Hug from an angel

This is what break my heart! I hate being away from my kids, even for just one day!! This hug hurt just as much as the ones that Caden asked for the same day because he was suffering so much. Cancer brings suffering in all forms. 

6:00PM Update

To say this this has been the most confusing Round would be an understatement. We are all stunned as to this recent turn of events. We do not know how to explain any of what Caden is enduring right now. I'm not sure which is worse, having him throw up, placing a feeding tube, or this!

Yesterday, just six minutes after the first chemo drug was started, Caden started to feel sick. His face went pale, his dark circles came back (almost as if you could see them change by the second) and he got super weak. It seemed that because of the period of rest from chemicals being pumped through his heart, we had awakened an angry monster. And it was going to make him pay. Not in the way that it normally does, but with something else all together. 

Caden had grabbed a box of Mike and Ike's on our way out of town. He brought the half-eaten box with him to cancer care. Within the first few minutes of being here, the box was devoured. After lunch, Caden asked where his hamburger went. I had seen him take his last bite, so I started to clean up his tray. As I was telling him he'd eaten his hamburger, he got defensive telling me that he hadn't eaten more than two bites. I was a little confused how he could forget eating a whole burger! He calmed down after I sat down and explained that he'd, in fact, eaten the whole thing. "Well then, can I have my Mike and Ike's?" What?! "Caden, you ate those the second you got settled this morning." He was so mad! He thought I'd eaten them and didn't want to tell him. Forget stealing candy from a baby, try being blamed for stealing candy from a kid getting chemo!! 

Next, Caden turns on the TV just moments after turning it off. I just figured he'd remembered another show he wanted to watch. When he turned on the exact same movie we'd just watched, I asked him why he wanted to watch it again, if it was one of his new favorites. "We didn't finish this last time we were here. I thought we could now." When I explained that we'd just finished it, he adamantly told me that I was confused. Boy, was I ever!! I didn't realize it would get worse!! It just seemed a little strange, today it seems downright scary. 

Randy drove up last night to surprise me for my birthday today. I had asked Caden if he wanted me or Randy to stay. At first he chose me, but when Randy saw the new game Brennon G. gave him for his birthday, Caden wanted Randy to stay and play with him. I took the kids to the hotel Randy had gotten with his points (getting two nights for the points of one, Happy birthday to me!) and slept great, while Randy had a psychedelic night with our hopped up son. Apparently Caden was trying to walk the halls when he needed to go to the bathroom, spoke of taking roll in church, screamed for Keilie to get off the mountain of sand, and woke at odd intervals during the night. And it just kept getting more weird. 

First thing this morning, after a quick Happy Birthday, Randy said the nurses wanted to change his Meds. I consulted with Sue and was told to take his Ativan down by half. When I called Randy back to have him tell the nurses, he told me of the newest story. Caden was looking out the large window when he abruptly turned to Randy and asked where they were going, who was driving the transit bus. We all knew then that Caden was gone. He was not seeing the world that we were seeing. They immediately changed the next dose to be given four hours later. 

An hour after the last higher dose was given, Caden was given a choice where he'd like to be given his next medication- in bed, in the wheelchair, or on the trike he was now sitting on after a ride around the halls.  This was too much for Caden to process, it turns out, because he lost it. Everything was too hard for him to either do or understand. Even the most simple of words had him struggling to keep up. And when you'd try to understand him, or help him understand you, he'd lose it again. What is happening to my child? Where is his fragile mind? 

The latest experience has me the most upset. He kept forgetting that he needs to stay in the hospital, that we can not go to the hotel with his brothers and sisters. Even as he watched them leave, I had to remind him on the elevator just 30- seconds later that they were leaving and we couldn't go with them. Fresh tears. Every time I had to remind him I'd make him cry. He was forgetting everything sooner than the last time. And each time it felt like I was losing it myself. 

It has now been two hours since the halved dose. I was hoping to see a drastic change in his mind. Between the higher and lower doses, they'd skipped one to give him time to recoup. So far, it hasn't helped. I was helping him get blankets on as he was laying his head down. Not two seconds later he opened his eyes and told me he felt like he'd just slept a long time. He hadn't slept at all-ALL DAY!!! It just felt so weird to hear him say he thought he'd slept when he'd just closed his eyes! I finished tucking him in, took two steps back to my chair, sat down and heard an excited voice, "HI!!! Did I sleep all night?! How long have you been here?!" And that was that, I lost it!! He didn't remember I'd been here all day, that I had JUST covered him with blankets. I've paged the doctors, I want them to see him!! I am SO grateful that he hasn't even felt a stirring of nausea, but that doesn't make this any easier. He is SO far gone!! I want my Caden back. Why is this happening now?! And why does everything always have to be so different?! It is so hard to have something work one Round, and totally suck the next one. 

I am in tears right now watching him talking in his sleep about things he thinks are really happening. I am glad he's not hurting, but this is a hard form of worry for me, too. 

Cancer just sucks. It sucks to have it, to watch it, and to know you can't do anything to understand it or make it better. I just want to scream!!!

Racing

When I was a senior in high school, I made a few decisions that got me into trouble with both my parents and school. I sloughed class a time or two or twenty.  It eventually got a point where my dad would get a call from the administration if I didn't make it to a class. Not a shining moment in my formative years. 

Before it got bad enough to warrant calls, I had been given my choice of punishment if I got caught sloughing again. Caught being the operative word in that sentence. I was doing well in school, which ultimately made me feel invincible. This also made it easier to make the decision to skip class to go to Einsteins Bagels for a chocolate chip bagel. I justified it as "I already understand that, why sit in class being bored when I can have deliciousness devoured without worrying about calories." I am justify Queen. 

On one such outing, I was driving our little red truck on 1900 W., back to school, when a white Camry was spotted coming my way. I instantly knew it was my mom. She looked out her window, I looked out mine, watching each other until we couldn't stretch our necks any further. My heart burned, my stomach felt sick. I was busted! I didn't go back to school. I didn't go live it up knowing that that was my last day of freedom with the little red truck. I had chosen my punishment, I knew what I needed to do. I went straight home.

The drive home was full of shame, doubt, fear, anxiety and yearning. There were many different roads that would have lead to our house, but I felt an almost urgent need to get home quick. I didn't speed, but I pushed the limit as I raced to my punishment. I made it just moments after my mom, walked in and handed her my keys, and with real regret for letting her down, apologized. I felt awful seeing the disappointment in her face as she accepted my keys without a word. I also felt a little relieved to have the discretion out in the open. I needed to accept my punishment and move on. Reflecting on that drive later that day, I found it ironic that I raced to something I knew I wouldn't enjoy. I felt that same irony both yesterday and today. 

Since Caden's pre-chemo appointment was later in the afternoon, we decided to leave first thing on Thursday instead of staying overnight in Seattle the night before. We left with enough time to make it, but didn't leave enough wiggle room for too much traffic. I've driven in Seattle enough to know that traffic is unpredictable (that's being kind), so I left enough time for one major hang up. But when we were met with a seriously long traffic jam, I started to get anxiety. I hate being late!! As soon as the roads cleared, I stepped on the gas and made it to my usual driving speed- 5 miles per hour over what is posted. I'm a speed demon, I tell you. I pushed the limit as often as I dared, and passed in-between slower cars like a true Seattle native. Heck, I felt as if I'd grown up in New York with all of my evasive moves! We pulled in to Seattle Children's just moments before his first appointment of the day. 

This morning was much the same. We were told yesterday that cancer care was full, so I needed to wait to hear what time to be there. We got the call at 8:00 to come in at 9:00. We got in the car as soon as the call ended, knowing we were headed where many others were. We were "prepared" for the red taillights to meet us at some point, but not as soon as we hit the interstate. Anxiety set in with a crippling intensity. I become a crazed maniac when I'm going to be late. I don't like that about myself, but I'm powerless to stop it. Again, when the roads opened, I was veering between open cars, speeding (as much as you can in rush-hour traffic) and only made it a few minutes late. 

Some times in life, we all race to something that we don't want to do. Some times it's a choice that we make. Or a choice of someone else. Sometimes the things we're racing to is like what we raced to today- something that makes him feel like death to keep him from actually experiencing it. 

Life is full of many different kinds of races. All with a different course, different runners, and different outcomes. Some we sign up for on our own, some we get entered into against our will. And some, like the 5k that I signed up weeks ago for tonight, we don't end up running because we get to run with someone else in a different race. No matter our race, I hope we can look at those in our path with love, compassion, and excitement. Because someone is fighting the race of their life, a race that will define them forever, and sometimes it's to hard places they don't really want to go. 

As Caden lays in his bed feeling sick just one hour after his chemo began, I realize that this race of ours is starting another uphill challenge. We've had a bit of a nausea break, which has been heaven, but makes it a little harder now that he feels so bad. We can't see the finish line, because we know there is just one more hill. But we've donned our running gear once more, the feel of our attire comfortable and known, and we're ready to race. And just like a real race, there will be times of exhaustion where we'll contemplate walking the rest of the way, but we know what is waiting at the end and who is cheering us on along the way. We are supported and can't wait to cross that finish line tired, red-faced, and completely filled with pride and adrenaline to have finished something we never thought we'd ever do!!

Tired?!

I love so much about this picture. 

First off, the boy!! I can't believe he's going to be five in October. FIVE? Where has the time gone? Second, bathroom? Really? You couldn't make it another 20 steps to your bed? 

Third, little undies on a non-existsant backside are so cute! 

Fourth, can you see his tan-line legs? What will he look like after months of swimming if he already has tan lines in May? My kids tan so easily. 

I love, love, LOVE my baby!!!

Games

Remember the game I swiped off of the table? This is it!  Settlers of Catan. We LOVE this game!!  Since my previous post, we've played with Caden and Keilie every night for a week. It's a game that moves pretty fast when everyone understands the rules, but with young kids, it's positively glacial. 

Without describing every rule, one that Keilie still has not learned is placing a development too close to another one. It's like pulling teeth not saying anything when she does it for the millionth time. I just had to keep reminding myself that she is learning. Again. No matter how long it takes. And boy is she stubborn. 

Last night there was a clear plan of action that would have brought her close to the lead. Randy was suggesting things when she stopped him abruptly and told him she knew what she wanted to do. Let's just say that it was NOT the wisest move she could ever make. We tried to convince her of her error in judgement, but she would not be swayed. So we let her do it. About three moves later she was complaining about not liking many of the numbers. I wanted to retort something along the lines of, (mommy patronizing tone) "Well, if you would have just done what we said, you'd be in a better spot right now. We tried to tell you..." But then my sweet Keilie said something that made me glad I can sometimes hold my tongue. 

"But you know what? I really love 4,10, 5 & 6!"

She was looking at a game she was clearly going to lose and found something she did like. She is a better person than I!! Because that board would have possibly been swept by that point. 

One of Keilie's more hilarious game moments was about a year ago. We were teaching our kids "Clue." We'd played  enough times to feel confident that Keilie could manage on her own. But when it was clear she wasn't going in the right direction, Randy questioned her motives. 

"I know it is the 'knife' so I'm heading to the Kitchen, because that is where knives are kept."

Bike wash

With all of the work we do around the house, we usually have scraps of either wood or PVC around for other projects. This was one of them. 

I call it a sprinkler, since it sprinkles down water onto you. The kids call it a bike wash. No matter the name, it is SUPER fun!!

Apparently it also doubles as a drinking fountain. 

We played on the grass for a little bit, well until it flooded too much, and then moved it onto the alley for some bike washing fun. 

Well...almost everyone. Brennon was doing what he always does. Sitting out. It takes him a while to warm up to ANY idea. Water especially. 

So we entertained ourselves with pictures while the others played. 

Brennon ended up trying it about an hour after the other kids. Of course we had to turn the water down to a trickle, but it got him on his bike, at least. There was some over-the-top excitement and cheering for that boy. And once he got used to it, he was the one that asked us to keep it up a few minutes longer. He even consented to turning up the water. Just a bit!

If you look close, you can see all of our cuties. It was so simple. Says the one that watched, ahem*! 2- 6' sides, 1- 4' top with holes drilled every 2", and 2- 4' base pieces with a hose connector on one end instead of four caps. It works like a charm. 

So, if ever your bike needs a good wash, come on over!! We'd love to play!!

(As long as you don't mind a trickle for the first hour, or so!)

To Date

Soon after the diagnosis meeting on February 4th, our social worker came often to answer any questions we might have (try a million questions) and gave us a binder full of all kinds of information for me to read.  I poured over those pages with a highlighter, gaining a very limited knowledge of things to come.  One of my favorite things in the binder was the calendar.  It was supposed to help me keep track of all of our appointments, but I knew immediately that I wanted to document his hospital/home nights.  It has brought me a little bit of order in the chaos that has been our 2014. Just like vacuum lines bring me happiness, so do highlighter lines.  I'm so lame, I know!

Orange is hospital nights.  Green is chemo nights.  Yellow is Ronald McDonald House.  Pink is home. 

I thought that I would post this now with hospital and chemo nights in the past, but with the news we were delivered on Monday, it looks like we will have more to come.  I guess I'll get more practice with my highlighters.  It does bring me a certain happiness to see all of the lines going the same direction.  Doesn't it look so beautiful?!  After all of this, I may become an artist.  Along with songwriter.  And maybe a nurse.  Well, if all I had to do was rock babies to sleep, play with the toddlers, and entertain the teenagers, then I'd be a nurse.  Ask me to do any needles or vitals and I take it back.

To Date:
42 nights in the hospital (with at least 10 more)
40 nights at home
28 nights in Ronald McDonald House (unknown nights ahead)
1 night at Embassy Suites

16 round trip travels have currently been made between Richland and Seattle.  Countless more are in the future, especially when we have a Scan every three months the next 18 months.  I feel like I know that drive almost as well as I know the drive from Casper, Wyoming to Roy, Utah.  In fact, I've driven more times to Seattle in four months than I drove from Casper to Roy in our 6 years in Wyoming.  With Randy's sales territory being all of Wyoming, it was typical for him to put 80,000 miles on his vehicle each year.  In four and one half months, we've accrued more than 6,400 miles.  I hope the gas prices drop.  I have a "Remember When" book that cataloged gas prices at $.97/gallon when I was in high school.  Let's go back to those prices, kay?!  Who's with me?

Our first weekend spent in Washington was a family trip to Seattle to explore our new state.  We visited the Space Needle and cruised the streets of downtown.  With the traffic of Seattle that day, I was all-too happy to make our journey home.  I never thought I'd know the streets of Seattle as well as I do.  I remember calling Jamie the first night out of the hospital to tell her that I'd driven around the corner to Safeway from the Ronald McDonald House "all by myself!"  And now I can go anywhere I want.  Sometimes life makes us stretch outside of our comfort zone.  And when we do, when we look back at how far we've come, we can find the tiniest glimmer of satisfaction.  We can do hard things.  We can accomplish what is in front of us, what is expected.  We just need to trust ourselves, and put one foot in front of the other.  Even if our weight is supported by wheelchair handles as you push our children along.

If all goes according to plan, Caden will have one more surgery on July 3rd.  This will be an "out-patient" surgery to remove his port.  Because then, then, he won't need it.  He will be done. I feel a little like the boy that called wolf.  Only, I wasn't trying to lie.  I really thought we were done.  He really is cancer free right now.  We just want him to stay that way!!

I can't say that our lives will go back to normal, because we are truly changed for good, but they will become our new normal.  Our current "normal" will begin on May 29th when we travel back to Seattle to get things ordered to begin Round 5 on May 30th.  My birthday will be spent as Caden's was spent- in the hospital.  But I've been given the gift of a lifetime- more time with my family, my whole family.  And tonight, Caden will add one more night at home in his own bed.  And that's a gift as well!

Stop Whining

With the news last night, I kind of started into a tailspin of depression.  Simply put, I was feeling sorry for myself.  I got the call from Dr. Hawkins as we were cleaning up a big day spent in the yard.  I was on a landscape high before our world got rocked again.  We pretty much just sat on the couch last night and talked about things as a family.  Shell shocked would be a good description.  Even after all of that talking, I don't think the younger three realize we are going to continue our 'two weeks on one week off' schedule two more times.  I think the only way to make them realize is to actually leave.

I woke up with absolutely no interest in cleaning my house.  This usually brings me so much happiness, but I felt like I would rather leave to do anything else rather than sitting in our house for another moment.  A friend happened to stop by to drop off some cute summer clothes for Shelby and ended up talking to me for over an hour.  Man, she was a needed distraction.  She was the first gift given to me today.

Procrastinating, I realized Brennon was looking seriously shaggy, so I took him to get a haircut.  I am a firm believer that people are placed in our day sometimes to teach us a lesson.  A boy that had already gotten a cut, and was waiting for his brother, was just one of those people.  With a whiny voice dripping with immaturity, he said, "Mo-om, why do we always have to get our hair cut?  It always grows back in like two weeks anyway!"  I could see why this would be a big deal for him.  His mother was watching over the hairdresser like a hawk, almost hovering to make sure that the cut was perfect.  Her son was getting ready to graduate and she wanted his hair to be perfect.  The boy didn't care one bit!  And since I don't let my boys choose what they get, I'm shaping up to be that kind of mother.

As I listened to this boy go on and on about how he didn't think he needed one, that he didn't like the gel that she used, that he wished he could go somewhere else, my mind was working overboard to stop my mouth from saying, "Would you stop whining!!"  I wanted to retort all of the things that we do even though we know we will have to do them again:

Why make your bed if you're going to sleep in it again?
Why do the dishes if you know you're going to eat off of them again?
Why do laundry when you know that you're going to wear the clothes again?
Why clean your room when it's only you that sees it?

My mind was droning on and on and on when a thought hit me.  Here this boy was whining because of something that he didn't want to do because he'd someday he'd have to do it again.  And then there is me, with a clear path to stop something that we don't want to happen again.  And I realized, I need to stop whining.  We are so lucky to have options that will stop Caden from suffering again.  Something that others would love to have.  If there were an option to stop weight gain/loss once you made it to your goal weight, wouldn't we all jump up and down, rejoicing?  I know I would!!  If there were an option that would make it so once the house was clean, it would stay that way forever?  Yep!!  If there were a way to make something so your child wouldn't suffer needlessly with Cancer?!  HECK.YES!!!

So, now it's my turn!  Imagine two Stephanie's, sitting side-by-side.  And if you loved me enough, it would be Stephanie that had taken hours to look glamorous, instead of the depressed Stephanie that entered Great Clips.  The Stephanie on the left is whining like an immature brat about this amazing option.  "Oh, 2 more rounds is 50% more.  Why do we have to take five more weeks away from family?  Why didn't they tell us before?  Why, Why, Why?  Boo-hoo."  Somebody call the wham-bulance!!  When suddenly, the Stephanie on the right looks over in contempt and says, "Would You Stop Whining!"  Left Stephanie is justly chastened!  And she shuts her mouth and becomes grateful for her life.

I still haven't taken hours to look glamorous today.  I am still tired.  I'm probably going to take a nap.  Possibly for hours.  But I wear a smile now.  A genuine smile.  We are lucky!  And we'll face these next few weeks with thanksgiving.  Because we have options!!!

Twice More

Elder Bednar, in April General Conference, told a story that has stuck with me these past few weeks.

"I have a dear friend who, in the early years of his marriage, was convinced he and his family needed a four-wheel-drive pickup truck. His wife was sure that he did not need but merely wanted the new vehicle. A playful conversation between this husband and wife initiated their consideration of the advantages and disadvantages of such a purchase.

“Sweetheart, we need a four-wheel-drive truck.”

She asked, “Why do you think we need a new truck?”

He answered her question with what he believed was the perfect response: “What if we needed milk for our children in a terrible storm, and the only way I could get to the grocery store was in a pickup?”

His wife replied with a smile, “If we buy a new truck, we will not have money for milk—so why worry about getting to the store in an emergency!”

Over time they continued to counsel together and ultimately decided to acquire the truck. Shortly after taking possession of the new vehicle, my friend wanted to demonstrate the utility of the truck and validate his reasons for wanting to purchase it. So he decided he would cut and haul a supply of firewood for their home. It was in the autumn of the year, and snow already had fallen in the mountains where he intended to find wood. As he drove up the mountainside, the snow gradually became deeper and deeper. My friend recognized the slick road conditions presented a risk, but with great confidence in the new truck, he kept going.

Sadly, my friend went too far along the snowy road. As he steered the truck off of the road at the place he had determined to cut wood, he got stuck. All four of the wheels on the new truck spun in the snow. He readily recognized that he did not know what to do to extricate himself from this dangerous situation. He was embarrassed and worried.

My friend decided, “Well, I will not just sit here.” He climbed out of the vehicle and started cutting wood. He completely filled the back of the truck with the heavy load. And then my friend determined he would try driving out of the snow one more time. As he put the pickup into gear and applied power, he started to inch forward. Slowly the truck moved out of the snow and back onto the road. He finally was free to go home, a happy and humbled man.

I pray for the assistance of the Holy Ghost as I emphasize vital lessons that can be learned from this story about my friend, the truck, and the wood. It was the load. It was the load of wood that provided the traction necessary for him to get out of the snow, to get back on the road, and to move forward. It was the load that enabled him to return to his family and his home.

Sometimes we mistakenly may believe that happiness is the absence of a load. But bearing a load is a necessary and essential part of the plan of happiness."

Today, we have had another Redwood size load placed in our "truck."  Dr. Hawkins realized he is going to be out of town the next two weeks, so he called me personally to tell me of the options.  He had dissected the results from the latest study on Undifferentiated Embryonal Sarcomas.  Of all of those, Liver responded better than any other.  This was news that we had heard before, but it was nice to hear it again.  However, of all of the studies done in the United States and Europe (remember this is such a rare cancer without many case studies in the United States alone) 80% of patients did not have a recurrence if they had 2 more Rounds of chemo after the surgery.  This is the best scenario.  And since we want the best for our son, we agreed to two more Rounds.  Six more weeks.  Four more weeks without seeing my little ones daily.  One Round will be the two drugs he's had for the other four Rounds- Ifosphamide and Doxorubicin.  The second (and LAST) Round will only have Ifos.  Dox makes him the most sick, so I'm glad he only has to have it one more time.

Just like the truck needing more load to gain traction to make it out of the snow, Caden needs more chemo added to his "load" to make sure that he gets out of the hole he is in...and will never get stuck again!  I believe he will be in the 80% that does not have a recurrence!  I have to believe this!   Otherwise this would be much harder to comprehend than it already is.

Caden is taking the news like he takes everything else- with undying courage.  In fact, he's more worried about that darned feeding tube than the chemo itself.  Just like I said- chemo isn't as bad as the side effects.  He was a little concerned that his hair was going to take longer to grow back.  And was super sad to realize that he was going to miss Scout Camp this year.  Cancer ruins everything!  But where I want to just crawl in bed for a few days of rest, he's stuffing his face with carbs to gain extra weight.  He's ready to fight!  And so we fight!  My fight will not include as many carbs as his fight, I'm sad to say. 

As more and more is added to our load, we hope to one day prove our worth.  We want to return to our Heavenly Father with a load successfully carried; our arms are strong from lifting our load and lightening the load of others.  To show that we really lived.  And loved every minute of it!  Together!

May 15th, 2014

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

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

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

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

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

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

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

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

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

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

WARNING! Graphic Images

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

 

Before Chemo

Looking from the side

 

 

After Chemo 

Looking from the side

 

 

 

 

 

 

Before Chemo

Looking from the front

 

After Chemo

Looking from the front

Also After Chemo

Looking down into his abdomen

 

 

 

WARNING!

Surgery Pictures are below

 

 

Caden's Tumor

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

 

Caden's tumor put back into his body

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

 

 

 

 

Caden's battle wound

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

 

 

 

 

 

 

Birthday Wishes

Danielle and Caden

His first real Halloween!

First time in T-ball.

He got to choose his props and background. 

Ashlee and Caden

Russ and Caden

Those lips!!!

And cheeks!!!

Caden was always so happy!! And tan!!

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

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

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

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

Winner, winner?

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

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

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

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

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

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

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

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

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

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

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

Pathology

Procedure: Liver, right trisegmented resection

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

Weight: 2.47 pounds

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

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

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

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

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

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

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

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

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

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

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

Child's Mind

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mother's Day

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

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

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

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

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

"Caden, is that alright?"

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

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

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

Happy Mother's Day to all women!!

Great Cake

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

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

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

Caden is Cancer Free!!

 

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

 

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

 

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