I’ve been holding my breath a little the past couple of weeks.  See, Oliver’s one year anniversary has been looming in the back of my mind.  One year ago Oliver was diagnosed with Langerhans Cell Histiocytosis, a rare form of cancer.  A year ago today I made my way to Unitas hospital with one brave Ninja Turtle.  Oliver was admitted to the pediatric oncology ward and his doctor would perform a range of test to see exactly where the Langerhans Cell Histiocytosis (LCH) cells are and whether they had spread to any other organs in his body.

Tests to detect Cancer cells
Oliver, the brave ninja turtle – On our way to UNITAS to do the necessary tests, scans, sonars and dreaded bone marrow aspiration

Is Langerhans Cell Histiocytosis classified by Stages?

There are no stages by which LCH is classified.  Instead LCH is described as single-system disease or multisystem disease, depending on how many body systems are affected.  The low-risk organs include the skin, bone, lungs, lymph nodes, gastrointestinal tract,pituitary gland, and central nervous system (CNS).  High-risk organs include the liver, spleen, and bone marrow.

A year ago I had to pin Oliver down while the nurses poked and prodded him.  I stood next to my baby boy while they did a bone marrow aspiration.  I remember the doctor asking me whether I was up for watching while she did it.  I remember crying through the procedure wondering how I could possibly walk out while my kid fought against this disease.  I didn’t have the courage to go through it and yet I had no choice.

I wasn’t given a choice.

Oliver was diagnosed with single-system LCH.  The LCH that was originally found in his lymph node, had been removed.  The LCH wasn’t found in any other organ, classifying him as a single-system low-risk patient.  His prevention treatment plan included 8 weeks of cortisone medication.  And although it was hectic – it was nothing compared to what it could have been!  The thought of chemotherapy and radiation makes tremble.

I am so grateful!

I am incredible grateful for where we are now and how far we’ve come.  But I will say this: Langerhans Cell Histiocytosis isn’t a word I can forget and move on.

  • LCH isn’t a chapter that can be closed off or file away.  LCH is cancer that can recurred after it has been treated.
  • It would be a disgrace to not acknowledge Oliver’s testimony.  A testimony in which he was diagnosed with Cancer and was healed.  Prayers, modern medicine, wisdom and knowledge, grace, God.
  • It is ingrained in me.  Every time a friend or colleague mentions Cancer I am reminded.  I understand the journey.  I understand the fear of the uncertain.  I understand the angst in waiting for days – hoping and praying.  I know what it is like to be ready for the fight, full well knowing you are not the one fighting for your life.
  • Remembering my journey makes me compassionate to other going through the same thing.  Remembering makes me faithful in praying and trusting God for healing and cures and medicine that work without the horrible side effects.

On the 15th of February I wore my Choc badge in honour of International Childhood Cancer Day (ICCD).  My heart was heavy but I was celebrating in gratitude.

It would be too easy to forget and move on.  Sometimes pain isn’t a bad thing, it’s a Valuable Reminder

To find out more about LCH, visit the National Cancer Institute’s website

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