6 Jan

Two beautiful ladies: Kat and Lexi

My friend Kat is waiting. She waits while she puts the dirty laundry into the washing machine, she waits while she scrubs the kitchen sink, and she waits as she bends over to pick up toys strewn about the living room floor. Every time she takes a breath she is waiting.

When your child has cancer, you wait.

It’s exhausting—all of this waiting.  It’s especially wearisome when Kat has to wait in her daughter’s hospital room while Lexi gets her most recent dose of chemotherapy. I know firsthand how difficult it is to spend all day and night in a bleak hospital room, where time drags on and on and terror makes itself comfortable in your stomach like an unwanted house guest.

When the current round of chemo is finished, Kat takes Lexi home, where she waits to see if her daughter’s suppressed immune system will be strong enough to fight off any infection. She waits for the fever to come, and it usually does. She travels back and forth to the hospital (sometimes every day) to draw blood and check Lexi’s hemoglobin and platelet counts.

Lexi in the hospital.

At the clinic, Kat waits patiently while the nurses fuss over her daughter—they can’t help it because Lexi is special. She’s smart and funny and precocious, and she’s one of their favorite patients. Kat laughs and jokes along with the staff, even teasing the doctors at times like they’re family—and indeed, because of this nasty thing called cancer, they have become just like her family.

She waits for Lexi’s white cells to go back up. She waits for her daughter to feel better. To Kat, seeing Lexi feeling good is as calming as putting on a pair of warm pajamas fresh from the dryer—soft and safe and comforting, even though she knows the warmth will only last for a short while.

Then Kat waits for the phone call from the clinic to see if the chemo has done what it’s supposed to do. This is the most excruciating waiting of all. It’s especially difficult when the voice on the other end tells her that Lexi is not in remission and that she has to go back into the hospital for more chemo—this time for a stronger form with even more side effects.

Kat has been waiting a very long time for her three year-old daughter to go into remission.  And she can do nothing but pray and hope and wait, because Lexi must have a bone marrow transplant to live.

Lexi, before her diagnosis of leukemia.

A mother should never have to think that her child could die. It’s an agony beyond comprehension. The love that we mothers hold for our children is so infinite that the mere idea of the possibility of their death drags us into that suffocating room of unthinkable anguish.

Before my daughter Isabella’s diagnosis of leukemia over four years ago—before I even knew what real fear was about, I foolishly tormented myself by visiting that room in my mind every so often.

For years I had a bad habit of waking up in the middle of the night and letting my imagination run away with me like a child on a bicycle speeding down a steep hill. I’d squeeze the hand brakes a little so that the fleeting images in my head would start out slowly and relatively innocuous. Maybe I’d picture one of my kids falling and chipping a tooth, or perhaps slamming their fingers in the car door.

It never stopped there, though. As I pedaled down that dangerous hill of make-believe, the pictures in my mind always became more graphic. Within a few minutes, I’d have come up with some insidious scenario involving my children and electrical sockets, watching them running out in front of a speeding car or worst of all—finding their lifeless bodies at the bottom of our swimming pool.

It was a very sick habit—this making up of horror stories. I don’t even know why I allowed myself to do this, but the more I practiced the better at it I became. I was like a veteran film director shooting a climactic scene; it was absurd the variety of dreadful endings I could come up with! And my mental movies never had a happy ending.

At times, these visions snatched the breath right out of my lungs as I laid there in bed, the stillness of the night amplifying my terror. But even then I knew these thoughts were just figments of my neurosis, that it was just a stupid game I played in my head. I could shake it off, pull the covers back up to my chin and go back to sleep. I could forget all about it.

And then I couldn’t forget about it, because it became real. And never once did I imagine my child getting cancer as the ending to one of my movies.

So I went through my journey with Isa’s cancer, because I had no other choice. As much as I wanted to, I couldn’t close my eyes and go back to sleep—I had to face the reality that my child could die.

I sat and waited in the very same hospital rooms as Kat. I’ve made friends with the very same nurses and I’ve even teased the same doctors. I’ve waited in agony for those anxiety-producing phone calls. I’ve cried, I’ve worried, and like Kat, I’ve had some very bad days.

Isa in the hospital on her third birthday, bald from chemo and bloated from the steroids.

Fortunately, I’ve had more good days than bad. I’ve made it through to the other side. Isa’s leukemia was the kind that has the highest cure rate, and she had all the criteria for a good outcome: her young age, her genetic and chromosomal make-up and most importantly, she responded rapidly to the chemotherapy.

I’ll never forget waiting for the doctor to call and tell us whether or not Isa’s cancer had gone into remission. On that warm summer afternoon when I answered the call from her pediatric oncologist, my stomach knotted as I braced myself for the worst. When I heard those words on the other end of the phone “absolutely no more leukemia cells in her bone marrow,”I sobbed tears of joy and relief as I fell into my husband’s arms—so thankful that such a burden had been lifted off our shoulders.

Mommy and Isa at the beach, December 2011

Since I began this  journey with Isa’s cancer, I’ve stopped my late night visits to that room of imaginary horror—there’s no need to go there. There never was. I’ve grown and changed and learned to live more in the moment. I’ve felt the love and concern from friends, family and even strangers pour into me like warm milk and honey. I’ve been overwhelmed by the sheer goodness of people and I’m forever grateful that my real-life movie turned out to have a happy ending after all.

Isa today, hair all grown back.

Though I don’t presume to speak for Kat, I know that she has had many of the same kinds of experiences and is thankful for those who have helped her along the way.

Lexi has a long road ahead of her. Her leukemia has been difficult to treat. When she finally reaches remission (and I believe with my heart and soul that she will—I have to believe this), Kat will have to begin the process of waiting again as she takes her baby girl through the bone marrow transplant. She will have lots of help along the way because although cancer is a terrible disease, many incredible things begin to happen when a child is diagnosed.

And Kat will have her happy ending, too—I just know it.

A mother will wait for as long as it takes.

Lexi and Kat at the Teddy Bear Cancer Foundation Christmas Party

15 Responses to “Waiting”

  1. Cathy January 6, 2012 at 10:01 am #

    Powerful. And what a strong mama Kat and baby Lexi that they are still smiling. Still believing, insisting, hoping. And waiting. Strength that surely transcends. And your story Jessica, perhaps you awoke those nights imagining the worse so that on some level you might be prepared for what came next.

    My best wishes go out to you all…

    • Allegro non tanto January 6, 2012 at 4:24 pm #

      You know, you’re probably right about me preparing myself. We never know what is going to come our way, but perhaps I somehow had an inkling. I must tell you, Cathy– you really have a gift for writing such wonderful, encouraging and uplifting comments in our blogs. Thank you for this.

  2. monicastangledweb January 6, 2012 at 3:07 pm #

    This is so very poignant and pulls at every mother’s heart strings. My best to you and Kat. We want the best for our children, and that includes life.

    • Allegro non tanto January 6, 2012 at 4:27 pm #

      Childhood cancer is so tragic, especially for a mother. To see your child suffer is the worst thing on earth. Kat (the mother in my post) is such a rock. She keeps getting tested and always manages to stay strong for Lexi. She has no other choice.

  3. Kristin Schwartz January 6, 2012 at 9:33 pm #

    This post really got to me. It’s honestly a mother’s worst nightmare. Having watched Mary go through this with Steph, I’ve always prayed with all my might that my kids would never suffer any bad health or disease. I can’t imagine a worse torture for any mom. Thank God you made it through the woods and I hope we’ll be able to say the same for Kat real soon. God bless her and little Lexi!

    • Allegro non tanto January 6, 2012 at 9:48 pm #

      Every night when I tuck Isa into bed, I thank God and the Universe above for letting me have Isa for another day. I’m a lucky woman to have learned that all I need to do is continue to love those around me like they’ll be gone tomorrow. Because you just never know. Love you, Kristin!

  4. Margaret Cofield January 6, 2012 at 9:50 pm #

    This is beautifully written!!! I cannot express the deep emotional connection that I feel In my heart and with my tears at this moment. My heart aches for Kat and Lexi while at the same time is more than thankful that my daughter, Maddi, and your Isa have come out the other side. I continue to wait, but much more patiently as each post transplant day passes.
    Praying for Lexi xoxo
    Margaret Cofield
    Margaret Cofield

  5. Allegro non tanto January 6, 2012 at 10:03 pm #

    We have been blessed, Margaret– not only because we still have our girls, but also because of what we’ve been through, they are that much more precious.

  6. Deborah Batterman January 7, 2012 at 10:15 am #

    There is something, indeed, about being a mother that takes us to that late-night room of imagined horrors. To this day, ‘The Runaway Bunny’ remains a metaphor for my belief that can i always there protect my daughter (a grown woman now). And yet, all too often, it’s those real crises that test us and remind us, as you so poignantly put it, to cast aside the imaginary ones. Nor am I a stranger to that sense of waiting you capture so vividly.

    • Allegro non tanto January 7, 2012 at 1:05 pm #

      If we had only known when we decided to have children that so much waiting, worry and heartache comes along with being a parent. We probably would’ve thought twice about it! But then again, we also didn’t know how much joy, hope and love that they would bring into our lives. I wouldn’t trade it for the world.

  7. Becky Green Aaronson January 10, 2012 at 8:30 am #

    Jessica, you touched on every emotion. The complete lack of control one feels while waiting is enough to take one down, even though there’s no choice but to go on and be strong.

    You have a beautiful gift to share, and I’m so glad you have found this outlet. Undoubtedly, you will help many others struggling with this insidious disease. Thanks for doing what you do–and for doing it so beautifully. I have shared this post several ways and hope your words help light the way for others. Sending extra good thoughts to Lexi and her family!

  8. Allegro non tanto January 10, 2012 at 10:04 am #

    Thank you so much Becky for your help in sharing this post. Stories like Lexi’s are inspiring to say the least. More and more children are diagnosed with cancer every day, and if talking openly about their struggles helps raise awareness about pediatric cancer, then I’m going to keep writing about it!

  9. Nurse cyndi January 14, 2012 at 2:54 pm #

    Once again, beautifully written words by a loving mother and wonderful friend. I BELIEVE it too. Praying every day for our precious Lexi girl.


  1. The Luck of the Irish | The Art of an Improbable Life - March 17, 2012

    […] helping people with Post Traumatic Stress Disorder, working to eliminate plastic bags in Africa, helping families grappling with cancer,  or showing people with dyslexia that it’s possible to become a professional […]

  2. The Art of Gratitude in the Blogging Community | The Art of an Improbable Life - March 24, 2012

    […] Jessica Winters Mireles at Allegro non Tanto […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: