Tuesday, July 26, 2011

Life's Daily Decisions

Yesterday we met with the Primary Oncologist. He told us that the clinical study that we had hoped to get Josh into was closed except for people that have a rare strain of AML that effects a specific gene. They will test Josh to see if he qualifies, but if he does it is bad news not good news as that form of AML has very poor survival rates.

It was a very difficult day for us as we are feeling the fatigue of travel and hospital life and then having to make decision about medical treatment that stretch our faith. Most decisions in our daily lives fall into the category of, what will I wear today or where should I eat lunch. Sometimes we face the more challenging decisions like who should I marry or should I apply for this new job. Many of these decisions are important and I admit that in the past I have taken some of them to lightly without prayer or seeking God's wisdom.

Today or tomorrow we will face a decision about the life of our son. The doctors tell us that the Leukemia that Josh has will kill him if untreated in as few as 3 months. The only option they are offering is to treat him with chemotherapy (a combination of drugs that kill cells in his body) that have life long side effects that include potential damage to his heart, infertility, hair loss, nausea, risk of infection from low white blood cell counts and a few other things that sound minor until you combine them with everything else.

In exchange for these side effects they can give us an educated guess of a survival rate of around 60%. They have made many advances in the treatment of AML over the last 20 years, and many of the advances are in managing the side effects that result from the chemotherapy as well as improving the survival rate from 20-30% to over 50%.

Today they will give Josh an ecocardiogram to check his heart function. We are still waiting for some of the test results before they can give us the options on the specific treatment. We will also meet with a physician from the Integrative Medicine Program that can give us information about alternative treatments that can help with some of the side effects.

Our prayer is that we will have wisdom on helping Josh choose the best course of treatment. So much of the treatment process involves the patients commitment to fight through the side effects and the emotional stress that the entire family goes through. We have heard many times already that this is more of a marathon than a sprint and it is important to approach things one day at a time.

Today is a new day and we may have to make life and death decisions with our son. But I am continually reminded of Psalm 139

Psa. 139:13 You made all the delicate, inner parts of my body

and knit me together in my mother’s womb.

14 Thank you for making me so wonderfully complex!

Your workmanship is marvelous—how well I know it.

15 You watched me as I was being formed in utter seclusion,

as I was woven together in the dark of the womb.

16 You saw me before I was born.

Every day of my life was recorded in your book.

Every moment was laid out

before a single day had passed.


God was not surprised last week when we found out that Josh had AML. Nothing that the doctors can do will change what God knows about Josh. When we face these life and death decisions, it feels like we are acting like God, but that is why God is God and we are not. I can't become God and cause my son to live or die. I can't change the number of his days because every day of Joshua's life has been numbered already.

Today is Josh's 6,382nd day.

It is one more day that God had in His book for Him. I don't know all that today holds for you or for me today. Today I will choose to tell others about the God who loves me so much that He chose to sacrifice His son's life so that I could live.

As a dad I can't imagine that. I told Josh the other day that if it was in my power, I would take his AML if he could live. I realize now that giving up my life would be easier than sacrificing my son's. God has been where I am today, he had a choice to make, to save his one and only son and let everyone else get what they deserved, or He could sacrifice His son and offer everyone the gift of life.

Today God has already decided how He will bless our family. He has chosen to put us at MD Anderson to show off His Glory, Faithfulness and Mercy. Today we will learn more about Him and see Him at work in us and through us. Please pray that we will have patience and grace as we interact with medical professionals who don't even believe that He exists. And pray that as we choose between courses of treatment that we would have wisdom. That as we make life and death decisions, that others would see God in us.

Take the decisions that you have today seriously. As for me and my house, we choose to serve the Lord and let Him be glorified through us.



10 comments:

  1. Praying hard for each of you as you walk faithfully through this time. May His perfect comfort, grace and peace fill you every minute of every day. Please let me know if there is anything I can do... ~ DeeAnne

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  2. Love you Josh. Jeremiah 32:27, Dwight

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  3. You dont know us but We used to live in Dalhart and all of our children were born there. We still have relatives there. Our neice Kasie Ballard and My brother-in-law Geraldon McElroy. I cannot phathom the decisions you are having to make, but just know God is making the right ones with you.We pray for your strength and we lift you up to Him in prayer.
    Jack and Tonie McElroy
    Lago Vista Texas

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  4. The Swain's are praying hard for your sweet family. GOd's gonna show off! I just know He is!

    "In this world you will have trouble. Take heart! I have overcome the world!" John 16:33

    Love y'all,
    Sarah, Jason and the hoodlums

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  5. Brian & Ilene, finally figured out how to get this thing to let us comment. We have been reading daily, thank you for sharing your life with us.
    We love your family deeply and repeatedly remember your family in prayer, giving thanks: for Jesus, who is continually interceding on yours and Josh's behalf; and the angels of God whom God Himself has designated to minister to each of you. These angels who continually are before the face of God. Our amazing, wonderful, beautiful God. Who daily causes the sun to shine so Josh can feel it's warmth, and you can be reminded in yet, another amazing way of His greatness, His power, His understanding of everything you are going through. How awesome is the God who is our Savior, and cares for you. Josh, Sarah, Ilene & Brian,You are the lamp in which the light of the world is shining thru. We love you, please let us know what else we can do.

    Josh, with all that WAS in the "Wizard of Oz" unicorns would of been a nice touch. (even though the broom was a little more suited for a witch to ride, or can you imagine if they had replaced the flying monkeys with a bunch of unicorns, probably not a pretty picture, even though it makes me laugh just thinking about it).

    Jeremiah 32:27 Dwight

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  6. Thinking and praying for you all!.

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  7. Well said Brother!
    Doug

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  8. I had to check in before going to bed. You have been on my mind and heart all day. Had a feeling... guess you could say the Spirit was leading. Before we arrived to see you at BSA the words, "in all things we are more than conquerors" kept running over and over again and I didn't want to say "...somewhere in the Bible it says something about being more than conquerors because even when it's hard we've already won." A- because that really sounds dumb and B-it's even dumber saying that to a pastor. I was searching for the verse reference all the way up to Josh's door. I couldn't find it. As I was reading this post it was clear. Romans 8:37. But as I've been taught, you need to read all around to get the entire context of the verse. Romans 8: 18-39. All around this verse is encouragement meant for you right now in this moment. I am so so sorry this nightmare has become your reality. I know what it is to desire to give your life for your childs anguish. Trust in God and the faith you have been given. As much as you appreciate Christ manifested in us, it is our pleasure to stand in the gap with you and know that you are blessing us with your encouragement on staying focused. Exodus 14:14 also comes to mind. That was the verse for Max's (my friend Leslie's nephew). Psalm 91 also comes to mind, no matter what Josh (and you) will face never forget our God is bigger and stronger and more powerful than anything the enemy can try to put us against. God is the author of not only life, but life ABUNDANTLY. Josh is going to beat all of those statistics. It is a marathon and you are going to get sick of hearing that. There was a time in my life when one day at a time was to much to handle, I had to take it one second or one step at a time. Stay focused and just breathe. Tell Ilene I have not forgotten about the sunday school lesson. We're in Denver picking up the boys from their california trip. I will get it to the rondezvous point as soon as I get back and I can not ever say it enough, we love you all sooooooooo much.

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  9. You are all in our prayers.Will be thinking and praying for you tonite.
    Carl & Jan Larsen

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  10. praying for you all daily. If there is anything else I can do please let us know. We love you guys. Kevin and Jamie Martin

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