Josiah had scans in Iowa City today, so we packed up the kids, shipped them off to Nana’s house, and spent the day sitting in waiting rooms (well, at least I did).  The results of his tests were not the greatest….but I don’t think either one of us were really expecting good news (although a miracle would be nice!).  The plan is to start a different chemo in a couple weeks.  Josiah still needs some time for his blood levels to recover and we have plans for the two of us to get away for a few days and also some family coming in to town so it worked out well to take a “break” from treatment.

People keep asking me how I’m doing.  That’s a tricky thing to answer.  It really depends on the day.  I can have really good days where I am enjoying life and loving on my husband and kiddos and I can have really hard days and I can’t really predict when those will happen.  Like today for instance.  Most of the time I feel fine while I’m in Iowa City, but there are days (like today) where I am walking down the hall and I literally have to remind myself to breathe.  Now, between Josiah and Ava, I have a memory down every hallway and around every corner and sometimes those memories take my breath away.  There are times (like today) where I just feel so sad.  Seeing those that I love the most being poked and prodded time and time again takes it’s toll on my heart.  Watching Josiah’s face grimace while they try again and again to find a good vein as I look down at my own unscarred arms gets old.  And today for the first time, instead of feeling sad for all the elderly couples that we always see in the waiting rooms, I was jealous of them.  They have something that I want so so so badly.  To grow old with the love of my life.  To be one of those cute couples that have been married forever and still holding hands.  And, in less a miracle happens (which I would welcome with open arms), that’s just not my reality.  My reality is that I will probably be a widow before I’m thirty.  My reality is that I will probably be a single mom and my kids won’t even remember their Dad.  My reality is that I have to prepare to say good-bye to the one person on this earth that I am so close to that we are as one.  How am I supposed to do that?  Well…I really don’t know.  But I take one day at a time and I am learning to deal with the hard days even when I can’t explain them.  And I am learning that the ache in my heart is there to stay.  And I am learning that it’s OK to not know what I am feeling.  But there are days where I long for the peace that I will only feel someday when I am sitting at my Savior’s feet.  Oh, how I long for the day when the troubles of this world will vanish.  What a day that will be!  Can I hear an AMEN?

Why am I writting all of this?  I don’t know…it’s just what’s on my heart.  Also, it’s a request to please bear with me if you do catch me on a rough day.  It’s nothing personal and I’ll probably be “fine” in a few minutes and I just can’t predict it or explain it.

Thank you for all your love and prayers.

I know I have been a little vague on Josiah treatment plan, so I thought I would be more specific.  If anyone is keeping track (ha!) Josiah’s 1st round of chemo was called ICE (Ifosfamide, Carboplatin, Etoposide).  His second was IA (Ifosfamide, Adriamycin).  His third was IA again just cut back 25%.  The truth is we’re not sure what the next step will be.  I think I might have mentioned a few times how very little is known about sarcoma’s and how to treat them.  So, we are kind of just making it up as we go.  Every sarcoma is different and reacts differently so no one can predict how Josiah’s will respond.  You would think that would bother me.  You would think that would drive me crazy.  And in some ways it does, but I’m really getting used to the “unknown”….Ava did that to me 🙂  You see, Ava’s heart defect is very rare and even her particular heart defect (TAPVR) has a couple variations and she happens to have the rarest form of it.  Ava’s third and final heart surgery didn’t even have a name.  In her medical records, the surgeon called it a “re-do”.  Oh wait, it gets better.  After that surgery, the surgeon came to talk with us and said “Well, while I was in there I decided to shoot some steroids in some places because I was like, what the heck, I might as well.” and “We are throwing the book at her.”.

(this is Ava the day after her 3rd heart surgery)

She was also put on a cocktail of drugs, just to see if they would work.  I have heard numerous times from numerous doctors “I don’t know why your daughter’s alive.  But she’s doing great!”. So you see, I’m used to the “unusual” and the “rare” and the “unknown”.  I’m used to waiting and have learned to be content with the “ignorance is bliss” concept while I have it.  Because even though I prefer to just know and not have things kept from me, I also know that you don’t always hear the news you were hoping for and you cannot “un-hear” it.  All I know is that I have been given today and what is in it is what God will give me the grace to handle.  He knows what tomorrow holds and I am content (most of the time) to trust him with it.

So, back to the “plan”.  Well….we don’t know.  But we’ll find out in due time.

Matthew 6:25-34

²⁵ “That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? ²⁶ Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? ²⁷ Can all your worries add a single moment to your life?

²⁸ “And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, ²⁹ yet Solomon in all his glory was not dressed as beautifully as they are. ³⁰ And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?

³¹ “So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ ³² These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. ³³ Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.

³⁴ “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.