Saturday, August 20, 2016

PET/CT Results




I honestly, in my heart of hearts, never thought I would be writing this post.  I truly believed that our little Hazelnut would forever remain cancer free.  However, the results from the PET/CT on Friday have told us otherwise:


OUR DAUGHTER, ONCE AGAIN, HAS CANCER

Even just typing those words seems totally and utterly unreal. But like so many other families who hear this news, it is most unfortunately real.

We hoped that these scans would be inconclusive as the others were, and that the biopsy next week would find nothing, but these scans were very obvious.  Not only did the spot in question surely light up, but they also found another spot on a lymph node in her neck, which confirmed what we all feared, that this is indeed cancer.

The doctor is quite certain that it is RELAPSED NEUROBLASTOMA, but there is a very small possibility that it could be a secondary cancer from treatment.  So we will continue with the biopsy as planned so we may confirm what cancer we are dealing with.  Initially it was planned for Monday, then it was moved to Tuesday.  This ripped me apart for two reasons.  The first is that Tuesday is my 30th birthday, and I did not want to receive the worst news of my life on that day (which has now already happened, so that is no longer a concern). Second, Tuesday is my son, and Hazel's younger brother, Jonah's very first day of preschool. When Hazel was first diagnosed, Jonah was only 5 months old.  Aaron, and especially I, missed so much of his early childhood and it absolutely broke our hearts.  To think we would miss yet another milestone just felt like being kicked while we were down.  I just HATE how much cancer takes away.  Thankfully, after consulting with the surgeon doing her biopsy, he heard my heart and moved our appointment back to Monday with no hesitation! 

The results from this biopsy should take a couple of days now, and once we get them, we can move forward with a treatment plan.  Tentatively, she will begin treatment on Tuesday August 30th.  If it is in fact Neuroblastoma, we will first move forward with a treatment option that is proving to be much more successful than anything ever has in the past.  It is chemotherapy paired with immunotherapy.  From what we understand, the type of chemo she will receive will be less harsh on her little body, so she may be able to resume some "normal" activities between treatments, which will be on a three week cycle.  We also need to decide whether to place a central line or a port in her body to administer treatment, either one most likely being placed on Monday the 29th.  Her treatment will require two access points, which is easily done with a central line that has two tubes attached to it already.  A port is only one access point, so she would require an IV to be placed every time she would go into treatment.  Initially our though was to, of course, choose the central line.  Hazel has such overwhelming anxiety about needles, and a port requires a needle access, and then she would also have another needle with the IV placement.  However, we also know how much she adores swimming and taking a bath.  A central line will never allow that, and a port would allow for everything.  With relapse, there is also no treatment plan, so there is no way of knowing how long it will be.  It could be years.  Would we want to take swimming and bathing away from her for that long?! A central line requires constant care, supervision and protection.  It could be caught on something, broken, pulled or have an infection introduced.  It also requires painful dressing changes once a week.  A port does not require nearly as much.  But, again, is it worth absolutely traumatizing her every three weeks for treatment and for the lab draws in between?!  How can you choose between two bad options for your beautiful little daughter?!  This is something that will take prayerful consideration, and also will be including Hazel's opinions.

Obviously this news has been overwhelmingly difficult for our family to digest.  We had to tell our family, and of course Hazel and our children.  These conversations were certainly very difficult, but God has been so faithful in granting our children strength and peace, that it has just amazed me.  I will not say, however, that these past two days have not been without tears, questions, thoughts and fears.  It has been hard on them, and on us.  I think though, that I will share these conversations in another post, because I will be asking for so many specific ways you can be praying for and supporting us, that it will not be beneficial to do it now.  I will say, however, that Hazel is doing well.  She feels good, and has taken this news in her stride and has said, "God healed me before, and He is my hero!  He can do it again!  And I am going to beat it again!"

For now, please pray that we can digest and cope with this news and begin to, somehow, organize our life and community around us so that we can move forward the best way we can.  We will be detailing the ways you can help our family soon, so please be on the lookout.  Thank you all for your continued support and prayers these past few days.  We felt so loved and cared for, and it helped beyond measure.

Hazel lost her second front tooth the morning of the scan, and was so excited to share it with all of you.

27 comments:

  1. :( So sorry to hear this. We are sending prayers your way. I can't imagine how hard this must be to go through.

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  2. poor baby prayers for all of you

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  3. Praying for Hazel and all your family <3

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  4. Prayers for Hazel and your family.

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  5. We are praying for you. With all of our hearts.

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  6. I'm so sorry to hear this. My prayers are coming to hazel for healing.

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  7. Praying for all of you. So sorry to hear this. Our mighty God will
    uphold you.

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  8. I am so sorry. I will be praying daily for you all.

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  9. I cannot even fathom how your momma heart feels, because mine is breaking as I read this post! Hazel is in my prayers and your family will be as well! God be with you and guide you! ❤️😢

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  10. I have been following your blog and FB posts for years, and I'm so sorry to hear this. I'm going to the church this morning and I will offer holy mass for Hazel and for your family. Let God be your strength. Best wishes and and prayers from Bosnia.

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  11. We are praying for you guys Lauren and I will be adding Hazel and your family to our church prayer chain in the morning

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  12. Prayers for Hazel for healing and prayers for your family for strength and continued faith!

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  13. She has become, in a way, a part of our own family, as are all of you. We are praying.

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  14. I am a survivor friend of Debbie Samel. I am so sorry you did not get better news. I will keep that beautiful little girl in my prayers each night and hope she will beat this awful disease.

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  15. I'm very sorry to hear this. We are praying

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  16. Please check out knowthecause.com it could change your life.

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  17. I have followed Hazel's story for years, I saw the strength in you and your incredible family. May you continue to overcome the obstacles and may Hazel continue to grow as beautifully as she has. My thoughts are with you and your entire extended family. Lots of love - The Bonilla/Rodriguez family

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  18. So hard to hear as a parent. My heart goes out to you. I found your story through a friends fb post. As a phlebotomost who worked at a children's hospital, I would choose pirt. They have a cream emla or another like it, that they rub on 30 min before that helps lessen the pain feeling of being poked. They can use it for blood draws and iv sticks in the arm each time also, just be sure to ask for that as part of her treatment. Prayers to you all from one mom to another.

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  19. Please know that you've got a lot of prayers being sent your way to get you through this heartache. Certainly, God is listening. ��

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  20. So sorry about Hazel's diagnosis. First time reading your blog. I am also a mom to a special needs daughter. Keeping your family and Hazel in prayer. Prayers for strength. Know Christ is there for you. LOVE HOPE PRAY ��

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  21. My heart goes out to your family, not the news I was hoping to hear. Hazel and your family with be in my prayers...you are not alone in this!

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  22. Sending prayers from far away Germany!!
    So sorry for this bad news...

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  23. I don't know you or your family. I think I began following your blog and Facebook page after a friend of a friend posted the infamous "Send Pizza" picture. However, I am shedding tears tonight over your families news. I feel like I have watched your beautiful daughter grow up from my Facebook page and seen your family conquer mountains with grace and God. I shed a tear for every lost day cancer has stole and every 'pokey' in Hazel's future. As you once again start to climb, know that you are in the thoughts, prayers, and hearts of strangers, and although you probably can't see it, you have made this journey with more grace and faith than most people could ever hope for. May God bless you and keep your family safe

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  25. Praying for your sweet Hazel and your precious family. God is able!

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