SURPRISE!!!

Randy was able to surprise us with this cutie today!! I had NO idea or even thought that he could. They said the 3rd or the 4th, so I was prepared to wait. Randy had other ideas. It was the best surprise ever!!

She has not had a single second without someone loving on her. She has not minded in the least!

For a dog that is happiest when loved on, she came to the right house!!

The Dirks' are now a family of 8!!

Caden's 'Mira'cle. 

Happy

Happy

What a difference sleep makes! For the first time in a LONG time, Caden slept through the night- and by extension, I slept through the night. It gets better. Caden did not throw up once today. It gets better. Caden did not feel nauseous once today. He had more energy, so we ran errands all day. The sun was shining brightly, so we walked around The Loop multiple times. Caden ate a full lunch and dinner. He sat for a full 45-minutes watching Shelby, Brennon, and Tyson do Taekwondo, without once saying he was super weak or tired. This was after he sat for 30-minutes enjoying the sunshine, and playing restaurant with the kids of the neighborhood. To top off the night, he played Xbox One (Thank you Craig, Linda, and Jamie) with each of the kids, eliciting squeals of giddiness from all of them. 

IT.WAS.A.FANTASTIC.DAY!!!

Thank you for the prayers. They were answered magnificently!!! Oh, how my heart is lightened by a happy child. I want to cry tonight, but these would be tears of joy and gratitude. 

Happy Caden=Happy Mommy

Fuel

I think the thing I get asked most after, "How is Caden?" is "How do you stay sane?"  Most times, I really don't know.  Like so many other things in life, there are easier moments, times, days, weeks, months, and even years.  I can say that honestly the last two years have been the hardest of my life, but intermingled in those two years have also been some of the happiest of my life as well.  When I made it through the first year, I looked back and wondered how I did it.  When the year of cancer free came, I looked back over the year and saw the amazing memories we were able to make.  And even now, still in the hardships of this time around, I don't know how I am doing it sometimes.  And, in all honesty, it is getting a little harder.

I met with Hospice yesterday.  As in Hospice!  It was only a get-to-know you meeting, where I was able to learn some of the things they have to offer and get to know them personally so that when we do need them later, we'll know them and they will know us.  It wasn't a bad meeting, or one that was particularly hard as I was in it, but I found myself a little 'off' the rest of the day.  I was mad, for some reason.  I kept thinking, "Why do I have to do these things?  Why do I have to think about this kind of thing for my FOURTEEN YEAR OLD CHILD?!"  It was a hard day. 

Caden still feels sick every second of the day.  He actually spoke through sobs, "I wish there was a magic pill that could help me feel better for even just one hour."  I continue to watch as he has a hard time eating, keeping it down, sleeping, walking, getting into the car, going up the stairs, sitting for longer than a few minutes... the list can go on.  This stupid cancer has taken so much from him this time- more than the last two years combined.  And not just physical, but mentally, and sometimes I think this is harder, but emotionally.  He has cried more in the last few weeks than ever before in his whole life.  I am SICK of seeing him SO sick!

You know when you are sick and the rest of your family is not?  You know when they go about their lives, happily being able to do what they want, when they want, with no thought of energy?  Well, imagine being a child watching siblings run and play and laugh.  Imagine watching your biggest support system (parents) going about their day, doing things that make them feel normal, happily stepping back into their roles.  And then think about the boy that sits on the couch, feeling sick for the 72nd day in a row without a single break, wishing your life could feel normal for just one hour. 

Who would want to sit there alone?  Who would want to sit there period?!  I have told Caden that I will sit with him, no questions asked.  If he is feeling low, I will sit with him- no matter the time.  One such time was this morning at 1:00am.  For reasons we can't understand, Caden has not slept for more than a few hours at a time since directly after the surgery.  He has been given massive amounts of Benadryl for nausea and he still can't sleep for more than three hours at a time.  He wakes and simply can not go back to sleep.  During those quiet hours, where everyone else is asleep, is when the monsters of what he has been through come out. 

"Hey, you know what you haven't thought about it a while?  Tumor pain!"

And then his mind is going, his heart is racing, his legs are restless, and he can't go back to sleep.  This makes him super anxious, super irritated, and all around agitated.  So he creeps into my room and asks if I'll sit with him through the long, long night.  It doesn't make me mad that he asks, I'm happy that he knows he can come to me.  It does make me mad that he still has to have such a hard time.  My anger flairs not because he wakes me, but because he has to be awake at all.  Why can't he catch a break?  Why can't he feel well?  Why does this still have to be so freaking hard?

I'm mad that my kids have to be terrified when they hear he has to go to the hospital again.  "Does this mean the cancer is back?," asks a terrified Keilie.  "I don't want to spend Easter without you guys!," sobs a devastated Shelby.  "I wish we didn't have to go back.  Ever!," says a resigned, nauseous Caden.

I'm mad that this time of recovery has been anything but.  I'm mad that he still throws up everything that enters his lips.  I'm mad that he is still so weak.  I'm mad that my expectation was that he'd have a break from all of this intense chemo side effect stuff, yet nothing has changed at all.  I am so tired of all of this.  I'm tired of having to prepare for Hospice.  Hospice, gosh dang it!!  I'm tired thinking of what this new chemo pill could make him feel. I'm scared that the rest of his life is going to be lived in anguish!!!  

I wish we could run away from it for a while.  I wish that this time of recovery could be spent with a pause button.  We'd pause everything, run away to someplace warm, enjoy the feel of the sun on our faces and the sand on our toes.  We'd laugh, we'd swim, we'd play, and we'd rest.  Then, we'd come back- we know we still have a fight left.  We still have more fight in us!  But, I wish we could pause everything until the day arrived.  I wish I could hide him away from all of this.  Hide us all from the truth.

I'm still the same girl that wants to fight to the bitter end.  I'm not giving up so easily.  But, I just want to be mad for a while.  I want to rage!  I want to kick, and scream, and fight, and cry, and pound, and punch, and beat.  I want to KILL!  Because, when push comes to shove, all of this suffering and anger and absolute exhaustion only fuels my fire.

"Cancer, how dare you do this to my son! To my kids! To my family!!  We're taking a break for 8 more days, but you better believe we are coming back with a vengeance.  I'm tired.  I'm mad.  And I'm coming for you!"

I still have my faith.  But I also have my fight.

Baseball

"Mom, I am the luckiest. I finally get to show you how good I can be at baseball!"

"Mom, I always need to bring a water bottle. Or else I will get too hot and go black from running so fast!" Translation: pass out. 

When I told him that he needed to try running a little faster. "Mom, don't you remember me telling you that these shoes are hard to go zoom in?! That's because they are not zoom shoes. These are my school shoes. I need zoom shoes if I am going to run faster!"

Zoom shoes, water bottle, mit, and bat. 

All important things for my boy to succeed in this thing called baseball. Got it! Anyone know where to find zoom shoes?!

Code

On Tuesday, while waiting the five hours for Surgery to simply come and look at Caden's skin, Kristin (the counterpart to Sue and Dr. Hawkins) lost her patience with all of the waiting and got us ready to go home.  Because there was an open wound, she planned to send us with the antibiotic he is on right now, but also with instructions to pack the wound to help it heal- as in putting gauze inside the open hole.  Knowing that I can't stomach the thought of anything like that, I decided that I would take a video of how to do it, for Randy.  Since he spent years in the OR directing surgeons on proper placement of spinal cord stimulators and pain pumps, I thought he would be better qualified to do the deed.  I thought it would be a great idea.  Boy, was I wrong.

She got all of the supplies gathered and set up on her little side table, and then began to explain things.  I wasn't really watching, but did make sure to lock my arms just so to capture the perfect angle of the video.  It wasn't enough.  As soon as she started to explain things to me, I started to feel really lightheaded.  While she was working on packing Caden's wound, I was working pretty darn hard to hold my head up.  The next thing I remember was hearing, "Stephanie!  Stephanie, can you hear me?!"  Because I had been recording the proceedings, we caught it all on video.  Well, the sounds at least, the camera was recording the ceiling at this point.

They got me situated in a chair, shoved apple juice and bagel down me, took my blood pressure (which ended up being totally fine) and had me just sit.  It took me about four minutes before I was able to even open my eyes.  I was dug in deep- once again being called 'the scariest patient imaginable.'  The entire video, from start to finish, was about 6 minutes.  I can laugh about it now, but it wasn't very funny then.  Going back to the last thing I remember and the first thing I remember shows that I was out for a minute and ten seconds.  Kristin told Sue (and eventually the entire Hem/Onc) that she was about to call a Code Blue on me.  I am so glad that she didn't!!  That would have meant that I would have been put on an ambulance, bound for another hospital- no questions asked.  I had scared her pretty bad.  "Caden, I'm just going to move you.  Your mom has become the patient!"

I know it didn't happen, but upon hearing this, my heart felt as if it had stopped beating.  I was super close to being taken from Caden's side.  As it turns out, they had to actually move me to one of the other rooms, to lay down on a bed identical to the one that Caden was on.  I had to listen as Surgery came in, surrounded his bed, and examined his incision.  I ached knowing that I wasn't right there with him.  I literally placed my hand on the wall, praying that he would feel me.  It seems dramatic, but it is a very real feeling of need for me to be right there with him.  I almost started to cry that I needed to be in another room.  I hated my shortcoming that took me from his side.  I hated that something that was so important was a bit shadowed by me passing out.  I did not like being taken from his side- even if it was just 25 steps away.

As I have pondered the Easter story today, I marvel at the sacrifice that Jesus Christ made for each of us.  It almost feels inadequate to say that I love Him for what He did for us.  But with the feelings still quite fresh and raw from this week, I have been pondering Heavenly Father's role in the Atonement as well.  While Jesus was suffering on the cross, there was a point where Heavenly Father had to withdraw His Spirit from Jesus.  Christ needed to feel the Spirit withdraw from His being.  How agonizing it was for Him to feel as if He had been left alone in His suffering!  But, also, I can't imagine how it must have felt for our Heavenly Father to leave.  To know that He needed to leave the side of the Son He loved with all of His heart.  To be away while His Son suffered pains that no one else could truly understand.  To have to be apart, even for a moment.  And yet, He did it because He loves us.  But, even knowing it was the right thing to do, something that needed to happen, it didn't make it any easier.

How grateful I am for the Easter season.  To truly recognize the sacrifice that was made for each and every one of us.  A sacrifice of not only our Savior, Jesus Christ, but of a Father that needed to simply step back and watch during the hardest part, no matter how much His heart yearned to be with Him every second.  In a very, very, very, very small portion, I understand how hard it must have been to be separated for any amount of time. 

Happy Resurrection Day!

Break, please?!

Caden is back in the ER. Our ER here in Richland, which is better than Seattle, but still hard. Because of the Staph they found, he has been on an antibiotic that has given him the awful side effects of nausea, vomiting, and diarrhea. The diarrhea has been so bad, I emailed Sue asking if I could give him some of antibiotics that stop diarrhea. When she heard how often and got a description of the stool (which is pure brown water) she said he needed to be checked for a gut infection (caused by the bacterial infection antibiotic) called C-Diff. If he has it, he'll be admitted.

We are so tired. Caden has felt awful for weeks and weeks. It hurts so much knowing that this should have been his recovery period, free of any worry but just healing, and now this. Even if he doesn't have C-Diff, he'll still spend hours at a hospital instead of spending time in the beautiful sunshine. Even if he doesn't, he'll still have 8 more days of an antibiotic that will keep him feeling exactly the same as he's been feeling for weeks and weeks. He was supposed to have a break from that before starting that chemo pill on the 7th. As it stands, he'll barely be off of the antibiotic before beginning the pill. Who knows how that will make him feel?!?!

I was venting to Danielle and Ashlee this morning, just getting my frustrations out about how much I wish he could just catch a break! Ashlee responded, "I wish we could all take turns feeling crappy for him!"

My thoughts and wishes every day of my life recently. 

Please continue prayers to Heaven for my Caden. He still needs all the help he can get. 

3:00- Negative. Huge sigh of relief!!  I feel as if I just want to sit in my room and cry. I am just done with this week. With this month. I am so tired. 8 more days of this antibiotic. Heaven help me.

12:30am- Caden's diarrhea symptoms have started to subside a little bit.  He still doesn't feel quite right, but it hasn't been as bad as it was for the last 36 hours.  He is still quite nauseous, with a lot of throwing up, so that is still quite hard. 

As I was bringing him his last dose of the antibiotic that has caused so much heartache the last few days, I almost wanted to just throw it away.  However, it is keeping the Staph from taking over his body.  It is a necessary evil- very much like the pill that he will have to take starting April 7th, and all other measures and precautions we have already taken.  And just like so many other scenarios, telling him that he needs to take it to stay healthy doesn't make it any easier for me to hand it over knowing what it is going to do to him, and it doesn't make it any easier for Caden to take it.  He knows what it's going to do to him more than I do.  I'm grateful for this Keflex prescription that is curing the infection that could kill him.  I'm grateful... but I don't have to like it.

Video View

Prayers were answered last night- Caden slept well and woke feeling great. No pain except hunger pains. I can fix that! We have a day of snarfing today. Well, he does at least. 

My mom brought up DVDs of Christmases past that had been recorded. The first one we watched was Christmas 2002, when the entire Kimber family got together to celebrate and send love to Grandpa and Grandma Kimber while they were on their mission in Washington. Front and center of the Burrell's family was the cutest little 18-month old boy, with the whitest baby hair and most adorable personality and laugh- Caden. We watched through the whole video to catch any glimpse of him we could. There was a part where Aunt Tonya helped baby Caden whack the piñata, which made Caden laugh. Any time he even walked into view, our eyes were focused only on him. 

The part we watched over and over and over was when our family was interviewed, telling Grandpa and Grandma how much we loved and missed them. Caden begins our segment with his 18-month signature "La-la!" Translation for those of you that don't speak adorable: "Love you!"  He always said the cutest things at this age. 'Lo-lo' was lotion.  'Kaney' was Caden. This was months after Caden called himself "Denney." He just had the cutest little voice. 

Our favorite part of the whole thing was when Brooke was able to get him to giggle. Caden always had the best giggles!! It was so fun to hear it and just remember, to be taken back to a time that we could never imagine anything ever happening to our sweet little boy. We watched that giggle over and over, laughing each time and just reminiscing how adorable he really was. 

I have reflected on that night a lot over the past two weeks. I'm not sure why it has affected me so much. Maybe it was the timing. We watched it the night before his big surgery. I had thoughts of how pivotal the surgery was going to be, the true possibility that Caden could actually be taken from us within the year. And I wanted to reach through the screen, scoop him up, and kind of be transported back to that time again- if only for a moment- to bask in the innocence of him. To revel in the sweet laughter of the baby that would become my hero. I would kiss his sweet, chubby cheeks and whisper how much he is, and would he, loved. And then I would just hold him, because I now know what is to come. I would rock him until he fell asleep on my shoulder, his peach-fuzz cheek pressed firmly to my own. I would rock him the whole night, not sleeping once, just smelling his perfect scent and loving the moments of quiet. It would be hard to come back, but I would know I am needed here. This boy and I have more work to do. 

Some might ask if I look at this baby Caden and wish what I know will happen would not happen. It is a valid question. Looking at his perfect body in that video, knowing what he would suffer just 11 years later, there is a part of me that wishes I could stop it. Especially after this last two weeks, he has suffered so, so much. But there is a larger part of me that knows of His plan for us. I am grateful for this long-lasting, on-going trial. There are many times when I feel as if it is going to crush us, just bury us in our grief. But other times, I feel strength, hope, and even deep joy and relief. And it is in those moments that I know we are not alone, that prayers are being offered for us, heard, and eventually answered. 

Seeing baby Caden reminds me of the happiness that he brought so early in our marriage. He brought happiness to so many. But I still see him in the same light. I watch him sleep right now, free of any pain or worries. I see only one indication that he is sick- his bald head. Other than that, he is still the boy that I remember- the boy that I focus on each time he enters my view. 

And just like in that video- he brings a smile simply by being near. 

7:00- I have an update that is long overdue, but for good reason. We are HOME!! They discharged us at 11:00, after picking up an antibiotic for the Staph infection they learned from the cultures. We grabbed those meds and blazed home just in time to surprise Keilie. Then I jumped in the shower and readied myself for the next round of surprises. My kids screamed and jumped and hugged us like mad. It was exactly the reaction we were hoping for. 

But it didn't stop there. Caden and I had decided on the way home that we wanted to surprise them for dinner. We took them to Zootopia and ate nachos and popcorn at the theater. Healthy, I know. It was absolutely perfect! Best dinner I have eaten in a long while!!

And I got a surprise of my own. Sue called to tell me that Dr. Hawkins worked his magic and got us approved for the chemo pill we wanted most. We had been denied because of both price and indication of the drug, so Dr. Hawkins made a personal call to our insurance and helped them get their facts straight. The next day it was approved for Caden. Good thing- it saves us $72,000/year. Thank you, Dr. Hawkins!! And BCBS of Texas!

Cancer care is such a roller coaster ride. Yesterday was a severely hard, draining day. Today we are flying. I sure hope we are home for good this time!! I love being a mom. I love my wonderful life. I'm excited for this small break before chemo begins again on April 7th. 

Surgery, please!

I'm It has been a LONG case of hurry up and wait. We jumped in the car yesterday as soon as we could, made the drive in record time, only to sit around and wait and wait for someone to simply look at his skin. That was it. They simply had to look at him to see if he needed the port removed or not. It ended up how we thought it would, but it was hard to run around my house, grabbing what I could, making bigger messes because of my haste, only to come and sit in a dark room once we got here. We went to bed with them telling us he'd get it removed 'tomorrow morning.'

All morning the nurses kept telling us that they didn't know the exact time. We were antsy to have it begin because of how hungry Caden is. It is so brutal that for weeks we have been struggling for him to have an appetite to take even one bite, and now he can't have a single sip for hours and hours. He is so hungry. He hasn't had anything of substance since his TPN was unhooked at 7:00am yesterday morning. He is nauseous because of his hunger. 

They came with good news that he was going to be taken in 30 minutes. We hurried to clean him up with medical cleansing wipes, got him in his gown, wrapped him up in his wheelchair and waited. And waited. And waited. She came back with some good and bad news. They were able to get both Surgery and Vascular teams together for one surgery on the same day instead of two surgeries on two different days (which would mean another uncertain surgery time for a boy that is starving), but...

The surgery was moved from 11:30 to 3:00. He was already counting down the minutes to be able to eat and they just pulled the rug out from under him. What went from 30 minutes away is now 3 hours away. He is really struggling. He is really hungry. He is really just done with everything. 

He is not doing well emotionally. We had planned to spend the whole day yesterday allowing him to get into warm baths. He has already had such a trying week. It was like stabbing myself in the gut having to ask him to get out of the only bath he has been able to get into in weeks, to hurry to the hospital. The one thing he could look forward to in a long time, after such a harrowing experience with surgery, and I had to take it away to bring him back to admittance and another surgery. 

Please pray that this last hour goes fast for him. Please pray that hunger will no longer hurt him. Please pray that these surgeries will be more successful than the port placement recovery that he has had. Please just pray for him to stay strong. He is unraveling fast again. I want to just take him and run. Run to a place that he could forget for even just one day.

3:00- the surgery has been bumped another 30 minutes. The tears and agonized suppressed screams into his pillow have me ready to beat down the OR door. 

Caden: (mocking sarcasm) "Hey, let's squeeze in one more surgery before this boy's. It's not like he's starving!!"

He is SO done. And it breaks my heart. 

  4:30- We're still waiting. I'm starting to really get angry!! Like really wanting to speak my mind in a very aggressive manner. This is beyond ridiculous!!

7:00- I just got service. Caden was finally taken down at 5:00...where we waited until they took him in to surgery at 5:30. He was so hungry by this time that he was dry heaving before we reached his stretcher. It was agony watching his body be wracked, but not have anything to even show for the agony. He had nothing to give. His stomach and body had been void of anything since yesterday morning at 7:00am!! I finally broke down crying with him. "Mom, I am so empty." I'm glad he is asleep. I'm glad they were able to do both surgeries into one. I can't wait to just go home. I can't wait to stay home!!! I can't wait to see what he chooses to eat first!! I hope things improve more than I could even imagine. Caden needs a break!

He's back in my arms. And EATING beef jerky and drinking Root Beer. Life is good!!!

11:30- Once the lidocaine wore off, the stinging began. There has been no 'pain' which is a relief, but the stinging had him panting and almost in tears. It may have escalated quickly because he is just done with anything uncomfortable at this point, but no one can blame him. He has been through the ringer! They were able to control the stinging with a lesser pain medicine than he has been on recently, so the weaning and withdrawals have continued on schedule- meaning the weaning is going well and the withdrawals are being kept at bay. 

We are watching TV now, enjoying some relaxation after a day full of anxiety. It feels nice to finally be on this side of the procedure we knew was going to happen after talking with Hem/Onc yesterday at 7:40am that didn't happen until today at 5:30pm. I'm fairly certain today was the longest day ever documented. I'm so glad it is finally over. 

Headed Back Immediately!

It has been an incredibly long night for two people in the Dirks' home: Caden and Stephanie.  One night was hard by choice, the other night was hard because of circumstance. 

Caden's pain has been getting better by day, which is a blessing to be sure, but that also means that he needs less of his pain medication.  As such, we are weaning him off of medications that he has been taking since January 22, medications that his body is addicted to.  Simply put, Caden is going through withdrawals.  His night was long with sweating, irritation, insomnia despite sleep aid, restless leg body, and vomiting.  He was able to get nausea meds every two hours, which by nature make him sleepy, but they did nothing to keep him asleep or make his stomach comfortable.  If anything, they made him tired, but insomnia won the battle of wills- he just felt awake and completely exhausted.  There was a lot of walking last night.  My night was long witnessing the struggle.

As I was typing the period of the above sentence, I got a call from Seattle Children's.  We potentially have a major problem on our hands.  Caden's port incision site has become quite infected.  When we took off the dressing this morning, it was oozing a yellow pus.  I took a picture of it (I'm nervous to post it because of the graphic nature) and sent it to Sue and Kristin.  I just got a call saying I need to rush back up there.  He will be admitted and head into surgery.  The port will most likely be taken out, a PICC line will most likely be placed, and Caden will be started on IV antibiotics immediately.  She is concerned that he has a bacterial infection that is super close to the port- an artificial device hooked straight to his heart.  So...got to go.

Please pray for my Caden.  Yowsa, I am nervous!!  Please, more like terrified!!!

4:45- In fifteen minutes it will have been four hours since we arrived for our 1:00 appointment. Four hours without a single word about what they are thinking needs to happen. With a day that began at 7:00am after a horrible night, I am losing my patience. 

7:00- He is admitted. You can see the actual port through the hole in his chest from the infection. The port will be removed tomorrow morning. It needs to be out for 24 hours before they will place the PICC line. We will be here for a few days. Blood cultures are being tested from both blood from the port and infection from the open wound. This definitely isn't an ideal situation, but I am glad to be back here. They know what to do to keep Caden safe. 

On a side note: we both had to be wheeled to his Oncology floor room in wheelchairs. While watching them look at his wound, I found myself waking up to worried screams. I had passed out and was having a hard time coming out of it. The ironic thing was that I had told the nurse that I have been called 'the scariest patient imagine able.' And then I proved it by passing out. I know it wasn't my fault, but I felt bad for taking away from what Caden was going through. I had to be placed in another room on my own bed while the surgeons poked around without me there. I always want him to know that I will be there for him. It was hard to physically not be able to. Oh well. It's over. 

Goodness, what a day. My poor Caden. He was supposed to have weeks of recovery. Now he will have more to recover from. I wish I could not feel like things are continuing to be hard. I feel a bit discouraged. Things still feel so hard. We are so tired. It is getting harder and harder to walk through these doors. I just want him to have a break!!!

Ashlee is coming to help me tonight by helping Caden tonight. I still don't feel quite right. I'm gonna get some rest tonight to keep me going for the coming days. I don't want to leave him alone again- no matter the understandable reason. 

Late

It is no secret that I hate being late. It causes me anxiety. So I was a bit anxious about the nurse being late today to go over the TPN stuff. Since it was what I thought would be our ticket out of there (more on this later) I wanted her there at 9:50. So, of course, she came at 10:20. 

I can give the excuse that I was waiting at the door for her because I wanted to sneak out so as not to wake Caden, but the truth is that I was antsy because she was late. Caden being asleep just made me look less crazy-lady.  I hope. 

Things went perfectly with our dealings. At one point, she stopped me and asked,  "So, why am I here again? You've got this!" And I do. 

She left at 11:15, at which point our nurse came in with all of our paperwork. Everything was working out according to my ultimate design. And then the Oncology department saw something they didn't agree on from the Pain Team, and no one could come to an agreement about it, so we sat in our room for an additional three hours. For what? I have no idea! Not how I had wanted things to go. 

But we are free and on our way home. The big breath I took as soon as we crossed the threshold from hospital to outside was filled with the scent of freedom, and it smelled sweet. Some may argue it was because of the beautiful blooming cherry blossoms all around me, but I refuse to believe it. Freedom has its own scent, and it smells divine!

Back to school

Caden made fun of me today. I had my IV nutrition training today from 1:00-2:15.  

"Mom, I'm going to lay in bed while you go 'to school.' Isn't it usually the other way around?!"

I didn't knock him upside the head, but I thought about it. Cheeky little devil!

Today was the practice test of the course. Tomorrow is the final test- administered at 10:00am! When I finish and get my final grade...we get to come HOME!!!

So, like a perfect student, I asked a million questions, performed my roll-play with confidence because I knew I was going to rock it, and left them with no doubt that I was going to kill it!

As soon as they left today, I read the entire packet of information they gave me, and then wrote myself step-by-step instructions, leaving nothing out no matter how self-explanatory it seemed. I was meticulous to the extreme, but it is very serious business working with a catheter that leads straight to his heart. I don't want to do a single step less than 110%. 

The nurse will come tomorrow to go over the logistics of everything with me one more time. Then my final test will begin. I will execute the tasks that will be my most important job for the next three weeks, at least, by hooking Caden up to the TPN (IV nutrition) that we will have as we are discharged from the hospital as soon as I am finished. 

Peeps, I am ready! I know this inside and out. I would do anything if it meant we got to be home. Well, not blood and needles, but I would find someone that would do it for me, if needed. But it's not, so let's do this! Bring on the final challenge!!!

(Cue Eye of the Tiger)

Research

Caden was approached by two PhD students today. They asked him if he would like to take part in a study for their Medical project. After hearing how easy it would be, Caden (and we) quickly agreed.

Just like the light clamp placed on the finger to measure oxygen in your blood, this new technology being studied would measure the hemoglobin in your blood by simply placing your hand on a touch screen. For patients that need to check for anemia and other things, they are trying to come up with an app-based technology that would not have to include a blood draw. The study included 20-minutes of this...

He sat in his bed with his hand in a light box, placed on a cellphone hooked up to software he had written. The "he" being the guy in black. The other guy was there to simply help. 

Caden was asked because the study is being driven at this hospital by Dr. Hawkins, and also because he had had a blood draw this morning to compare their own findings with. Easy, peasy. 

We did not find out the results, to see how accurate they were, but it was so interesting talking to these two third-year medical students. It would be nice to check your blood counts with just a simple hand scan. Also in beginning stages: a scan designed for bilirubin. Newborn babies would no longer have to have their heels mutilated to check numbers, they would just have to scan something on their body. Science and Texhnology advancements are amazing. 

We hit a block in our road to going home. Because we live so far away from Seattle, they have had a struggle getting everything squared away with IV nutrition. They have gotten a lot done today, so it looks like the day of discharge will now be Saturday afternoon. Tomorrow and Saturday morning I will be trained in all things IV safety, pumps, and nutrition that will ultimately save Caden's life. Because of everything that has happened in the last many, many weeks, Caden has zero appetite. I mean NONE. He ate 1/4 of a boiled egg and exclaimed he was stuffed. Knowing his calories are being consumed, I'm not as frantic as I could be at this point. TPN is not a long-term fix, seeing as it is hard on the liver, but it is keeping him going for now. Goodness, I can't even fathom having a period of time where the only thing expected of me was to gain weight. What I wouldn't give for a free-day to eat all of the Reese's Peanut Butter Eggs that I wanted and everyone would congratulate me on a job well done!  I mean, I do it anyway, but it would be spectacular if it didn't really fly straight to my upper thighs, right?!

It has been a trying day, but with the discharge date being move up from Sunday to Saturday after Rounds at 11:40, we are are ok. 40 hours and counting...

Happy St. Patrick's Day from the Green Belts!

Support

Our meeting with our Team went exactly as we thought it would.  We are very happy.  We all feel that the at-home chemo pill is the course we would like to take.  We will allow him to recover until April 7th, when we have our Surgery post-op appointment, and then we will begin the pill at home.  There are two different drugs, one of which is FDA approved for Adult Advanced Soft Tissue Sarcomas, so that is the one that we are trying to get approved through insurance first- mostly because that one costs $6,000/month out-of-pocket.  However, either one will be great.  Best of all, the side effects will be much more bearable than anything he has ever done before.  Life is good.

If all goes as we hope, we will be discharged sometime tomorrow.  It will be in the afternoon, closer to tomorrow night- Friday morning at the latest.  We need to have training on how to do his at-home IV nutrition.  He will be getting all of his calories through his bloodstream, so anything he eats will be extra and bonus!  Dr. Hawkins said he fears that he is going to have a pretty hard time gaining weight because of all that he's been through recently, but we are hopeful that he will get his appetite back and become the voracious teenage boy eater we got to see for a while.  I would love to have a chunky Caden!!!

While I was having dinner tonight, I got to kind of be a part of something wonderful.  Stbaldricks.org was here with three hairstylists, shaving heads for Childhood Cancer Research.  The feeling of love and excitement in that cafeteria room brought me to tears over my Chicken Strips.  There was laughing, hugging, cheering, clapping, and all-around giddy happiness.  They were all so happy to be able to give money to an amazing cause, while giving support to those that don't have a choice to be bald.  I didn't want to leave.  So many times, this hospital is filled with such hardship and sadness for parents, it was so wonderful and refreshing to witness so much happiness!  I wanted to hug them all, thanking them for giving to such a wonderful cause.  It means something different for someone like me- a parent with a child that has cancer that has recently ravaged his young, broken body.  I have never enjoyed eating the cafeteria's disgusting food more in my entire two years at this hospital.  It was an amazing event.

While walking back to our room at Ronald McDonald House today for a nap, I was filled with a love of that place.  It happens a lot, actually.  It is so nice to be able to take a little break from the hospital, come to a nice bed that feels known and comforting, and leave the cares of the world for just a little bit.  I was contemplating the amazing benefits today, without even knowing what I would witness just four hours later.  

McDonald's always seems to get a bad rap.  No one ever says that they are embarrassed to love Wendy's or Costa Vida food, yet it is just as "bad" for you as McDonald's.  In fact, with Caden being immune-suppressed, he is not allowed to eat at Subway!  Everyone considers Subway the mega-healthy choice, yet Caden is forbidden from eating there.  He is allowed to eat at McDonald's, though.  However, each time people go to McDonald's for the amazing Big Mac, or those addicting fries, they are supporting an amazing cause.  They are giving to people that are in desperate need of a safe haven away from the hospital when they have to be away from their home.  The amenities that are given for FREE to families like ours include:

-Our own room and bathroom. 
-Our own Kitchen Space with all kitchen appliances needed to prepare anything you'd like.
-A large pantry full of grocery store aisles of free food of every kind.  We can freely take all that we want.
-Dinner provided by outside volunteer groups almost every single night of the week.  They bring the food, prepare it, and serve us all.  All that is asked of us is to clean up our own table.
-Free laundry facilities with free laundry soap provided.
-Indoor and outdoor playground for kids, with two video game consoles, foosball, ping pong, and pool tables.  We always have such a party when people visit.
-A real theatre, donated by Rashard Lewis.  Organizations provide a movie night, often bringing newly released movies to share in a fun environment.
-Computer room with a bank of computers, plus free Wi-Fi for the whole place.
-A video and game console library.  We are able to check out 7 items at a time.  People donate movies and games that can be checked out at any time.  It is like have a Hastings in our house that we never have to pay for.
-Therapy Dogs come and visit the kids at least two times a week. 
-A den with a wall of bookshelves filled with donated books.  You can sit in the comfortable room, or take the books back to your room.  You may keep anything that you would like to read.
-Donated hygiene items (travel/hotel Shampoo and Conditioners, toothbrushes, toothpaste, and floss, and lotions.)  You are free to take as much as you need.
-Comfortable sitting areas throughout the house.  Soft places to relax and visit outside of your room.

All this for free because people eat at, and donate to, McDonald's.  Support does not always have to be a huge act, such as shaving your head.  It could simply be grabbing a Happy Meal for your sweet kids, and maybe donating the change left over. 

My heart is overflowing tonight.  I am still quite emotional.  ThAnK YoU to all for everything you have done for us.  We have been richly blessed by your love and generosity.

Preliminary Pathology

Some things have been progressing, while others are going backwards. Pathology reports should be posted tonight or tomorrow morning. We will have our meeting with our Cancer Team tomorrow at 10:30. We will hear the report, hear our options for here on out, but also hear the side effect options for all. Our decisions will now move forward from "possiblity to cure" to "best quality of life with cancer." We will continue to fight this mutating monster, but we also want Caden to not be as sick. Tomorrow will be very enlightening. 

Pain is still an issue. They took out the epidural and pulled the drain from his side on the same day. We now wonder if the epidural was helping with the drain site, so without that pain relief, he is hurting much more than normal. Today would be considered day two, so we truly hope that with the passing of time, he can stop hurting so much. They are going to turn back on the IV pump until we get his pain back down. Oh, and the vomitting stopped! They are also giving him a muscle relaxant and a bowel stimulant. Relax the muscles, make him poop, take away his pain. Sounds like a plan to me. 

It is back to how it felt before surgery. After the few brief good days after surgery, it is really hard to see him in this much pain again. We are back to begging him to eat, begging him to walk, and wishing we could just make this all stop! And just like it says in The Fault in our Stars: Pain demands to be felt. 

Preliminary report for Pathology is in. The cancer was contained to just the one tumor. The other things biopsied were not cancerous. However, the cancer had grown to the edge of the "ball" that was taken out, so they are not able to say they got clean margins. 

This tumor did not start in another organ, did not borrow blood or oxygen supply, and did not need anything other than itself to grow. Once it got the blood, tissue, and oxygen- that was when it really started to grow. Because it has become so "smart" this cancer can now grow without any aid from anything else- it will grow because it exists. Because of this one thing, Randy and I will never consider him cancer free. The medical world says that since you can't see it, it does not exist, but we feel differently. We may not be able to see it anymore, but we know it probably is. This news does not surprise us. It's not to say it doesn't hurt to know, but we are not blindsided by the news. 

We will get the full report with all options and choices tomorrow. It won't be as hard of a meeting as other ones we have had with our Team, but it is still going to be a good dose of reality. The truth is: this is probably not a cancer that is curable. It can now grow without anything. We will be dealing with this for a long time (hopefully, because that would mean Caden is still here with me). Our Miracle may yet extend to cured cancer, but for now, our Miracle is more time. And that is a beautiful thing. 

Please pray that Caden's pain can lessen and be controlled. Everyone is concerned that he is still feeling as much as he is at this point of recovery, especially since it was under control for a few days. We will be coming home with IV nutrition, but we cannot come home with IV pain medications. And anyway, I'm not in any hurry to take him home with a bunch of pain. We've done that for the last seven weeks. No thanks. 

7:00- His pain is under control once again. They were able to take out his last IV, now having everything going through his port. He has been awake, engaged, and eating more. We went for the longest walk since surgery. He is such a different boy when he is not in pain. We realize that maybe the pain medications we have used may not be the right choice for him going forward. I want to take this Caden home. Pain Caden breaks my heart with his silent suffering. 

Puddle Prayer

Randy has been breaking out in massive hives for weeks now. While talking with his dad, he showed him the multiple welts that riddled his race, neck, arms, and hands. Darwin said he gets like that when he is under a lot of stress. We joked with Randy, "What on earth do you have to be worried about?!"

The hives have now turned into one massive swell-fest. His wedding ring used to have a hard time making it over his knuckle, and then just bounces around on his boney finger. Now?! It barely fits his pinkie finger. Which is how he got himself into a little bit of trouble today. 

I got a text today, "Pray that someone finds my ring at Flying J."

The story goes like this: It had been raining in Ellensburg. While filling up, he'd

gotten water on his hands, so he shook it off. And with it, his wedding ring that had fallen off of his cold-hand, not-swollen-anymore pinkie finger. Because of the rain, it was submerged in any number of puddles, darkened by the overcast skies. 

They headed over to Wendy's with plans to head back to Flying J to look one more time.  The plot thickens:

"By the time we made it back, the rain had stopped. I went back to the spot that we had pumped and looked around for only a little bit before the sun shone down on a puddle maybe one to two inches deep. And right in the center of the puddle was my ring."

I kind of had the mentality that we had already gotten our miracle, that if he didn't find his ring, we would get another one another time. It wouldn't be life altering if he left Ellensburg without it. I prayed, asking for Randy to find it, but I didn't really put my whole heart into it like most of my other prayers recently. 

And yet, our prayers were answered. The sun came out at the exact moment it needed to, illuminating the dark water, making his ring shine. 

I am humbled. I had forgotten for just a moment that He is not an 'only if it is life changing will I give them what they need' Heavenly Father. It was not life changing to find the ring, but to remind me that He hears all prayers. There is no prayer too big or too small. He just loves us. 

To the angel that surprised us with this...

THANK YOU SO MUCH!!

My front porch looks so welcoming and beautiful. I can't wait to walk through that door for myself. Thank you!!

TIME!!!

Randy left yesterday morning to go get the kids. The plan had been to come up on Saturday afternoon, but I guess everyone was anxious to come up, so they left at about 6:30pm last night. The plan was for me to meet them at the entrance of the hospital at around 10:00, give them the RMH keys, and then we'd party, party, party all weekend long. Things did not go as planned. 

Randy called to tell me there had been a delay of about an hour near Thorp. Thinking it was either traffic or weather, I didn't think much of it. 

"We were rear-ended while driving 76 MPH in the fast lane. The guy had been following behind us for a while, so I kept checking the rear-view every so often. It happened without me realizing it. He had fallen asleep. He pulled over to the left side, I pulled over to the right. The cop arrived soon after, got him moved over behind us, and then took about 40 minutes to write the report. There wasn't much damage to either car. Thankfully, no one was hurt."

Um...my heart is burning. I know nothing happened to them, but the thought of harm coming to all of them scared me. I was anxious more than ever to get them here, now. 

The rest of the drive was uneventful, hallelujah. It was them actually getting here that gave the next plot twist of our story. 

When Tyson got out of the car for a second at the hospital, I thought he was crying. His eyelashes looked wet with tears. Turns out, he has pink eye in both eyes. It took an hour in the hospital's urgent care, while Jackie and the other kids sat in the car in the parking lot, to get him diagnosed, plus time for Randy to get his prescription from a 24-hour pharmacy. By this time, it was after Midnight. Tyson cannot come see Caden today. We have to wait an extra day to be together as a family. 

And don't even get me started on UTI lameness. 

I kind of wanted to scream, "Haven't we been through enough this week? Can't we just celebrate our Miracle together as a family?" And then I remember: we got our Miracle, and these insignificant worries fly from my care. We now have plenty of time to celebrate!! It is starting to sink in a little more every day. We have TIME!!!

Caden got his epidural out first thing this morning. They figured it hadn't been working enough to really need the four hour trial, so they took it out. An hour later, while the nurse was flushing one of his IVs, she realized it wasn't working properly either, so she took that out too. We are still waiting word about getting his catheter out soon. It looks like it will be a very freeing day for him. He'll still have an IV, his port accessed, and one of his drains in place, but without the epidural, one IV, the Ng tube, the urinary catheter, and the arterial line, he feels a lot less tethered to his bed. 

I have a feeling that today is going to be an amazing day!

Strength

Caden is not-surprisingly doing so well. When I say 'not surprisingly' it's because we have all gotten to know his strength pretty well over the last two years. He amazes me at every turn. 

Yesterday, while still getting pain under control, I noticed Caden grasping air near his bed rail, while pinching his eyes shut tight. "Caden, are you ok? What can I do? How can I help distract you from the pain?" By the time I had made it to his bed side, he'd grasped the rail and rolled onto his unhurt side. With determination clear on his face, he opened his eyes, and looking straight into mine, said, "Nothing. I just wanted to prove to myself that I could do it"

'Prove to myself.' Caden is always exceeding my expectations. I never realized he had such high expectations of himself- after all, it takes a lot of core muscles to roll over, core muscles that had been cut clean-through less than 24 hours before. What I thought would have been too much, too hard, was exactly the thing he was determined to prove to himself: that he could do hard things. 

But he didn't stop there. He told us he wanted to get up and walk. Since he had just gotten an extra shot of pain medication, we convinced him that maybe he should wait until his pain was a little more controlled. That time came this morning at 3:48am. 

I woke to two nurses flanking his bed side, skinny boy legs hanging down to the floor. "Mom, come see. I get to walk."

They had pulled the curtain closed to conceal his open back so that they could tie his gown and get him a robe, and then he woke me with his excited voice. I was out of that bed in a shot. Well, kind of. I hadn't been able to fall asleep before Midnight, so I was out of bed in a delirious shot. By this time, he was standing. I may have been uber tired, but the sight of him standing next to that bed still brought tears to my eyes. 

He gathered all of his tubing, stomach drains, and urine bag, held onto his IV pole, and almost smugly walked around the room. At one point I asked him if he was dizzy. He wasn't. "Um....well I am. I think I have been holding my breath a little bit. I'm gonna just sit down for a bit." And just like that, my Caden walked around without my aid, proving to himself and everyone that he can do hard things. His hospital bed was the best seat in the house for me to watch him prove to himself that he could do it. 

After 'the show' he sat upright in a chair for four hours. During this time I was fighting sleep. Man, sleep was relentless!! The only reason I cared was because Caden had a whole six weeks of talking to catch up on. I asked him, "Caden, you have talked more today than you have in six weeks. I noticed a change when they finally got your pain under control. Have you just been in a lot of pain this whole time?"

Fighting back tears, "Yes. Mom, it has hurt so much."

Caden has always been a suffer-in-silence child. With this immediate change back to my 'normal' Caden, thinking back to the last six weeks, I finally understand just how much suffering he has been doing in silence. 

"I should probably stop talking, so you can get some sleep. I feel bad making you work for me when you could be sleeping." It was 5:30am, by this point. 

"Caden, it is my joy to be able to help you. Don't ever feel bad for allowing me to serve you." 

Especially since I have thought for weeks that my service to this amazing child was going to expire sooner than any mother's service should ever expire! 

I didn't say it, but I thought it!

Controlled, finally

Last night was not as euphoric as yesterday. Just before they started on the big tumor, anesthesiology placed an epidural to keep Caden's abdomen numb for five full days. This would help with not only pain, but waking his guts up sooner, thus speeding up recovery. We gave six hands way up, hearing this news. Long story short: it didn't work, and we were too far behind in his pain therapy when we figured it out. He spent most of the night in awful, horrible pain. He made it to an 8 on the pain scale multiple times. The only time he has ever given an 8 was when he was admitted with internal bleeding from his first tumor that had been undetected too long. And he got up that high more than once through the night. Needless to say- when reality is this hard to watch, it is easy to forget past happy news, even when it is less than 24- hours rejoiced. 

Pain Team has since come in many times to assess his pain. They have determined that the epidural is doing some, but not high enough to give full relief where he needs it. The relief may be barely touching where he needs, so they will not turn it off or take it out, but it isn't going to be enough. 

Since Caden has been on some pretty high opioids at home for the past six weeks, it has been hard for them to translate everything over to IV, plus add allowances for the major surgery pain he is bound to feel normally. As it stands- he is getting three times the normal amount of other patients directly out of surgery. 

Right now, it is enough. He is feeling much better since they came at 10:00am. He is talking, laughing, and even joking. He needed a little Aria pick-me-up, but Aria would have none of it. He pretended that she was making him cry. When he got off of the phone, he said he felt that his cry face was pretty good. And then he bust it out for me. 

I tend to agree with him! It is a very believable cry face!

The truth is, I saw it too much last night to like seeing it as a joke. It was very real last night. All night. I am SO happy to know he is well enough to joke, but I'd be even happier never to see this face again. 

Bonus: he was able to get the large tube from his nose. It was in place to suck out anything in his stomach that may have made him nauseous after surgery. We did a trial run of four hours, to make sure he didn't become nauseous, and then he got the green light that it could come out. So he took hold of that tape and pulled it out ON HIS OWN!! 

My Caden is still here. He is still fighting. He is still astonishing me at every turn. He is my warrior!

4:30- We were all able to get a much-needed nap after our stressful day that turned into an even more stressful night. It was a seriously deep, peaceful nap for me. It's not surprising that my body kind of shut down once I knew he was comfortable. 

One thing that I think is going to take a while for me to get over is the thought that he was going to die. Sue stopped by today to see Caden and to talk to us, and said she was with me in my thoughts. She and I had been emailing back and forth for weeks now, where I would ask hard questions that couldn't be spoken, and she would answer back. When the "tumor" (fatty tissue) was found in the liver, she told me the truth about what that means. Metastasized cancer in the liver gives a less than 5-year prognosis. She said she was even more scared for Caden, because of how fast it grows. We mothers, bonded over our love for a boy we thought was going to die relatively soon. 

When I woke this afternoon, I first looked over at Caden- I always do when we are in the same room. My heart yearned for him to stay with me as long as possible. And then I remembered our Miracle. It is going to take me a long time to forget the sorrow my heart has carried. My son is still going to battle with cancer. Maybe even for the rest of his life. But for now- at this very moment in our lives- our son has been given another chance at life. It still chokes me up. It still makes me feel faint. My son is going to live to enjoy his dog!

Who knows what the days ahead look like. But they feel like the weather we are enjoying in Seattle on this fine Spring day- Sunny!

6:00- Goodbye ICU!!! Hello Cancer Care floor with your new, clean, big rooms. We are super happy Surgical floor was full. We know these nurses. We know this floor. And as much as we hate to admit it, we are comfortable in this part of the hospital. Especially since we know we aren't going to get chemo!

War!!

Surgery started on time today. The only thing he told us he felt about the whole thing was tired. 

He was too weak to stand for a last picture. You can see it didn't stop me from snapping one. I was surprised to see him smiling. I almost started to cry right then. 

Although we are super excited to get that tumor out, it was still so hard to send him off. I wish I could just hold his hand the whole day. I know he wouldn't know I was, but I would. 

10:02- Dr. Riehle just came out with the laparoscopy pictures and news. They looked throughout his pelvis and saw nothing to suggest cancer. They did see two questionable spots, but they think it was from when the tumor ruptured, sending blood into his pelvis. The body absorbed the excess blood, so it stained the areas brown. They sent pieces to pathology, but she was not concerned about them at all. After all, cancer shows bright white and bumpy against the soft, smooth pink of our insides. This is good news. 

10:41- We just got another update. They have been working on the large tumor for about an hour now. They still have a ways to go, but she just wanted us to know that things are going well. I love that she is keeping us so well informed. We have about three hours to go, still, but time is going pretty fast with all of the updates. Things are feeling optimistic at this very minute. 

1:34- the tumor is out. She wants to talk to us in person about the  liver. The next update will be that it is completed. Maybe another hour, or so. To hear that she wants to talk in person kind of makes me nervous. I can't wait to finally see him!!

2:13- He is DONE!!!! Going to talk to doctors now!!

The tumor is OUTA THERE!!!!!!

2:53- We got our miracle!!!!! I will come back later to give a full report, but I had  to say that it was better than anyone could have imagined. It was not attached to too much. It has not gotten into his liver. The area they saw in the liver was fatty tissue surrounding the tumor. It was encapsulated by two "skins" that kept the tumor separated from everything. As of this very second, without being able to see it, Caden is considered cancer free. 

5:00- We are with him in the ICU. 

And loving every minute of it. I'll come back tomorrow. For now, my son is near me. I'm not gonna waste time documenting it. I'm gonna LIVE it!!

Thank you, from the bottom of my heart, for your continued prayers. Thank you, thank you, thank you!!!

My view for the last four hours. Heaven. 

Around 6:00, Radiology came in to do an ultrasound to make sure that all of the blood vessels were performing correctly. And let me just say, if it wouldn't have been ordered from a man I trust so explicitly, I would have run that girl from the room. It hurt. Bad. Not only was she pushing around and on the newly re-opened scar, but we have since found out that the epidural, that is supposed to keep his abdomen numb, is not working properly. He felt that ultrasound. And everything else, it seems. He has been in pain!

9:30- Anesthesia came to talk with us. Because he has been in such high doses of both continuous and breakthrough pain medications for six weeks, they are now giving him the maximum dose of both epidural and IV morphine. They pretty much doubled both. The epidural is continuous, with the IV when he asks for it. They want him to be comfortable. And so do I!

He is sleeping right now, thankfully. So I'm going to try to, too. It's funny, after such great news today, but if I thought it was hard to fall asleep last night, it's nothing compared to tonight. I want to crawl up in his bed, snuggle him tight, and fall asleep with him warm in my arms. The only thing stopping me is the strict ICU rules- lame!

My heart swells each time I remember: the tumor is out, his pelvis is clean, my Caden received a Miracle from his Heavenly Father today. 

Goodnight, son. I'll meet you in dreamland. Hopefully. 

Hillview Young Men & Young Women

"STAY STRONG, CADEN!!!"

Front line Fight

Check-in: 7:30am.

Surgery start: 9:00am.

We are ready!!!!

Now I just need to fall asleep tonight.  It may take me longer than the surgery is scheduled for tomorrow.  If I thought it has been hard to fall asleep the last six weeks, it will be nothing compared to tonight.

I will update the blog tomorrow each time they update me.  Check in throughout the day. 

Caden will be taking back his body tomorrow!

Welcome to our Front line Fight!  Our battle begins at first light.

Games

We have been spending as much time together this weekend as we can.  Not only when time would allow, but when Caden is feeling up to it as well.  There are have a lot of games and movies shared together.

One of the games was Spot It.  Each of the kids want to play with me, I am the parent to beat.  We get pretty competitive, and I must brag, I am pretty good.  The kids don't know it, but I almost always Spot It immediately, and then wait for them to see it.  I make it a bit of a challenge for them, so that they don't think they won me too fast, or that they lost too soon, but that we each get about the same amount of points.  Truth be told, I could smoke 'em all.  Every.Single.Time. 

Cancer has not snuffed out my competitive spirit, that's for sure.

Saturday night, I had gone my rounds playing Spot It many times with each child, separately and together.  Caden had been laying on the couch, just listening to all of the chatter from my Spot It corner, Randy's Checkers corner, and Jackie's Uno corner.  We were all kind of surprised to hear Caden pipe up, "Mom, I want to play you next."  Bring.It.On!

While playing him, I did the same as all of the kids, although I did make it a little more challenging for him.  I confess I did make it so he would win, but not by much.  I was just so happy that he opened his eyes and joined in on the fun.

He won me by two sets.

"Kay, I'm good.  I just wanted to show you that I'm good at this game."

And then he closed his eyes, laid his head down, and listened for the rest of the night.

Cancer has not snuffed out his competitive spirit either!

And let me just say, I beat the Bop It game on my fourth try Christmas morning.  It was an exciting accomplishment for me.  With all of the beautiful chaos of the room, I tried my hand at the game again.  The highest score is 100.  Each time it begins, the robotic voice says, 'High Score 100.'  Each time my heart swells, knowing it was me that got that score.  While playing, it was getting faster and faster, going along great...and then I messed up one time.  It was torture hearing my score, and the stupid robotic jeering voice that says, "Too fast for ya?"  My score?!  99. 

Not to worry, the game is still functional.  I only thought about chucking it against the wall for jeering at me that way!

Wishing

Tuesday morning, after we celebrated our little Brennon's big day, Randy and I were supposed to board an early flight for Randy's earned President's Club trip to Aruba.  We had plans to go on a 4x4 Jeep excursion and a catamaran/snorkeling trip.  Because Randy is Scuba certified, he had plans to go scuba diving, while I planned to lay out on the beach, reading.  We had plans to play just enough to make our lazy relaxation feel a little less guilty.  Most of all, we planned to be together in a beautiful place.

Today would have been our last day on the island.  We would have left later tonight for a flight to Atlanta, Georgia, making our connecting flight back home tomorrow.  I imagine we would be packing our hotel room at the posh Marriott, wishing we could stay for just one more night, yet anxious to get home to our kids.  We love time away, but we are always so excited to come home to their hugs and kisses.  We would take a look around, just one more time, to memorize the beauty of Aruba.

Instead we are packing our bags for a different trip.  We are looking around, trying to memorize the beauty of our family together in our posh home.  We are wishing we could stay in these moments just one more night, yet anxious to return to Seattle for the surgery.  One thing about our week that we got to do- that was no different than our Aruba plans- was spend time together in a beautiful place.  Home.

We may not have made it to Aruba, but... or didn't we?!

Mid-weeks, Randy's boss, Craig, and his wife Linda, sent us this picture.  At first, it may just look like a bunch of rocks, but if you look dead center, you'll see a small tower of rocks.  Craig and Linda helped us be in Aruba after all.

"Randy- don't want to overstep bounds, but Aruba, on the north shore, has a million little human-built rock formations.  They are called Wishing Rocks.  Linda and I built this for your family and Caden.  We did it towards sea to give him energy to beat this thing- and our wish and prayer for success as he faces the future.  Our prayers remain with you.  ~Craig and Linda."

Because of this love and thoughtfulness, Randy and I were able to make it to Aruba in the only way we could, yet partake of the beauty of time spent at home as a whole family.  One day we may make it to Aruba in person, but I doubt it will be any more wonderful than this moment captured here.

The week in Aruba was supposed to recharge us after the stresses of 2014 and 2015.  We may not be as relaxed, but we are certainly rested.  It has been a nice time at home.  We have been able to play, although not as rambunctiously as we used to.  Caden doesn't have strength to do much, but without the threat of more chemo, he is much improved emotionally.  He is also recovering physically from the effects of chemo, although I fear it will take extensive time to recover from the effects of starving for 6 weeks.  But, if there is one that that we have learned, it's to enjoy each moment, without wishing for what may have been.

Thank you for your continued love, support, and prayers. 

Reaching

The appointment results from yesterday were the descriptions we gave to Caden.  They were meant to put you at ease, to make you feel reassured about the major surgery that is to come.  We did get some good news; little snippets that we thought would be worse, but are going to be relatively easy.  We are happy to hear about the shortened recovery time.  We are happy to hear that both surgeons that we know and trust will be present for the whole surgery.  We are happy to hear that they will not have to open up the original scar that extends horizontally across his entire abdomen and about 6 inches up his sternum, just the right side.  We are happy to hear that the laproscopic imaging and possible removal of anything in his pelvis will not be as hard as it would have been, had he not done chemo.  We are happy to hear that they are not worried about getting that large tumor out from under his ribs.  But...

They are also not concerned about getting clean margins.  When getting cancer out, surgeons cut around the tumor, but make sure that they take a sort of shell of healthy tissue around the whole thing.  Imagine an orange.  The part you eat is the tumor, the peel is healthy tissue.  They want to make sure that they encapsulate the tumor, getting it out without leaving any behind.  That was why they took so much of his liver last time.  The tumor was big, sure, but they also had to make sure they got every bit surrounded by healthy tissue.  They got a good, clean margin.  They knew they had gotten the entire tumor our, whole.

That will not happen this time.  Because they can see that the cancer has metastasized (spread) into his liver, the prognosis is not good.  Because the cancer is so big, and most likely has attached itself to more stuff within his abdomen, they know that they won't be able to get clean margins without starting to take too much out.  We don't want kidneys taken out, since he'd have to have dialysis.  We don't want too much bowel removed, since he'd have to have colostomy bags outside of his body.  Dr. Hawkins has given instructions to take what is easily removed, and leave what they must for "quality of life."  He knows that Caden's outcome looks bleak, because it has found its way back into his liver.  He doesn't want Caden to suffer unnecessarily for the remainder of his life- however long that might be.  He just wants to get as much cancer out of his body as they can, while still keeping him "healthy."

We are not done fighting, at this point.  Things may change after the surgery, since they will see the extent of the damage with their own eyes.  But at this point, we still have plans to try a chemo pill that he can take at home.  We know it won't cure it, since the two intense chemos haven't cured it, but we want to stunt the aggressive growth for as long as possible.  We are done doing everything in Seattle.  We want to be together as a family for as long as we can.

We have always been upfront and honest about everything with Caden.  We have always made sure that all of our kids know that we can talk about all of it whenever they feel they want to talk.  We know that at some point we will have to tell him the truth about this.  But how?  How the heck do you look into the eyes of your child and tell them?

Yes, we are ready for the surgery.  Yes, we are ready for that tumor to be removed.  Yes, we are ready for his recovery.  Yes, we are ready to pack up and come home.  And, yes, we are ready to have definite answers as to the extent of the metastasis.  But, I fear, the hardest part about all of this is yet to come.

While driving home last night, I listened to Kenneth Cope's Close Enough to Touch.  It brings a deep yearning of my own.

I've suffered much and given all
For many healers care
But nothing better - only worse
An overwhelming load to bear
Until I'm ready to lay down and die
But from the window I hear this hope filled cry
A Man named Jesus - He's come to heal us
And suddenly my faith comes alive

(Chorus)
If I get close enough to touch
Close enough to heal
Somehow I know I'll be whole
If I'm close enough
Close enough to feel
His healing power so real
Now I believe there's a miracle for me
If I'm close enough to touch

I press my way into the crowd
And touch the Master's clothes
A perfect cure felt deep inside
He turns to ask - I turn to hide
I'm afraid to reveal what was done
How I called on His power to right this wrong
But this is Jesus - He's hear to heal us
I fall at His feet and tell Him

(Chorus)
I came close enough to touch
Close enough to heal
Faith let me know I'd be whole
If I was close enough
Close enough to feel
His love for me so real
I will believe there are miracles for me
When I'm close enough to touch
 
And down on my knees
As He turns to leave
His eyes seem to say - Just believe
Always believe
that He's close enough to touch.

 Oh, how I wish I could touch the Master's robe for Caden, to have him feel healed deep inside.  I imagine myself sitting on the ground, cradling Caden, weak from witnessing his suffering.  Through the legs of those strong enough to stand, I watch Him come, hoping I have strength enough to do what I can for my son- my son.  He has almost passed me, and there, there through the crowd is a place I can quickly reach out.  No, please, I have almost missed my chance. And then I feel it, the robe of the Master, barely brushing the tips of my outstretched, reaching fingers.  And I know.

I have faith to accept the Will of the Lord.  I know that He is mindful of us.  I know He loves us.  I know He will give us the Miracle that we need.  However, I still want to reach, with outstretched hands and heart.  Sunday is Fast Sunday.  Please pray for Dr.'s Healy and Riehle (pronounced ree-lee), that they will be inspired and attentive while holding Caden's life in their very hands.  Please pray for our family, both immediate and extended, with strength, peace, and understanding.  But, most of all, please pray for the son I cradle in tired Mother's arms- my first-born Miracle from heaven.  Caden.