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Today She’s Okay

While we were in Florida on Rebecca’s Make-A-Wish trip to Disney (and other parks), we were asked a few times which of our kids was the Wish kid.  And I suspect that quite a few more people just assumed it was Carolyn, since her hair is still buzz-cut short.  Rebecca was able to fully enjoy the trip and be an active part of it, every bit as much as her siblings and cousins, and the pictures and videos we all took are full of laughter and excitement from all of the kids.

This has been one of the many fortunate aspects of our misfortune: Rebecca has never really been sick, in the “I feel ill” sense of the word, since she recovered from her surgeries last fall.  The tumors in her head haven’t had any measurable neurological effects, and if they’ve made her a little more irritable or irrational, well, this is a five-year-old we’re talking about.  How could anyone tell?

Even the chemotherapy and radiation therapy had no major side effects.  We tend to think of cancer patients as thin, pale, bald, weak, and vomiting, as much from the toxins we pour into them as anything else.  Rebecca has remained as energetic, luminous, and irrepressible as ever.  Now that she’s stopped her Avastin treatments, she’s able to go back to gymnastics class, and is eager to do so.  She’s even kept a full head of hair, albeit with some loss of hair volume.  We can see that there’s less hair, but a random passerby on the street would never suspect she was a cancer patient, let alone near-terminal.

Thus our new mantra: “Today she’s okay.”  We don’t know what tomorrow will bring; but really, who ever does?  We live with a more present, known danger than most, but today she’s a normal kid.  She’s so normal that even we can forget, sometimes for hours at a time, that she’s terminally ill, that a lump of runaway growth sits behind her eye and threatens to one day kill her.  She’s so normal that we have the space to make our family’s life (mostly) normal.  We hope that tomorrow she’ll be the same.  Whenever our fear of that tomorrow rises, we say to ourselves and each other: “Today she’s okay.”

We’re still working to find treatment options, of course.  There are some promising leads developing even as other leads that looked promising have been closed to us.  A driving force in that search is the desire to keep her as healthy as possible—to preserve her quality of life while still trying to extend the quantity of her life.

It’s a balance almost incomprehensible in its gravity: to decide how much quantity to risk in exchange for protection of the quality, to decide how much quality we can sacrifice in an effort to add quantity.  Before all this, I would have thought maintaining that balance would be paralyzing, but it isn’t.  If it ever starts to become so, we have only to look at her, still full of life and vigor, to know what to do.  We may be the captains of the ship that carries her, but we steer it by the light of her star.

Today she’s okay.  And so today we’re okay.

13 Responses»

    • #1
    • Comment
    • Fri 18 Apr 2014
    • 1726
    Barbara wrote in to say...

    Trust the light of that star to lead you day by day.
    Your sharing this journey is a blessing to others. Your family is in my prayers.

    • #2
    • Comment
    • Fri 18 Apr 2014
    • 1740
    Antoine Butler wrote in to say...

    Here’s to many more today’s. This was a welcome read, and I hope to hear more about these good days. It’s what we should strive to live and be remembered for.

    Shine on.

    • #3
    • Comment
    • Fri 18 Apr 2014
    • 1759
    pixelsrzen wrote in to say...

    Thank you for continuing to post. Best wishes for finding the best treatment options. Try to keep from taking too many dead end paths. There’s lots of snake oil salesman ready to prey on folks looking for hope beyond hope.
    Best wishes to you and yours, always.

    • #4
    • Comment
    • Fri 18 Apr 2014
    • 2015
    Doug wrote in to say...

    Eric, you’re breaking my heart with these. I hope Mickey Mouse sees enough of Rebecca to learn her name.

    • #5
    • Comment
    • Sat 19 Apr 2014
    • 0917
    Dawn wrote in to say...

    I had no idea Eric. Thank you for your post about “Today”. I will pray for Rebecca. You don’t steer that ship alone.

    • #6
    • Comment
    • Sat 19 Apr 2014
    • 1935
    Jonathan wrote in to say...

    I’m so thankful for each new day you have with Rebecca.

    You wrote before of the flight of her life being far — I’m know I’m not alone in saying Rebecca, through your writing, has left an indelible mark. These moments you share remind me to cherish each moment I spend with my own daughter and live more in the present. That’s quite a gift to give to the world.

    Here’s to many more todays.

    • #7
    • Comment
    • Sun 20 Apr 2014
    • 0003
    Tracey wrote in to say...

    You and your family remains in our prayers.

    Thank you for sharing a poignant reminder to live in the moment, be fully present for my own children, and appreciate what I have today.

    • #8
    • Comment
    • Sun 20 Apr 2014
    • 0518
    pol wrote in to say...

    “Here’s to many more today’s. This was a welcome read, and I hope to hear more about these good days.

    Shine on.”

    THIS

    • #9
    • Comment
    • Sun 20 Apr 2014
    • 0526
    Sandra Grauschopf wrote in to say...

    Should I ever be faced with something like this, I hope I will be able to face it with so much grace.

    • #10
    • Comment
    • Sun 20 Apr 2014
    • 1141
    David Hund wrote in to say...

    Thank you for sharing Eric. We named our oldest daughter Rebeccah and reading Rebecca’s name alone makes me think of how _we_ would deal with such a reality. This is, of course, impossible and I quickly try to abandon the thought and flee the resulting, physical, feeling of terror (a luxury you ‘t have, I guess). Knowing my worries over even small things with my daughters I cannot imagine the horror you must be going through…

    It does, however, make me so very thankful for my daughters and the health we’re in. It also makes me want to slow down a little bit, live in the present, _enjoy_ our blessings and spend more quality time with my girls.

    I apologize if my ramblings add to the contrast you might feel between your situation and that of others’ but I simply meant to say that, in some way, you sharing your terrible experience is having a very positive effect in my life (and I’m sure that of others). So: thank you.

    You remain in my thoughts and we all hope for Rebecca.

    • #11
    • Comment
    • Mon 21 Apr 2014
    • 0938
    Robert Achmann wrote in to say...

    I was searching for answers to a development problems I had. I now think I have no problems. I am a father as well, and I am glad you shared all that you have with me (us). You are all very brave, this being especially true of your daughter. For whatever it’s worth, We wish each of you only the best.

    • #12
    • Comment
    • Tue 22 Apr 2014
    • 0852
    Mikkel wrote in to say...

    Thanks for sharing this uplifting news about your family situation. You have all my warm thoughts and prayers for the future.

    • #13
    • Comment
    • Thu 24 Apr 2014
    • 1600
    hawkse wrote in to say...

    So very true. The burden and responsibility of being a parent is also the major source of energy and motivation in itself. Not only do the children infect us parents with their joy for life but also their incredible grasp of the now. Still learning lots from your posts. Thanks again for sharing.

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