Day 170, Lost a Battle but the War isn’t Over …

The MRI results today did show “recurrence” – some regrowth of the tumor.

Of course, this isn’t the news we’ve been hoping and praying for. At the same time, though, this doesn’t mean we’ve lost the war. The regrowth is fairly small, and we know where it is and what we are dealing with. Over the next week, we’ll review options (some of which are already in motion), make decisions, and move forward with treatment. When I think back almost 6 months to the beginning of this journey, we are in a much better position now than then.

We have been preparing ourselves for this possibility. But it still hurts, a lot. This is not what any of us wanted. As her father, I just want to take this from her – my six year old daughter should not have to go through this. But, we also haven’t been fooling ourselves, we knew that recurrence was likely, this type of cancer (GBM) doesn’t go down without a fight. We are prepared for ongoing battle.

The next step is another MRI, looking at the spine to make sure this thing hasn’t spread.  This hasn’t been scheduled yet, but should be early next week.  This will help determine which of the potential next steps we are going to pursue.

I am so appreciative for Dr. Gillan and Dr. Martin (and all the innumerable staff that we’ve met at CCMC). They are very direct, yet sympathetic. They understand what kind of detail we need to hear, and how to convey it so we can understand it. They care about Amber, and about us. We know that we were brought to them for a reason, and that they are fighting this battle with us.

And we continue to be amazed at The Good that has come from this journey, in the community that has formed around Amber and the impact we have been told she has had on others.

And so we continue to pray, and ask for prayers for Amber and the medical professionals helping her. We continue to work with Amber on her physical recovery from the stroke (her progress continues to be incredible), and continue to attack this cancer with everything we have. And we’ll just keep moving forward, one step at a time.

34 thoughts on “Day 170, Lost a Battle but the War isn’t Over …

  1. I’m so sad and so frustrated for you all. Wish this wasn’t the news you heard
    Prayers thoughts and hugs and love from the Avery family ❤️❤️

  2. I’m sorry the MRI wasn’t clean, but am glad that you have those wonderful professionals working with Amber and guiding you out of this maze. God is with you and your family and our prayers continue for total remission and full recovery soon.

  3. Matt, you and Caron are so strong…And Amber is an amazing little girl. To think how far she’s come…hoping for a big win in this battle for you all.

  4. Randy and I are sorry the test results were not clean. The war is absolutely not over though. Prayers and masses being offered daily for healing, strength and courage. If there is anything at all you need let us know and we are there. Love and hugs to your family.

  5. Ok, this is absolutely not the news everyone was praying for, BUT, it’s just a setback in her overall treatment plan. There is so much incredible work going on:
    https://today.duke.edu/2018/06/poliovirus-therapy-glioblastoma-has-three-year-survival-rate-21-percent, shows incredible promise as does so much work in the field of immunotherapy. Right now. Amber has a chronic illness. You have the best medical team managing it, you have the resources to pursue treatment anywhere, you have a great support system, and Amber herself is so courageous and TOUGH. Keep going and stay strong; this is a bump in the road.

  6. I’m so sorry that this was the news that you had to hear after all of the months having a clean MRI scan. We will continue to pray for Amber and your whole family. Amber will not go down without a good fight because she is one feisty little girl!

  7. I am so sorry. I will continue to pray for Amber and your family. God is always with you and Amber is a fighter. I have faith! God bless you ❤️❤️

  8. Amber is a trooper and is remarkably strong, just like her parents and family. Sending our love and prayers to all of you💚

  9. And we will all be with you for each step you take. Continued prayers for strength to fight this war.

  10. Matt and Caron….you have an army of soldiers, thousands strong who are in this battle with you. We will not give up until the war is won.

  11. Keep up the fight. We are with you.
    Much love and prayers to you and your family.
    The Cahill Family
    (New to ST. Joseph’s this year)

  12. Definitely not what we wanted to hear however sometimes in the battle you have to go backwards in order to move forward. Auntie and uncle are amazed each day with Amber and everything she has overcome so far. This is a small pothole in the road we call life. We are always praying for Amber and we will continue to do so. We promise to be by her side and to continue to support you guys in any way possible.

  13. I am truly saddened by your latest news, but we all have prayers for Amber and hope in our hearts. She’s overcome such terrible odds already that we have to believe ther are more victories to follow. May you fell love and calm as you march onto those greater victories. We continue to remain hopeful and prayer full. ❤️

  14. Matt and Caron our continued prayers are with you. She’s shown us she’s a fighter. When things are tough you just fight harder. The love surrounding her is amazing

  15. I know that this news is so disappointing and heartbreaking, but please know that there are so many prayers being said for all of you. We continue to hope and beg for a complete cure. Amber is one strong little girl and you are one strong and faith-filled family.

  16. Our thoughts and prayers are with Amber and all of you. Love and kisses from Maurice and Jean

  17. Matt, Caron and Family, words are inadequate to convey my sadness for all that you have been and are dealing with, and my prayers are focused on the strength and resolve for this battle. May you all continue to receive many special blessings.

  18. There is a bright light inside your beautiful Braveheart that blesses everyone through God Who strenthens you all. Seek that. Hold onto that, to Him and each other. One moment at a time. I hold you close in my heart and prayers alongside all of you.

  19. I am also sorry to hear this news. Amber and the all of you are in my prayers. God will keep you strong while dealing with this setback.

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