Tuesday, January 17, 2017

Hope

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    As many of you likely saw on Facebook, our little Hazelnut spiked a fever and we were admitted to the hospital last Wednesday evening. This has become a usual pattern with this new treatment, making it very difficult for our family to feel any sense of routine. Thankfully, and I believe because of all of your prayers and support, Hazel felt better than any other visit!  Although she did end up contracting C-DIFF once again, she has been powering through and her spirits remain high.  She has done so well, in fact, that her counts began to recover faster than ever and we were actually discharged yesterday evening!!! Now we are home, helping her continue to recover, and we start her next round of chemo on January 30th.  After this upcoming roound, she will repeat her scans to see if this treatment, and all of the integrative therapies we do at home, continue to shrink these tumors! Tentatively, these scans are slated to happen around February 21st or 22nd.
     



     Now, I do not think it is an accident that our dear girl did better than any other round after receiving our recent hopeful news with the last scans.  I have come to realize that HOPE has played, and continues to play an extremely important and pivotal role in Hazel's journey on this arduous road. And to be honest, HOPE is something I have had a difficult time holding onto since her relapse.
     
     I want to take this opportunity to be totally transparent with you.  If I choose not to be, I do Hazel, and every other family like ours, an extreme disservice. These children, who are fighting for their lives every day, receiving treatment that is far too toxic for their little bodies, and only get a measly 4% of our national cancer budget, have earned the right for me, and everyone else for that matter, to be completely and wholly honest with the world.
     
     Throughout our fight with childhood cancer, I have had to figure out how to manage a lifelong involvment with depression. Through faith, and HOPE, I was able to manage it fairly well throughout Hazel's first fight with cancer, only having some small dips in the road, but it still being ever-present.  Toward the end of treatment and continuing through her 2 1/2 years of clear scans, PTSD reared its ugly head and exacerbated the already underlying depression.
     
     While I should have been at my most joyful, my most thankful, my most hopeful; I had times where I struggled to get out of bed in the morning. And the fear of cancer coming back and tearing my daughter, my family and myself apart once more, was something so palpable, I could hold it in my hands and feel it's effect wash over me like a tidal wave.
     
     I found that giving back to the world of childhood cancer became my purpose, my passion, my therapy. It helped to be able to pull up my boot straps and give cancer a tangible kick in the face by making the world aware of it's hideousness and by raising money to help annihilate it, once and for all.
  
     When Hazel's cancer returned, I was not prepared (but really, who is?)

     I walked into those routine scans, with a smidge of confidence for the very first time.

     Hazel was stronger and healthier than ever!

     Those scans must have been someone else's.

     Hazel was 2 1/2 years in the clear, she had to still be clear!

     We had invited employees of St. Baldrick's to join us at our appointment to get the good news, and just filmed a video for them celebrating her milestone.

     Unfortunately, it was real. It was not a dream, but it was one of my very worst nightmares. 

     Hazel's cancer was, indeed, back again.

     I have been intimately aware of the realities of relapsed Neuroblastoma, losing many friends to it, and fighting it with all I had.  So when the news of her relapse became more real with each day, my hope and faith drifted farther and farther away, bottoming out to an all time low.

     Facing each treatment felt like I was being pulled deeper and deeper underwater, away from any sign of a rescue boat. The only thing that kept me from drowning was watching how unbelievably brave my daughter, the real champion in this fight, was being while fighting this beast a second time.  If she can do this, so can I.  But the reality of potentially losing my beautiful, precious baby girl to this monster has been inescapable.

     Hazel's follow up scans came during the first treatment we tried.  A treatment that was described to me as "the closest thing to a home run in the relapsed Neuroblastoma world". This treatment was the very first semblance of hope that I had since her relapse, so when the scans showed her tumors still progressing while on it, my very little hope was completely shattered.

     Switching gears to a therapy that was more targeted for Hazel seemed like the right, and even more hopeful thing to do, but instead of being filled with HOPE, I remained filled with trepidation.  I walked into those next set of scans, right before Christmas, hopeless, and begging God to just "show up". 

     Boy did He!  Not only was this treatment working, but our little Hazelnut's tumors showed a significant response!  Some are dying, some shrank more than 50%, and I finally felt like we had a fighting chance in this battle.  For the first time in months and months, I FELT MY HOPE RESTORED!

     This hope ripped a hole in the heavy, dark cloud above my head, and I finally felt the warmth of the sunshine fall upon my face. 

     I could take a deep breath without heaving.  

     I could hug my daughter without sobbing.

     I could answer the question "How are you?" with an honest "Pretty good!"

     So when I say I do not think it was an accident that Hazel recovered this round better than ever, I think it is because it is in direct correlation to me being filled with HOPE once again.  I think she could sense a renewed spirit within me, and she herself could be renewed.  And I wholeheartedly believe that God knew we all needed a little bit of HOPE, and time home together, and helped her body heal in this miraculous way.

     While I found some HOPE to finally hold onto, I still ask for you to pray for me. Pray that I may be helped in my unbelief and doubt. Pray that I can be open and willing to talk about my depression, so I can be led on a path to overcome it.  And pray, that despite all of these things, I can remain steadfast and strong for the one who needs me the most; my little Hazelnut. 

27 comments:

  1. I won't stop praying. Thank you so much for sharing.

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  2. May God bless you, little Hazel, and your whole family. I believe in miracles and I think your Little Hazelnut is a little miracle. You will get through this for you have the love of God who is a good God and all powerful. You also have all of us whom you don't even know praying for you and your little girl. Hang in there, you got this.

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  3. We continue to pray for all of you, Hazel yes, but the whole family too.

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  4. Prayers and love for you, Hazel and your whole family during this difficult time!

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  5. Im so happy to hear that the treatment is working , reading your story , your battle , your life ...i felt goose bumps come over me . The pain your family has endured and above all you have faith...you still have faith. I over you guys and im praying for your family everyday. Hazel you can do this keep the hope !xoxo

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  6. I am continuing to pray for your baby. I have,as well as family members, struggled with depression and anxiety all my life. May God continue to give you the strength to power through. Your baby is loved, prayed for and you are continually fighting for the best medicine can offer. I pray for healing. She is beautiful and brave like her momma.

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  7. Lauren your words are so meaningful and mindful. So good to hear there is progress and tumors are shrinking. Your awareness coupled with your ability to share that awareness will be your saving grace. I was in different circumstances but felt depressed and hopeless but also felt anger towards God. I lost faith. Don't ever loose your faith and hope because you will be dragged down into the depths of places no one should ever go...I know. Angels are all around you Lauren praying for you and Hazelnut. It's ok to pull the covers over your head and take a breather...or two. I love you, and am praying fervently for little Hazelnut,you,your husband, and all who are near and dear ....you are never alone.

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  8. You and Hazel are in my prayers daily. Praying for healing, strength, steadfast faith and peace.

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  9. I am not certain you remember Zoey and I. We met at an ALS a few years back. I had followed Hazel before that, after and continue to follow you all through this next chapter. Although Zoey was treated for leukemia, a different beast, there are still similar, undeniable, threads. The "how did we get here", the fear and uncertainty. The PTSD after. I managed to stay strong through her months in the NICCU, through her heart surgery, and stroke diagnosis and her seizure disorder and then through her cancer journey. I was confident. Posting " Praise You in the Storm" lyrics in her hospital room, through 8 months inpatient. But 2-4 months after she was finished, I crashed and burned. And 2 years after that, the same. I have battled severe anxiety nearly all my life and it seemed and often still seems, to have the upper hand on me. But I fight, because my girl, your girl, all their warrior friends, all the ones we lost, they never, ever gave up. I feel I owe them the very same. I read once that parents of children who have been diagnosed with cancer are in full PTSD mode, 2 weeks after diagnosis. 2 weeks. We try our best to cling to faith and hope, two words I actually had tattooed to my wrist the night before her release from her last round, and we grab onto those we love the most, and reach out to those perhaps that we just met but that have or are still walking the same road. My prayers are with you all as you continue to fight through each day, each moment, and may you feel the strength of others on those days you feel void of any yourself. Forward on with hope.

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  10. I'm praying for your sweet girl, I'm also praying for you!! May the Lord give you strength and peace and hope. Sending hugs your way.

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  11. Praying all the time for Hazel and your family!!! My heart sinks to my stomach when I see your post.. bracing for the news that I am about to read! Your living this day in and day out.. I have lived through your hell with 2 of my kids living in the hospital for 6 solid months bringing only 1 home! There is nothing in this world that can express or explain the pain "we" go through as parents that nobody or child should ever go through!! It's a journey that no person can understand until it happens to them!
    I pray pray for Hazel! I pray for you as well! You have our support beyond any words I can express to you! The fact childhood cancer has 4% funding makes me sick! We allll need to get this changed! I want to honor the children who have been affected and continue to be! My daughter passed away not from Cancer but something that has no cause. Doing this makes me feel in some way I can honor her as well.. to help other kids is my mission.. to be here for bereaved parents or just parents living this insane heart wrenching journey.
    My heart goes out to you!

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  12. Depression is such a common illness but the reality is so many people who suffer depression try to hide it which I think can potentially make things worse. We don't shy away from having a broken leg so people should not shy away from depression or any other mental illness. It involves the brain and the brain can hurt and become ill too just like a leg or an arm. By talking about our problems to people can help enormously. Strangers are particularly good to bounce ideas off and share your story because sometimes talking about such issues with friends you can feel ashamed and scared you may lose them but with strangers it is different. Many people who follow Hazel and indeed you and your family probably also suffer from depression so there are many people who you can bounce ideas off or even just have those who share their stories of depression which can make you feel not alone. Their is no shame. I am not aware why you have PTSD but remember you are not alone and we all go through difficulties in life but by opening up and feeling comfortable about talking about those past experiences and difficulties can take a huge weight off your shoulders. When you are ready we are here to listen and offer any support you may need to keep you on solid ground. Remember you are not alone just look at the support Hazel has from strangers across the globe. God has rounded us all up and brought us to you because you need us in this time. We are here for a reason it is no coincidence.

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  13. God Bless you and keep you .....so many people help to carry you and hold hope in their heart not only for Hazel but for you and your entire family! Prayers for you always dear woman

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  14. I'm continuing to pray for you and your family. Hope is helping to keep you strong and so will prayers. Your beautiful daughter is so inspiring,a face of Hope for a cure.

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  15. St. Baldrick's FamiliesJanuary 18, 2017 at 7:42 AM

    Oh Lauren, your friends at St. Baldrick's are sending you every single hug! You are brave, and your transparency about the feelings you faced after Hazel's first fight and now in light of her relapse is important because it is honest. Cancer affects the whole family. Hazel is bearing the brunt of this burden, so your mama heart is sad sometimes. God bless Hazel and your heart. May you have peace, and always always HOPE!

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  16. I'm so happy to read that Hazel is doing so well!*hugs* I will continue to hang on to Hope for Hazel's tumors to continue shrinking! For her treatment to go well and for her scans to bring good news!

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  17. Beautiful. Love you, friend. Keep writing!

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  18. Prayers going up, for you, Lauren, and for Hazelnut!

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  19. Here is a verse for you Lauren and my prayer for you as well, 1 Corinthians 15:58 Therefore, my beloved brethren, be ye stedfast, unmovable, always abounding in the work of the Lord, forasmuch as ye know that your labour is not in vain in the Lord. I hope this verse can lift you up in your time of trial. Praying for your family, Hazel, and all involved in her care.

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  20. I have prayed for all of you and I will pray extra for you, Lauren...it's so hard to find any balance with what you all are going through. I hope our prayers can help you a little to find some.

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  21. May God Bless your family and your amazing Hazelnut. Continued prayers for complete recovery.

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  22. you are indeed a very strong exceptional women a shining light to so many people especially your family will keep the prayers coming

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  23. Love and wishes from India. We feel your pain and anxiety and we wish for good news regarding your beautiful Hazel. You have been incredibly strong.

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  24. Just read all this, this morning. Simi is my hometown, grew up there...so this hits home. I would love to send something from AZ...anything for little Hazelnut, so let us know and it's on the way!! bcoons@cableone.net

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  25. Oh Lauren! This truly brought tears to my eyes as a mother. You are strong and your family needs you to be. Hazel and your family continues to be a part of my prayers. Continue to trust in the Lord! He has bigger plans for precious Hazel!

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