Wednesday, December 1 – What’s next?

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With many questions from folks, we realized that it might be helpful to give you all another update and to lay out the plan (HOPEFULLY) for the next month or so.

Heath had his final lumbar puncture on Tuesday afternoon. It was an incredibly long day, but it went pretty well and he didn’t get sick this time! Hopefully, that was the last of any chemo/treatment going into his sweet body. So far no neutropenic fevers that send us back to the Duke ED, but there are a few more days that that could happen. We’re hopeful that we might skip that part this cycle.

The last chemo infusion on Thanksgiving night!

With the ostomy, his body is having a tough time keeping magnesium up to safe numbers, so he will have to go into the Valvano Day Hospital every other day for magnesium infusions until he has his reversal surgery later in the month. These labs/infusions usually take a couple of hours, but we decided we would rather go into the VDH instead of keeping his port accessed and doing the infusions at home. This is not fun, but we know it is the best way, so it is just what it has to be…(I feel like we have had to say this A LOT in the last few months).

The PET/CT scans are set for Tuesday, December 14. Hopefully, we’ll get results within 24 hours.

If all looks good (no signs of lymphoma) on the scans, he’ll be cleared for surgery to reverse his ostomy–to put his intestines back together–on Tuesday, December 28. We don’t know a ton of details about recovery, but we’re guessing he’ll be in-patient at least through the first few days of 2022.

Hope. How many times did I just type “hope,” “hopeful,” or “hopefully?” How many times have we prayed to find glimmers of hope? So many.

My Nana loved poetry. She used to do poetry readings for her book club and then even in the retirement community where she lived, right up to a couple of weeks before she died early in 2021 (She died of COVID complications–seriously y’all, please get your vaccines and wear your masks). One of her favorite poets, and mine, is Emily Dickinson. As we have made our way through these difficult months, grasping for hope, I have heard the words of a particular poem in my head, in my soul. Last week, I was walking near the elevators on the 5th floor of Duke, taking a deep breath as I dared to HOPE that Heath’s treatment was coming to an end. And I looked up and saw the words of the poem. Those words had been there THE WHOLE TIME, but my mind was always so busy as I rushed through that space that I hadn’t really read the words.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

–Emily Dickinson

I dare say the hope has been there–found deep in our souls, found in beautiful acts of kindness, of great medical care, in the ways Heath has endured and overcome so many hard things.  We’ll continue to hope and take deep breaths as we do a little decorating and maybe even a tiny bit of planning for re-joining the world.  This journey is still not close to being over, but we’re getting there.

Getting a tree!
44 replies
  1. Erskine Alvis says:

    Please know of the Alvises’ prayers and we ask for God’s grace for all of you! We want so much for the very best for all of you! Blessings to all

    Reply
  2. Ann Fulagg says:

    My heart is full of hope and love and admiration for all of your family. I send prayers every day for your family to continue to be brave and for strength as you face the next few weeks. God is surely holding your hands. 💞🙏😷

    Reply
  3. Melissa Burris says:

    We love all of you so much and continue to pray for Heath and all of you every day while holding you in the light and in our hearts. Thank you for sharing your story so faithfully. Not only so we want to know because we care so much about you – we are also blessed by the gift of your words and your hard-won wisdom.

    Reply
  5. Sharron Joyce says:

    I love that poem and I so wish that I had known your Nana. She sounds a lot like mine. Prayers for each precious member of your sweet family.
    Love and hugs!💗🤗

    Reply
  6. Jo says:

    When I was going through a particularly tough time, a friend sent me a card that said “My barn burned down last night, but now I can see the moon”
    Hoping you guys can see the moon, very soon!!
    💙💙💙

    Reply
  8. Kitty Kelly says:

    It is so good to see Heath outside with you all doing beautifully ordinary things like choosing a Christmas tree. Love to all.

    Reply
  9. Betsy Rule says:

    The journey can be so tiring. I hope all of you are getting your rest. Thank you so much for including us in the journey. We love you all, and we are praying for you all.♥️

    Reply
  12. Scottie says:

    We are so grateful that you have allowed us to share in this journey. We think of you all every day. And thanks for sharing that wonderful poem…….

    Reply
  13. Daryl and Kim Fisher says:

    We continue to hold you all so very, very close. Hope, Faith and Love are all so powerful. Sending lots of hugs and love to you all! 🙏💜🙏

    Reply
  14. Al Masters says:

    appreciate the update, the poem and your family’s hopeful courage…Heath’s ongoing treatments recall chemo memories and I pray for relief, healing and some Advent quiet joy–for each of you

    Reply
  15. Gran Sarahl says:

    Emily Dickenson…also a favorite in our house. Hope, hope, hope…for the Tuttles every single day mixed with tons of love.

    Reply
  16. Philip James says:

    Carrie, thanks for this authentic, hopeful (hope-full), lovely and hard-earned update. You are all in our hearts. Philip

    Reply
  18. Dana says:

    Your positivity brings hope to us all. But it is OK to ask for help and prayers from all of us who love all you Tuttles. Thanks for reminding us all that hope is alive right here in Durham

    Reply
  20. Rebecca R Glick says:

    God, please ease Heath’s trip as he fights his cancer. Guide his physicians to the right decisions and be with them as they treat Heath. Please make all the pain less painful. He’s too young to suffer along this journey. Turn his pain into little specks of dust that drop to his feet and applaud him with perseverance, hope, joy and love. We hold this young fella in our hearts and pray for healing.

    Reply
  21. Ella says:

    I love that you found your “inner Nana”. I have felt her watching over us many times in the last few months. She’d be thrilled to see her favorite poem. Love to all!!

    Reply
  22. Patty Hill says:

    Hope is all we have when we have nothing else …
    When I taught health class and we had a student that committed suicide
    The students asked my why ? snd I told them he was saw no future in living he was “Hopeless “
    He had lost hope and that was straw the broke the camels back so always keep “Hope “ in your heart
    God Bless u all

    Reply
  24. Laura Mendenhall says:

    May the God of HOPE
    give you all joy and peace in believing
    So that by the power of the Holy Spirit
    You may abound in HOPE.

    Reply
  26. Mark says:

    “Now faith is the assurance of things hoped for, the conviction of things not seen.“ These words from Hebrews came to my mind as you wrote about hope. We are hoping along with you, and praying, too, for Heath and each one of you. Love and light…

    Reply
  32. Chris Baker says:

    Such an amazing family! Sending you love and hugs as you enter this (hopefully) final leg of this journey. That picture of the five of you is so beautiful. Your masks cover your mouths but not your smiles. I love y’all.

    Reply
  44. Barbara says:

    Prayers continue and sending you strength hugs and hopefully sweet tree decorating and Christmas joy.
    Thank you for the wonderful poem.
    🙏🙏❤️💞 And for writing..

    Reply

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