Tuesday, December 14 – A meaningful day

Today was a weird day.  A day with so many feelings.

You see, 13 years ago in the very early hours of December 14, Heath received the gift of life.  He had been on ECMO for 10 days waiting for a heart.  We were exhausted and scared and shell-shocked and hopeful, all at the same time.  

Please stop right now and give thanks for a beautiful little girl named Angelina, and her dear family, who made the decision to share the gift of life as they were in the worst moments of their lives.  Her heart, her spirit, has been beating strongly within Heath’s chest all these years.

Heath has traveled the winding road of living with a heart transplant for 13 years.  There have been ups and downs, of course, but this lymphoma has been a whole different level of hard and complex.  Those don’t quite feel like the right words, but that’s all I’ve got this evening.  Suffice to say, nothing with Heath’s precious body has ever been straightforward. 

So, you really want to know what happened today, I know.  We finally talked with our oncology team late this evening.  First, it is almost totally good news.  The PET/CT scans showed no evidence of any lymphoma anywhere else in Heath’s body.  As we already knew, the mass is gone (I didn’t realize how big it was until I saw the side-by-side scans.  wow).  All that is good news! It’s amazing how great it feels to read the word “unremarkable” over and over about your child. 😉

We were really hoping for a shout it from the rooftops, “Heath kicked cancer’s ass!” kind of post.  We’re pretty darn close to that, but alas, that complexity comes back into play…

There was a small spot in the colon that popped up on the scans and was difficult for all to read. It was in a place where contrast couldn’t go (due to ostomy). When you are looking for an “all clear,” even the smallest of spots makes the medical team pause and necessitates a closer look.  The radiologist’s report said that PTLD is unlikely, but there will be a few more tests and at this point, some more scans following the “take down” (ostomy reversal) surgery, which is scheduled on December 28 and seems to be moving forward. 

Goodness knows that while we wanted straightforward answers, we also join our hematology team in wanting to fully be able to shout “all clear!”

So, as I said earlier, this has been a weird, complicated, and full-of-feelings sort of day for many reasons.  We are full of hope and exhausted and still a little anxious.  

As Chris and I walked up to the house after a short dog walk, I looked up at our house, full of light.  Everyone has been teasing me about all the lights I have added this year.  EB called me the “crazy Christmas light lady” the other day.  I just said, “hey, we cope how we cope…”  Chris somewhat obsessively rakes leaves, I put up lights.

We move forward with hope, seeing the light that shines in the darkness.  Literally and figuratively.

📸 photo credit Heath Tuttle 😊
47 replies
  1. Bonnie Maready says:

    Remembering when God brought us together years ago. What a gift!!!
    Keeping you all in prayer….
    Merry Christmas!!!
    Hugs and Love

    Reply
  2. Melissa Burris says:

    That day 13 years ago is also one I will never forget. I will always know where I was when I found out (in the hallway of Faith Pres) and who I first saw and shared the news with (Bonnie). I will always be in awe of the gift that gave life to Heath, the other precious life and family who made that gift possible, and the hope that holds it – and us – all together. Sending you love and light always.

    Reply
  3. Scottie Cannon says:

    We have been so grateful for these updates, and hope the surgery on the 28th goes well and that we will be able to her the “all clear” shout soon after that all the way from Durham to Black Mountain. Love to you all.

    Reply
  4. Reba says:

    Prayers continue 🙏🙏❤️ Thrilled about this report I must say. Praise God and prayers for continued clear scans, strength and peace to prevail!!

    Reply
  5. Terry H says:

    Carrie, I can absolutely feel how tired you are, just wanting one completely positive set of tests for your precious boy! I say, the more lights, the better — whatever gives you joy will give you energy to keep going! Heck, if you want lights in the bathroom, go for it! Hoping there’ll some respite now, cuddling up with your family, until the 28th. Blessings for rest and healing and strength. Love you, Terry

    Reply
  6. Sandra Lutz says:

    Thank you, Chris, for writing with news of your family during this Advent Season.
    I send love and gratitude to your precious Heath as the candles on Advent Wreaths
    glow with hope for the world and most especially for Heath and his dear family.
    Hugs all around-sl

    Reply
  7. Betsy Rule says:

    One rakes leaves,🍂💕
    The other puts up lights!
    It takes all kinds of stuff
    Morning, noon and nights!!

    We’re praying for you, Heath
    We want this Christmas near-
    To fill your heart with hope,
    And, take away your fear!!

    Enjoy yourself, dear friend,
    Remember you are loved,
    By those of us who pray for you
    And, our wonderful God above!!

    Oops! Our God is everywhere
    Even in a hospital room,
    Or, on that crazy thing
    That oftentime’s called ZOOM!!

    So know you are surrounded
    By love, it’s everywhere!
    You’re in our hearts and minds
    Because we really care!!🎄♥️

    Reply
  8. David Vaughan says:

    Much to be grateful for – thanks for this report! Prayers continue as further testing and 12/28 approaches. God’s got this, and we are praying! DV

    Reply
  9. Karen Smith says:

    Love hearing the good news and seeing the beautiful lights.
    Remain strong and hopeful. You are close to the last chapter of this story.

    Healthy
    Optimistic
    Promise for the future
    Enjoyment
    Christmas Blessings to all.

    Karen and Colie

    Reply
  10. Faye says:

    Feeling more positive for you. Reversal surgery will be a blessing and hopefully the “spot” will be insignificant.
    We are very similar. I put up Christmas trees and Tom rakes the leaves.

    Reply
  11. Erskine Alvis says:

    We give thanks and we continue tp ask for God’s grace to carry all of you. Faith and Hope and Love and Grace to all of you. A blessed Christmas for each and every one of you

    Reply
  12. Heath Rada says:

    We are so grateful for the good news portion of this report. And, along with you and so many others, we have HOPE – especially in this Advent Season – for the future, and especially for Heath’s next report. May God grant each of you some times of peace this season. Much much love.
    Heath Rada

    Reply
  13. Diane Hill says:

    What a day! Yes, don’t lose sight of the light in the darkness-the light that no darkness can extinguish.
    Love to you all, and lots of prayers for a “shout it from the roof top” report after all the tests.

    Reply
  14. Kitty Kelly says:

    I remember that day 13 years ago and how grateful Mimi and Papa were – all of us here in Black Mountain were – to hear that Heath would have the gift of life. Haven’t stopped praying for him and all of you since then. Love the lights and the raked yard and those of you who live within that love-filled home.

    Reply
  15. Towles Kintz says:

    What a season. We join so many others in praying for you all, who are walking through this so faithfully, and for Heath. Praying for an especially loud “all clear” and a few solid nights of sleep once these additional tests are complete! ❤️

    Reply
  16. Susan Rohde says:

    Prayers continue for everything each of your family members needs, especially Heath.
    I suggest you keep those lights up all year. They are a beautiful sign of hope.

    Reply
  17. Lee Willard says:

    We have been thinking of you all constantly.

    In him was life, and the life was the light of men. The light shines in the darkness, and the darkness has not overcome it.

    Reply
  18. Bonnie Maready says:

    Yes. I well remember December 14, 2008. We got the news at Faith Pres. first thing that morning that Heath had a heart. We had hoped and prayed. Wow.
    We’re still on our knees hoping and praying. That’s ok.
    We’ll Keep Hoping and Praying and Loving…
    Love the Leaves that distract you
    Love the Lights, (More Lights Please)
    Love Hope Pray
    Hugs to All

    Reply
  19. Amy S says:

    What an amazing and full day, again on this December 14. Prayers for that remarkable young man, and more unremarkable doctor’s reports to come. Peace and Blessings with you all. 🙏

    Reply
  20. Nancye Bryan says:

    Thankful for this report. And praying that the question mark spot amounts to nothing at all. Blessed rest to and for you all. ❤️ N

    Reply
  21. Christie Masinick says:

    “We cope how wee cope.”
    Well said.
    I think that’s a pretty healthy way to cope. ❤️
    So glad to hear more positive news today. Praying for a positive close to this chapter for you.
    Merry Christmas!

    Reply
  22. Joe Harvard says:

    WOW! What a day! We are so grateful for the light that shines into your darkness tonight!!
    You have been in our hearts all day
    so we are extremely grateful for your update. Keep hope alive and hug Heath and each other for us:
    Much love, Carlisle and Joe

    Reply
  23. Gran Sarah says:

    I will never forget how I felt when I received your call at 3:00 am that day and how completely covered in Joy Light, Hope …all of it, I was. What a day. Now 13 years later, we are in a place we could not have imagined. Waiting is so hard but we wait with Hope. We string lights, rake leaves – whatever we need to do to get to “unremarkable”. Praying and hoping for more unremarkable news SOON!❤

    Much love,
    Gran Sarah

    Reply
  24. Kara Pearce says:

    Been thinking about y’all all day! Feeling all the feels with you and continuing our prayers always, with extra ones for Angelina and her family <3

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *