The Beginning of the End

TODAY'S THE DAY!!!

Yesterday was pretty exhausting, to say the least.  His Portacath was scheduled for 12:45, but he didn't go down until about 2:30.  He was not able to eat, had been "starved" (Oncologists exact word) and then was in the most intense pain he'd been in since arriving in Seattle.  I could barely hold my head up, I found myself taking extra deep breaths to calm myself every chance I could, and was pretty much near tears the whole day.  Not my favorite!  When he went back for surgery we took time to leave the hospital.  It was the first time I stepped into fresh air since Friday.  It didn't give me the relief I thought it would, it only brought anxiety for me.  I was leaving my son at the hospital.  What if something happened?  Randy was a calming presence.  And pretty much made me come along.  We grabbed a hamburger at a place that has instantly become our ultimate favorite "BurgerMasters" and came straight back.  Maybe 30 minutes from door to door, but it was enough for me.  We got back in time to meet with the surgeon and then was told that we could wait for him in his room.  Hard not to be able to go back to recovery like I could on Saturday.  Many more patients on the weekdays.  I got in a little bit of a nap after we had someone stop by to teach us a few things we need to know. They're doing everything in small chunks so we can retain as much as possible during this crazy time.  I'm grateful for that, even though I'd already read what she taught.  It was mostly for Randy's benefit, he doesn't read.  We got Caden back (pretty intense pain from the new addition to his body,) got him hooked up to his pain button again, got ready for bed and crashed.  This is why there was no update.  I couldn't do anything but breath!

The night was back to how it's been since we got that pain button.  He's able to push it as needed to get a small dose of Morphine as needed.  He can only get relief every six minutes, but it's enough to make him sleep better.  Heaven itself to see the relief on your child's face when they have intense pain and start to feel relief coming.  I imagine I've had that face four time with epidural, could have been five if Brennon's would have worked.  My relief face probably came after his shot out of me at all 8 pounds of butterball chubbiness.  I love pain relief!

He's again without food.  This is the last procedure where they will restrict him anything.  Good thing since he's hungry right now and can't have anything.  Murphey's law- he's had food and not been hungry, now he's hungry and can't have food!  He's moving around pretty good with the Portacath in place.  They placed it under the right collar bone, which keeps the nurses far away from his left side.  We like that!  No more accidental bumping that feels like punching for my son, no sirree!  We have about 35 minutes before they take us down for the PET Scan.  He'll get down there, be injected with the special sugars, let the go through his body, then have the 30 minute Scan.  When we get back, he can eat, but the most important thing of all...

He'll start Chemotherapy!!!

I'm not looking forward to the side effects, especially if they make him gag or throw up, but I want this thing to STOP GROWING!!  I want it to start shrinking and help his belly get less swollen.  I want him to be CANCER FREE!!!  While reading some information about Childhood Cancer I found out information that I found interesting.

*Fast moving cancer is the best type because it allows the Chemo to attack it at a higher and fast rate.  This is the one good thing to how fast it's grown in his body, it makes it easier to treat.  The slow growing tumors have a slower cycle.  When one medicine is used to treat one portion of the cycle, it takes longer for the Chemo or Radiation to work.  Because his is always dividing, it will be faster.

*More children survive Cancer than adults.  There is also more research put into childhood Cancer than adult.  For right now, that's just fine for me.  Especially since my Dad has already survived.  And my Grandpa.  And our friends that have been a constant support and visitors, the Bingham's.  But for now, let's throw everything we have into Childhood Cancer, because it's my son on the receiving end.

*He was asked to participate in a trial for Fertility.  It came down that he qualified because he has a very rare form of Cancer, but doesn't qualify because his dose of Chemo isn't toxic enough for the study.  Um....our son is going to need only a small dose, this makes me HAPPY!!!  Not only does it respond well to Chemo, it doesn't need a dose that will ensure he won't give him babes.  It just gets better and better each day.  I'm feeling the love of that research!!

Who knows what the rest of the day will bring.  We don't know how Chemo will affect Caden.  I'm kind of scared.  But the largest feeling is that of anticipation.  Let's get this tumor GONE!

Thank you, again, for all of your love and support.  We are continually getting offers, phone calls, emails, texts, posts, comments, gifts, and well-wishes from so many people  I wish I could call you all!  But for right now, my time is spent rubbing Caden's feet or tickling his back to distract him from the pain, watching movies, making jokes, sleeping, or just wandering in a sleep-deprived stupor.  And there's nothing I'd rather be doing!  Today is going to be a great day!!

-11:00 AM Update-

I just switched with Randy for the PET Scan.  They took him down, got him injected with the active sugars and had him rest for an hour.  While resting he fell asleep and dreamt of Tyson.  How do I know?  He talked in his sleep...
"Tyson!  TYYSON!  No, I didn't punch him!"
I had to giggle.  Dreaming of his little brother does not surprise me in the least.
The Scan will take an hour.  I came back to make sure he got his food delivered -burrito, as requested- and to eat myself.  Who knows what the next few hours will bring.
When I got back to his room, he had yet another gift sitting on his bed.  I SERIOUSLY was tempted to take a quick peak.  I resisted, but only because I slapped my own hand.
That's not for you, leave it alone!

I asked Caden about the Portacath while he was drifting off because he seems to be getting around just fine today.  He even asked if he could wheel the wheelchair by himself.  He said he can't really feel it in him (it's about the size of a quarter) or the needle that is sticking out of him, that he likes it when they do anything with the IV because it sends cold liquid to his bruised arm.  I'm happy to hear that he isn't in pain for that surgery, today.  He's been getting up and moving around like normal.  The only think I can attribute this to is his pain button.  They'll play it by ear whether they take it away this afternoon, tonight before bed, or tomorrow.  I hope he gets to keep it as long as he can this time!

We have been told that he will get a feeding tube today.  This will allow us to give him supplement foods.  He's loosing too much weight.  You can especially see it in his back.  He's always been thin, but you can see ribs in his back now.  You can't tell too much in the front with a tumor-filled gut, but he's pretty much withering away here.  The PET Scan is the last test that will restrict food.  So we're going to stuff him by mouth and supplement his by stomach.  I wouldn't mind taking him to chubby stage again.  Love me some chunky (kid) thighs.

I'll get as many pictures as I can when the administer the Chemo.  We heard that they will be in gowns, masks, and all that jazz to work with the medicine.  I'll see if he can tell me all about it.  Thankfully this is my first time dealing with Chemo, but I want to know everything I can about it.  Including how it feels going in, how it makes him feel while it's running for the hour, and how it makes him feel after.  It seems weird to me that one of them needs an hour each day for three days, and the other only needs 15 minutes.  Something so MASSIVE should need more time, I would think.  The Dr. said he'd come by at 4:30 and do a show-and-tell with me.  I've not seen one scan or picture.  He'll also show us the PET Scan and finally let us know if the Cancer has spread (they are seriously doubtful with all of the other Scans) and what his Stage is.  Here's hoping it's a 3 and not a 4.  It doesn't matter as far as treatment, but it matters to me that he's as low as possible.  No matter what, we've begun!

-3:00 PM Update-

He got back from the PET Scan, ate, and then got pumped full of fluids.  He has to urinate 500 cc's before they can begin Chemo.  We just barely made it.  With all of the pressure that is building in his belly, sometimes he goes a bunch, others not so much.  I'm sure it felt longer than it was because we're so anxious.  It's funny how happy we've been with bowel movements and urination in the past few days.  It's almost an exciting topic of interest.  Sad, but true.  I'm hoping things start finally moving!!

We also met with a Specialist to help us tell our kids more about what's going on.  We told the girls on Wednesday, so they understand a little bit more, the boys understand nothing, so we need a little help.  It's one thing to hear that your brother might lose his hair, and another all together to see him bald.  It's one thing to see wires hanging all over the place when you come, and another to see him come home without wires, but a bump under his skin.  It's one thing to see the oxygen tubes sitting in his nostrils, another to see that he has a feeding tube that stays in there for a while.  She gave us a bear that will hopefully be going home today with a portacath and a feeding tube.  Then we'll FaceTime with my mom and kids and kind of show them what Caden has going on right now.  Maybe this will shed some light for them.  I realize they don't need to understand it all 100%, but I don't want anxiety from the kids or Caden when we finally get together for an extended period of time.  There will be questions, but I hope they will be less intense with some kind of information.

She also told us stuff that she sees from siblings of a sick child.  Jealousy.  My mom and dad are spending a lot of time with Caden and not me.  Caden gets to stay at a "fun" place.  Caden gets lot of new gifts.  People are always asking me how my brother is doing.  Caden gets mail.  Caden gets balloons.  One thing that we all need to remember to do is to ask them how they are doing.  What they are doing that they like.  How their day at school was.  Things like that.  It's all new, and "fun," and adventurous right now.  They get new visitors, new places to play, new meals being brought in, and all the jazz, but as the time wears on - 12 weeks at least- they will start to really be bothered by all of the questions about Caden.

We're starting to feel the effects of too little sleep, too much anxiety, and emotion.  It was a hard day yesterday with his pain.  Today has been SO much better.  He's been awake for a good portion of the day, even finished building a metal Jeep, so it's relieving to see him feeling "better."  He's able to move around a lot more, so again, relieving to see that he's not hurting too much from his most recent surgery.  We've been able to squeeze in a little nap here and there when we didn't have people coming in to talk to us about whatever they are trained to teach us.  We have scheduled appointments within the next few days.  One of with is Acupuncture for Caden on Monday.  I'm excited to see how it works for him.  I believe in Eastern Medicine, so I'm anxious to see the results he's able to get from this.  The hospital really has the best amenities for patients and parents alike.  We could not have come to a better hospital.

We also got a package from a family in our ward full of gifts that their daughter appreciated while she was in the hospital.  While tubing with family in Utah in 2012, Cortney broke her back and fought for her life.  While away from home, in a strange hospital, she realized some things she'd like to have.  This knowledge has blessed Caden.  He got a SERIOUSLY soft blanket that we used immediately for his cold feet, chapstick, lotion for foot rubs (especially during pain,) MiO flavor for his water, and x-box games.  These are all things that we needed!!  I know I've said this a bunch, but we can't thank people enough for all of the gifts and well-wishes.  It is overwhelming to bursting sometimes.  I hope, one day, to be able to pay this kindness forward to others.  And that I can show my appreciation through my friendship for years to come!

Chemotherapy started at 4:30!

Something is going on with Blogger, I can't upload any of the pictures from today's activities.  I'm SO glad that tomorrow will have absolutely no reason for the camera!  The Chemo got started a few minutes later than planned because the Fellow and Resident came to show us the pictures from the CT Scans, MRI, and the PET Scan.  It was pretty amazing see how things should have look and how they did look in his body.  Things have just been jammed anywhere they would fit with the tumor growing any way it pleases.  Their measurements (without actually cutting him open) are that it is 15 cm (6 in) from left to right, 12 cm (~4.5 in) from top to bottom, and 10 cm (4 in) from front to back.  Large Grapefruit!  It was the biggest thing in his whole body, more prominent that anything else there.  It was very enlightening to see the pictures.

The Chemo has to be set up with the nurse wearing all kinds of protective gear, including a mask with a clear eye shield.  It could burn her skin if it touched her, talk about powerful stuff being pumped into my son's body!  I hope it burns the crap out of that stupid tumor!!!  Get the heck out of there!!!

With the nausea medicine administered before the Chemo, they are better able to stop/suppress the nausea.  Some of these actually cause him to feel pretty drowsy.  As evident when he couldn't move his lips, made the mumbled comment that he could talk, and by his heavier-than-normal eyes.  We were glad of this when it came time for feeding tube placement.  He was a little nervous for this, but I don't think he really understood what was going to happen, or really where it was going to go.  He started opening his mouth when she was ready.  He cried as it started to go in, and could barely control his emotions.  He was so upset with it he almost started to gag himself in his breathing.  I think this was actually harder to watch than the day before of pain.  He's cried many times over the past few hours, has gagged a good deal, has asked us when we can take it out, and asked a few times why he actually needs it, again?  I doesn't matter that we've talked to him all day, prepared him for what was coming, he still didn't really understand what was happening until he was having it shoved to his belly.  I sure hope he's a little more used to it after a good night sleep.

He is DONE with all of this!!  He doesn't want anyone touching him, he is sick of people talking to him, he's sick of people trying to sit on his bed, he's sick of the food, he's sick of just about anything.  He's hit his wall.  And he's not even close to being done.  I'm hoping that with all of the procedures done for now, we're able to just have a few days of rest.  He'll be getting the Chemo through the IV's, but hopefully he's not made to leave the room unless he wants to.  I hope he's able to get some food he loves, feel like he can eat it without gagging, and just be done with some of this pain!  We're all done for today.

My Favorite Moment of the Day:
When he was talking in his sleep about Tyson.  Cause even though his eyes were closed, his face still had the emotions and expressions that are typical Caden.  He had a few giggles just before as well. It's good to know that he has a funny place to escape to in his dreams!  Good Night!

**Also, my phone has really been acting up.  I'll get a whole bunch of texts and voicemails all at once and then nothing for hours.  I'm sorry if I haven't gotten back to you.  It's been a long few days, but also my phone is ridiculous!  I'll answer your texts and voicemails as soon as I can! :)