The Long Road Home

26 May

Eight isa pile of puppiesyears ago, our lives changed forever.

The doctor sat us down in the hospital room, his face full of concern. “We finally know what it is,” he said, quietly, “She has a form of leukemia.”

For two agonizing days, my husband and I had been pacing the hospital hallways waiting for the bone marrow biopsy to tell us what was wrong with our daughter. Now a pediatric oncologist with tired eyes and a stethoscope around his neck was telling us that our fourth child—our baby girl—had cancer.

Those ominous words should have expelled all the air from my lungs, buckled my knees out from under me, or caused me to run screaming down the hospital corridor—but they didn’t. Oddly, I felt only relief. We finally had a definitive answer as to why my two year-old was so sick. Yes, it turned out to be cancer—but at least we knew what it was and could immediately get started on saving her life.

I can do this, I told myself, not realizing that our ROAD TRIP TO HELL was about to begin. For the next two and a half years, our family would travel down that bumpy, pot-holed road, the gas tank running on empty, the tires balding and the radiator constantly threatening to overheat as we navigated our way through a cancer diagnosis without a map. Isa, strapped into her car seat, would thrash about in the back, sweaty and miserable as she crammed Lays potato chips into her mouth, the salty snacks the only food she ever wanted to eat. In the rearview mirror I watched in horror as my beautiful daughter morphed into this hairless, grotesque creature with a protruding belly and swollen cheeks. Her normally sweet brown eyes were filled with an unrecognizable fury caused by the steroids that we crushed into a white powder and mixed with cherry syrup, feeding it to her each night like a special treat.

The constant fear was the worst part—the multiple surgeries to infuse chemo into Isa’s spine; the weekly lab reports signaling her low blood counts which indicated a non-functioning immune system. This meant staying indoors, constant hand-washing and no visitors. A high blood count report meant that I could actually breathe again until the next round of chemo started. For years my hands rarely left Isa’s body as I felt her skin for any sign of fever. When her skin burned with a temperature over 101.5 it meant a trip back to the hospital—cool skin under my fingertips meant no infection and it was such an enormous relief it was like diving into a refreshing swimming pool on a hot, summer day.

Now, eight years after Isa’s diagnosis of cancer, the lives of our family have returned to normal—if there even is such a thing. Isa is perfectly healthy with no long-term effects from the chemotherapy. Now I can’t even remember the names of all the medications she took. Our daughter is blossoming into an intelligent and thoughtful young girl with a wicked sense of humor. Every day when I see her beautiful smile and hear her laugh, my heart fills with gratitude.

And although we are beyond delighted with our happy outcome, we do carry residual sadness in our hearts from losing children we have known and loved during this long trip. That sorrow gets easier as time goes on, but it will never go away. And I believe that’s a good thing—because in remembering those who have died, we are more apt to cherish those who are still here with us.

Aug 30 07 022

As we approach the eighth anniversary of Isa’s diagnosis, I’m truly thankful for what our family went through all those years ago. I’m grateful for the friends, family and those in the medical field who supported us back then—and who still support us today. I’m grateful that this experience changed me, and that I’m not the same woman I used to be. I’m more loving, more appreciative, more present in the moment, and more at peace with myself than I was before Isa got sick. I’ve realized how incredibly strong I am. I understand that there is only right now, and most importantly, that not only is it acceptable for me to put myself first at times—it’s often necessary. After all, I’m the one behind the wheel.

Our long road trip was arduous and exhausting and I consider it a miracle we arrived home safely. I’ve no doubt there will be other journeys as our family navigates down that long road of life, but lately it’s become a much smoother ride. So smooth, in fact—that now we can actually take time to roll down the windows, breathe in the sweet spring air and marvel at the scenery.

8 Responses to “The Long Road Home”

  1. Hildegard | whphotoplus May 26, 2015 at 12:00 pm #

    Thank-you for writing this very sensitive and uplifting piece. I’m happy that your daughter is doing well, and that all of you have come through this for the better. Sometimes we need these reminders. Beautifully written! Best wishes. Thanks!

  2. Mele May 26, 2015 at 12:01 pm #

    Wow! has it been 8 years already? I have a photo that pops up on my digital frame at work of JJ and Isa taken the Easter before her diagnoses and EVERY single time I see it I marvel that this seemingly healthy toddler has a beast lurking in her about to change everyone. Words cannot express how happy we are that we sit here today talking about all this in the past tense and Isa has replaced the fury in her eyes with sass and her bald noggin for some of the most georgeous hair imaginable! Throughout it all you guys were, and are, amazing. The family unit that you Mireles share is a sight to behold and frankly I think you guys just scared the shit out of the cancer as it KNEW it could not beat your united front! Hugs and Kisses to all –

    • Allegro non tanto May 26, 2015 at 12:03 pm #

      If anyone is amazing, it’s you! Thank you for always being there for us, especially after everything you and Tony went through losing Gillian. You are the sister I never thought I’d have. LOVE YOU!

  3. Liz May 26, 2015 at 12:30 pm #

    “let’s do ‘gain…” OMG that video is PRICELESS! I always love your posts Jessica – can’t wait to read your novel – but this one is extra special. I, no WE, are so very happy that Isa is healthy and thriving. It is clear you were a very loving family before cancer, and I can only imagine how living that journey along with Isa has changed each of you as people. From fantastic to uber-fantastic. No doubt each of you is far more compassionate than you could have been without these experiences. Thanks for sharing so beautifully and poignantly on your blog. xoxo Love to your whole family!

  4. Britton Swingler May 26, 2015 at 3:34 pm #

    Happy, intense tears as I read this, love. I feel so much relief for you, awe at how on earth you weathered that unfathomable storm, and gratitude to know someone as amazing as you. You are persevering, strong, honest, dedicated, talented, loving, human, and wickedly good at gardening (what I’ve missed notwithstanding). You’re also really good (yes, I know we writers should eliminate those seedy “reallys,” but it’s necessary here) at making me cry. Here’s a few tender wet ones for you, Isa, and the rest of your precious brood.

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