The Day After

At birth, this blog was to be about environmental science only.  But I tend to write as a response to deeply felt moments in life, regardless of the topic, so this site has evolved into a more personal space than originally intended.  What’s below is as much just a way for me to take a small step forward as it is for any other purpose.  But maybe it will help some of you too. UPDATE: The support we have received from friends and family near and far – and from so many we don’t even know – is astounding, uplifting and humbling.  The internet can suck, but damn can it come through as well.  Thank you all. 

Yesterday, seven simple words changed my life.

We found something on your daughter’s MRI.

More words followed.  They included tumor in the pituitary gland (bad), almost certainly not malignant (good), still will require brain surgery to remove (bad), often has a high rate of recurrence (bad), still can be managed well (good I hope), only will know for sure following pathology tests (no idea how to react).

Somehow you process those words and you even find a way to ask pertinent questions.  You do this because while you silently begged and hoped and prayed that the news would be different, entrenched firmly in your gut was the realization this was coming.   The data already pointed the way.  Daughter’s age four, effective bone age two.  Headaches now a regular occurrence.  You take those and other data and you google and you read and you pull articles from the primary literature and the biologist in you penetrates the coldly clinical presentation and arrives at yet another word: craniopharyngioma.  So in some terrible way, you were prepared.  There are times when you wish the scientist in you would go away.

But the scientist remains, now on autopilot, asking the team of doctors before you for a clarification here, a deeper level of detail there.  You play your biologist card so that detail will be shared, you try to synthesize and project upon that detail, and even find brief moments of comfort in the familiarity of the exercise.  And then your mind jumps incongruously to a meeting only last week when you went on and on about science for solutions and you feel like an asshole because now you are desperate for a solution.  And you know that science has a role but that ultimately the fate of your child so small and perfect and essential is soon to rest in the completely human hands of a neurosurgeon you have not even met.

And then you drive away from the hospital.  Your daughter, scared and crying as she awoke from general anesthetic only two hours prior is now happily refueled, chattering away from her car seat as always.   Your wife, wise and balanced as ever, realizes that you all need some patina of normalcy so you impose for dinner upon friends you now hold dear on an even higher plane.  You watch your daughter play happily with her own friend, and you even manage to have a drink and tell stories and momentarily push the fear and pain aside.  You call family, you text other friends, and you watch them to a person instantly mobilize for you in each of their own unique ways.  And you are at once awash in overwhelming gratitude and cancerous fear.

You hold it together for the evening but when you watch your daughter laugh and run and hug her friend upon preparing to leave  – as she always does – you nearly fall apart.   You try to mask the tears behind a cascading armful of tiny coats and shoes and socks as you head quickly for the door.   You feel some shame for trying to mask the tears at all.  You and your wife hold hands as you drive but you say very little.

That night, you bring a sleepy little girl into bed with you under the transparent excuse of making sure there are no post-anesthesia complications.   You put her between the two of you and the comfort of her proximity allows you to fall asleep, but you wake frequently, spending hours just watching her breathe.  You feel as though you will, at any moment, simply shatter into a million brittle shards of something that once was but can no longer be.

But you don’t, because you can’t.  Because when the youngest yet brightest flame in your life is suddenly flickering, all other lights go out.  Your existence, no longer a cacophony of largely meaningless events, is now terrifyingly simple and important.  You know where you must end up, even if you don’t know how you will get there.

And then, it is morning, and she awakens as though nothing has changed.  She bounces downstairs, she torments the dog, she perches on the kitchen counter to help you make her pancake, she insists on the daily routine in which you pretend you will eat the pancake you both know is hers.

And you realize that she will lead you through.

15 thoughts on “The Day After

  1. johnrussell40

    Alan,
    It’s awful news and I can’t start to imagine what you’re going through. Perhaps telling you my story will help a little.

    I had an adenoma on the pituitary in 1984, when I was a young man. Following numerous scans I had trans-nasal brain surgery and it was removed. Although it was early days and science has moved on considerably during the intervening 30 years, through the skill of a very good surgeon the outcome was highly successful. I’ve lead a completely normal life ever since, starting several businesses and bringing up three sons with a loving wife.

    I’m sure things seem dark at the moment. It will get better. Put your trust in the medical profession, who I know will be doing their absolute best for your daughter. My thoughts are with you.

    Reply
  2. jim neidert

    Alan
    Dedee forwarded your blog to me, I’m in Nepal. Is it in bad form to say you write too well for a scientist. You and your family are in my thoughts and will be until you daughter brings you out of the other end of this tunnel. And you will get through it as well as she as long as you continue to be able be aware of your thoughts and emotions and to process them as well as you did in that blog post.

    jim neidert

    Reply
  3. Jen Tank

    Dear Alan-
    Was truly touched by your post- Sending healing thoughts your way. I can only imagine how scary, but trust your daughter will inspire strength you never knew you had. Her life force sounds amazing…. It will surely prevail.
    Sending a hug.
    Jen Tank

    Reply
  4. Nancy

    Alan, So sorry to hear about this. However I can help you and Diana as you embark on this difficult journey, please let me know. Take comfort in the experience of others who have made it though, like John in the previous post. My thoughts are with you, I know you all will make it and it will be ok – big hug to Neva and all of you. Sending love. nbg

    Reply
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