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Nov 23 / lindsay

November 23

A little over a week ago, on Nov. 15, Matt received an infusion of special T-cells as part of the new treatment Grace described in the last blog post. It was supposed to be the first infusion of three, only 10% of the cells they had collected from Jon and genetically altered to attack cancer cells. The infusion went as planned around 1 pm and we were all very excited that this new treatment was actually happening! Then around 10 pm Matt’s temperature was 101. A little concerning but not unexpected to have a slight fever due to the new cells. Unfortunately his temperature just kept going up that night, as high as 105. Nothing seemed to bring it down very far and it stayed in the 102-104 range for several days.

Needless to say it was scary and Matt was in a lot of pain. The doctors guessed it was related to the T-cell infusion but¬†treated it like a severe infection just in case (they now know it was not an infection). The study doctors decided not to give him the next 2 doses of T-cells because of the fevers. By Thursday Matt’s pain was mostly under control but the fevers continued. The fevers also increased his heart rate and lowered his blood pressure. He was put on fluids, antibiotics, and closely monitored.

The hope throughout this time was that the T-cells were doing the job they were designed for, and the fevers were just a sign of the struggle going on inside his body as the T-cells started killed leukemia cells. But there is really no way to know that at this point. None of the blood tests so far have shown any indication of T-cells in his blood. Dr. Porter, the head study doctor, explained that this news is not good or bad, that he wouldn’t have expected to see any results yet as it is too early.

Matt’s fever came down quite a bit over the weekend, in the 100-102 range, and then on Sunday it was finally below 100. On Monday it was even normal and we hoped that the feverish spell was over and Matt could be out of the hospital by Thanksgiving. Unfortunately Tuesday night he spiked a fever of 104 again. Today so far he is ranging from 98 to 100.

It’s hard to know what all this means. We are realizing that this experimental treatment is just that, a new science that is very untested so far, that these doctors do not really understand exactly how it all works yet. Dr. Porter explained that they don’t really know the “right” dose of T-cells; they gave Matt 10% of what they collected, but even that small percentage was 50 million T-cells, and it might have been too big a dose since it caused such a reaction. Although they didn’t give Matt all the cells he was originally scheduled to get, they feel that the dose he got was sufficient to be successful and they might not need to give him any more.

Right now we are waiting. Waiting for Matt to stop having fevers, and waiting for real results that will tell us whether this treatment is working or not. Matt is waiting to go home. He has been in the hospital over 3 weeks now. He had a goal to be home by Thanksgiving. Today we know that is not possible. For those of you praying for us, please pray that we will have patience during these times of waiting. I am struggling to have patience, as I want Matt to feel better; and Matt is struggling to have patience, as he just wants to go home.

Grace and Alan and Jon and Amanda are on their way here. We had hoped to cook some delicious food together and relax at home; instead we will be crowded into Matt’s hospital room. But we will be together, and for that we are very grateful.

12 Comments

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  1. kathy e. / Dec 11 2011

    prayers and hugs

  2. Andrea Wenger / Dec 8 2011

    Just wanted to let you know we’re thinking of you…

  3. c-rad / Dec 1 2011

    +1 to all above.

  4. Penny Blosser / Nov 25 2011

    We will continue to pray for you and your family. This is a new and exciting time for you to be a “test subject” and on the cutting edge of new treatments. Praying things well get better, the fever and pain will stop and you will get better.

  5. Marilyn Martin / Nov 25 2011

    Matt and Lindsay, Our extended King family is praying for both of you as well. Hoping the T cells are doing their job!

  6. Sharon Witmer / Nov 24 2011

    Thank you so much for the update. We love you both and are happy that you all will be together for Thanksgiving. I wish along with you that it could have been at home. Praying for tcells!

  7. Irene Rhodes / Nov 23 2011

    You are never far from our thoughts and prayers.

  8. Linda Holloway / Nov 23 2011

    You all will be in our thoughts and prayers during this difficult time.

  9. Jay Reesor / Nov 23 2011

    Hi Matt,

    Just wanted to tell you that we are following your progress. We are thinking about you and praying for you everyday. Hope the fever stays down and ….go T cells!

  10. Ellen Bowman / Nov 23 2011

    Thanks for the update. We are so sorry that this continues to be such a long road. We continue to pray and hold you up.

  11. Jason Garber / Nov 23 2011

    Thinking of you

  12. Marcia Ramsey / Nov 23 2011

    I know you two have had real struggles since your marriage and before….our hope and prayers are that the doctors can figure something out for Matt and give you the life you both deserve together. Love to you both, Dave and Marcia

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