Thursday, March 13, 2014

Tough Week

     As expected, our little Hazelnut has had a very tough week.  The combination of these two infusions has caused her so much discomfort, and it is difficult to see her spirits so low.  She has been battling pain, extremely high fevers, hives and itchiness, swelling, breathing problems, constipation, fatigue and a plethora of issues with her labs.  In addition to the continuous pain medication, she is also taking Tylenol (for pain and fevers), Benadryl & Atarax (for the allergic reactions), antibiotics (to prevent infections), albumin (to help with her blood volume) and has needed extra potassium and fluids.  Also, due to her breathing problems, Hazel had to have three separate breathing treatments; but God has answered my prayers on this issue and she has not had any breathing issues yesterday or today!  In addition, her fevers have come down!





     Today also came with another hiccup.  Due to Hazel retaining fluid and not being able to excrete enough urine, she has gained some weight and her kidneys are taking a hit.  Her kidneys were already damaged during her ICU stay, and my assumption is that they have not yet returned to good function, and because of that, her creatinine levels have skyrocketed.  They are TEN TIMES the amount they are allowed to be while on this Immunotherapy clinical trial.  Based on the information we have, it is generally the IL-2 infusion that will cause this side-effect, so it was stopped a few hours ago.  Unfortunately, it is ideal to receive every last drop of this treatment for efficacy, so we are all a bit disappointed.  However, she only had about 12-15 hours to go on the infusion, so she already received the majority.  The doctors are not sure how this will effect her long term success and are going to take the next few days or weeks to figure out a game plan for what to do when she has to receive IL-2 again (which is during Cycle #4).  She is still safely able to continue the Chimeric infusion, which will definitely work in her favor, and that comes down tonight, so we are almost done!  Please pray, however, that she can urinate enough tonight and tomorrow morning so her creatinine and weight both come down.  If they do not, she will most likely have to remain in the hospital until it resolves.
     A few days ago, I was reading a book that discussed the bible verse 2 Corinthians 12:9 " My grace is sufficient for you".  The author, Charles H. Spurgeon (language revised and updated by Alistair Begg) wrote something that really spoke to my heart.  He says "If none of God's saints were poor and tired, we should not know half so well the consolations of divine grace...God's grace is illustrated and magnified in the trials of believers. They bear up under every discouragement, believing all things work together for their good, and that out of apparent evils a real blessing shall ultimately spring--that their God will either work a deliverance for them speedily or most assuredly support them in their trouble...The masterworks of God are those who stand in the midst of difficulties steadfast, unmovable...If, then, yours is a much tried path, rejoice in it, because you will be better able to display the all-sufficient grace of God.  As for His failing you, never dream of it...The god who has been sufficient until now should be trusted to the end"!


36 comments:

  1. Your sweet Hazel remains in my prayers~ May blessings of God's precious and glorious Grace be powerful in your journey!

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  2. I can't get enough of this little girl.

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  3. Prayers from Boston always!!

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  4. forever in my prayers.. .that last part really touched me.. you're a fantastic mother and person.

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  5. Hazel is truly an inspiring fighter. She is so blessed to have such a loving family. My prayers have never stopped and will continue on. God is carrying all of you through the sand in His loving embrace. Thank you for sharing with us. I have never had the pleasure of meeting you personally, but your strength is awe-inspiring.

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  6. I'm praying for our sweet little angel. Thank you for sharing her with us. It is such an honor.

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  7. Oh you poor little soul. Little Hazel you have gone through so much! I'm praying for you Hazel. I hope God heals your sick little body. Your strength is amazing. I hope God gives you and your family a miracle. You are good people and deserve it. God bless!

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  8. Lord, mercy and healing for Hazel and glory to You.

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  9. Praying for you Hazel! Hang in there. My good energy is coming your way!

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  10. Let every evil mountain hear the voice of the Lord and be removed (Mic.6:2) Let the mountains tremble at the presence of God (Hab.3:10) Put forth your Hand, O Lord and overturn the mountains by the roots (Job28:9) We speak to every mountain of illness to be removed and cast into the sea. Lord, you are against every destroying mountain (Jer.51:25) Let the mountains melt at Your presence, O God (Judg. 5:5) Make waste the evil mountains in this child's life, O Lord (Isa. 42:15) Every mountain in her way will become a plain(Zech.4:7)

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  11. hi baby girl!! i am praying for you!

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  12. My prayers go out for our Hazelnut and her family. Hugz

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  13. prayers go out to you all during these trials. You are so right, GOD is amazing and is by our side always. hugs

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  14. prayers go out to you all during these trials. You are so right, GOD is amazing and is by our side always. hugs

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  15. Prayers for one tough little nut, from Toronto Canada

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  16. Our prayers go up not only for Hazel, but for you as well. For you we pray especially God's guidance so you make the best decisions regarding Hazel's care and for His peace and comfort.

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  17. Continued prayers

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  18. Praying for little Hazelnut. May God wrap his arms around her and heal her.

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  19. I am so sorry that Hazel is having such a tough time of it. My daughter endured immunotherapy a year ago for stage 4 neuroblastoma, cbridge:avacrowley. It is certainly a tested time. Thank you so much for sharing the passage. I believe every word of it, have lived it. God bless you all.

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  20. Always praying for your sweet family. I'm sorry that Hazel has suffered and I hope the light is at the end of the tunnel.

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  21. May God ease her pain and heal her. Dear Lord, I pray you will wrap your loving arms around Hazel and her family. Sending love and prayers.

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  22. First let me say Thank you for your post about 2 Corinthians 12:9, that explains our trials and victories is such a great way.While reading, tears ran down my face. Thank you for encouraging others while you are in need of the same. Second, I woke up the other night around 4:51 and sat on my bed and prayed for Hazel, along with others who need a divine intervention from God. I am still believing for a complete healing for Hazel , God is still in the miracle business and I am so thankful he is!

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  23. an incredible scripture. continued prayers & love being sent your direction. may He bless you with comfort, guidance, wisdom and growth. <3

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  24. Prayers from France

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  25. Hazel has touched my heart so deeply. I keep praying for her many times a day. I know God will guard her and the whole family, and, soon, she'll be completely healed!
    Love and prayers from Brazil!

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    1. She is so very brave. Lots of love and est wishes to Hazel and her family x

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  26. Prayers from Maine. Have been praying every day since I found your facebook page.

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  27. Forever in my prayers. Thank-you for making the time to inform us of Little Hazel. She is such an amazing child and will win this battle. Look how far she come so far. May God Bless you all.

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  28. How much more are you putting this child through? The so called cure sounds worse than the disease. Let hazel enjoy life again.

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  29. Prayers for strength and recovery so that Hazel can get back home with her family and have fun again...praying for you in Bobcaygeon, Ontario

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  30. Dear Anonymous at 8:02 PM on March 14th, How is the view from the cheap seats? It is so much easier for you to pray for strength, or send loving positive thoughts to a sweet little girl fighting cancer than it is to put demeaning, hateful, useless, damaging, stinging negative comments, non? Here's news for you. I am going to pray that God will heal your heart to a place where you can understand and care for people and their feelings, and that God may show you the divine gift of empathy. I pray that you will never have to go through what this family has gone through, and that Hazel's good health in the end will make you realize that HOPE is always the best thing to carry in your heart, right next to the LOVE.

    Sweet Hazel, precious warrior princess, keep being strong and fighting your good fight!! You will win!! I am sending you love and all of my strength today, and I will continue to pray for you and hold you in my heart. And family, may you feel all the love and encouragement from all the strangers that keep you close in prayer. Thank you God for blessing this family with the miracle of life and with a wonderful new house to hold them all!! Much love to y'all!!

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  31. Hazel, when my little boy about your age, now a man, was watching our chickens peck around the yard and softly clucking and being happy chickens, Jeremy thought that they were missing arms. I used to think that our heavenly father needed arms too. But you know what? He has them. I am just a grandma that happened to see this wonderful caring piece about your discomfort and know how scary it must be. I am going to tell you that from afar I will cover you and your family with prayer. Prayer for healing and prayer for support, my love, and that God's arms will be so apparent. He has arms and you are in them. You and your family. Bless you little one. A grandma in Arizona.

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  32. Jasmina from SwedenMarch 17, 2014 at 12:00 AM

    Baby girl Hazel, you are so loved by many, all over the world...praying for you dear little girl, be strong
    always thinking of you

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