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Scary Rash!

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His rash looks "more worse" than this:)
Aaron’s rash, from the perspective of a five-year-old friend: “Woah! Your face looks scary!” A few minutes later she saw Aaron again and said, “It looks more worse in the lightness!” That’s going to keep us laughing for a long time. She’s probably saying what everyone else is thinking, but too afraid to say it. I guess when you see it every day you don’t realize how bad the rash really looks. Besides, it’s an outward reminder that the medicine is doing its job, and what’s not to love about that?

We had a doctor visit on Thursday and he was pleased with Aaron’s progress. He was amazed to see that Aaron was not tied to an oxygen tank. It’s hard to describe how bad Aaron was before treatment began. In fact, Aaron asked the doctor how long he would have given him to live had he not had the EGFR mutation. His answer, “3-6 months.” We believe that means 3-6 months even after chemo and radiation. We are feeling very blessed.

We have tried finding hopeful stories of people with stage IV lung cancer. We have found one. She has been on Tarceva (the pill Aaron is currently taking) for over two years and she is still responding. We just don’t know how long Aaron will respond. For some people it works for 7 months, 11 months, 18-24 months. Everyone is different. We need Aaron to get the longest response possible out of this medication, so that when it does stop working we have more treatments available. There is another drug in phase III clinical trial that is very promising. We just take one day at a time, and today is a good day.

I frequently have to remind myself to focus on the things I know for certain, and place all the unknowns in the Lord’s hands. From time to time I still think about the unknowns, and there are a lot of them at this point, but I hand them back to Him when they become too heavy. I know in whom we trust. I know this will work to our good. We pray we will be blessed with the miracle of time. Maybe we are being stingy, greedy, audacious, but we are holding out for a good amount of time.  Time to raise our family and time to give ourselves more fully to the Lord. Call me crazy, but I am looking to get 30+ years out of Aaron. I know it can be done, but will it be done? Time will tell. Time. Time. Time.

Aaron has another PET scan and MRI in June. Thank you again for your thoughts and prayers. At every turn your goodness and prayers are blessing us. I’ll give you another update later in the week.

Love, Lorraine & Family

Comments

  1. SamApril 19, 2015 at 12:13 AM

    We love you and are keeping you in our prayers xx

    ReplyDelete
  2. SamApril 19, 2015 at 12:13 AM

    We love you and are keeping you in our prayers xx

    ReplyDelete
  3. AmyApril 19, 2015 at 6:29 AM

    This is so great to hear! Praying for you every day!

    ReplyDelete
  4. KathyApril 20, 2015 at 8:07 PM

    Time is dear and time is a gift. How wonderful that we worship the God who not only grants us time but also promises eternity. Truly we are in good hands.

    ReplyDelete
  5. AnonymousApril 23, 2015 at 4:41 PM

    I love you Lorraine. What a special family you all are.

    ReplyDelete

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