Thursday, January 23, 2014

Radiation and More

     First, I want to apologize for the lack of updates.  I know there are so many of you who have been praying for our family and would like to know how we have been doing, and for that I am so thankful.  I will assure you that the missing updates are NOT because our little Hazelnut has been unwell, but because of the exact opposite reason!  She has been feeling better than she has ever felt since last April and has been busy being a normal little girl and growing hair!  We have been going out and making memories as much as we have been able to; including drives to the beach, the Huntington Library, tons of family dinners, and many wonderful quiet evenings at home.  The best part is that our little Hazelnut finished her last day of radiation on the 10th, so we have had FULL days at home! Here is what a typical day at radiation looked like:
  • Hazel and I would wake up while it was still dark outside and drive to Children's Hospital every weekday to check in for radiation at 7:00 AM
  • While we waited for our appointment, a nurse would help me get her changed into a hospital gown, take her vital signs, connect her heart/respiratory monitors, attach her pulse oximeter and blood pressure cuff, and get her line ready for her sedation medication.
  • Once ready, we would head into the radiation check-in room.  On the computer screen was a picture of her face and a picture of her scans.  Each morning she would say "Those are my bones!" and the nurse would ask "Who is that cute little girl right there?" and Hazel would say, "That's Hazelnut!"

  • We would then walk into the room with the radiation machine, which she would call "The Tunnel Ride" and I would hold her in my arms as they administer the propofol and she would fall asleep on my shoulder.  Every morning she would say to me, "Is it time for me to go on the the tunnel ride and take a nice nap on your shoulder?"  She got used to the routine of it all and actually took comfort in it and get excited each morning.
  • Once asleep, they would lay her in a cushion that was shaped in the exact mold of her body.  It had lines on it that would match up to the lines they had drawn on her body.  This would ensure that she could be in the same position for radiation each and every time. 


  • Going under sedation every day is a risk, and of course I worried every time.  But one time, there was a mistake that was made and her pump that administered her propofol was put at the wrong setting.  This made her receive too much of the medication and it caused her to stop breathing!  They immediately began breathing for her with a bag and turned off the medication.  Once she awoke, she was breathing on her own and everything was okay.  But needless to say, they never made that mistake again! 
  • After laying her on the table, I would have to leave her and wait until they called me to tell she was in the recovery room, waking up. 
  •  I would arrive, and in true Hazelnut fashion, she was chatting up the room and making friends with everyone.  The first week or two, however, this was not the case.  When we first started radiation, she still was not talking or walking and was not trusting ANY medical professional.  She was very fearful and wanted nothing to do with radiation.  But as time went on, she fell in love with the staff there and enjoyed every minute of this new routine.  In fact, she would cry every time we had to leave!  The last day was bittersweet for all of us.  Knowing that we were finished with another phase of treatment was unbelievably exciting, but leaving all of our new friends and family was very difficult.  I will be forever grateful to all of them for not only helping my daughter get through this phase, but for making it so enjoyable that she was sad to see it go.



         Now this week and next are going to be full of anxiety for our family, and we will be needing all of your prayers.  These are the weeks where our little Hazelnut will be having a complete disease evaluation before beginning her last phase of treatment.  She will be having a CT Scan, an MIBG scan, a bone marrow biopsy (a small surgical procedure where they puncture both hip bones to take bone marrow samples), and blood work done.  We have been functioning in a sweet reality of having a daughter who is well, but after these scans, we will know whether or not her cancer is gone!  My prayer and my hope is that God has allowed the chemo and stem cell transplant that almost took her life in November to have done it's job and gotten rid of every last remnant of Neuroblastoma hiding in her body.  So please join our family in this prayer.  Following these scans, we will have a meeting with her oncologist to discuss results and to go through what to expect from Immunotherapy (the last phase of treatment).  So as soon as we know anything, we will of course let you know!
         One last update, which I think is the best update, is that our little Hazelnut will be having her 3rd birthday this Saturday, January 25th!  Back in April, and once again in November, we were unsure if we would all see this birthday.  But our wonderful and amazing Father has brought us through the fires to see such a glorious day of celebration.  We are having a small family dinner to express our gratitude for being able to actually be together on this day.  If you would like to join us in our celebration, please lift our daughter up in prayer and enjoy something sweet in her honor!  We ask that no gifts be sent, but if you would like to make a donation in her name, please consider making it go towards finding a cure and sending it to Children's Neuroblastoma Cancer Fund.  You can find them at www.cncfhope.org 

    AGAIN THANK YOU ALL SO MUCH FOR YOUR LOVE & SUPPORT!




32 comments:

  1. Wonderful news! We are praying for complete and eternal health for Hazel.You have come so far and we have been with you in prayer thoughout your journey. I am so grateful you have invited us into your lives. It has been inspiring and humbling to say the least. Your faith has been a spectacular example.
    Have a wonderful birthday celebration Miss Hazel. We will continue to send love and prayers.
    The Kelly's, Fairfax VA

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  2. Great progress and thank you for providing the info. Most importantly HAPPY BIRTHDAY little one!

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  3. This is wonderful news and so glad that Hazel has completed another milestone on the journey that she has been on. Hope that she has a wonderful birthday and that is a tremendous celebration for all that she has been through.

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  4. So thankful to hear the great news. We will continue to keep you and Hazel in our prayers. God bless you.

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  5. So glad to hear things are on the upside. I remember the last time I was with my moms nurses it was bery bitter sweet. But know that you can go and visit!!!! Hazel has touched many

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  6. Happy Birthday, Beautiful!!! Glad to see you are still fighting strong!

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  7. So happy to hear she is doing better. Praying that the cancer is gone. Have a good birthday little ms hazel :)

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  8. Hi there Hazelnut!!! I didn't realize that you and I share a birthday(well 24 hours anyway). I'll be a whole 55 years old tomorrow, the 24th!!!! And you will be 3 on Saturday, the 25th!!! I am so very, very happy for you and your family and I just KNOW that God has healed your body and that the stupid Neuroblastoma will never appear in your body again. Then, WE are ALL gonna fight and research and give to this research so that no other child has to go through what you and my son and so many other children went through. We love you Hazelnut and we are praying for you! Mom, Dad, Siblings,,,,,,,We love you too! You are ALL special and you ALL are loved!

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  9. You are in our thoughts and prayers!!!

    Lety Garcia
    Michael Hoefflin Foundation

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  10. Wow! Wow! Wow! Hazel you are the best. Prayers from Michigan are always coursing the distance between us. The Love that you share with your family is the utmost and can't be duplicated. But I have been trying in silence here in Battle Creek. I am so happy that you are thru the next phase of treatment. I'm sure you are as well. Always remember that family is the best thing and you have a large family. Take care and keep up the good work. May the LORD bless you and keep you; May the LORD make his face shine on you and be gracious to you; May the Lord lift up his countenance upon you,
    and give you peace. Craig

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  11. Sending thoughts and prayers and a great big happy birthday wish- for this birthday and many many more!

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  12. happy birthday darling, keep fighting xxxx

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  13. This is so great to read, my eyes swelled up wen I saw HAIR! Know my prayers will be continues for clear results!

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  14. Great news, Lauren! We will keep her in ours prayers!
    Sandy Wilcher

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  15. I am so happy that you have the chance to celebrate another birthday with Hazelnut. She is such an amazing little girl...they say the apple doesn't fall far from the tree and this is so evident with your family. Your family has taught a lot of us the true meaning of the word "family". Your family has been through so much and you continue to push forward with such love and courage. I pray that you feel the Lord's presence these next couple of weeks as you go through all of Hazel's test and that the Lord gives you a sense of peace. Happy Birthday Hazel...we all love you so much!!!!

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  16. Amazing. Will be praying for you all.

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  17. Hazel I have been praying for you, your mom and family. I can't wait for the Polished Girlz to come and pay you a visit with color, glitter and glam. Take care and see you Real Soon!!!

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  18. This is great I pray for your family and little Hazel every day. Thank god you are finally seeing progress. I will keep the prayers coming your way !

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  19. Wonderful news! Praying for your family and for continued healing in Maryland!

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  20. We will be praying from Texas. Go hazel! What a great update.

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  21. After following your story of the love and heartache from this disease I will continue to pray for Hazel and your family. It will be hard to wait for the results as we love your daughter very much. Happy 3rd Birthday to a very strong little girl. Please post picture's of Hazel and her siblings from her family Birthday party. Seeing their faces together is so wonderful.

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  22. Praying and thinking of you...
    Happy birthday!
    Love and greetings from Bosnia!

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  23. Jasmina from SwedenJanuary 24, 2014 at 1:46 AM

    so so so happy for little Hazel, thank you God for helping dear Hazel, please help her with the rest also, help her get well and healthy
    Im praying for you, thinking of you every day...
    /jasmina

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  24. It's so nice for your news to bring tears of joy to my eyes, may she have a wonderful third birthday and may you all celebrate together many, many more to come. God bless her, she is always in our prayers, may God grant her a full and speedy recovery ! Happy birthday little Hazel

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  25. GREAT news guys! Hank from Canada says Happy Birthday, and congrats on your last day of Rad. ;)

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  26. Prayers and love from Durango, Colorado. Happy birthday, Hazel!

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  27. Happy birthday Hazel, you are amazing girl! Love from Croatia! K.

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  28. Happy Birthday dear girl! We're all rooting for you! And a very special thought for your parents, too.

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  29. Happy Birthday Hazel! Hope you have an awesome day :)

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  30. Praying for a complete healing!

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  31. So glad to hear your little girl is feeling better. From Ontario, Canada.

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