Day 257, A Let Down Day

Wish we had better news to share with you today. In a nutshell, the day was a big let down. Amber had her MRI and unfortunately, the results came back with what we were fearing – growth. Because the Pembrolizmaub is not working, they decided not to have Amber do the infusion today, nor any others as she will not be on this particular clinical trial anymore.

We have been in contact with Dr. Gillan from CCMC and she has some backup plans in the works. One possibility is two oral medications: Chemo and a medication that will target GBM stem cells.

And meanwhile still, Dr. Gillan and the doctors from MSK are investigating other potential clinical trials.

We are grateful to have MSK and CCMC working with us, joining us in the fight. But still …

… I’m trying to be open minded and I’m trying not to be mad. But right now, I’m angry, sad, defeated, numb, exhausted, heart broken. This sucks. This sucks BIG TIME. This poor little girl. For what happened to her 8 months ago to what’s happening to her right now. It’s hard to hang onto hope when “hope” is literally a tiny little shred of a string . . . that’s fraying . . .

30 thoughts on “Day 257, A Let Down Day

  1. We are continuing to bring you before God in prayer, seeking grace and peace and healing.

  2. This makes me sad. I am so sorry and wish things could be different. It has been such a long haul. It totally sucks! Sending you my care and love and prayers for mercy and strength!!!!!!

  3. I’m sending you all some very strong tight hugs and so so much love. My heart hurts over this news – many prayers ❤️❤️❤️

  4. Caron and Matt we are so very sorry to hear this news and you are right it just plain old sucks BIG TIME!!! This should not be happening to her or to her family or to anyone for that matter. We are here praying for all of you and will support you in any way we can. No parent should feel the way I can only imagine you and Matt feel.

  5. I’m so sorry to hear your news. Thank you so very much for sharing with us all. You all have shown so much grace. Of course, of course you are feeling are those difficult emotions. My heart and prayers are with you all during this very difficult time.

  6. This mama’s heart is breaking for you, for Amber, for Matt. There’s nothing I can say… Nothing that will help change today’s results, but we’ll keep praying in the hope that next time God’s Healing Hand will have worked the miracle we’ve all been praying for.

  7. Caron and Matt, We are sorry about the results. But we will keep you all in our thoughts and prayers. God bless

  8. I am so very sorry to hear this news about Amber. As a mom on the same sucky journey, my heart hurts with you….Please know I will never stop praying for a miracle for my Justin & for your precious Amber…Prayers for all of you🙏❤️🙏❤️🙏

  9. Absolutely wretched news. I continue to believe the treatment answer is out there and it will be found but this journey is so very hard for Amber and your family. Stay strong.

  10. We are saddened to hear this treatment did not work, but we will always continue to pray for Amber and your family..

  11. ✝️🎄Lifting my eyes to the Healer on Amber’s behalf. May our God of mercy bring healing. I pray that God will continue to point you in the right direction for Amber’s care.
    “God, my God, I cry out, your beloved needs you now.” Bebo Norman 🙏✝️
    I read about immunotherapy and wondered if you have tried it or if it is even an option. It sounded promising. t

  12. Oh Caron..,, I wish I had the words and the ability to change this all… for precious Amber and her family… please know we are keeping you all close in heart and prayer🙏🏻❤️

  13. I’m so sorry to hear this news. I’ll keep praying 🙏 for Amber and your family.❤️🙏🙏🙏

  14. Caron, I am heart broken for all of you and can not imagine what you are going through.
    My prayers continue for all of you. Please let us know what, if anything we can do.
    Much love and prayers, Dana Tackling (Melainey’s mom)

  15. Caron, My HEART, aches for you and your family. Please do not give up HOPE. Sending you LOVE and HEALING PRAYERS.
    Love, Yvette

  16. ✝️🎄Lifting my eyes to the Healer on Amber’s behalf. May our God of mercy bring healing. I pray that God will make the next steps clearly known to you.
    Praying for strength and peace for you all. In the name of Jesus✝️🙏

  17. I am so sorry for this news.My heart breaks for Amber and all your family. You are all in my prayers.

  18. Dear Caron and Matt,
    I realize that this is such disappointing news for you. You and Amber certainly have traveled on a very difficult journey. I can only imagine how difficult this is for any parent, especially you. Please know that you are in my thoughts and prayers daily.

  19. Caron, Matt and family…this is not the path anyone wants…but there are still angels out there helping along the way…keep your eyes open for the angels around you. I fully remember cups of tea, warm blankets, unexpected hugs, spontaneous prayerful people popping up here and there when I walked a similar path…keep your eyes open, He is still working in your situation. I love you, Aunt Jean.

  20. I’m so sorry to hear this latest news about Amber. Your family continues to be in my prayers.

  21. We are so sorry to hear this news. We continue to keep Amber and all of you in our thoughts & prayers. Sending positive, healing vibes your way.

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