Monday, April 28, 2014

Emotional Roller Coaster

     I would like to take a moment to express our gratitude for how many of you rejoiced with our family last week when we received the wonderful news that Our Little Hazelnut is currently cancer free.  It is a wondrous thing to behold when we see the army of supporters who are behind us; joining in our sorrows and in our triumphs.  And to have seen all of ours and your prayers being answered in such an incredible way was absolutely miraculous!  Since receiving the news, our family has of course been celebrating and treasuring each moment we have together.  However, it has been a bit of an emotional roller coaster for Aaron and myself.  Many people, myself included, have always seen a "Cancer Free" declaration as a final step into victory.  Although it is certainly a victory for Hazel and our family, it is just the first in what we hope will be a very long line of victories over the next few years.  The reality of childhood cancer does not just disappear with this news, and Hazel still faces two very grueling inpatient treatments and many years of hear-wrenching scans.  In addition, Hazel's particular type of cancer (High-Risk Neuroblastoma) has a relapse rate of anywhere between 35-60%, and currently, there is no known cure for relapsing/refractory Neuroblastoma.  There have been many improvements in treatment in recent years that look very promising, and many children beat this monster for second, third and even seventh times.  So Aaron and I have realized and grappled with these truths, and have only been able to take a shallow, not deep, sigh of relief.  The next five years for Hazel are absolutely critical because this is the window that Neuroblastoma likes to show its face again, which is why she continues on with scans and tests for so long.  But once past that five-year mark, chances of relapse almost diminish and scans discontinue.  Another thing that we may also have to face are late-effects from her treatment.  Common late effects include, but are not limited to, learning issues, vision problems, hearing loss, growth and developmental delays, developmental problems, seizures, headaches and loss of function in certain organs.  So clearly, our battle is not yet over, and we will continue to rely on God's plans and promises and your prayers and support to get us through.  We know, and have seen that our God is a God of Miracles; and I whole-heartedly believe that all of these statistics mean NOTHING to Him!  We need to cling to these truths:

  • Deuteronomy 31:8  "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
  • Romans 15:13  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
  • Isaiah 40:31  "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

     As for now, Hazel and I just checked in at Children's Hospital Los Angeles for Cycle #4 of Immunotherapy.  This will be the same infusion as Cycle #2, where she will receive IL2 for four days, we return home for the weekend and come back Sunday evening to begin the infusion of IL2 & Chimeric combined for five additional days.  As many of you may remember, Hazel had a very difficult time with Cycle #2, so much so, that they even had to turn off the infusion of the IL2.  For this reason, her medical team has decided to run the IL2 at 50% it's normal amount/rate in the hopes that her kidneys do not take such an excruciating hit again.  So please pray that these next two weeks go much better than the last ones and that we may be reminded that He continues to have our little Hazelnut in His loving and healing hands!

25 comments:

  1. I am praying for little Hazel. Praise the Lord for his faithfulness and for your faith in Christ and his shed blood.

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  2. Always keeping Hazel and family in my prayers. I love this family. Prayers from Brazil

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  3. You can do it Hazelnut! Praying that this round of treatment is less strenuous and easier for you. I will continue to pray for continued NED results.

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  4. Praying for little Hazel Nut

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  5. Thankfully, you have God to take with you on this roller coaster. I pray that Hazel gets through this next round with as little complication as possible. I am so glad she claimed this victory! I will continue to pray for her strength as well as the families.

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  6. I will continue to keep Hazel and your family in my prayers

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  7. May God keep you ever in his loving hands and protect you from pain and discomfort. God grant this loving baby to heal....

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  8. I will continue praying for our little Hazelnut and your family. Praying that her next few treatments go wonderful and she tolerates it all.
    Kristy

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  9. Continued prayers for you guys, much love to your family

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  10. Hazel you are loved and prayed for. Your Mom and Dad are loved and prayed for. These next two weeks will be something you will sail through.

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  11. We pray for all of you EVERY night.

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  12. Hazel my prayers are with you and your family.

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  13. We pray Hazel will breeze through the next couple weeks and the next five years will be healthy and happy times as Hazel continues her fight for complete freedom of this neuroblastoma. You're always in my prayers. Please post how your entire family is doing. I pray for you all.

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  14. Tell her that when shes absolutely allright i will expect her to visit us in athens....swim...play in the sand....eat delicious greek food...stay up all night....i am a mom of 2,i pray for you and i admire u deeply.i am not rich(i live in greece-how could i?)but i mean it from the bottom of my heart...consider me and my family your friends.♡♡♡♡♡♡♡

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  15. Keeping her in our prayers all the way in South Africa xxx

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  16. My prayers are with her and her Family everyday God be with you Hazel

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  17. Lauren, hold tight to your faith always...our love and prayers continue for your family.

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  18. Rejoicing and will continue to pray for the road ahead of you. We know that whatever comes will be filtered through the Lord's Sovereign fingers of love and He will be with you and sustain you through His power and grace.

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  19. We will continue to lift your arms up in praise and prayer

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  20. Praying for you Hazel, always and never stoping, that I promise you. We love you

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  21. praying for u hazel hope this my help but u my want to try rick simpson oil aka cannabis oil

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  22. Prayer will continue! I have faith that Hazel will continue to be cancer free as she so greatly deserves! I'm currently writing an essay on neuroblastoma that was all inspired by beautiful Hazel. It all started with the news channel where all the pizza was delivered to the hospital. :) That brings joyful thoughts. XoXo

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  23. I will always pray for sweet, brave Hazel! I will be sending her all my strength during her next round of treatment, and hopefully, it will be much, much easier for her. Your whole family has been so faithful, strong and brave throughout Hazel's illness, and you just have to keep on being strong. Just know that there are so many people out here praying for you, and sending love. Try not to think too much about what can go wrong, and embrace everything that has gone right. I believe with all my heart that Hazel is going to have a complete healing! It may take five years to prove, but I have trust that it will happen!!

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  24. I just want to say hello from Germany. Our two year old son also has a high risk Neuroblastoma. He is also free of cancer since November 2013. You described it perfectly : only in five years we will be abled to take a deep breath and not only a shallow breath of relief. But our children are fighters, they will do it!

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