Emma's Story

55 Days Apart

Emma’s journey 

Emma Marie Wheeler 6.18.03-11.14.17

September 21, 2017, the day we heard the words, we are sorry, your daughter has Hemophagocytic Lymphohistiosytosis…. I thought, what is that?  It sounds like supercalifragilisticexpialidocious & even tho the sound of that is something quite atrocious, we had no idea the journey we’d travel.  Emma was 14, a Freshman in high school, she loved animals, she loved people, and she was full of life.  Diagnosed with mono just 3 weeks prior, we had no idea we were now in the fight for her life.  Her dad Rex and I dropped everything and dedicated our time to Emma as she had been admitted to the hospital. Doctors immediately began the 2004 protocol, but after a month of constant & aggressive treatment including a round of IVIG, Emma’s body was not responding to treatment.  A PET scan ordered and in addition to HLH she was diagnosed with Anaplastic Large Cell Lymphoma.  Chemo protocol changed and through it all, Emma stayed as positive as she could be.  We celebrated anytime we could, no matter how big or small the win.  However, at one point in treatment she turned her head to me, lying there in her hospital bed and said, “Mom, what if they can’t fix me”?  I didn’t answer, I didn’t know how.  The disease rapidly attacking her body, we couldn’t keep up.  Then, November 8, 2017, she was life flighted to Minneapolis as her kidneys began to fail.  Within 2 days of that flight, Emma could no longer move, she could no longer respond, multiple organs were shutting down, her kidneys on dialysis, her lungs filling with a rare fungal infection and her body experiencing seizure after seizure.  We didn’t know her final days were upon us.  November 14, 2017, just 55 days from diagnosis, I climbed into her hospital bed, I held Emma as close as I could, and as I sang “Softly & Tenderly” she gained her heavenly wings.  Emma’s journey was over.  Ours had just begun.  As Emma’s mom, my goal is to continue to raise awareness to HLH.