Mia’s Story: Beauty and Cancer

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Lisa Jacobs Gurevitz 

“Your daughter has a mass in her brain.”  That’s me.  That’s us, our family, living, laughing, loving and crying our way through our younger daughter Mia’s brain cancer diagnosis since November 2011.  “How do you do it?” we are always asked.  We just put one foot in front of the other and breathe in and out all day long.  And it sucks, it really does.

We go through the routines of our daily life, sometimes with forced enthusiasm, sometimes with authentic smiles  and we press on.  We can’t return it, ignore it or forget about our unwanted family member, Cancer.

Along with cancer, come its aptly named cousins anxiety, stress, and fear.  The anxiety we see in Mia, in my husband Dan and I, how it affects our older daughter Rachel, is woven through the blanket of our lives and comes with us everywhere we go. I wish I could say this blanket is cute and cozy and comforting.  Instead, it is heavy, cumbersome and ugly.

These unwanted relations are not going anywhere anytime soon.   For Mia, 5 1/2 years old and just starting Kindergarten, it is very apparent.  We see how anxiety has crept in and taken hold of so much of her life.  Crowds, loud noises, any change in routine, it has shaped her and how she goes about life. She gets stubborn, scared, controlling, sometimes irrational.  I won’t get into details, but Mia has had several anxiety attacks that have resulted in ER visits.

Positive vibes only, indeed.
Positive vibes only, indeed.

One visit resulted in my close to refusing the standard tests they do for oncology patients.  I knew it wasn’t tumor or shunt related.  The ER doctor looked at me like I was crazy when I told her it was an anxiety attack.   When you see your daughter hyperventilating in a restaurant from the smell you know why and you never forget that image.   Now don’t get me wrong, she is sweet, feisty, loving and hilariously awesome. But it’s sad to see how this disease manifests itself in ways you wouldn’t imagine.

For me, well that’s a whole different story.  Each time the phone rings when the kids aren’t with me my heart races, palms sweat, my hands get shaky and I say, “Shit.  What now?,” either out loud or to myself.  Until I see who is calling, I always assume it’s school or camp or a call from wherever Mia happens to be telling me there is an emergency.

When I am out in public attempting normalcy by meeting a friend for coffee or shopping at Target I forget my words, lose my train of thought, drop things.  It’s comical.  And pathetic.  I get so overwhelmed sometimes that I retreat and need to be home and don’t want to put that brave face on and do the things that come so easy to others.  I can shut out the world if I need to, except my phone is always on because I am perpetually waiting on that call I mentioned above.

This is how we roll, always ready for a trip to the ER, always having to be flexible with plans, always planning our days around what is best for Mia, how things work with her schedule, carrying ‘barf buckets,’ and changes of clothes, and anti-anxiety meds, and a host of other things.

My husband and I enjoy the music of The Grateful Dead.  I have for much of my life, as has Dan.  When the band announced their Fare Thee Well shows I so badly wanted to go, but knew it would never happen because getting out together, especially for more than a few hours, is difficult. We have some great friends and family members always willing to watch the girls, but we just never know how Mia will do no matter how comfortable she is with whoever watches her.

We gave up on going and planned to watch and listen via satellite.   It turns out that we were gifted with tickets to one of the shows, in a suite no less (extreme gratitude to E & S).  We were able to make it work with a split shift of sitters (thank you A and M) and off we went.  The whole time we were gone I was so certain something would happen and we would have to leave, I almost worked myself  into a panic attack.

The show was amazing, and even though we checked in a few times every hour Dan and I were able to enjoy ourselves and take it all in.  We got to experience a rare weekend night out, enjoying our favorite music and at the end got to breathe a huge sigh of relief that no emergencies arose.  So rare, so simple, so grateful.

Dan and I find comfort in knowing that we are the only ones that truly get this story of our family, riding out the unknown and scary ocean that is our life.    And we should cling together more in our little lifeboat instead of sometimes wanting to push each other overboard.  The toll cancer takes on a family is vast.  Our older daughter Rachel (4th grade) suffers too.  We try to do right by her and for her and yet we feel like she always ends up with the short stick of being a sibling navigating these waters.

Mia and Rachel, sisters.
Mia and Rachel, sisters.

How is Mia doing these days?  If you look at her she seems like any other kid her age, albeit a miniaturized version.  She’s happy, she loves camp and school, her dance class, her friends, snuggling, emojis and frozen yogurt.

At the end of July, we learned that after a year of stability on her fifth chemotherapy regimen followed by six months for off-treatment stability, there has been tumor progression and she needs to restart treatment. The sixth regimen is being taken via g-tube, which makes it so much easier to administer for both Mia and us.  And insurance approved it all after a long delay.

Beauty and cancer.  You wouldn’t think they go together, but they are related.  Cancer shows you what this is all really about and what matters.  And what doesn’t. Perspective changes as do we.

Mia and family.  Photo by Flashes of Hope
Mia and family. Photo by Flashes of Hope

Mia is thriving in her own way and we see the beauty in all of this clear as day.  Yet on super awful days we are still thankful for what we have now, because one day we may be fervently wishing and hoping we could go back to these easier days.  So twisted, so sad, so true.

Without love, day to day

Insanity is king.

J. Garcia/R. Hunter

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This is an update to Mia’s Story was first shared in 2013.  You can read that post HERE.

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