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Nov 4 / grace

New Treatments

I am sitting here on Thursday with Matt and Alan. Lindsay is at work. Matt was admitted to the hospital on Tuesday. His white count was way too high (around 130). This caused Matt to feel like he has a very bad case of the flu. Lindsay described the doctor visit on Tuesday as “intense” as they explained the risks of such a high white count. Of course we never want to hear that leukemia cells are active again, but this was particularly bad as his white cells were doubling every day meaning the leukemia was very aggressive. They treated it with several types of chemo over the past few days. Today the doctor told us Matt is back on track; his white cell count is coming down and they believe this may have been triggered by an infection that they have identified. (As of Friday, his white count is all the way down to 3.4, so he has responded well to the chemo.)

Matt has been doing really well the last two months, so this was unexpected. Matt is scheduled to start a new treatment on Monday. He is going to be the first patient in a new trial in treating leukemia with modified T cells or gene therapy.  You can read an article about this study in the New York Times http://www.nytimes.com/2011/09/13/health/13gene.html?pagewanted=all. This method has been tried three times on men with CLL, Matt will be the first with ALL.

The coordinators for the trial came by and talked with me today. I think I asked them questions for at least a half hour straight! They graciously answered every one. Matt is on track to start the chemo phase on Monday and then the cells will be introduced to him Tuesday, Wednesday and Thursday the next week (Nov. 15-17). After that they will closely monitor him for two years and follow him for 15.  The doctor told me today that they are planning on Matt being one of their success stories. Matt is already my success story.

It is impossible to even describe my feelings as a mother over the past year and a half, since Matt has been diagnosed. They run the whole range – some days I am just plain scared and sad, then ask why; but the sweet depth of getting to know Matt and Lindsay and how they walk together in this very hard journey is incredibly sweet. It takes such a strong person to endure what Matt is going through. We all have resolve, and enjoy the good moments, and plan for the future. Every day I pray the Lords prayer as I wake up and ponder on the part “may your will be done on earth, as it is in heaven.” My goal for our family is to be able to understand that will and to walk in it here on earth. Every day, one day at a time.

These are some exciting days for medical science and medical breakthroughs.  We may be experiencing some of them here. So I ask for your prayers for Matt’s healing along with the brilliant minds in the research and the compassionate care of the doctors and nurses. We pray for each of them as they all work together, doing this business of healing.

8 Comments

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  1. maria / Dec 9 2011

    I love christmas lights, they remind me of my co-workers, they all hang together, 1/2 of them don’t work, the others are not that bright! :-)

    Praying still.

  2. Beth / Nov 4 2011

    Grace,
    Your words and life are an inspiration to all of us who have walked with you this last year and a half. May you find peace and strength to continue to face each new morning with courage and trust for Matt’s healing and may God’s healing arms continue to surround your family as you walk together on this journey!
    You are always welcome to retreat to the farm. Hugs and love.Beth

  3. Carol Musser / Nov 4 2011

    My prayers are with you as you go into this new treatment. I pray it will be successful for ALL leukemia. My prayers are that some day leukemia will be no more for anyone. (I lost a precious grandson to leukemia just a few weeks ago)
    I have been following and praying for Matt for months now, when I worked with his Aunt Rachel in PA.
    Blessings as you all continue to love, support and rally around Matt.
    I am so anxious to see how this treatment will benefit many in the years to come.
    Carol

  4. maria / Nov 4 2011

    Thank you for the update. Your son Matt has resided in the corner of my heart for quite some time. When I think of this time in your lives, as a mom, I sigh, I struggle, I plead, I wonder, I ask why, I cry, I hold on for a good word…good news. When we got the good news about Brian, I couldn’t help but think immediately about Matt, and prayed again for your family and for a mother’s strength as she continues in the battle. You may not hear it often, maybe you do, people are praying for all of you. We are hearing you, in many ways, we are with you. I am thankful for the science and technology He has blessed mankind with. May it prove effective in Matt’s case. We will continue to back it up with our prayers. God Bless.

  5. Mary Schrock / Nov 4 2011

    Grace, your words are beautiful, and full of hope and trust, and so painfully real! Your courage and faith is a testimony of someone who is grounded in the mysteriously beautiful work of a Loving Father. You are such a blessing!
    Hugs and prayers for you and your family!

  6. Chel Janci / Nov 4 2011

    Going through an illness myself- I am learning very quickly that factors beyond my treatment plan are what is going to help me become healthy again. Those factors are , my faith in God and his power, Being surrounded by a loving support system of friends and family , being an optimist, and having a sense of humor. Positivity is an attribute that is hard to muster up some days, but I have made a point of trying to do that each day, and it surely helps make this journey easier. I see that Matt has all of these elements in his life. These factors combined with gifted physicians and medical advancement are a formula for hope!

    I have hope for Matt and am inspired by the love and tranparency in your words…

    Love, Chel J. :)
    Peace

    • grace / Nov 4 2011

      Chel,
      I understand that 11-11-11 is a very special day for you. Thanks for your caring words and you are also in our hearts and prayers.
      Blessings to you and your doctors in the upcoming weeks.
      Grace

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