Special Announcement

Every night at dinner, we talk about two things: our favorite part of the day and our greatest challenge of the day.  Sometimes we laugh together, sometimes we problem solve, and sometimes we talk about a better way that we could have handled the situation.  This is a part of every night that I treasure.

At the dinner table last night, Kelsey shared that she had a “special announcement” to make.  

“Family,” she formally addressed us first, “there is something that has been on my mind lately.  I wanted to tell you about it.”

“Here we go,” I think.

“I have learned that the world can be beautiful and full of happiness or it can be mean and cold.”  Her father and I looked at each other without really knowing how to respond.

“How at five years old has this been on her mind lately?” you may wonder at first.  Then you think back over the past few months that she has endured: a hospital stay, four emergency room visits, weeks missed of dancing school, days missed of Kindergarten, an emergency visit to the NIH, steroids, a more potent medicine, a daily injection to better manage her pain, and the giant red patches that itch her and hide under her sleeves and her pants as a reminder of that daily torture.  You think about the wonderful moments of the past month alone, including: singing Christmas carols, Santa Claus coming to town, a holiday show, family time, snuggling with her puppy, baking cookies, making ornaments, and watching holiday movies.

Thinking through all of the sorrow and triumphs, all of life’s challenges and favorite parts that we relive every night, I inquire, “What makes you say that Kels?”

“It’s just something I’ve been thinking about lately.  Most importantly, I really wanted to say, thank you for making the world beautiful for me Mom and Dad.”

Profound.  Insightful.  Beautiful.  

Painful and joyous simultaneously.  Her announcement gave me all of the perspective I needed to end the day (and 2016 for that matter) with a smile.

Here’s to hoping that 2017 is filled with far more beauty and much less pain for my beautiful daughter.

To many more favorites than challenges for you and yours in the year ahead, and to many more special announcements…

Five Years Ago Today, Another Flare to our Dismay

This week life seemed to be back to normal for Kelsey.  Her spark seemed to reignite and her happiness in all things was evident everywhere we looked.  It was glorious to see the pain fading away from her face.

When Santa came down the street equipped with both candy canes and dog biscuits, she jumped up and down squealing, “This is the best day!”  She meant it.  It had been months since that glow lasted an entire day.

It was short-lived.  She woke up with a fever in the morning and the cycle began once more.  It was not alarming high and her joints seemed to be unaffected.  She became hysterical at the notion of a visit to the doctor.  I could not blame her.  I rubbed her back calmly, wanting to scream at the top of my lungs.

At first, we hoped this fever signaled your typical ear ache or throat pain, the kind that all kids get at one point or another.  We do our best to cover all bases before we explore a potential flare.  It is becoming exhausting.

Sunday morning presents a certain struggle for medical care, but we wanted to rule out the common ailments before we spent another day in an ER.  

After relaying all necessary information to the doctor (a bit tough to do at this point on Kelsey’s behalf), he examined her and noticed no redness or inflammation anywhere.  Kelsey’s heart raced and she wondered why that pink medicine was not prescribed.  I squeezed her tightly because I was not sure what else to do.  It is rare that I sit at a doctor’s office and HOPE to hear, “yes, there is an infection.”  Yet, in that moment I realized those were precisely the words I wished to hear.

Instead, I came home with a heavy heart and worry that goes beyond words.  There is so little known for PAN right now that when the regular is ruled out, the scary stuff creeps in.  What was supposed to be a fun-filled and festive day in Philadelphia turned into one where I wanted to just crawl back into bed.

For Kelsey’s sake, that is not an option.  

I find strength and start making phone calls.  The dialogue that follows is too routine theses days.  I sit with my stethoscope, waiting and monitoring.  Hours pass.  I try to stay hopeful and calm.  

Recently, that has been increasing challenging to do.

Though the fever went away, we once again had a hobbling child unable to stand straight and tall.  She attempted to fake it and fool us out of fear, but her tiny body could hide no more.

To the ER we went and waited again.  There we sat in an unbelievably crowded room only two days shy of the five year anniversary of the first time we walked through those doors.  It is almost unbelievable.

Today marks five years to the day.  I sit speechless.  We realize that treatment is not working once more according to plan.  That is far from comforting.  

We await results.  We await blood work.  We await an emergency follow up at the National Institute of Health.

While we wait, we call and look for research opportunities and seek help from anyone who can lead us to answers.  Five years from now, it is my family’s mission that we are writing a much happier tale.

We sleep a little less, pray a little more, and appreciate the help and support of so many.

Every day deserves to be “the best day” for every child.