Friday, October 28, 2016

Update and Scan Results

Hazel finished her third round of treatment, and it went very well! She felt felt pretty good the whole time, and even spent quite a bit of time up and out of bed. After coming home, she felt pretty tired and nauseous for a few days, but bounced back very quickly. She has been going to school, the pumpkin patch, sleep overs and play dates, celebrated both of her brothers' birthdays, lost another tooth, and has just spent time enjoying being a kid! Im so thankful for such gloriously normal time, especially leading up to her scans.








Now the scan results:

The scans have shown that the treatment is not working and the tumors have grown....Good news is that they have only grown a very little bit and the doctor believes the tumors are not very aggressive. The treatment probably worked in the beginning, but the cancer has already figured out a way to overcome it. It is probably helping to slow the growth, but this is just not enough. We want the cancer to be disappearing, not inching forward!!

So we are switching gears. Hazel will begin a new therapy that involves a targeted inhibitor for her ALK mutation, paired with two types of chemotherapy. The nice thing is that the ALK inhibitor is a pill to be taken twice a day, at home; and the chemo is every three weeks, for four days, and administered outpatient! The tough thing is that this chemo has a higher toxicity level. So she will indeed lose her hair, feel more unwell, and will become immune suppressed (causing more unplanned hospital stays and being less likely to go to school). They want to give her the next week off, feeling she is stable and strong, and then begin treatment the following week. We also will still continue with all of the complimentary and natural therapies we implement at home. We are literally trying everything we can!


The doctor is still remaining hopeful, because even though the treatment we all thought would work best, has not worked, we are not yet out of options. Not only are we not out of options, but the options we have left are still promising.  Hazel's genetic testing of her tumor came back, and it actually has a couple of different mutations that have targeted therapy. The ALK mutation, has the targeted therapy that is currently in use; and another drug, that is even more promising, that should be approved in the beginning of the year. If the one we try next doe not work, our hope is that she can remain stable enough to try the next one in the new year. The doctor said we have a bag full of keys, and one lock. We just need to find the right key. My worry is that because relapsed Neuroblastoma is so unbelievably tricky and clever, we may not have the right key at all. So please be praying that we find the right key!!!! Thankfully, because her tumors are not aggressive right now, we still have time to try and figure it all out.

To be honest, we were very disappointed to hear this news, but the more we spoke to the doctor and with each other, the more hope we are beginning to feel. We are still scared, unsure and overwhelmed, but we still have hope! And the bible says in HEBREWS 6:19 (the bible verse on our Hope for Hazel shirts) "We have this hope as an anchor of the soul. Firm and secure". So please be praying for our family that we can continue to cling to this hope and begin to feel the peace only God can give.

27 comments:

  1. Praying daily for Hazel. May the Divine Physician, our Lord Jesus, grant her healing and peace to her and your whole family.

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  2. Hazel is such a fighter, praying this next treatment kicks that tumor. God know's the world is praying for Hazel to get well and stay healthy. Go have some Pizza sweet girl.

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  3. Praying for the right key to heal precious Hazel.
    Please Lord help this little girl be rid of this disease forever. Give her and her family faith and peace that soon the key to cure Hazel will be found. Please give Hazel strength and protect her from further sickness. Let her be a kid Lord. Heal her💜

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  4. Prayers for Hazel.
    Question- Can't tumors be removed?

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    Replies
    1. Surgery is defintely an option we have if we run out of other options. But as of this moment, it would be a very dangerous surgery and could put her life at risk. We will use this option if we find that there is no other safer option. Thank you for your question and support!!

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    2. We pray everyday for Hazel and the whole family...

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    3. Will hazel still be doing the immuno therapy?

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    4. Unfortunately she will not be continuing immunotherapy.

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  5. Positive thoughts and lots of prayers for this cutie pie.

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  6. Prayers coming your way. Stay positive. The key is there and will be found.

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  7. We are praying for Hazel and keeping strong thoughts for all of you!

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  8. I am so crushed to read of Hazel's relapse. She was doing so well that I didn't check this blog for months. And now I'm in tears. I just had so much hope that she would remain cancer free! She is truly a fighter and is lucky to have so much support and love surrounding her. I will be thinking of you all as I hug my babies extra tight tonight!!

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  9. Prayers, love and hugs from Australia for Princess Hazel xxx

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  10. We are all praying for only good things!

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  11. Praying every day for this little warrior. I feel in my heart-of-hearts that the "right key" will be found and Hazel will go on to do the most wonderful things. I think of this little girl every single day as I wear my Hope for Hazel bracelet. Warrior on little one!

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  12. Sending many prayers your way. I pray for Hazel often. I hope this new treatment works.

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  13. Saying prayers that the right key is found. I know it's there. May God bless Hazel and her family!

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  14. I hope that they find the right key to bring her cancer to its knees! Sending positive and healing thoughts.

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  15. Lucy Feijo-CarriereOctober 28, 2016 at 9:12 PM

    God please give Hazel a chance to live cancer free...to spend her childhood at home with her siblings and her parents without having to go through this anymore. She is an Angel. Your Angel on earth.��☝

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  16. We are praying for Hazel. All our love and prayers, Arla and Susie

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  17. Hazel, you are a trooper and a fighter. You are loved from every direction. Keep your chin up and look straight ahead. Lauren and Aaron, you are so very important as you well know. Keep up the good work and know that we are praying for all of you everyday.

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  18. We are praying for Hazel here is Chicago. I keep her in my prayers and check for new postings a few times a week. She is a fighter!! I will continue to keep Hazel in my prayers that this new treatment works for her. God bless all of you.

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  19. Praying diligently!!
    Texas is rooting you all on!!!

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