Saturday, July 26, 2014

Results Are In Again...

     On Wednesday night I received the email from our little Hazelnut's oncologist that we were anxiously waiting for. I was afraid to open it, fearing the worst but hoping for the best. If Hazel's scans were to come back positive, then we would have to begin a journey into the world of Relapsed/Refractory Neuroblastoma, for which there is no known cure.  If Hazel's scans were to come back negative (or clear), then our daughter's body will have been off of treatment and still able to remain cancer free!  Dr. Tran's email was extremely simple and to the point.  All it said was this:  Hazelnut's scans are COMPLETELY NEGATIVE! (The words are exact, but I added the all caps and bold face letters for good measure!)
     To say that we are elated and relieved is a gross understatement, but honestly there are no words adequate enough to express what Aaron and I are feeling.  All I can do is praise our Father in heaven for His faithfulness is continuing to heal our daughter and for giving us each blessed day with her!!  Receiving this gift from Him is all that I could have ever hoped for and has given us a small sense of closure now that her voyage through treatment is now complete (she took her very last Accutane pill on Tuesday!!). 
     With the gift of clear scans has also come another wonderful blessing.  While undergoing her bone marrow biopsy and aspirate procedures yesterday afternoon (which we are still waiting on results, but are hopeful they will also be clear), the doctors also removed the central line from Hazel's chest!!!  We were told that if her scans came back clear they would do this for us because she has never had disease in her bone marrow and were confident that this would continue to be the case and felt comfortable enough to remove them.  The picture above was taken Thursday night, right after flushing her line for the very last time.  Flushing her line is something we have done each and every day since April of 2013 and I truly can't believe we don't have to do it anymore!  The drawers of medical supplies that I have stored in our bedroom can be packed away.  Fear of a life threatening infection developing in her line is now gone.  I no longer need an emergency kit in my purse and diaper bag. If she spends the night at a family member's home, I do not have to worry about her line's safety.  She never has to experience the excruciating pain of weekly dressing changes. And in two weeks, my baby girl can finally go swimming!!!!!!!  My eyes are filling with tears of joy and absolute relief that this tube is no longer a part of my daughter's body, and when I saw it for the first time Hazel said to me, "Do you have happy tears Momma?!"  Since I had to be home with the baby, Aaron took Hazel to this momentous procedure.  He said that when she awoke after the surgery, she looked down and her eyes also filled with tears, a grin spread across her face and she said "I have no more line!  I can splash in the cool!" (this is what she calls a swimming pool).  He said it was one of the most precious things he had ever seen.  I am sure, in some ways, she will experience a sense of loss because this line has been a part of her for a year and a half, but she recognizes how utterly magnificent it is now that it is gone.
     Now I sit here, before all of my children are awake, and I am trying to wrap my mind around the fact that our family is OFFICIALLY done with every last bit of treatment required for neuroblastoma.  As happy as I am, I have found myself experiencing some difficult emotions leading up to this moment.  We have been winding down to this for some weeks now, and life without constant hospital visits, daily injections and medications, fear of germs causing a life threatening infections and much more has actually been a bit unsettling for me.  Strangely, our family has grown accustomed to this crazy lifestyle, and upon this journey's end, we have to readjust.  Readjust to a life of normalcy where I have constantly been feeling like I am forgetting something.  A life where instead of taking care of one child, I am back as a mother of five children.  A life where instead of relying on so many others to help fulfill our daily needs, like cooking dinner, doing laundry and even scooping dog poop, I must fulfill these roles again and begin to delegate and organize our families' needs once again.  I found that I have forgotten how to manage so many of these things over this last year and a half, and there is some anxiety related to this readjustment period, so please keep us in your prayers.  Another thing I have been feeling is a sense of loss now that we are facing the end of treatment.  The friends and family we have gained at Children's Hospital Los Angeles have all made such an impact on our lives and the fact that I will no longer be seeing them on a regular basis is actually very difficult for me.  It's like moving away from a favorite neighborhood, or transferring away from a school or job that you love.  And although I will not miss the treatment and watching my daughter struggle through it, I will miss walking the halls of the hospital and all of the people we have met in them.  Of course we have plans to return for visits and plans to continue to support the oncology program, so thankfully, I do know that these halls are not gone forever.  
     Thank you all so much for your continued to support throughout this trying time for our family, and I ask that you think of us as we navigate through these next years.  I look forward to the future blessings we will be able to share with you, I can't wait for the day we reach 5 years NED and we can finally say Hazel is in remission!

28 comments:

  1. All I can think to say is ALL Praise to our amazing Saviour and Lord, Hallelujah!!! We celebrate with you and continue to hold your precious family in our prayers. Love from KL xx

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  2. Glory to God! My heart is full if gratitude today. Thank you for sharing this wonderful news. We love you Hazel!!
    The Kelly Family, Fairfax VA

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  3. Wonderful news and answer to prayer. Our God is indeed an awesome God. Will continue to pray for your family as you adjust to a new normal.

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  4. YOU MADE MY DAY, I am beyond excited for you! All of you, thank-you for taking the time to write this. We love you all, Hazel you're so beautiful and you've come a lll way baby. Always in my payers.

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  5. Faith and Trust in Him has brought you to where you are today. May God continue to bless you and your family.
    He is an Amazing God!

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  6. I'm so happy to hear this news! Keep smiling Hazel! My prayers Will keep coming your way!

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  7. We REJOICE & CELEBRATE with you! "Let everyone sing, together we sing, GREAT is the LORD GOD ALMIGHTY." He will walk through your new life & changes with you. Tom & Erin Dykman

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  8. OMG this is wonderful news for your entire family! Thank you for sharing. <3 hugs to little Hazel

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  9. So delighted to hear this! God is Good all the time!

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  10. I have tears of gratitude to God for you and this wonderful news!!! God Bless your family!
    Kathy Dudley

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  11. I'm so excited for your family and for Hazel's continued journey. Your words inspire me to appreciate every little moment and remember to support those in need. I'll always continue to think of you and your family.

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  12. off treatment is harder than on, sometimes. my daughter ended chemo in april for a BT and now we are just waiting for each scan for it to be stable <3 the safety net is gone and anxiousness sets in.

    but its GOOD NEWS, right?! happy awesome scan day, hazel!

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  13. I too was worried to read the "News" today on the blog. I have followed Hazelnut for quite sometime now, Meeting Hazel through following Little Miss Lilly Bumpus. It never ceases to amaze me how strong these little ones are, It's truly AMAZING. As an adult, I have a chronic healthcare issue, And there are days where I certainly don't feel my best, BUT....On those days, I jump online, Look at my newsfeed for updates on Lilly, Hazelnut, Mateo, Zein and several others, And I suddenly realize I don't feel as bad as I THOUGHT. The courage of these little ones, Just blows my mind. I know in time that one if not SEVERAL of these little kiddos will go on to be nurses, Drs. or even Cancer Scientist because they KNOW what it's like, They have "Been there done that, And DON'T Wanna Go BACK!!!" To think that Hazelnut woke up from her surgery, Looked down at her chest, And said "My line is GONE, I can splash in the Pool" is just priceless, Something so many take for granted, Is something that Hazel and so many other little ones have to FIGHT daily for. Hazel, I am SO HAPPY that you have come to the END Of your treatment, And I will be right there with you in 5 years, 1 year after Lilly will "OFFICIALLY" be in Remission, And then you will be too. And although I was saddened to hear about Zein and his relapse of Neuroblastoma, I KNOW that he is a True FIGHTER, A Real Warrior and has parents, and a Precious sister, that will stand alongside of him each and everyday to BEAT THIS NEUROBLASTOMA BEAST DOWN once and for all.

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  14. Such wonderful WONDERFUL news! I'm so happy that God is blessing your beautiful daughter with good health once again. I'll keep little Hazel in my prayers and ask that cancer is gone forever. (y)

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  15. Praise God From Whom All Blessings Flow! I am so happy to hear this wonderful news. I pray for you and your family as you readjust to "normal" life and ask Him to continue protect and keep Hazel healthy and cancer free.

    God Bless,

    Janet

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  16. Congratulations Hazel and family! Thank you for allowing us to support you during this incredibly difficult journey. What a great gift to know that the scans came back negative. I know for the next 5 years you will hold your breath during each and every scan as we did with our son after his treatments ended for stage 4 cancer. But we know that no matter, what God is with us carrying us through. Thank you for allowing Here to Serve be with you and your family for this journey, it was an honor and blessing to be there. God Bless, Katie Quintas Here to Serve

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  17. Marilyn SchillerJuly 26, 2014 at 2:25 PM

    Praise God and Mazel Tov !! Please keep us posted as Hazel develops through life !!!

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  18. God bless Hazel and all of you. You have been faithful when it may have been difficult. What a wonderful gift you've been given. God must have a special plan for her life---she's meant to do great things. This is such awesome news. SO VERY THANKFUL WITH YOU AND HAPPY FOR YOU! :-D

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  19. Thank You Dear Jesus.

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  20. Praise God, Praise God, Praise God Almighty!!!

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  21. I don't typically write any comments but I have kept Hazel (and all of you) in my prayers since I started following your blog quite some time ago; but today I couldn't help myself.......I AM SOOOOOOO HAPPY FOR HAZEL, FOR YOU AS HER MOM, AND FOR THE REST OF YOUR FAMILY! GOD BLESS THAT LITTLE ANGEL; SHE'S SURE A FIGHTER AND SHE KICKED CANCER'S @$$!

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  22. ABSOLUTELY wonderful news. (That deserves all caps.) A friend led me to Hazel's story. For the past 14 years I've been working with the online organization "Love Quilts". We give hand-cross-stitched quilts to children with life-altering illnesses. We would love to send Hazel a quilt. Please take a moment to check out our webpage and photo site so that you can see that we are legit and sincere. You can email me at Jackie4LQ@gmail.com or follow links provided on our webpage to contact us. I hope you'll allow us to do this for Hazel. Here are the links: http://lovequilts2macs.homestead.com/LQHomepage.html and http://public.fotki.com/LOVEQUILTS/.

    Jackie Bennett

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  23. oh how happy i am to read this, god bless your family and precious Hazelnut, our prayers arem now answered ans thank you for sharing
    marie xo

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  24. I have only been following your blog for a couple of months but wanted to sing praise for this wonderful news. What a merciful, wonderful Savior and Healer. I will pray that your anxiety would cease, and that you would find joy and peace in your journey.

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