Saturday, July 7, 2012

Immunosuppressant Therapy

Today we are beginning immunosuppressant therapy despite the fact that she still has an infection and three open wounds. Not an ideal time to suppress the immune system but we are left with few options. With no neutrophils it seems that we may never get on top of the infection. So as one doctor put it, "we bite the bullet and hope for the best." T There are three drugs involved in the therapy. The first is ATG a drug produced from injecting T-cells into a horse and letting it build up antibodies. There are many risks for reaction, so a steroid is given as well. The third drug is cyclosporine, which has similar purpose as the ATG - to kill the T-cells (suppress them might be a better word) in her body which could be preventing her stem cells in her bone marrow from producing white cells - neutrophils in particular. The therapy can work up to 60% of the time, but usually takes four to eight weeks to do so. Today we pray that her body won't reject the drug and that it will do what it is intended to do. We pray that it won't cause even more complications with her per-existing infections and wounds. One concern is that the steroids necessary for treatment will inhibit healing of her open wounds. The plan is to taper her off of the steroids a little sooner than normal. There are too many risks to mention, however, so we bite the bullet. The bone marrow team is preparing to intervene when they feel it expedient. They have identified umbilical cord blood that is a 4 out of 6 match. They are also testing blood of both biological parents and of her biological half brother. If one of us is indeed a half match, they are considering a bone marrow transplant with a combination of cord blood and half match from family member. I pray it doesn't come to this, but it is comforting that they are preparing for anything. They are in constant contact with The National Health Institute in Washington D.C. Timmie has several unique factors contributing to the rarity of of her already rare diagnosis. Now my husband, father, and brothers will lay their hands upon her head and confer a blessing upon her. I am grateful for the power of the priesthood and the power of prayer. I feel strength from the prayers being offered in her behalf. Today a wonderful older woman, performing custodial duties in our room, sat down her mop and threw both of her arms around me. She whispered, "I love you" three times as a tear rolled down her cheek. The funny thing is I believed her. She sensed the gravity of the situation and her kindness and compassion allowed her to truly love complete strangers. I will love like this from this day forth.

7 comments:

  1. Ok. So for everyone reading this blog... I plan on fasting tomorrow... Sunday, july 8th. I'm not usually so publicly agressive with my faith. However.. I invite every human being to join this fast with me. I will also be praying for Timmie and her family throughout the entire day. My fast will begin @ 7pm tonight and end @ 7pm tomorrow evening. Please comment if you plan on joining me in a massive fast and prayer Sunday. I will be inviting all of my other friends and in- laws to join me. May our heavenly father answer our prayers.

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  2. Amy
    I love the story of the lady with the mop. I believe in angels and I know that's what you need right now. I've thought of you so much. I don't know you as well as some, but I've always admired you as a teacher and member of our ward.

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  3. Is there a match for bone marrow? If not how do you get tested to see if there is a match?

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    1. http://www.marrow.org/Join/Join_the_Registry.aspx You can join the bone marrow registry by mail, it is really easy, you just swab your cheek with a kit they send you and send it back marrow.org

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  4. Hi Amanda. This is Amanda, my daughter is Millie. We are in room 4404. I have been wanting to talk to you again, but you seem to always have a doctor, nurse, or support around you. Please know we are just down the hall if you need anything at all. We will be praying for your sweet girl. Much love, Amanda
    www.bradyandamanda.blogspot.com

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  5. I'm pretty sure the sweet lady with the mop must have felt a little nudge that I was sending your way. At least one of her "I love you's" was from me! There are so many of us who are sending our prayers and our love your way.....and yet feeling so helpless. I only know that Timmie is one of the strongest and most amazing people I know. She inspires me with her strength and her courage....and with her huge and selfless heart!

    We are here for you Amy. Please don't hesitate in letting us know how we can help. It would be a great opportunity to serve you guys. Until then, just know that our thoughts and prayers are with you.

    Kelli

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  6. After seeing you and Timmie Friday, I feel like I am constantly praying and thinking about you. Timmie is amazing. Everyone knows how strong she is. It was great to see her even though I know she is struggling yet she is pretty positive and trying so hard to do her best. She's going to make it through this. If anyone can do hard things, it's Timmie. Right now she is playing in the hardest game of her life, she has a HUGE cheering crowd and she is not going to give up until she wins.
    Amy as a mother to a mother, you will get through this. I know first hand how hard it is to have a child be sick and you feel helpless. I know the weight on your sholders will be lifted, in time. But for now you rely on your Father in Heaven to help you. He loves you and knows the pain you are going through.
    We are here if you need anything.
    Shaleece

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