Hospice?

It was conveyed to me that there may be some confusion as to what "Hospice" looks like, how Caden is really feeling right now.  I'm not sure if it is a common misconception, or if it was my words that made it seem that Caden was bedridden and more "dire" than he truly is.  Either way, I'll try and clear it up now.

First: This is what Caden's insides look like from the most recent scans.  Honestly, I don't know if I can tell you what is new, what is old, or where they are all exactly located in each scan, but I can tell you that the dark, dark gray circles are all tumor.  They are the things your eyes are drawn to, the things that are stealing the life from my son, rapidly multiplying at an incredible rate.

For these, imagine that you are looking down his prostate body from his scalp to his feet.  They start at the shoulders and scan down gradually until his pelvis.  The bright white in the center middle bottom of these scans is his spine.  The top center of each is his chest down his belly.  The bright white ovals on the outer circle are his ribs. 

Also, as it scrolls down, imagine cutting an apple from one end to the other.  The side pieces are going to show a smaller portion of the apple, while the center is going to show the actual size of the apple.  The center is always going to be larger than the edges.  The same can be imagined for these scans.  We'll start to see the tumor, and as she scrolls down, it's as if she is cutting the apple, growing larger and larger, getting us to the center, showing us the actual size of the apple/tumor.

This was the first sight of a tumor

 This was the "center" of the tumor, the largest showing of this ONE.

 Below:  The right one has shrunk to an "edge" as she was scrolling, while three more show up lower in the body.  Remember, shoulders to pelvis.  Also remember to look for the darkest of the grays for tumor.

 Below: This is at the pelvis.  The white is his sacrum and hip bones.  I cannot tell you which is mass and which is bladder, but I do know that there are two tumors in his pelvis; one is dead because of the radiation, one is very much alive.  Both can never be removed, because of the nature of the pelvis.  These as well as the one directly in his liver, wrapped around major arteries and veins, are what make all 8 tumors inoperable.  If they can't get them all, they can't get any.

These next images are as if you are starting at his chest and moving toward his back.  Again, each picture is as if they are taking a layer at a time in pictures.  I can't remember what the actual cm measurements are, but I do know that the layers are super, super thin.  When we scroll through the scans with Sue, there are hundreds of these pictures.  We always try and take the ones that are at the "center" of each tumor.

Below: The top left tumor is the first one that we saw above. The dark gray in the center of his gut is the "indigestion" cause of his pain.  We were told to watch for this as a side effect of the radiation, but he was also told to watch for it whenever he ate certain foods that he loves.  Never did it occur to me that he'd have a softball tumor growing in his gut since June 7th, pressing on his stomach and causing the trouble.

 Below:  As we move closer to the back, you can see more.  We're moving more to the "center" of the "indigestion causer" and looking at new ones on the right side (left on the scan) and in the pelvis.  The only anatomy that I know for certain in this one is that the dark black is lung, the heart is in the center of his lungs, with the liver directly underneath.  As a side note: Because of the massive size of his initial tumor, it pushed all other organs out of the way.  Greedy monster.  When they took 70% of his liver May 7th, 2014, it opened up a ton of space that normally isn't there, so the liver regenerated to fill that space.  In two weeks.  He has a larger than normal liver, yet smaller than normal space for other organs.

When I look at these, I see the dark gray and feel sick.  I know that it can be overwhelming and confusing as to which is tumor and which is organ, but I look at it and see that they are all large (all bigger than an apple!) and already filling him up.  As of right this very second, there are 8 full-size apples- most larger -shoved in the abdomen of a 5'5" teenage boy that weighs 101.6 pounds, causing him pain at his belt line, and in his gut and back.

Second:  His outward appearance shows a skinny teenage boy with a bit paler skin and dark circles around his eyes.  If he were in a line-up, you'd never be able to pick him out as the kid that is dying.  Tired and in need of a fattening meal or two, maybe, but not dying.  He is more fatigued that most, but he was able to keep up with the other kids last night at his party (which sounded super fun and joyous from the family room, where the younger kids and I watched a show with all curtains drawn).  His appetite is pretty much non-existent.  Every once in a while you'll see him eating something, but usually it is only a bite or two, and only if it is something that he is known to like.  He is still walking around, although not for long distances.  He is on the couch, sitting, or lying down, about 90% of the day, unless he has somewhere he needs to be.  Even then, he's looking for a place to sit.  He just looks like a child that is tired.

Hospice is coming this week to start preparations for what is coming.  Like his appetite (fine on Monday, started going downhill maybe Tuesday, nothing on Thursday), things could take a turn for the WAY worse soon, and without much notice.  The truth is: Caden is dying, but it is a poison that is slowly (for now) taking him from the inside.  The poison will grow and eat and steal until something else can take it no more.  Sue cannot believe that he isn't feeling more pain, that he isn't having more complications.  It is all of the prayer, and I thank you!

They have given us no timeline-- honestly, they just don't know what could change, what will happen, or how long or fast it all could take.  Hospice could conceivably come to our home once a week for a long time.  However, at the rate of growth, we could see bowel and bladder restrictions, which would open up more and more problems and concerns, or we could see more problems with the massive on growing inside his liver.  We could see problems with breathing, as they push more and more up into the lungs, or we could see kidneys shut down as they get crushed and squished.  It is all just unknown and incredibly daunting and scary.  We just do not know, and limbo is a scary, scary place.

For now, we'll enjoy all days that Caden "thrives" on his constant "four-on-the-pain-scale" pain.  We'll enjoy the times that he joins us at the table, eating as much as he can of our shared meal.  We'll enjoy each smile, each joke, each laugh.  We'll drink in the sight of him in all of his remaining vitality.  We'll welcome in our Hospice nurse as a friend at first, and as a blessing at the end.  We'll plan to visit cemeteries and headstone makers in the very near future.  And I'll sit down, like I am now, and write words that I should never have to write, while my heart bleeds out of my chest into my sentences and paragraphs all about: The boy in the bed, the warrior and hero of my world.