Leap Day Birthday Boy!!

Because we are trying to keep the kids' school schedules as absent-free as we possibly can, Brennon had got to go to school on his birthday.  I admit that it was kind of difficult to send them, since we had so many visiting cousins in town, but it ended up being quite perfect.  Grandpa and Grandma Burrell were able to sit with him and his friends for lunch while the rest of us prepared for the epic adventures to come, all starting with his baptism at 4:30pm.

 I had already started to plan his baptism before everything fell apart.  Maybe I knew something was up, I don't know.  Anyway, we had always planned to keep it pretty low-key.  He asked Ash and Russ to say the prayers, asked Grandma Burrell to give the talk on Baptism, Grandma Dirks to give the talk on The Gift of the Holy Ghost, and told me the songs he wanted to sing.  Since I wasn't able to put together a musical number (I usually like to do something special for my kids for their special day) I decided I would play the piano.  These pictures were taken in somewhat of a hurry, since people were starting to show up, and my Men needed to change into their baptismal clothing.

 This picture turned out pretty blurry, but I have one like this with all of my kids.  I am so proud of my little Brennon.  It will be so fun to compare all of their heights, once I have one like this for all five of my kids.

All ready for his special covenant with his Heavenly Father.

We hurriedly took a family picture before leaving.  In an attempt to make sure we fit everything into his big day, we had things planned out, almost down to the minute.  The baptism took just 40 minutes from start to clean-up.  We rushed home as an extended family for one of Brennon's favorite meals.  No, we didn't have Cereal with Milk!  Nope, we had White Chicken Chili with bread sticks.  And let me just say, we made the perfect amount of chili to feed 14 adults, 4 teenagers, and 11 kids age 10-2. 

 With so much going on in the day, and my mind occupied with the pain and suffering of the Boy in the Upstairs Bed, Randy dared me to ask for help preparing everything.  I don't usually take his lame dares, but I did on this day.  Ashlee made and decorated the cupcakes that were given out at Brennon's party, Steve and Natalie purchased and filled the gift bags, also given out at Brennon's party, and Jamie made two sheet cakes: Texas and Almond.  Brennon chose the white one to use as his Birthday Cake.  From the boy that likes all things Vanilla, this came as no surprise.  We just didn't tell him it wasn't Vanilla.

 Boy, how I love this little guy.  He is such a sweet, tender thing.  He was the hardest baby, by far, but has turned into my sweet, caring, emotional little snuggler.  He brings me so much happiness!

The determined face I know, and love!

There was little time between dinner and the friend party we were able to set up.  When he turned four, nobody would host a fun party, because it wasn't on a weekend.  This did not happen this time.  We were able to have Game On come to our home for an hour and a half of nothing but games!  And no mess to clean up in the house.  Bonus!

 The Bigger kids got to play outside (the weather was absolutely perfect!)

 (Carson, Steve, Hudson, and Randy)

 * We have decided that these two cause a little bit of trouble when together (remember the broken jaw 20 minutes before the Thanksgiving turkey a few years ago?), so it was nice to have them so tamely occupied.*

While the bigger party happened inside!  It ended up being the BEST party we could have ever imagined for a Monday Night, Leap Day Birthday Celebration!!

 Who says girls can't have an absolute blast playing video games?!

With a party that lasted from 4:30-9:00pm, I'd say that Brennon was pretty spoiled.  It made it even more special to have so many travel to be with us.  I know it was hard to have it all on a Monday night, that people had to take off extra days of work to make it happen, so I want to say Thank You to those that helped us make Brennon's birthday an epic event.  

Happy 8th/2nd Birthday, Brennon Wayne!  

You are SOOO Loved!!!

Adoption

One week ago today, Randy got an email that has already changed our lives.  We have been approved for an adoption for a sweet, 1-year old little girl.  Her name is Posie, but we're thinking about changing her name to Mira- short for Miracle.  Wanna see a picture of the newest addition to the Randy Dirks' family?  Yes?!  Good, cause I am bursting to show you!

Isn't she gorgeous?!?!

Caden had made a comment once, during one of his more pain-filled moments, that he wished he had a dog to just snuggle and pet.  This got us thinking that our entire family would benefit from a therapy dog.  Saturday, we talked to our Social Worker about the many benefits, asking if she had any suggestions for a company to go through.  She said she would get us an article of a study done about benefits, and would ask around for organizations that could possibly help us find a therapy dog.  And, of course, Randy got on and researched different places himself.  Randy researches everything.  Five emails later, we waited anxiously for any response.

Four hours after the first email was sent, there was an email waiting for Randy from a place just two hours north of the hospital- Brigadoon Service Dogs.  They wondered if we would be interested in a sweet Chihuahua/Yorkie mix.  We have never really wanted a tiny dog like that, so Randy sent them a reply that that wouldn't be a great fit for our family.  I was scared, thinking we had ruined our chances with the only organization that had actually answered our email query.  After all, beggars can't be choosers, right?  Little did we know that our Heavenly Father was working to get us our sweet Miracle.

During the time after Randy said no to the other dog, a foster family that helps to train dogs in family life and obedience called Denise, owner and founder of Brigadoon, saying that Posie was just not going to work out as a Service Dog.  She is too timid and shy around new people and new places.  In essence- she is just too gentle to be a leader.  The only thing she wants in life is to be loved and snuggled.  They were sad to make the decision, because they had fallen in love with her so completely, but they new they needed to get another puppy to train.  She was ready to be sold as a therapy dog.  One hour after Randy's refusal, they offered Posie to us.  Sunday morning, our last day of the five-day Irinotecan, Randy drove up to Bellingham to check her out.  He said the moment she walked into the room he knew she was the one.  After hearing more of our story, more of our needs, they knew she was meant for our family.  They called it fate.  We call it The Hand of a Loving Heavenly Father.

Sunday night, we were bursting to tell Caden that we had found him the perfect dog.  We kind of wanted to surprise him with her in person at Brigadoon on Tuesday, but I couldn't wait another minute.  We showed him her picture and subtly asked her what he thought of her.  He said she was a cute dog, and started to eat some dinner, and then, then he got it.  Electric went through his body as the realization hit him.

"WAIT, is she mine?  Is she my dog?"  And the tears began to fall.

He could barely keep it together for the rest of the night.  Each time he thought of her, he would choke up again.  He was so excited about every single aspect of having her.  He said he would do anything, if it meant that she was his.  At that moment, without a dog to touch or even see in person, she changed his outlook on life.  He was thinking of things he wanted to do with her (take her to the river, take her camping, take her on the Badger Mountain hike, etc), looking forward with hope and excitement for better days.  She was an answer to prayers for the delicate mind and psyche of The Boy in the Bed.  His first order of business- to change her name to Miracle, but call her Mira.

"Heavenly Father gave me a Miracle."

 Meeting her for the first time.  And the tears began to fall.

Mira will be spayed on March 2.  She will be kept and trained (she has been trained extensively since she was 5 months old, remember) until Caden is well enough to take her home after his own recovery.  We are trying to get a time where she can visit him in the hospital, too.  It may not happen, but even the thought gets Caden excited.  I love her already for what she has done for him.

We were able to tell the kids on Friday night.  Caden choked up being able to deliver the line, "And the best part about her?!  She's ours!"  And the tears began to fall.  For all of us this time.

Green Belt

Keilie has decided not to continue in Taekwondo.  It makes me sad, but she doesn't enjoy it as much as she thought she would, and I don't have the mental energies to make her do what she doesn't want to do.  So, we allowed her to finish out February, and then quit.

Today, Shelby, Brennon and Tyson tested to advance from Orange Belt to Green Belt.  Mr. Roach once again did all of the colored belts at noon.  I don't like that he does it like this, but only because it takes two hours, when, if he did it the way that I think he should, it should only take one hour.  It was still fun to watch them prove that they are ready to advance.  And, truth be told, they did better at this testing that they have at any other testing.  They truly are doing so well.

Because there were so many kids testing for Green Belt, and because my kids are some of the smallest to test, they were in the front row.  This made it hard to get good pictures of them performing, even though I was in the front row of parental seating.  This was before they started, while other children were being placed.  Hence, Brennon and Shelby looking around, instead of focusing on their instructor.

While having the Orange class do their forms, he noticed that Tyson was lagging in just one area.  He had him come before the whole audience and perform it on his own.  I was so glad, because he did amazing!  He was so sure and so confident.  I was so proud to see the vast improvements he is making, especially since he is one of the youngest in the group.

 Tyson's broken board

 Brennon's broken board

Shelby's broken board

While waiting for the other Belts to perform, he had their class sit on the wall, close to me.  There wasn't enough room my Brennon and Tyson, so this forced Shelby to sit at the end of the line.  Seeing this smile, I was so happy there wasn't room.  Shelby really is a fierce little fighter, she loves Taekwondo so much.

 Tyson accepting his Green Belt

 Shelby accepting her Green Belt

 Brennon accepting his Green Belt

The above picture  was the best I could capture- I was trying my hardest to keep my emotions in check.  You see, before walking to join his newly advanced students, Mr. Roach approached me with a Green Belt for the boy that couldn't make it from his bed to watch his brothers and sister advance.  With misted eyes, he told me that he knew Caden would have been there advancing along with them, and that he'd more than earned his Green Belt.  I couldn't agree more.  Before the picture was taken, Shelby saw me holding both the belt and the tears in, and started to cry herself.  She was so happy to see that Caden would advance with them.  She fully expects him to join them, when he is able.  I love my fierce, tender little Shelby.  

I am so proud of my kids.  I love that they are still so excited and determined in their advancing in Taekwondo.  They are now considered Intermediate.  It will take them at least 4-6 months to advance.  Maybe less, with how much they have been practicing.  They fuel each other's determination and excitement.  I love what they learn here.  It's way more than kicks and punches, it's how to be incredible human beings.  Well, more incredible than they already are!

Fortune Cookies

In the last two days, Caden has spent 12+ hours in the hospital, hooked up and sitting in one uncomfortable chair.  It is really wearing on him.  Well, it all is.  He just doesn't feel well.  When we told him that they have another 8 hour day planned for him tomorrow, he started to cry.  We told him that it was his choice, that we could have him get just one bag of fluids and one dose of all IV nausea meds, and then we could just blaze home. He perked right up and dried his tears.

We were supposed to have dinner brought in to us, but for some reason they cancelled.  Randy had been hoping for some kind of Asian cuisine, so without a dinner option, he got take out from a place around the corner.  He used the excuse that Caden really loves the Hot & Spicy soup, but we all know the real reason he was so anxious was because he wanted it!  He even wowed me with his Salesman tone!  Don't tell him, but the tone was not needed- Chinese sounded perfect after a day like we've had.

After the meal, we told Caden that he needed to choose his fortune cookie, joking that we didn't want him to jinx his future, in case it said something like, "Your cancer is being cured- keep up the fight!"  As it turns out, it wasn't that one exactly, but it was pretty prophetic.

"Getting away for the weekend will help clear your mind."

I couldn't agree more.

Fortune Cookies are awesome!!  Looks like we may need to get Chinese more often.  Plus, they delivered.  Bonus!!

For our own record:
~2/24/16~
5:56 Throw Up and BM
11:23 Throw up and BM to Diarrhea
11:37 Diarrhea
~2/25/16~
2:17 Diarrhea
4:30 Diarrhea
5:54 Throw Up and Diarrhea
9:27 Diarrhea
10:27 Throw Up
1:30 Diarrhea
6:28- Nothing yet!!!  Fingers crossed for a better night!!!

Side effects

Since January 17th, Caden has been in some major pain.  It was told to us by a doctor that there is no pain on earth that compares to that of cancer pain.  After seeing Caden for the past few weeks, I tend to agree.  From the moment that Sue told us the news, she has given Caden all different kinds of medications to help him with his pain- among other things.  Because of this, his pain has decreased from the tumor pain, but other side effects are now added to the scenario.  Caden has not had a good bowel movement for almost three weeks.  It was always a concern, something that she asked us first thing about.  We kept telling her that we were trying all we could, but he was never able to drink enough or keep anything down long enough to help with the constipation.  Then, his guts were so backed up, it was causing pain and vomitting, which in turn was pushing on the diaphragm, which caused pain, which was leaving little room for his stomach to really accept anything, which made him throw up, which again hurt his abdomen.  It has been one vicious cycle after the other.  From day one.  Yes, we did have a good week last week, but he wasn't able to leave behind the cares of the side effects.  We were never really able to forget what he is going through.

One of the side effects of the five-day Irinotecan is diarrhea.  Never in my life would I have guessed that I would pray for a side effect of chemo.  But as the days passed without any constipation relief, I found myself praying that the diarrhea would begin, so that he could get his intestines and gut cleansed.  Sue said it would be between day 7-10, but you better believe I wanted it day 2. The days has arrived.  Caden started out our sleep-hours night with a session of puking because he was trying to push.  Once the bottom section of his intestines were cleared, he didn't really need to push much after that.  Every two hours, Caden was sitting on the toilet for at least 15 minutes, and then would take about a 20 minute shower.  He'd barely get back in bed, it seemed, and he'd start the whole thing over again.  He didn't throw up each time, but he did throw up a bunch.  It was a long, harrowing night.

For other kids, as soon as they have one loose stool, they are given a double dose of a medication to staunch the diarrhea.  Because of Caden's unique situation (do you see how Caden always has unique situations?! I sure do) we let him have diarrhea for a few hours, just to make sure that it cleaned everything out.  At 2:30AM  he was able to take the double dose.  We were instructed to wait until the next loose stool, in case one double dose was all that was needed.  One was not enough.  We will now give him a dose of the anti-diarrhea medication every time he has diarrhea- if it has been two hours since the last dose.  Once he goes without diarrhea for 12 hours, we can stop the medications, and he is out of the woods from the side effect.

From the very beginning of this whole mess, constipation has been a major concern.  He doesn't need as much Oxycodone as he did in the beginning, and because of the new prescription, he doesn't need as much pain meds period.  But here we are, just hours from his first real poop in ages, and we have to change our mind set from "Please, Heavenly Father, help him to poop!" to "Oh, crap (pun intended), he's going again."  It's a delicate dance, one that we don't really know the steps to, but the music is fast and our feet are sore.  We are so tired. 

I remember the times when I was this tired after having a new baby.  As they grow, their days and nights slowly begin to right themselves.  However, just before they figure out that they should be sleeping at 10:00pm, it always seems like they need to test the boundaries.  You get one good night where they go to sleep perfectly- oh the joy!  However, the next night with giddy anticipation of an early night's rest, your sweet bundle of joy is wide awake, cooing, and just being completely adorable.  "Baby, you are so cute.  I love you so much.  I would love to see you smile and play like this...tomorrow, while the sun is shining and mommy doesn't want to cry from exhaustion.  Go to sleep, cutie!  Now, kay?!" (Smile, kiss, kiss, kiss and one more kiss because they have perfect cheeks)

"Side effect, thank you for coming and rescuing Caden's bowels.  Thank you for helping him in just two hours with something that we have tried for weeks to do.  He's done now.  Go to sleep, ugly! NOW!!!"  (Middle Finger salute, door hit on the way out)

Feelings

On January 10th, Danielle sent me pictures of Payton taking Inside Out selfies. We thought it was so fun, so Caden and I took some, with promises to do it with the other kids the next day. Caden was having such a hard time schooling his facial expressions for some of them, so this was an outtake. 

See how much fun we were having? See the radiance of his smile? It was a fun night. Look at the health that he has. 

This picture was taken just one month later, on February 13th. You can see the sunken, sickly look. He was SO sick this week at home. Remember, he was so worried about that feeding tube. Each time he threw up, he was weighing himself. We were all worried so much about that stupid feeding tube. 

I don't have an update picture that shows his physique, but I do have a somewhat recent head shot. This was from Sunday, one of his good days. 

Now

Then

Caden had his appointment today. When he stepped on the scale, no one believed it. We actually took him to a different scale, positive the one he had been weighed on was broken. Since January 20, 2016, just 35 days, Caden has lost 22.5 pounds. This was in spite of a great week where he didn't throw up, got double the fluids, and ate a good lunch, dinner, and sometimes late-night snacks. Even through that amazing week, he still lost five pounds. His body has burned through the little fat that he had and is now burning through the muscle. He is wasting away. We were told that he is speeding down the downward spiral, that it will take a lot to make it back to the surface. This morning I couldn't  believe that we have only two more weeks until surgery. Tonight, I am back to feeling like March 9th is too far away, a lifetime away. 

Tonight I just wish this could not be my life. My baby, my sweet, sweet boy is withering away. My heart hurts so much tonight. I just want him home and able to play with his brothers and sisters again. Gosh dang it, I just want my son to be healthy and our family back together again!!!!!

And JOY

Wednesday's Warrior

I know that Caden is "The Boy in the Bed," but I think I'm also going to remember him as my "Wednesday Warrior."  Tomorrow he gets his second-to-last dose of Vincristine, the "easy" chemo.  It is so freeing to know that it will take less than 30 seconds to administer the rest of his chemo, though the side effects will take the most time to recover from.

Although we know that tomorrow's day will be short (2 hours), it is still something that causes him great anxiety.  As the clock ticks down to his appointment, Caden becomes more and more subdued and withdrawn.  He keeps his eyes closed more, stops talking, and just moves around when and where we tell him to.  He also asks to be pushed around in his wheelchair more (thank you again, Howard and Janelle).  Once he is cleared to go "home" he doesn't want to do anything but come back and go to sleep.  No talking, no eating, no nothing- just sleep for the rest of the day.  Things will gradually get better a few days later...and then the countdown begins again.  Wednesdays have become my least favorite day of the week.  With how great this last week went, I hope that we can just continue how it's been.  It has been such a nice reprieve from the hardship, but it almost makes it harder the next time he does throw up and struggle.  It is my expectations that are dashed.  Is it so wrong for me to want my child to be spared the misery?

The day after Sue told him the news, and we got to explain further that he didn't need a feeding tube, Caden revealed to me that the reason he had put on jeans was because he was concealing a second pair of comfy pants under them.  He was always looking for ways to have extra weight on his body.  He asked us at lunch that day how many calories were in his burrito, laughing at himself for having forgotten that it didn't matter anymore.  He asked again at dinner.  Still, days later, he has to remind himself that calories, and extra clothing, and even prayers that they won't make him get one are not necessary.  He truly was suffering mentally and emotionally thinking of that feeding tube.  Had I truly known what it was going to do to him, I would have refused it day one and not even allowed talk of weight in front of him.  I understand why nutrition is important for him (he is a teen-aged boy, after all), but emotions play a large roll in healing, too.  He has been emotionally drowning in front of my eyes.  Oh, how I hate cancer.

We are hope, hope, hoping to be able to go home after our appointment with Sue on Friday morning.  It seems that this week has flown by because he has felt so well despite the intense chemo, yet dragged on because I wanted to get our family together to bask in the good mood his "health" brought.  Everything, it seems, is a give or take, good or bad, happy or sad situation right now. 

One countdown we are all looking forward to is Brennon's birthday, Baptism, and birthday party on Monday.  It will be so much fun to have: Randy, Stephanie, Caden, Keilie, Shelby, Brennon, Tyson, Darwin, Jackie, Wayne, Rachelle, Sherry, Ryan, Steve, Natalie, Allyson, Carson, Hudson, Ashlee, Russ, McKaylee, Daphnee, Austen, Aria, and Everly at our home.  We'll miss the others in our family that couldn't make it up, but we are going to party like it was 1999!!!  And, believe me, I graduated in 1999, so I am the most qualified to bust out the moves and get the party started right!  Danielle, this one is for you:

COWABUNGA TO THE RABUNGA!!!!!!!!!

Buh-bye, Big I!

Caden finished his fifth and final day of Irinotecan!! He is done with his fourth week of chemo! Two more Wednesdays, each with just a simple push through the port, and he is done with chemo before his big surgery. Fantastic!!

With as well as he has been feeling with the extra nausea medicines and the extra fluids each day, it is easy to forget that he is fighting for his very life. He has eaten lunch and dinner each day. During chemo days, is that even possible?!?! He has been joking more, laughing more, talking more, doing everything just more! It has been such an unexpected, dramatic change, it feels almost like a dream. This is my Caden, he can't be sick, right? Besides the missing hair and weakness, you would never know he was as sick as he truly is. It's easy to have hope for better days when this day feels so wonderful. 

Moments after we got on the elevator to go back to the RMH, he somewhat loudly said, "I love you, mom. You usually say it first, so I wanted to surprise you and say it first." Be still, my heart. Oh, how I love that boy!

We have a two day break from the hospital. Wednesday brings another chemo day, with a possibility to go home on Friday. Fingers crossed! I would love to be together as a family while he feels this good. Brennon's birthday on the 29th will be even that much greater!

Vista views

We are witnessing the most beautiful vista right now. Caden had another amazing day. He not only has not been nauseous- and by extension has not thrown up- but he ate lunch, dinner, and late-night snack yesterday. He continued his joking fun all day, and actually got onto his iPad to watch his signature YouTube videos about cool science and life hacks. He also looked through hundreds of pictures of puppies. I think I have him convinced that Crackers would be a fun dog name! Or maybe even Chips. Or Ruffles. And after all of his Friday awesomeness, he once again slept through the night. Seeing Caden this engaged in life after such a harrowing month is sunshine kisses on my face. 

Last night as Caden was saying our family prayer, he said, "We thank Thee that I was not weighed today." Even though Caden heard from Sue that the pressure was off, he didn't quite understand. When we told him exactly what it meant, the absolute giddy, happy smile that radiated his face was sunshine kisses on my soul. 

I am thankful for this ride, and even more thankful for this vista. We have needed it desperately. 

Six pack, maybe?

Wanting to give Caden every possible solution to his nausea, Sue had us stay longer yesterday for more IV nausea meds and more fluids. Caden was able to get twice the nausea meds and 2- liters of fluids. It.was.the.best.night!!! He came home (RMH) and ate some dinner (in the kitchen area, surprise, surprise) watched and played along to Family Feud, laughed while watching Impractical Jokers, took two long showers, and slept through the night, without throwing up once! Then...he woke up, took another long shower, asked to wear jeans (he has worn comfy pants since January 17th) and walked down to the car!! I almost cried in relief. My Caden feels well today!!

Sue stopped by to see what we wanted to do today. When she heard our amazing news, she ordered today, tomorrow, and Sunday to go exactly as it did yesterday. It means more time at the hospital, but who cares about that when he feels this great after?!

She got to tell him the good news about the feeding tube. She said that she was working out ways to help get meat on his bones, saying that he would get IV nutrition the moment he was out of surgery, for the entire two weeks of recovery. 

"So...do you think you could ask her to order me some extra weight on my stomach to give me a six pack? Maybe a little extra in each arm and peck?"

There was a moment of stunned silence and then everyone within eat shot burst into peels of laughter. Not only was Caden feeling so much better, he shared his amazing humor with all of us today. 

The last 24-hours have felt absolutely amazing. We have our Caden fully back! Caden is a suffer-in-silence kind of kid, Always has been. So when he complains, the pain is more than most would be able to handle. He has not been complaining much the last week, but he has also not said much, either. So, to not only hear his voice, but to hear him joke?! Music to my ears, I tell you!!

Pete Nelson!

When we started this cancer journey, and Caden was given the opportunity to Make A Wish, his initial thought was to either meet Brian Reagan or get a treehouse made by Pete Nelson of Treehouse Masters. Since we don't live near a copse of trees, or even near one good tree, Caden immediately took that off of his Wish list. And then Tricia was able to get that special meeting in March 2014 with Brian Regan before the show that we had given Caden tickets to for Christmas. Meeting him was something that I will never forget. The stars in Caden's eyes, and Caden's shy demeanor made for an amazing moment for this mom! Forget the unforgettable show and call-out he gave Caden!! Wow, that is still such a cool memory. 

Fast forward to an amazing Make A Wish trip to DisneyWorld, a trip that could never be replicated in a million years!! Still the best time we've ever had as a family!

Today, Caden had chemo at 10:00. He had a hard before-sleep night, but ended up sleeping pretty peacefully through the night. He got to clinic feeling pretty sick, though. He has not opened his eyes, nor spoken a single word since last night at 9:30, when he called out, "I'm puking. Please help me." It has been pretty brutal. 

As they were hooking him up, I heard over a distant PA system (while trying to zone out the fire alarm that was blaring) the words 'Treehouse Masters.' My ears piqued, my body stilled. Did they just say what I thought they said?! Could Pete Nelson really be here? A few phone calls confirmed, yes, the host of Treehouse Masters was in the playroom on level four! They weren't sure how long he would be there, so I hustled down to get the deets. I am a little embarrassed to admit that I cried a little at the sight of him. Here before me is my son's favorite tv hero!

He was talking to some of the other patients and made the comment, "I actually wondered if anyone would even know who Pete Nelson was!" I did a little gasp. We know who Pete Nelson is!! We have religiously watched episode after episode of his show each time we have come to Seattle. Randy actually tried to sneak Caden to their headquarters, once. Yes, we know who Pete Nelson is!!

I was able to get an autograph, with a promise to bring Caden down if we could. They were only going to be able to stay until noon. With Caden being hooked up to chemo, we hoped to be done by 11:30. 

They asked if I wanted a picture, but I said no, wanting it to be Caden's giddy, star-struck smile, not mine. As it turns out, Caden was not well enough to go down. While being given the best of the IV medications, Caden was woke from sleep with his violent vomitting. We have decided to stay for a few hours to see how the IV medications do, with options to be admitted later tonight if we choose. We'll see what the next few hours bring. For now, Caden Dirks has a signed postcard from a man he loves watching on tv. How cool that we were here during the small window of opportunity to get his autograph!

Flying

For weeks the pressures of a feeding tube have been constantly suffocating us.  It is no surprise that with such a big tumor squishing his innards and chemo that makes everyone nauseous, Caden was bound to lose weight.  While I do not like that my son is now 'moderately' malnourished, there are so many factors that I can't stop- no matter how much I wish I could.  I know that he needs nourishment to be healthy.  I know that he needs to be healthy to recover quickly from surgery.  I know he would feel better if he had more to eat.  I know that he would feel better if he could keep more fluids down.  I know that everything would be so much better if he had this, and this, and this, and this!  I KNOW!  That doesn't change the fact that everything that has passed through his lips this last week has come right back up.  With each wretch, each moment that Caden became lighter and lighter and lighter, the mountain of suffocating stress got heavier and heavier and heavier.  Knowing the reasons does not make any of this easier.

Many have asked why the feeding tube is the worst thing about cancer care for us.  I hope I am able to give adequate description so you can fully understand why today ended the way it did, with the feelings that it has given us.

One time I had to have my nose swabbed for the flu.  She stuck the cotton-tipped stick up my nose, and, I swear to you, dug to the very center of my brain.  No lie.  I couldn't believe it hurt as much as it did- and it only lasted 2 seconds, although it felt like a year.  In fact, I got a pretty bad nose bleed from it.  Now, imagine someone coming with a four foot, hard plastic tube, and shoving it up your nose with enough force that it will bend itself down the back of you nose, down your throat, and eventually have enough tubing to coil in your stomach.  Now do that 50 times.  Try having it placed three times in one night, all the while feeling like death from chemo and violent, wracking vomiting that shoots the hard plastic tubing out of either your mouth or your nose- one of which was seriously seconds after your wretching had stopped, but not before your mom was able to finish wiping the vomit from your parched, cracked lips.  Never being able to really say no, because we all KNOW that we need nourishment.  It hurts enough to have grown men cry.  It hurts no matter how many times you've had it placed.  In fact, it hurts more the more you do have it placed.  That, that is why we don't want it again.  Because, with this week of "easy" chemo that had him throwing up twice every day, at least, what do we expect will happen with five days of intense chemo?  He would throw that tube up at least once a day until surgery.  At least.  Though we are glad we don't have six Rounds of chemo before surgery, we still have 21 days.  21 feeding tube placements would be torture enough.  Add on his track record of twice a day...well, you can imagine.  It doesn't even need to be said how hard it would be to even eat with the tube down your throat.

Randy and I went on a date this weekend.  He took me to the movie based off of my favorite Nicholas Sparks book, The Choice.  I ruined that book with my snot and tears, I tell you.  Pages were welded together, never to be opened or read again.  Looking back, I probably shouldn't have taken Randy.  Where it was compartmentalized as a choice that was hard to make for a spouse, Randy saw it as a choice to take someone you love off of life support.  I felt like a jerk.  I never thought of it that way, I just wanted to see how closely it followed the book, and how well the characters were brought to life.  Anyway, Randy came home with a new outlook on 'choice' and on cancer.  He walked up to Caden's room and asked him what choices he wanted to make concerning his life.

"Dad, I do not want that feeding tube ever again.  No matter what, nothing is worth the suffering it causes me."

As we sat by his bed, watching the tears fall on his sunken cheeks, we all came together with unity.  Our little Caden melted into his bed with relief when we told him we would support him 100% in his refusal of the feeding tube.  In that moment, we realized what cancer (and the threat of that stupid feeding tube) has done to our son's mind.  He has had more pressing on him than I can ever imagine.  And my weight felt like a lot.  He is so tired- physically and emotionally.

With the brevity of this decision, Randy knew he needed to be with me.  I can be resolved in my decision to say no, but the moment they tell me something that strikes fear into my heart, I tend to sway pretty easily.  With this, I knew that I could not be swayed.  In all else, I need Caden to feel safe and secure with me, since nothing else about his world is.  Especially when I give my word.  Randy made a call, telling his boss, Craig, what was happening- today was a big day, one that has been on the schedule for months before cancer care- and Craig took over for Randy.  Craig, if you ever read this, please know what a blessing you are to me.  I could not have made it through our appointment today without him.  It was so much harder than I ever thought it would be.  I needed him by my side, holding my hand.  Thank you for letting Randy's mind be put to rest about the demo, so he could say the words that needed to be said to Sue and the Nutrition team, without distraction.

Caden's weight was 42.1kd today.  It was actually better than we thought it would be, since Caden had been weighing himself multiple times this week.  But that didn't stop Nutrition from stopping by.  In the meeting, Sue and Nutrition (I refuse to learn her name, because of the 'evil' she represents, although I'm sure she is a nice lady) pressed upon us the necessity of nutrition for Caden's body for the massive surgery he would have.  Like we could forget.  Like we didn't already know.  I wanted to scream at them that they could just stop talking, I already know- and I agree- that he needs nourishment.  I just don't think that the feeding tube is the best option for that to happen if he is going to be throwing it up!  Anyway, by the time that Nutrition left, there was plans for her to check back with us tomorrow (while he was getting more intense chemo) about placing it then- as long as he didn't throw up tonight.  Like- 'Hey, glad you're not barfing.  Now we can place the feeding tube, because it doesn't look like you'll barf as much.  Isn't that great?! Hope this lasts!  Fingers crossed.  Haha.'  The pressure boiled over.  I could not control the tears a moment longer.  They weren't hearing me.  The choice was being taken from all of us.  And the feeding tube was not going to be placed in my nose.

Sue came back to our room after her next patient.  She sat down in the chair next to mine, looked me in the eye, and asked me how our week had really gone.

"Sue, Caden has thrown up at least twice every single day no matter what we do.  Some times, he even threw up without even feeling nauseous.  It was just a projectile surprise.  He ate as much as he could, even while feeling nauseous, and then would weigh himself after each wretch, knowing that all he was doing was never going to be enough.  He cried after each session, not from the pain, but from the realization that he could not stop the feeding tube from coming.  Nothing has been harder for him to handle that the thought of having to keep going through with that feeding tube!"

With each sentence, her face began to crumble.  She could finally see just what I see- my Caden's mind was being broken.  We were damaging a young boy by taking away the only thing he can control, the only choice he could make.

"Oh, no!  NO!  Stephanie, the pressure is off.  No more talk of feeding tubes.  I would prefer his body was stronger for the surgery, but he'll survive.  I won't be here tomorrow, but I want to tell him on Friday.  Have them get me the moment you get here.  I want to tell him: The pressure is off."

Remember the snot and tears shed on my book, The Choice?  They were nothing to the snot and tears I shed while she watched me try to regain my composure.  Truly, it was about as un-lady-like and ugly as you can ever imagine.

I can fly!

We still have a lot of work to do.  He will need to continue to get as many calories into his body as he can, but we no longer have a mountain on our shoulders.  It will be hard each time he throws up (we know he will) but it doesn't feel as hopeless.  We were given a Miracle today. 

Words that soothed our hearts and set them free.

Difference?

My Brennon is a grinder. Big time grinder. One night, while sleeping as a family of seven in one hotel room, I heard what I thought was someone chomping on a hard candy. I sat up, rage filling my body, tersely asking who was awake and eating candy. Sleepy snores answered. Then I heard the candy again. Oh, wow, was I ticked! How dare they ignore me!! I snuck through the room, sneakily searching for the candy chomper. One last chomp brought me to Brennon's side. He was moving his jaw back-and-forth with fervor. It turned my stomach, to tell you the truth.

This...

Is what you get. He is missing two teeth in this before picture. One in the bottom and one on the top. ONE on the top. Can you tell?

He has one wiggly tooth that has so little to grab onto, the dentist suggested that we get it wiggled. So we did.

The two teeth next to the front/center are being ground like the others, but the dentist didn't want to wiggle those, in case it gives room for the permanent centers to separate. So, my Brennon now has three teeth missing from his adorable smile.

Still can't believe he is almost EIGHT!!! Or two.  Whichever you want to say.