacher, thus far.  My favorite example is when he found Caden perusing books at the library.  "Oh, please, Caden.  We all know you don't know how to read!"  Caden said he loved that Mr. Ridgeway always joked about things you did well and made you feel smart.  And Mrs. Bush from Enterprise Middle School that called me soon after we moved here to ask me what she could do for Caden so he didn't fall through the cracks.  She asked about Caden's interests so she could sit him next to kids with the same likes.  All of these teachers have shown me the incredible power of caring adults.  So many others have as well, but these teachers stand out in my mind in the early AM.  I truly believe that it takes a community to raise a child.

Caden struggled with the move from Wyoming to Washington.  He had a BEST friend that will never be topped.  He lived there from the time he was four until eleven.  That's a good portion of his life, all that he knows.  However, I've said it before and I'll say it again, we were lead to Richland.  Brother Walker and Brother Bagley have been called to be Caden's Scout Leaders.  I can not imagine two better men to be his leaders.  They make everything fun, but also hold each boy to the responsibilities required to make their Scouting experience fun, memorable, but also real.  Campouts are the highlight of Caden's summer.  He feels enveloped by these leaders, a part of the group, a valuable asset to the Hillview team.  He truly loves and respects these two men.  This is why we asked them for their help.

When talking to the Doctors about the surgery, one of them asked how long he would be in the hospital recovering.  I mentioned that Sue had told us 7 days.  Dr. Hawkins, the number one Sarcoma Doctor in the nation, look at me and said in exasperation, "Oh Yeah!  At least!!" This made me think that Caden might not be home for his birthday on May 15.  I had gotten it into my head that he'd have the surgery on May 7th, be released on May 14th, and we'd have a low-key celebration with all of his friends on May 15th.  With Dr. Hawkins declaration, I got a little nervous that he'd be stuck in that hospital on a big birthday year.  Teenager in our midst year.  So, we asked Brother Walker and Brother Bagley what they thought we could do.  Their response?  We'll take it from here.  And just like that, our idea turned into a Surprise Birthday Party for Caden last night.  He had no idea!  In fact, he didn't believe it was really for him after they had said surprise.  He thought it was a joke.  Come on, they/re 12 & 13 year old boys, for heaven's sake!  However, he finally got the hint that the cake, ice cream, games, and fun were all planned for him.  And he couldn't wait to tell me all about it when he got home.

    I am so incredibly grateful for these men and boys that love our son.  They have expressed interest on many occasions that they would like to come and visit Caden in Seattle.  This was just never possible.  It always seemed that the timing was off, not all could come, or Caden was too sick to have visitors.  Caden understood, but always commented on how much he missed his friends, church, and activities.  This was the perfect birthday gift they could have given.  Thank you Brother Bagley, Brother Walker, and the Hillview Ward Deacon's Quorum.  We love you so much!!!

Happy Early 13th Birthday, Caden!!