Tuesday, August 27, 2013

Recovery

      Our little Hazelnut is recovering better than I could have ever hoped!  The first few days were rough, but she has bounced back to being her adorable self.  God has just blessed my daughter with an unimaginable strength, which makes it so clear to me that it has been a gift from Him.  Dr. Bliss told us that the way she has been recovering is par for the course for our Hazel, but for most kids with this type of surgery, her body is way ahead of the game.  One of the biggest surprises we had was when she decided it was time to get up and walk.  When she told me she wanted to get out of bed, she was really nervous to do it, and quite frankly, so was I.  But, once she got her footing and began taking those first steps and realized that she would be okay, she took off and I couldn't keep up with her!  She continues to be in good spirits and is eager to tell everyone how Dr. Bliss got her Neuroblastoma out and to show off her "bigger scar"!  She has been doing so well, that the Chemo they were going to give her starting this weekend, they are actually going to start tonight, which means we may get to head home this weekend! 
     For those of you who do not know, Hazel's treatment plan is broken down into 3 Phases.  Phase I consists of 6 rounds of Chemotherapy and surgery.  Phase II consists of a round of high-dose Chemo coupled with a Stem Cell Rescue (which is like a Bone Marrow transplant without needing a donor, but instead harvesting her own bone marrow/stem cells in the beginning of treatment), and radiation.  Phase III consists of Immunotherapy treatment.  In total, this is about 18 months of treatment.  The chemo that she begins with tonight is the 6th round, and the very last round of Phase I!!!!!  I cannot believe we have made it this far and honestly could not see this day coming for a long time.  I am so unbelievably thankful for how our journey unfolded to get us to this point, given that she has done so well.  But I am also so glad that we do not ever have to go back!




     Another thing that has blown my mind is something that Aaron and I realized after Hazel's surgery while speaking with Dr. Bliss, her surgeon.  He informed us that the tumor that he removed from our daughter was somewhere around the size of a tennis ball.  This came as an absolute shock to me because this tumor has already shrunk more than 50%, and since her diagnosis, I have been under the impression that the original tumor was about the size of a lime.  Boy were we wrong!  Her original tumor was, in fact, about the size of a nerf football or small melon!  AHHHHHH!  How did I not know this?!  I saw her original scans; I spoke with all of the doctors; I knew what we were treating, but I had no idea a monster of this size was invading our little Hazelnut's body!  I truly believe that, somehow, God protected me from this information because I was in no way ready for it.  But now that it is out and we have almost completed this part of our fight, He allowed me to become aware of this travesty. Because I wanted to see it for myself, I went down to Medical Records and had all of her scans put on a CD for me.  When I opened her original MIBG scans, tears flooded my eyes.  I have included the image below, and hopefully you can see several images of a grey body/abdomen.  There is a bright white mass along this side of her abdomen, and that is the tumor!


     Who is as happy as I am to have that thing out of her?!!  Because that huge tumor is so aggressive and Neuroblastoma likes to hide out, we have to continue with aggressive treatment. The next step is her Stem Cell transplant, which will be in about 5-6 weeks from now. I look forward to spending this time at home as a family! Please keep us all in your prayers as we prepare for that arduous next step. And continue to think of Hazel as she goes through this last round of Chemo.  This is the toughest round, so please pray for her little body!

23 comments:

  1. You guys are awesome. Stay strong... continued prayers from our family to yours

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  2. She is such a fighter, and a really special child. Our Lord really has blessed her with loving caring parents - I'll continue to pray for her full recovery!

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  3. I just learned about your story on FB and I am amazed, impressed, astounded, wishful and hopeful for you and your family. Stay strong and know there are people thinking of you and sending positive vibes your way...

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  4. amazing, brought tears to my eyes. I say a prayer each night for little hazelnut and your family. kick that cancers butt!!

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  5. I knew Jerry and Christi sometime back in church. My family really enjoyed the pizza story on the news and this is how I found your blog. God is performing miracles in and through your family and we will continue to keep Hazel in our deepest prayers.

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  6. So much with tumors have come so far these days. Thanking God you have your baby back and she is doing so well. She has truly impressed me. I believe with your faith in God, he put his healing hands her and the surgeons. I watch this tory unfold and pray very hard for your family. Children are a gift, a loan from God. He really pick the best of the Best parents for Hazel. I am very pleased and have tears of joy for you all. Sure looking for the gorgeous picture of your family during the upcoming Holidays. Cancer free and care free as life for a child should be! God Bless you all. Joyce

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    1. I am very a where of what a neuroblastoma can do. I lived it with my son. You're fighters and this story warms my heart.

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    2. So sorry to know your son had it too... Hazel is a darling and a true fighter :) just like I bet your son is :)

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  7. I will be praying for her she is strong and a little fighter and will make it thru this and live a long life my prays r with guys

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  8. I will continue to pray! God is faithful, Nothing is impossible with God and Hazel is such a little fighter and an inspiration.

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  9. Heyyy !! So good to know she's doing so well and that Phase I is almost ending !! Just 2 more to go :) We'll keep praying for her all the time !! Keep us updated :)

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  10. I check your blog daily for updates. She is such a inspiration to me. Praying and thinking about ya'll. She is such a beauty!!!!

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  11. I too look for your updates, and in no way does this imply you are lacking in them. More of; I am so eager to hear the news that this little angel is doing as well as she is, she is incredible. Hazel is a remarkably powerful soul and an inspiration for the world! Thank you for providing insight to your experience for the encouragement it has given the world, particularly those in similar circumstances. Your family is very strong and by keeping a positive energy about the outcome, I believe this is a significant reason your journey has had a light shining around each corner. I think about Hazel daily and am grateful she is in the caring hands you, your husband and doctors provide because I know many wouldn't fare as well during this unimaginable, indescribable challenge without the support and love you provide.
    Sincerely,
    -Redditor

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  12. I am so happy to hear the news of Hazel are positive. Thank you for sharing your story and God Bless your family.

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  13. I received the T shirt in the mail and am wearing it just to remember our precious Hazel and continue to send my healing thoughts and loves.

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  14. Praising God for how quickly Hazel is recovering! It's amazing that the tumor was the size of a small melon. How could she even live with something that enormous in her? God has worked a miracle in Hazel's life and given her strength beyond what would be normal. Your family's love, also a gift from God and cultivated by each of you, plays a huge role in her recovery.
    Our family will continue to pray for Hazel and all of you in the days ahead!
    Blessings,
    Janis

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  15. I love seeing her walking around and smiling. She is always in my thoughts! Keep getting better Hazel!

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  16. Oh my goodness! Thank you God for your continuous grace and love that you've bestowed upon Hazel, and the strength that you've given her and her family. Praise you Lord.

    He has given her so many "gifts" --and certainly strength and endurance is one of many. Her beautiful soul is reflected in her smile and contagious laughter.

    Hazel, we love you. So many people are praying for you sweetie, and most especially, God loves you.

    And, to "mommy and daddy" and the rest of the family, you are all so blessed to have each other, and a great love of God to sustain and nourish you as you go through this insidious ordeal.

    Prayers will be heard, as they've been so many times before. And, remember God is with you all along. Keep looking up for all of your answers, for your strength, Peace and LOVE...

    God Bless you All, now and always~

    "And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful." (Colossians 3:15 KJV)

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  17. You and your little Hazel has been inspiration and encouragement to me. My 5 years old son had been battling on Hepatoblastoma (pediatric liver cancer) Stage 4 since December last year. He had liver transplant with my husband as the donor last July. He still has to do some post-transplant chemo which starts today. I feel it's hard sometimes to rely on God, but after reading your blogs, someone who has similar experience, I've been reminded to trust fully in Jesus. Thank you so much. I pray that God fully heal your baby Hazel. Lots of love from Japan.

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  18. Praying for Hazel, she is a true warrior. She is so strong ,she will win her fight. I admire her courage and your families courage. She is absolutely adorable.

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  19. So much to be thankful for this far...One day at a time! Thoughts and prayers are with you.

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  20. Dear Mam,

    As you have said yourself, God has blessed little Hazelnut will unbelievable strength, i have no doubt she will be smiling when the treatment is over.

    All the best and may there always be a smile on the sweet face of the angel and family....

    Very happy that the tumor is out...... :)

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