Day 19, a Moving Day

I’d like to start with a thank you (again). We’ve shared some deep, truthful, raw feelings we’ve had through this process. While we have had other significant trials in our lives, this is by far the most difficult for us. But the comments, emails, texts, phone calls … all of this support for us as we support Amber … has been incredible. Today has been truly moving for us.

Several have commented on the strength of our Faith reflected in our posts here, which made us pause for a moment – we’ve never considered our Faith particularly strong. Sure, we were both raised Roman Catholic, bring our family to Church weekly, and do Believe. But, we’ve never been tested like this before, to understand ourselves how strong our Faith really is. This too has been a moving realization for us.

This morning, PT/OT came together and got Amber out of bed and into her chair. They did a whole bunch of exercises with her, which seemed to wake her up and energize her a bit. Still difficult watching her go through these basic muscle exercises, but was quite reassuring to take her down the hall in her chair, and see her enjoy the change in scenery and activity. She even got to pet a dog in the hospital for a bit. And then, Valentine the clown came to visit, and shortly behind was Father Charlie! Amber had a good time with her visitors, lots of smiles. Was very good to get her moving today.

But the biggest news – today, Amber was moved out of the ICU! With all the tubes out (except the feeding tube) and being stable, it was time to “graduate” to Recovery on the eighth floor. So we moved all of the cards, flowers, toys, clothes, and food up to the new room. Again, CCMC is a fantastic place – her new room is bright and cheery, private with a nice couch/bed for us to sleep on, and a private bathroom. It reminded me a little of Moving Day on the first and last days of college.

And lastly, we have a target we are moving towards. April 30 is the tentative date for Amber’s next MRI and surgery, to remove any tumor regrowth and replace the skull flap, and May 15 is tentatively when we begin the first round of cancer treatments, as radiation therapy.

So lots of moving today; and a prayer that we just keep moving forward.

10 thoughts on “Day 19, a Moving Day

  1. Jeez…..what a day for you 3. So happy she is now on thr recovery floor. A new change of scenery must be nice for you all. Continued prayers and Healing thoughts/vibes sent Amber’ s way. Love you all and miss you.

  2. Cheered out loud at knowing y’all are out of the ICU! Hurrah! Great progress. Glad today was a day of moving forward, of making plans. Congratulations to Amber and to each of you. God bless you all

  3. So glad to hear that Amber is making progress and you can start to see the path. Katie and I have been following your updates and praying for your family. Amber is a very blessed young girl!

  4. Great news Matt! You and Caron are wonderful parents and your faith is your love for your children and each other. You may ask why these tests of faith and why has this happened, but I guess these are some of life’s mysteries.
    P.S. I asked for prayers for Amber last night from the membership at our Council 1090 Knights of Columbus meeting. A lot of prayer warriors are on your side.

  5. Glad to hear the positive news. A journey for sure and you faith has kept you all strong. God bless 🙏

  6. I am thrilled to hear that Amber is out of ICU!! One small miracle at a time! Our prayers continue for Amber and you! We at school are praying daily for Amber. Mr. Fiore, our Diocesan Superintendent, came to visit our school today, and also prayed for Amber. We look forward to hearing more great news like this.

    God bless you!
    Sister Mary Patrick, SCMC

  7. Hello Matt and my Cousin Caron!!! God bless you two. So proud of you both of how you two are handling this situation of your precious daughter. Matt I want you to write my book first of all, lol. Seriously I can tell you are very intelligent. God bless you both and your whole family. My mom, Phyllis, sister Elaine, and I are praying EVERY day for her and you both. Keep up the Faith. Hope is what pulls the miracles

  8. Hi, I haven’t commented until now but I’ve been following Amber’s story and I am thankful that you give the updates that you give. For you to consider other people’s concern during a time like this is a testimant to what good people you are.
    My name is Kathi and I don’t know you but my best friends daughter Sadie dances with Amber at Luis Pabon. I wanted to write because Sadies mom Angela had called and told me about Amber and wanted to know if I could give her a Snuggles From Sassy for her to give to Amber. I was thrilled to do it! My mom was a professional clown in Florida – Sassy – and she LOVED working with all kids but particularly sick kids. So in her memory I started making mini security blankets called Snuggles From Sassy.
    What I wanted to share with you was that I was excited that the first blanket I donated was to Amber! I “talked” to my mom before I sent it out the door and told her I knew she would be thrilled with it and I asked her to be an angel in heaven for Amber and watch over her and help her get through this. I am not a religious person but I am spiritual and I do believe in praying to whoever your higher power is and I believe it can help. So know that there are people who don’t know you or Amber and they are praying for your little girls recovery and health. I also pray for your continued strength to get through, what I can only imagaine as I have never experienced, what must be the hardest test of your life. Thinking of you all wishing health and peace!

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