Wednesday, May 7, 2014

A Year to Remember

I have walked away from this post about 15 times this week. I'm anxious to write but stuck in so many ways. There are a lot of emotions I want to pin down before they escape. Forgetting is a huge fear but also a reprieve. There are things I wish were a distant memory, like this whole cancer business. But then there are things I want to recall so desperately and yet the memories are fading fast. Like my pre-cancer Ava, for example.

During that first week at Lurie's, there was a photograph opportunity with an organization called Flashes of Hope. Their main goal is to provide beautiful pictures of children during their fight against cancer. Even though we were all feeling pretty lousy, we took the chance and smiled for the camera. At our last clinic, we were given our developed pictures. I couldn't believe how much Ava had changed since that day. 

Her hair has disappeared only to be replaced by a few wispy strands that she pats down when she catches a glimpse of herself in the mirror. It's so painful that I want to forget this year. 

Then I watch them playing together, hanging on each other for fear that chemo might tear them away at any moment. I see how much they've grown in their friendship together and I want to remember this year. 

Her frail frame has been traded in for a sturdier build resulting from the high doses of steroids she's been on. She lumbers around with her head down asking for more food but hating her desire to eat. We tell her she's beautiful but she's not convinced. I want to forget this year. 

I make myself do the dreaded deed of sorting through her clothes to find something more comfortable for her expanding belly. I work quickly trying not think about how clothes remind me that I need to shop this year's sales for next year's wardrobe but I can't because I don't know what next year holds.  I stumble upon a dress that reminds me of happier times and suddenly I smile. I want to remember this year.

I see the shy look she gave the photographer that day, which is now captured on a black and white 8X10 to remind us that she once knew a childlike innocence. I want to remember, so very badly, life before cancer. 

"Mom, I don't feel like a kid anymore. I feel my bones, like a grandma," she says to me one morning. "I look in the mirror and I can't believe that is me."

As if the physical pain were not enough, cancer brings about an emotional weight like no other. Watching my child struggle with accepting the changes she sees in herself breaks me. And I so badly want to forget this time in my life. I want it to be quick and brief and painless. But then I stop myself because I wonder if I am wishing away life. This is the life we were given with its ups and downs and its beauty and pain. It's not perfect but it's what we have. 

I'll remember this year as a bookend year. It began with us almost losing Ava to anaphylaxis days before her 5th birthday. I promised people I would update them on my previous blog but I never did because it was just too fresh. I'll never forget that summer night when I accidentally fed Ava rice pasta that was cross contaminated with water from a pot of wheat pasta. It only took a few drops of the contaminated water to trigger a massive allergic reaction. As she lay in Mike's arms after her first Epi-pen, she began to turn blue. I was upstairs throwing together our hospital bag when Mike's scream hit my ears. I ran down to see him shaking our slowly fading daughter awake. 

By the time the ambulance arrived, Ava was slipping in and out of consciousness. We administered a second and then a third Epi as the ambulance raced toward the hospital. We had to leave Mike and Gwen at home because, in our delirium, we had left the front door wide open and the EMT's wouldn't let us bring Gwen on. As the ambulance peeled away from the driveway, I remember thinking that this could be the worst decision of my life. Because if Ava had died that day she would have left without being surrounded by her family.

The EMT's and I worked together to revive Ava. We slapped her lightly, and then began to shake her more vigorously as she became increasingly quiet. Her every breath was labored and I could see that she no longer heard my desperate pleas to stay with me, to stay alive. She was so intent on the act of breathing. Something we easily take for granted, she fought viciously for that day. Watching her breathe in, I pleaded with her not to die. Watching her breathe out, I could see her struggle to live. And on and on we went--her grappling for life and me imploring her not to give up. It probably only took 15 minutes to get to the hospital but, to us, it was a lifetime. Immediately upon arrival, Ava was given a fourth dose of epinephrine that stopped the reaction. We were discharged from the hospital the night before her birthday and we celebrated her day with a much deeper appreciation for life.

That same summer a little girl died while on vacation with her family. After unknowingly eating a rice krispy treat with peanuts she went into anaphylactic shock and, soon after, died in her parent's arms. She received three Epi-pens that day and her dad was even a physician. Yet she died while Ava survived under similar circumstances. This drives us to our knees in humble acceptance of His grace.

Tomorrow she will undergo a biopsy that will hopefully give us a clearer picture of how to proceed with her treatments. We are terrified that our new "normal" will be disrupted again but we have enjoyed the beauty in the mundane this past month. Depending on the outcomes of the biopsy, our lives will change in distinct ways. Please pray with us that Ava's biopsy would reveal ZERO percent blasts and a negative MRD. 

Ava will turn 6 in August and, most likely, she will still be fighting for her life when she celebrates her birthday this year. But even with its ugly and sad moments, I want to remember this bookend year because of all that we've learned and experienced through the pain. We laughed often, loved deeply, cried intensely, grew immensely and lived with renewed passion for each other this year. And, most of all, we decided to give all of ourselves to the people around us without calculating the benefits or counting the cost. 

That makes it a year worth remembering.

"You're going have all of me because you're worth every falling tear. You're worth facing any fear. You're going to know all my love, even if it's not enough, enough to mend our broken hearts. But giving you all of me is where I'll start." -Matt Hammitt


Anonymous said...

Praying for zero <3

Anonymous said...

Hope this journaling brings some relief, even if for a wee bit. Standing with you in faith and enduring strength. Siew-Kim.