Marshall's music, t-cells, t-shirts and more

Friday, May 2, 2014

On the Front Lines Again

This is a post that both of us have been putting off and that we prayed would never have to make. Unfortunately the leukemia is back for a third time. There is something I must clarify though. I've heard some people comment saying, "well what is Marshall doing wrong for it to be back again?" The correct way to put it is that the cancer has never left. It just hides out and grows until it is detectable by human testing again. All we know is that this must be an extremely strong strain of leukemia because 1) Marshall's own immune system didn't fight it off 2) Neither did his first donor's immune system and 3) Neither did the second donor's immune system. We are still so very grateful to his donors however because they at least kept the cancer at bay so Marshall could be alive for these past 2 years. Had he not received the transplants, he would not have seen his son turn 2, so we are blessed!

We knew Marshall's leukemia had returned when he started having night sweats. Even after hearing the PA say that it possibly could be an infection causing his white blood count to go so high, we knew. We had heard the exact same thing when he was diagnosed in 2012. Thirty percent of the the white blood cells in his blood were his cancer. That does not sound very high, but it's important to remember that before the blasts travel to his blood they have to fill up his bone marrow first. We have not done a bone marrow biopsy yet because it really does not matter what percentage the blasts are at in his bone marrow, it just matters that it is there growing rapidly and crowding out any more room for normal, healthy blood cells to thrive in his body.

One morning we were reading about a study in New York involving T-cells and HIV. We were about to meet with our coordinator and we were almost sure she would say you have no options after 2 stem cell transplants. She had already told us that Marshall was considered a "fail" on the blinatumomab study. The amazing thing is that the 26 page protocol she handed to us was the very study we had been reading about only it is being done in Pennsylvania. She said the staff there has been interested in the research, they had just never had anyone survive 2 relapses and transplants. We thought it was a good sign that what we had been reading about that very morning is what they suggested.

So here we are with plans to fly to PA in a couple days and Marshall will undergo days of testing to see if he can do another trial. It's very risky. Marshall has to sign permission for autopsy results if he gets in. There are numerous other things that could happen. Marshall is a warrior though and he would rather die trying than just die. We will be missing my brother Karl that I have not seen in 2 years coming home from Japan and we will be putting off any plans for in vitro (we were awarded one cycle after applying for a grant) for now. We pray again that this will be the cure but if not we hope to at least give Marshall more time with his son and maybe even a chance to have another child. When Marshall and I were dating I asked what he wanted to be when he grew up and I was surprised by his answer, "a dad".  We really don't want to be on this life and death roller coaster any more and we are so sorry to our family and friends that have been forced to ride along with us. We love you all and are so shocked at how many are coming together to support us again for yet another battle. We love you

6 comments:

  1. I started reading your blog after I found out about your story through your cousins I think-the McKee's- who served as the mission President in Tennessee. I listen to Marshall's music and have been inspired by your story and attitudes.

    I am sobbing after reading this post... I am so so very deeply sorry. My heart is breaking for you as you are being forced to endure this tragedy again. I just can't believe it. I'm so sorry. I will be praying for you earnestly.

    With Love,
    Leslie Breeding

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  2. A friend of mine told me about this institute when I was telling your story to her. I don't know much about this place but thought I'd forward it along to you so you guys can research it. {{{Hugs}}}

    The Gerson Institute
    http://gerson.org/gerpress/

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  3. Nevermind....I just saw in the freqently asked questions on the website that is listed acute leukemia as one of the conditions that doesn't respond well or at all to the treatment. :(

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  4. Yes thank you Leslie, but we did look into the Gerson diet and unfortunately it does not help ALL. Thanks for your prayers! We are not giving up hope yet!

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  5. I came here from the "Our Brave Little Lion" blog, and I've been cheering your family on as you've overcome so many trials in the past couple years. You are in my prayers as you face this. I wish I had read this earlier so I could've included you in my fast.

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  6. Oh my friends how deeply I wish this trial was over...but we aren't forced to ride along....we are so blessed to love you and to be loved even more in return....I will miss you and pray for your safe return...especially to have you down to see the house! :)

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