Monday, October 28, 2013

A Step Forward & a Step Back


     Our little Hazelnut is back!  She got several nights of great sleep, she's smiling, playing, being silly and bringing joy to everyone around her.  God has restored her spirit and I am so thankful!  Because her counts have been so low, Aaron and I made the choice that I would not take my chances going home and being exposed to something, only to bring it back to her.  So I have remained at the hospital since October 2nd, and he has only been able to visit a few times.  But since her counts have remained good, we felt it safe enough for Aaron to come stay the weekend with Hazel and for me to go home with the other children!  It was wonderful to spend that time together!  Hazel was feeling good and was so cheerful.  It was comforting to Aaron to have those moments with her.  As for me; I was able to carve pumpkins and decorate the house for fall, we rode bikes, watched movies and played games.  

     Despite all the progress she is making with her energy level, we have had several setbacks that will assure we will NOT be coming home this week.  She is still not eating or drinking, her nose continues to bleed and she is relying on several platelet transfusions, she she has spiked another fever and has had blood and clots in her urine (which has been painful for her and disrupting her sleep).  We have been doing many tests and this is what we know so far:
  • The bloody urine came back positive for something called BK virus. They had to increase her fluids to flush it out and she had a few days where it seemed to clear up and she had no problems.  But this evening it came back with a vengeance.  It has caused a lot of pain so they had to re-increase the morphine.  They are even discussing putting her back on a continuous drip, which will only keep us here even longer.
  • Most likely because of her BK virus, her counts have dropped a bit today.  Please pray that this does not become a trend!
  • Her fever has led us to draw blood cultures from her central line to test for infections, but so far they have all come negative. 
  • There continues to be no common symptoms that would indicate VOD
  • Today, because of the fever, she had a CT scan to see if there is something fungal growing somewhere in her body.  This also was negative (praise GOD!)
     Although I am very happy that the test all continue to come back negative, I am also feeling very anxious.  The doctors seem at a loss for what would be causing this fever at Day +18 and keep running tests with no conclusive results.  So please pray for discernment for the doctors and that God would guide them to figure out what is wrong with my daughter.  And please pray that it is just a side effect from the transplant and nothing else!

     Though these days are difficult, my mighty and powerful God has remained ever faithful in carrying me through them.  He has comforted me in my sorrow, has lifted me up in joy and has displayed Himself to me in ways that I have never experienced.  And it is the prayer of my heart that everyone may see how He has worked in our family's life.  These last few weeks have been extremely arduous and sometimes very overwhelming, but I have taken comfort in His promises and, tonight, Paul's prayer to the church at Ephesus has really spoken to me and I hope it does to you:

Ephesians 3:16-19  I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God.


  1. I continue to pray for Hazel and your family. That God places his hand on Hazel and helps pull this decease out of her little body and gives you all back a normal life. It's wonderful you were ale to be with the other children to have some kind of normal carving pumpkins and riding bikes. You two are very special parents and have so much strength to keep it together. As I have said, I have dealt with my son's ride in the roller coaster of life. It is very challenging but you are doing it. God Bless you all. ~Joyce~

  2. you touch my heart every time and with every single word. I wish all the best for you and I alway pray for your little Hazel.

  3. I pray for you everyday and hope that you find answers soon. I cannot imagine what you are going through watching your sweet Hazel go through so much pain.

  4. Every time I read your updates I feel so touched, I feel my chest so tight, sorta heavy. I wish I can heal Hazel, I can't wait when your updates are about Hazel getting ready to play outside with her siblings with cute pictures of her with her beautiful smile. I pray that your sweet angel gets better QUICK and you get the strength to continue to care and love her in this time.

  5. I am definitely praying for you and Hazel for strength in the inner man as the Apostle Paul stated in the book of Ephesians. I can't imagine how hard this must be for you, but I thank God for your faithfulness in Christ and for his faithfulness. He died upon Calvary's cross, so we could be saved and be in heaven with him for eternity. Never lose sight of the cross. Give Hazel kisses for me.

  6. I am so happy to hear that Hazel is feeling better and that you were able to return home for some happy memories with your other children!! Don't distress over Hazel's setbacks, as we are all praying and Hazel is moving in the right direction. I feel certain that this must be attributed to side effects. I am sending her all my strength today, and I hope that her mouth starts feeling good enough to eat, which I am sure will make her feel so much better! Stay strong mom, your faith is amazing--keep clinging to it! From here on out, only good things and a complete healing for Hazel! In Jesus' name.

  7. Well, this too, shall pass. I'm sorry for these new setbacks, but it will all work out. I'm sorry she's in so much pain. We are awaiting more good news from you. All our love Susie and Arla.

  8. Thank you, and thank God!!!! Your strength in Christ is inspiring to say the least. My prayers of discernment are with the doctors, and prayers of complete healing with your daughter. She is a beautiful child of God... God bless each of you!!!!!!

  9. You are an amazing woman, your faith inspire me and give me strenght in many ways. Praying for Hazelnut, praying for you and for your family.

  10. You are an amazing mother and woman. As a mother myself I can understand the strength and faith that's necessary to get through this very trying time. I hope that Hazel continues to do well and pushes through these difficult medical setbacks. Wishing you all the love and support I can give!

  11. Prayers have never stopped for Hazel, and I will send on to many other Prayer warriors when I finish this note. We know that GOD is so big and He can accomplish anything. Nothing too big or too small for our God. So, as you meet this "current hurdle" on the road to recovery for Hazel, He will show the doctors a way to have Hazel leap over it. Hazel has been blessed with a spirit of fortitude and joy....and she will win this major fight in time while holding onto God's mighty hands. May God continue to uphold you with His righteous hand and may His wisdom impart the knowledge of those in attendance concerning Hazel's treatment and care.

    Blessings, Love and Peace,

  12. I also pray for her. I love you baby! Dont worry god will help us.. :)