Friday, August 29, 2014

Misc Updates

     Life at home with five, healthy children has been miraculous, beautiful, and wonderfully busy!  Little Zoey has just been such a blessing to our family in ways that we could not have even fathomed.  It truly has shown us what a loving, all-knowing and gracious God we have!  Our little Hazelnut has LOVED being a big sister again, and has taken her role very seriously.  She is going to be a marvelous mother someday!

     During Aaron's family leave, we took a quick trip to Disneyland!  We had taken a trip back in January, and Hazel's most favorite ride, "It's A Small World", happened to be closed and she has been talking about it ever since.  So to celebrate her completing treatment, we spent the night for two nights and enjoyed a couple leisurely days at the parks where the very first thing we did was "It's A Small World"!

This face says it all!


     Since she also had her line removed, we thought going to Disney would make her first time in the pool magical!  The minute she got in the water, pure elation just radiated throughout her body.  She was giggling uncontrollably and kept saying "Oh my gosh! Oh my gosh!"  Needless to say, we tried to get in as much swimming as we could for her this summer.


     During this last month, we also received some long awaited news from Hazel's doctors regarding the genetic testing we had done on her tumor and blood.  For those of you who may not remember, we discovered during Hazel's treatment that there were two members of our extended family who also had Neuroblastoma as children.  Neuroblastoma is an extremely rare cancer, so for there to even be one case would be surprising.  Since we had two, the doctors were suspicious that Hazel may be in the 1-2% who may be carrying the hereditary form of Neuroblastoma, putting our other children at risk as well.  The doctors said if we tested her tumor for a specific genetic marker and it came back negative, then we would be in the clear.  If it came back positive, it didn't necessarily mean she definitely had the familial form of NB, but could be a strong indicator and that we should then send her blood for confirmation.  The results for her tumor did come back positive for the specific genetic marker, however her blood work came back negative!!  This is actually very good news for us because it means two things for us: 1) She does NOT have the familial form of Neuroblastoma, keep our children safe from the elevated risk and 2) If she ever relapsed, this type of tumor make up actually has targeted therapy!  Relapsed Neuroblastoma has no known cure and no standard protocol, so knowing that we would actually have a plan of attack gives us a little peace of mind.  But please pray we will NEVER even have to cross that road!  Hazel's oncologist told me that her particular diagnosis and genetic make up is very unique and will definitely be going in the medical journals and helping with further research, so I am so happy we can use her journey for good in this way.
     I have a lot to update you on some upcoming events and what we all can do to help spread awareness for Childhood Cancer Awareness month this September, but I will save it for the next post in a day or so!



10 comments:

  1. thank you for the update, so happy for Hazel and the baby is beautiful like the entire family, love marie

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  2. All wonderfully, beautiful, miraculous news!

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  3. tears of happiness for your family. I feel like i've been on the journey alongside you so to see this outcome is overwhelming and joyous! Much love and luck to your family in the coming months and years.

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  4. So, so, so happy for all of you! Enjoy every moment :)

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  5. I feel like I know Hazel and your family. Everytime I hear about your precious little Hazel, I get tears in my eyes, Tears of happiness and such joy seeing her precious little smile and her being able to be a little girl and enjoy life.

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  6. I am very very happy about this great news!!!
    Be blessed all!! You are a fantastic family!

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  7. That is awesome news. God is so incredible with all that he does. Your family is beautiful.

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  8. Such wonderful news. I pray you and your family can move on from now with health, joy and happiness in all your lives. X x x x x x x

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  9. Jasmina from SwedenSeptember 2, 2014 at 6:17 AM

    WHAT A BEAUTIFUL FAMILY, ALL MY LOVE FOR YOU

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