Tuesday, October 15, 2013

In The Thick Of It

*** DAY +6  POST TRANSPLANT**
     The day that I have been dreading has arrived.  Our little Hazelnut is miserable.  Her blood counts are down to nothing, and we are just waiting for them to rise.  The mucositis has produced such painful sores that have traveled through her digestive track.  And it also produces an excess of thick mucous that continues to make her gag and eventually vomit.  Thankfully, she is no longer nauseous, but she still hasn't eaten for days.  We are also battling a fever that has reached up to 103, but it has been extremely difficult for her to take the oral dose of Tylenol she needs.  It is so painful for her.  I asked if there is an IV form available and the doctor told me that there is, but it's very expensive so they avoid it at all cost.  So they torture kids to inject medications that cause them extreme amounts of pain to save a buck (can you tell this bothers me a little?).  In addition to the normal hydration flowing in through her central line, she is now on IV nutrition, a cocktail of different antibiotics to combat a possible infection that the fever may be indicating, anti-nausea meds, benadryl to prevent an allergic reaction to one of the antibiotics and a continuos pump of morphine, which has finally allowed her to rest a comfortably as possible.  She is no longer crying out in pain with the help from the morphine, but she is obviously quite unwell.  She has spent the last two days laying in bed, drifting in and out of sleep and is barely speaking because it hurts too much.  Needless to say, these last couple of days have been extremely difficult.
     But, in true Hazel fashion, she is amazing me with her ability to cope and adapt to such a terrible situation.  She still finds things to smile at, and allows all of us to poke and prod her because, ultimately, she knows we are trying to do what we can to help her.  She has been able to communicate very well to me and tells me when there is something that she needs.  The doctors say for the kind of pain she is most likely in, she is doing extremely well and that it should hopefully only last for a few more days.  WE CAN DO THIS! OUR GOD CAN CARRY US THROUGH!
     I am so thankful for all of your prayers and have received many messages with bible verses to encourage me during this time; and it has helped so much. I feel lifted up by your prayers and God has kept me from falling into the darkness of despair.  Without Him and without you, I know I could not be getting through this as well as I am.  So please, keep them coming!

Deuteronomy 33:26-27  "There is none like God, O Jeshurun, who rides through the heavens to your help, through the skies in his majesty. The eternal God is your dwelling place, and underneath are the everlasting arms."    

29 comments:

  1. Oh my, I didn't realize that reading your post would bring back memories. My heart goes out to your little Hazelnut and you and your family! Just know that I'm praying with all I've got for her not to have to go through much more and that God will heal her body of this dreaded disease. It's so not fair!!! But we trust in a Soverign God and He is good and He is might and He CAN and WILL HEAL your little Hazelnut!!!! My heart and positive thoughts and prayers go out to you!!!! Thank you so much for the update!!!! Please KNOW that you are special, Please KNOW that you are LOVED, Please KNOW that Hazelnut is HEALING as we speak! Keep us posted!!!!

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  2. I am praying for your precious Angel, your blessing, your gift from God, to lay his hand on you and especially her to bring you comfort during this trying time. Be strong precious Hazelnut! God be with you! Love your friend and sister in Christ Kim

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  3. My heart goes out to you, both! Here is a scripture that has helped me a lot in times of distress:
    Isaiah 41:10
    Do not be afraid, for I am with you,
    Do not be anxious, for I am your God
    I will fortify you, yes, I will help you.
    I will really hold on to you with my right hand of righteousness.

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  4. I am so sorry to hear about the pain she is in. For what it's worth, I was on morphine for my pain. It doesn't make you [high] or make you feel goofy. She's aware of what's going on, but is comfortable. Thank God she has such wonderful parents and you are aware of all the things she needs. She's one awesome little lady! God has plans for your little angel.
    THE PERFECT PRAYER
    The perfect prayer isn't the most poetic. Volume, eloquence, and proper grammar play no part in its power . The perfect prayer may not contain words at all. A sigh, a groan, a tear - they can all be prayers. Any praise or plea, directed at GOD from a sincere heart, is perfect in his eyes. The answers we receive may look completely different from those we had in mind, but we can trust that GOD'S answer, like our heartfelt prayers, are perfect.

    Debbie Graham
    Louisville, ky

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  5. My heart goes out to Lil Hazelmonkey...:( I hope this passes sooo quickly -- I'm so selfish -- so we can see her super sweet, adorable smile again...

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  6. I have been thinking about you all so much this past week or so knowing that the this treatment was coming. I am so sorry you have to see your little girl go through this battle. Thank you for the update and for continuously updating all of us from Hazel's cheering squad on what is going on. Know that in these invisible bleachers, there are thousands of us keeping you all in our hearts and thoughts.

    Hugs, love, and light coming at you from Seattle, WA! <3

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  7. Ur family is in are prayers she is such a strong happy lil girl I just became a follow.er and in every pic she was smiling hope she get to feeling better

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  8. May this be just a brief moment in time of her incredibly long life she will have once she is through with her treatment. My heart goes out to her and to you as a mom. God bless your little angel, I hope she feels better soon.

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  9. oh sweet baby girl! declaring healing over those painful sores in Jesus name! About the Tylenol, would she be able to take the suppository form called FeverAll?

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    1. I was going to suggest this as well. My niece vomits very easily. Sometimes just at the smell of medicine and they give her a suppository.

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  10. I have been following little Hazel's journey for some time and have never seen such a bright and happy child going thru so much pain and discomfort. It is so much harder to see such a little person going thru so much. God will bless Hazel, her family and the doctors. I can't even imagine how hard it must be on the rest of the family. Stay strong and keep the faith. I will be waiting to see that big smile of Hazels again.

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  11. What an amazing beautiful young lady you have there. Good will carry you both! Joshua 1:9

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  12. keeping lil hazel and your family in our thoughts and prayers and god bless that lil baby to get well lots of hugs and kisses baby girl

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  13. Sweet Hazel. You and your family are loved by so many people and millions of prayers are coming your way every minute of every day. Feel will soon so we can see your beautiful smiling face again soon. 😀

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  14. Nahum 1:7
    The Lord is good, a strong hold in the day of trouble; and he knoweth them that trust in him.
    Keeping the prayers going for Hazelnut and your family. Trusting in the power of his healing touch!
    Received the picture today of Hazel. Now every time I see it I will whisper another prayer. Hugs to You and Hazel!

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  15. We lift you up in prayer to the throne room of God. Peace be with you. Love,The Adkins Family

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  16. I will be praying for your Hazel. My 19-year-old daughter underwent a stem cell transplant on 4/5 of this year. What you are saying takes me back to the days of the mucositis. My Lauren is a miracle of God. He brought her thru this and He will bring your daughter thru this as well. I will continue to pray for Hazel and your family.

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  17. we are praying for you guys and hazel right now...cristina and hope!

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  18. Breaks my heart that your little girl has to suffer because the hospital wants to save a buck!!! I bet if it was one of the doctors or nurses they would get it in a second. They should not make a sweet little girl suffer because of the cost. My prayers are with Hazel and the whole family.

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  19. Sending you many, many prayers! Hazel's strength and beautiful smile always amaze me! Give her an extra hug for me.

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  20. God bless you all. I pray His peace surrounds you daily.

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  21. I am so very sorry my prayers are with y'all <3

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  22. PRAYING!!! GOD IS GOOD!!! KEEP THE FAITH!!!

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  23. So much love for your precious little girl from our family to yours. XOXOXOXO from Colorado!!

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  24. Praying for your sweet baby girl. God speed.

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  25. Geez, poor little Hazelnut. We will count the hours together until she starts feeling better. It can come at any moment and then you can breath fully again. She's a trooper from heaven. Will be waiting for your good news. Susie

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  26. I'm so sorry about this! The poor little girl. Just curious, do you have insurance to cover all costs? I was hospitalized this summer for surgery and they had me on IV Tylenol for a bit. It was covered under my insurance as far as I know. None of the doctors or nurses every hesitated to give it to me. I'd been on such a high dose of morphine when I arrived that they wanted me on something that wasn't as strong.
    I hope things improve soon!

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  27. I have seen the wicked in great power, and spreading himself like a green bay tree. Yet he passed away, and lo, he was not, yea, I sought him but he could not be found Psalm 37 :35+36 This is what will happen to this sickness that is affecting your sweet Hazel....it will pass away and be no more. God will make her strong and healthy again. Prayers for you all and sending you love

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  28. Praying hard for you! So glad the Lord is holding you up through this difficult time with encouragement from others and His Word. He is caring for you and loves you very much.
    Blessings,
    Janis

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