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…

I know that I should be grateful.

“I feel like I’m starting to lose my wife again” says Brendan candidly Saturday morning after I finally sit down with my coffee in silence.

We begin to dialogue about the agony a daily injection is now imposing upon our daughter’s life.  Once a week was difficult enough for me if I am being honest.  It consumes my slumber the evening before.

I wake up with a sense of urgency every Wednesday morning and painfully go through the motions.  I sneak down to get the medication out of the refrigerator before Kelsey wakes.  She wants to immediately get it over with and I do not blame her at all.  If the needle does not sit out, it will cause an even more painful and numbing scream than she typically produces.  If you heard the screams, that would be difficult to understand.  Though, sadly, it is true.

I want to be optimistic.  I want to be so grateful that the National Institute of Health saw us as an emergency case last week and helped us through this six month flare yet again.  I want to smile at the notion that this newly prescribed daily injection will help my baby girl get back on her feet.  I should be grateful for this medical advancement.  I know in my heart that I should.  I want to keep smiling and I WANT with everything inside of me to be myself, I really do.

But I just feel sad.

Starting my day by injecting a liquid into my daughter that causes shrieks of sheer agony and visible indicators of pain and swelling once complete is not helping.  Sure, these marks are hidden away by her clothes and her optimistic attitude, one I have worked so hard to show her through the face of all of this adversity.  But it is weighing heavy on me six months into this flare, and I am just tired of smiling.

When she asks questions like, “God, why did you do this to me?” and lays up at night with sentiments like, “I am just thinking about how much it will hurt me in the morning.  It’s keeping me up and I’m sad,” it weighs on me like a ton of bricks.

Today, I will have to inject her twice.  I am literally losing sleep and focus when I should be wrapping gifts and grateful.  I know that, but I can not help but hear a holiday song and think about the moment when that will happen in a few days and sit for moments on end picturing how much she will likely scream.  

This Christmas, my wants are few.  What I desire is a new sense of hope and patience through this disease.   I thought 2011 was the hardest holiday season we would face.  We were torn apart as a family and placed in isolation in a children’s hospital with a blood transfusion necessary during the wee hours of Christmas Eve.  I remember looking out the window while sitting up with Kelsey at 3:43 A.M. that Christmas Eve hoping to see Santa’s sleigh and wished it was all but a dream.

Five years later, that part seems easy in retrospect because now it is the day to day.  The little things like rushing to attend dance class after work and school, only to arrive and have Kelsey burst into tears in the parking lot that she was too tired.  She could not go in even though she wanted to dance.  She was too tired and just could not make it through the class.  How can you know that at five?  To be able to say that while standing at the dance school must have been very difficult for her to say.  Dancing brings her so much joy.  

Of course we drove home and I cried the whole way.  Without much dancing in her life, she still completed her routine at her Holiday Show.  The daily injection helped her stand tall and proud while doing so.  Her dance school, Jazz Hands Dance Academy, also donated $600 to Kelsey’s Kaleidoscope through their holiday concert proceeds.  It was an amazingly powerful moment when they called her up to select winners and explain her cause.  Kelsey smiled and said, “It’s a disease.”  That disease has caused us so much pain this year. Jazz hands has been the source of big smiles and squeals of delight.  We certainly hope that there is much more dancing in 2017.

So today, I know I should be grateful for this daily injection of energy and positive for my daughter.  I am sincerely going to try to get there: for her, for my son , and for my husband.  

Sometimes, things are just easier said than done.

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.

The Warm Sandwich

It was December 14, 2011 around 2:30 P.M. when we first arrived to the E.R.  My heart racing along with my mind.  The moment it hit me was when we placed Kelsey on the scale at registration and started to talk about the past few weeks.  Her hospital bracelet acknowledged that this was truly happening.  

I realized how desperate we were for medical attention and how I truly should have seen this sooner.

From that moment, we were treated with respect, care, and attention.  The doctors were compassionate and concerned.

By the time the evening shift change occurred, we were impatiently awaiting an answer that no one was able to provide.  We had likely been there for seven hours without food or a glass of water.  I was still nursing my ten month old baby girl so she did not seem to notice that her father and I denied ourselves nourishment because we were completely numb inside.  Nursing seemed Kelsey’s only comfort in the world beside my arms throughout the past few weeks.   I think it was my solace, too.

Later on in the evening, we met a husband and wife team of emergency room doctors.  I will never forget their eyes of concern or the sandwiches they brought Brendan and I around 11 PM.  According to the compassionate female doctor, whose name I do not recall five years later, “you really should eat something.”   Her warm brown gaze met mine.  Whether she was a mother herself, I do not know.  She certainly had a nurturing and motherly sense about her regardless. 

Even though I had not an inkling of hunger, that sandwich was necessary.  For it was a source of nutrition, but even more than that, it was a sign that we were in the right place.  

Even if it was a warm turkey and cheese sandwich at 11 PM, it was exactly what I needed.