Not-so Epic

I was hoping that the time away from Seattle would be exactly like it was over the weekend.  On Sunday, when we were 49 miles from home, Caden sat up in the back seat with anxious energy, "I'm so excited!"  From there, he was such a different boy.  It was an amazing two days home.

I thought that he would feel better being home after the "easy" chemo on Wednesday.  Instead, because of my high expectations, it's been harder.  He's not more sick than he usually is, I just thought he would feel better being home.  So, without the miraculous healing of home, I just feel depressed again.  Caden truly is sick.  More sick than he has ever been, to be quite honest.

Since Wednesday, he has been able to keep nothing down.  Nothing.  Being Friday night, that is three full days without nourishment.  He is also suffering from so much pain that they have bumped up his dose of narcotics yet again, making this the third time in a 23 days.  Where he was completely off of pain medications by the third week 2 years ago, he is getting worse week three this time.  Since January 17, 2016, Caden has barely been able to eat, has been in so much pain that he needs constant hardcore pain medications, or he's been too nauseous to even function.  He has not been living, not really.  And it breaks my heart.

The kids had a dentist appointment this morning, one that has been scheduled since August 2015.  Caden was not able to make it, obviously.  Before they began, while they were getting all of the paperwork updated, they asked me if I would like to go ahead and make the kids' next appointment.  I was finishing up some signatures, only half paying attention, when I heard, "OK, so I can fit all four in on August..." I had to stop her right there.  I could not listen to her for a second more.

"No, wait, I have five kids.  I know Caden is not here today, but could you please, please just schedule him in August?"  My heart had gone cold, my mind was screaming, "I am not ready to schedule for only four.  I have five kids!!!" 

I had to walk away and catch my breath.  I felt bad for how awkward I had made the situation with my tears, but I just couldn't plan for Caden to not have an appointment, like the many, many appointments they have always had together at the dentist for the last three years.  It was a deep yearning in my soul to have hope that my Caden would be able to make that appointment in August.  Because that would mean that  Caden was still with me, that we had broken free of Seattle, and that we were together as a family.  I have FIVE kids, dang it!!!!!  Please help me keep him on my future schedule.

It feels like we are having more and more hard days.  It seems that each day just adds to the sorrow of the previous ones, getting heavier and heavier.  To watch your child suffer as we are- losing more and more weight (he is skin and bones, but for the massive tumor that makes his tummy distended), sleeping more and more, being in near-constant pain- it hurts worse than I could ever imagine.  It is getting harder and harder to keep my emotions in check. 

I am terrified for next week.  With as much as he's thrown up with the "easy" chemo, next week has five days of intense chemo, with only a two day break before more "easy" chemo, I don't know how he's really going to benefit from the feeding tube anyway.  It's not like the feeding tube is going to make it any easier to get nourishment into his body.  He's not throwing up because he wants to!

I was hoping to be able to write about our epic fun week, the one where we all recharged our emotional batteries for the upcoming challenging weeks.  Well, more challenging, if we can even believe there could be more challenge.  But the truth is, he is progressively getting worse.  March 9 seems an eternity away.  Please pray. 

Like Quentin L. Cook said, "Hope you Know, We Had a Hard Time."