Monday, October 11 – Ending a week at home

It was early last Wednesday morning, around 7am.  Wilson and I were coming around the corner approaching his elementary school.  Wilson exclaimed, “Look how beautiful the sky is!”  It was a majestic mixture of orange and pink.  And all I could think was, “This beautiful morning is the day I’m going to cut my son’s hair.”

It has been a week of ups and downs.

It has been a gift to be at home, all of us under one roof.  Part of it is simply the logistics – less coming and coming, all of us based in one place.  No tag-team handoffs at the hospital and endless text chains about who is covering which place and who is helping with carpool and making sure to ask the team this question at rounds and how long the line is at Starbucks at the hospital.  Our bed is SO much more comfortable than the “couch” we sleep on in the hospital, and no one wakes anyone else up to check vitals.  We’ve loved being able to check in with Heath and then head back downstairs, or go to a meeting, or walk the dog.  We’ve had some really nice evenings watching playoff baseball.  Carrie and I walk the dog together, which our neighbors know is a good sign.  This time has been really special. It truly has, and that’s a gift we are working hard not to take for granted.

But it is also a different kind of exhausting.  The gift of the hospital is that all of the helpful people are nearby.  If we have a question, we buzz the nurse.  Or ask them to page the team.  Our medical pros have been really accessible and supportive and answered endless sets of questions.  They are also checking in with Heath very regularly, often hourly, so nothing is left to chance.  Here at home we are left to wonder…”Is this normal?  Do you think he’s okay?  He sure is tired….”  This final point has been so hard. Heath continues to be very thin and weak in ways that are pretty heartbreaking.  He reaches out a hand to help him up out of the bed.  Then you make sure he’s steady.  A walk downstairs and back up (which doesn’t happen but a handful of times a day), is so tiring.  Those of you who have experienced this disease in your own body, or cared for a loved one through treatment, know what I mean.  His hair continues to fall out. 

That’s what we did on Wednesday – that I mentioned above.  He had grown quite a head of hair over the past eighteen months, the full teenage boy mop.  We knew there was a chance his hair could begin to fall out, but he didn’t want to cut it.  But the clumps of hair falling out made the decision for us.  On Wednesday afternoon we set up towels and sheets all over the bathroom, and I plugged in the clippers.  Much of that hair ended up on the floor.  Those moments were really hard.  Or, if I’m being honest, the buildup to those moments were some of the most difficult (ask Carrie how cranky I was that day) – for what they were, and what they symbolized.  Like everything else, Heath took it in stride as I cut the back and sides pretty short, and trimmed up the top.  He wasn’t ready to go full ‘buzz cut’ yet.  That will come in time.  But we did it, and it didn’t look that bad, and Wilson saved the day when he walked in and immediately said, “Heath, that haircut looks FRESH!”  (He meant fresh in a good way.)  “God bless dear Wilson,” Carrie and I said to each other.

So tomorrow morning (Tuesday), we head back in to be admitted for at least a week.  We’ll begin another week-long round of chemo, followed by another round of really low white blood count, which may be at home or may still be at Duke.  We pray nowhere in this time period will there be an emergency abdominal surgery.  We go in weary.  We go in anxious for the continued toll this will take on his frail body.  Yet we also go in hopeful, knowing that initial rounds have been effective, and that the tumor is gone.  We have at least nine more weeks ahead of this.  And so we pray for strength.

On that note, and understanding we’ve got a long way to go, we’ve added some spots to the signup genius for meals.  To the many of you who have fed us until now, we thank you.  It had been a gift to get to see many of you briefly, and enjoy the sustenance you provide.  If this is a way you could help, we’d be grateful.  The love we have experienced from countless saints, through meals and cards and texts and so much more, is a gift beyond anything we can ever truly articulate or understand.  Thank you, thank you, thank you.

21 replies
  1. Vanessa Hawkins says:

    Time together is precious, so I am glad you had this time in your home space. I will continue to pray for you, your family, and all who support and pray for you and those who lovingly provide meals for you.

  2. Muff Urbaniak says:

    I am so glad all of your family were at home with Heath this past week to be re-nourished by each other’s and God’s love! And my heart and prayers will continue to be with Heath and all of you as he starts back on chemo at Duke tomorrow!!

  3. Hugh Mayronne & Penny says:

    You are blessed to have a loving, supportive family and many friends. What a beautiful gift they are to lift you up in word and deed during this exhausting time. We, too, are some of those “long distance” friends and we send you love & blessings!
    Penny & Hugh

  4. Ann Flagg says:

    I wish I were closer (and younger) so I could be of some physical help for you. I will continue to pray and send you love. I know God is holding your hands and keeping the doctors and nurses strong.

  5. Terry Hammersley says:

    You are so generous to share all of this when you’re so vulnerable and just plain exhausted, and who wouldn’t be. Just get through tomorrow, knowing that so many people are rooting for Heath and for all of you, and God is with you every minute providing that sacred safety net.

  6. Barbara says:

    Thank you so much for your fantastic, loving, thoughtful recap keeping us with you~close to you.
    Prayers with you and love for Ella Brooks and Wilson too.. Thinking of Heath and wishing for strength for all of you. Thank you.. So much.. For letting me be a part of your difficult journey. ❤️

  7. Kate OReilly says:

    My dad always led children’s church and for some unknown reason, when his hair started falling out, he had those children meet him at the barbershop and the barber LET THE KIDS use the clippers to shave his head. The preacher came. There was a blessing. It was a whole thing. I’m not sure I would recommend giving clippers to a three year old, but I’m glad that Wilson offered some levity.

    Sending you all my love.

  8. Sarah Erickson says:

    Not a sprint, but an ultra marathon. I’m here for all of it, praying your family and medical team and especially Heath along the way. Here’s to dog walks and sunrises and supportive siblings.

  9. Anna Straight says:

    Sending love and prayers.
    Thankful for sustenance.
    Thankful for “God Bless Dear Wilson” moments.
    Also here to hear the sad and the cranky.


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