Sometimes it’s hard to know when to update.  Things can change moment to moment…they have for the past 10 months.  Josiah’s pain has increased quite a bit over the past week.  We have tried to make some changes in his meds at home (with the help of the doctor of course) but that just was not cutting it, so we came back to the hospice house yesterday.  They tried one med last night through his port which didn’t seem to work, so we are on to plan B today.  We are going to switch over his narcotics from pill form to his port.  This option offers more steady pain relief, Josiah will be able to increase it with a touch of a button, and he won’t have to take so many pills (which have started to upset his stomach).  We are hoping and praying that this gives him the relief that he needs.  Josiah’s lung function has improved a lot and we have stopped using his drainage tube every day because there is nothing to drain in that area.  He is having a lot of swelling in other areas where his tumors are growing.  His leg is of course giving him trouble.  Sometimes I forget what I’ve mentioned and what I haven’t, but Josiah’s main tumor is in his right thigh and because of the growth of that tumor he has lost a lot of the circulation in his leg all the way down to his foot.  It has also caused a lot of swelling, to the point that his right leg is more than double the size of his left leg.  This has been going on for quite a while, but it continues to get worse.

It doesn’t surprise us that he is having increasing symptoms, but it doesn’t get any easier seeing someone I love so much in so much pain and discomfort.  We don’t have the hope that he is going to get better, we have the knowledge that things are going to get worse.  Without a direct miracle from God (which we believe is, without a doubt, still possible), Josiah’s body will continue to deteriorate.  Even if God did heal Josiah from his cancer, his body would still get old and die eventually.  Really, we have been fighting against death, not cancer.  We are all appointed to die (Hebrews 9:27), and God holds those times in His hands(Psalm 139:16).  Death really is a part of this life.  In a sense, we are living among the dead and only in heaven will we be among the living.  We were made for heaven and for those of us that really know Christ as our Savior, that brings hope and peace that can not be explained.  The trials of this world are very real and very painful, but we have a joy that is set before us!  Please pray that we will run this race with endurance (Hebrews 12:1-2), and joy (Acts 20:24).  We do feel weary.  I have never prayed for God’s mercy so much and with so much understanding of what it means.  But we know that God’s grace is sufficient and we are claiming that promise.

Sucks, sucks, SUCKS.  A lot.

I don’t usually talk like that, but I’ve been wanting to use that  tittle for a while now and today seemed appropriate.  Yesterday, we had the talk.  The hospice talk.  I kinda figured it was coming, but I wasn’t expecting it at this appointment.  Josiah was scheduled to go to Iowa City yesterday for a chest x-ray and a check-up with his oncologist.  He’s been having trouble with his lungs, shortness of breath and some coughing.  The x-ray showed fluid in half of his right lung…a result of the tumors.  There is not much that can be done, it will probably just keep getting worse.  It’s not like they gave him a timeline or anything, they really have no idea what the future holds.  But they did think that getting hospice on board for when we need them would be a good idea.  It was an emotional meeting.  Everyone shed some tears…I think the doctor teared up too.

Sometimes I feel like we have packed a life-time of experiences into the past five years and it makes me feel old and tired…just completely worn out.  Other times I feel so young and inadequate to deal with some of this and make all the decisions that we have to make.  But most of the time I feel a confusing mixture of the two…yesterday I felt like I was in the winter of my life and also so unequiped to know what to do…I’m only 25 for crying out loud and It’s not like you cover this in pre-marital counseling or anything.  The hospital staff were all very nice and caring about everything, but it’s still decisions that WE have to make.  It sucks.  I hate that this stuff taints everything we do…even though we try not to let it, it’s always there.

I really do experience God’s peace…but it’s a moment by moment struggle to stay in that place of peace and trust and I often do not win that fight.  In our doctors meetings it’s an even harder battle.  Usually at home I keep my myself so busy with laundry and dishes and cooking and cleaning and reading books and dealing with 1-yr old tantrums and 3-yr old tantrums and playing games and doing “projects” and talking with my hubby, that I don’t let myself have time to cry too much, or be sad too much, or be angry too much, or depressed too much.  It’s a good thing.  And this is not a plea for more help or meals because you all have been MORE than generous and giving.  But after meetings like we had yesterday, I feel so overwhelmed by all that I have on my plate.  I would not trade one second of my life with Josiah for anything…but I hate that I am slowly saying good-bye to him.  There are times when I feel like I just can not go on…but I do.  God leads me a long just one step at a time.  I wish I could say that this journey has made me stronger and more faithful in spending time in the Word and in prayer.  But I don’t feel that way.  The things I struggled with before and are just magnified now.

So, there you have it.  It sucks doesn’t it?  I’m not even going to try to wrap this up.  I just can’t tonight.  I hope you all know me well enough by now to know that this is just a small part of what is going on in my heart.  There are many happy, thankful thoughts in my head as well…it’s just not what’s coming out tonight.