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.
Beautiful Things 
Cast all your cares on Him; for He cares for you.
Continuing to pray.
Hello Josiah and Jess,
It is a great privelege to hear of God’s difficult workings in your family. You both are a tremendous example of faith and calm endurance. Your suffering and trials build not only your faith, but that of the rest of us reading your story as well.
This morning I was reading Psalm 66 again:
“For Thou, O God, hast tested us,
Thou has tried us as silver is tried.
Thou didst bring us into the net,
Thou didst lay affliction on our loins,
Thou didst let men ride over our heads,
We went through fire and water,
Thou hast brought us forth to a spacious place.”
This time I noted that God is the one ultimately responsible for the trials and afflictions, and all of these are for the purpose of trying and testing our faith (which as Peter says, is more precious that silver or gold) and ultimately bringing us to a “spacious place.”
We will continue to pray for grace and endurance for you.
Carroll Hardy
All I can say is, Wow! We serve and amazing God and nothing is a surprise to Him. Nothing surpasses His grace. Thanks for being such a great testimony of that grace. Love you guys…praying for you.
Jess-
I don’t know if you remember me, but we were in homeschool choir together years ago. A mutual friend shared this website with me and my family and I have been praying for your family ever since. I just wanted to let you know that I am currently living in Iowa City 15 minutes from the hospital. If you and Josiah return for treatments, please let me know. I would love to cook you guys a meal or let you come over to my place to get away from the hospital for a bit if you ever want to. Please e-mail me if you ever need anything while you are in Iowa City!
Elizabeth Gulleen
amen! thanks again for sharing jess! you 2 are such an amazing testimony for us of the AWESOME God that we serve! we praying for you all! we miss you 4 so much and can’t wait to see you! hugs from all of us! nate & sarah
Dear Jess;
My heart and prayers go out to you and your entire family. We do not know each other but that does not matter. Just know you and yours are in my Prayers.
Josiah and family,
I just heard from your mom Josiah and she let me know about your ongoing treatment. We remember you as a teenager of course since we moved away 12 years ago. You were a wonderful child and it appears you have turned into quite the family man with a lovely wife and children. I am not in the least surprised that you chose such a lovely companion with such a positive attitude because I remember your ever-present smile, your great attitude and your work-ethic which was instilled so well by your loving parents. You could not have asked for better parents and siblings. (You were our favorite neighbors because you were all so well-behaved) You have been through a lot at your age. A lot more than most of us could deal with. Please know that Bill and I are praying for you to and your family and we will send this to our friends who will do the same. I honestly don’t know what to say because it doesn’t seem fair. However, you two do not seem to be dwelling on the unfairness of it and so I will not. You have taught us all a valuable lesson in your struggle. God give you strength, he has already given you the biggest gift of all, his love and the love and support of your family and friends which will help you get through this.