Hope and Strength

The moment where her eyes roll back into her head is the hardest.  For then it is time to kiss her goodbye before I must leave the stark operating room with the lasting image of those untethered eyes.  Before I must sit and wait and try not to think of her lying on that glaring antiseptic table with a hole drilled through the back of her sinus cavity and an array of cameras and cauterizers and suction devices tracing a path from the outside world to her remarkable brain.   Before I sit and think of nothing but that.

neva_anesthesiologistShe is in there now.  Prior to her short trip from prep room to OR, she high fived the anesthesiologist.  She laughed at her godmother and me dressed in our white surgical bunny suits.  She set her jaw as she has too often for the past three years and radiated a strength that, every time, makes even the hardened veterans of a level three hospital step back and comment.  How old are you again sweetheart?  My goodness you are brave.  Her mother’s child.

Most of them have no idea just how brave.  How she wakes up night after night and asks if her tumor is like mom’s, if she will be ok.  How I try to reassure her but how in the end it is her that leans into the rising waves of anxiety and says not this time either.  Then begins to talk matter-of-factly about how it will all go down.  Wait dad so they will make a hole to get to my brain and then put a camera in there?  Yes.  And then how will they get the tumor out?  With special tools, almost like a tiny vacuum.  Will I have a tube in my arm when I wake up?  Yes, just like before.  Can I watch movies?  Of course honey.  OK dada, I’m going to sleep now.  I sit beside her in the dark and shake my head in wonder as I have a thousand times before.

Last night a variant on the script, signs of molten pools beneath leaking out with greater force as the moment approached.   A tremor as she hugged a favorite blanket.   Dada I’m scared.  I don’t think I can sleep.  I think to myself ok no surprise, could be a long night, good god has she earned the right.  Then it’s dada are you scared and as I consider what balance of truth and optimism to strike she says it’s ok dada I’ll be right there with you and somehow I don’t fall completely apart.  Then she begins to talk of the new puppy coming her way, of trips later this spring and summer, of her upcoming school musical.  She recites her lines.  And then goes to sleep, her trip to the operating room but eight hours away.

As I sit there once more an old Dickinson poem comes to mind.

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.

Later, I sleep too, knowing once again that she will be ok because nothing else is acceptable.  To her.

Update:  Little did I know when I wrote this how the next 24 hours would be a microcosm of her path and resilience.  The initial report after surgery was that, yet again, part of the tumor had to be left behind.  Then she went through a scary few hours of unstable blood pressures and unexpectedly rocky post-operative recovery, with fears of a rapidly acting infection.  But she pushed through it.  Then she learned of the surgical outcome…because she asked and she deserves to hear the truth.  As always, she handled it astoundingly well.  And then her eternal hope was rewarded:  the post op MRI showed us that the apparent remnant left behind turned out to be normal tissue that was just altered a bit by the tumor’s growth, something very difficult to tell apart in surgery.  A gift she most certainly deserves.


11 thoughts on “Hope and Strength

  1. Beth Holland

    Dear Alan, My healing blessings, prayers and love are with you in the waiting room as you wait for Nene. Some days, many days, most days, I wish that your dance with the medical profession had unfolded differently. Thinking of you all, and am once again inspired by your courage and resourcefulness, beth

  2. Guila Laurence

    Hello Alan
    I just learned through your blog that Neva was undergoing surgery. Just to remind you I’m Guila from Montreal, the mom of Shirel that was diagnosed with a cranio back in 2015. Let me tell you that my thoughts are with you today. I totally can relate since Shirel had her surgery last year in November and your description of feelings and thoughts was totally the same. Just to let you know Shirel had a cyst drainage with an Omaya reservoir inserted in her head and then once the tumor was stabilized for a whole year she had proton radiation therapy in Boston this past summer. She just started having her growth hormone injections. For now, we’re lucky she doesn’t need other medication. I was curious to know what happened with Neva. I guess the tumor came back? How come you didn’t consider the radiation. We had such a good experience in Boston . Is Neva going again through a big surgery like last time? Hope everything goes well for her. Let me know when you have a moment the outcome. Good Luck!
    Sent from my iPhone

  3. Patty Strife

    Dearest Alan,
    I am just hearing of Neva’s surgery ..you both are in my thoughts and prayers.. your strength , faith and love is so incredible ..your little sweetheart is one very strong young lady ..you have so much to be proud of ..you are an amazing father .. God bless ..

  4. Allison

    Thinking of you and brave Neva, Alan….for sure her mother is watching over her….and many many other friends from every direction are pulling for you both…thank you for sharing your difficult journey with us.

  5. frank and linda de kort

    Thank you for sharing so truthfully the courageous journey of your family. Mae Nan Ellingson forwarded it to us. You have a remarkable daughter who has learned so well from her loving parents. And now we learn from her because you generously share. You and Neva and her skilled medical staff are in our thoughts. Gratefully, Frank and Linda de Kort

  6. Linda Giudice

    In reading your heartfelt post “Hope and Strength”, I offer my sincere thoughts and faithful prayers that Neva (& you) continue to have the strength that you need for each and every moment. That you never lose hope and are comforted always…..


  7. jpschimel

    Dear Alan and Neva:
    With slightly teary eyes, it’s hard to know how best to express my hopes and wishes for both of you–that in fact they really did exterminate the tumor and that this will be the last time you have to sit by her bedside waiting for her to roll into surgery and waiting to hear how it went. And that you can both get back on track to just living.

  8. Ged Moody

    Such amazing grace. Thank you for sharing. My heart and healing thoughts are with you both. I have no other words.


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