It all began on Saturday, November 18.  Riley was ready to take a bath when he showed me a lump
the size of a walnut under his arm and asked me "Mom, did I tell you this hurts me?"  I said no, you
didn't tell me.  I tried not to make a big deal out of it, but called Sean into the bathroom and we both
agreed that we should take Riley to the hospital.  The hospital told us it was a swollen lymph node
and that we should follow up with our pediatrician on Monday and possibly get a biopsy.  We went
straight to our pediatrician on Monday, he didn't mess around.  He tested Riley for TB, asked about cat
scratch fever and then sent us to the lab to get blood work and urine tests.  All of the tests came back
negative, no TB, urine was fine and the blood work looked good.  But the lump continued to grow to the
size of a golf ball.  The only thing we could do was biopsy.  
The surgeon did the biopsy on Nov. 30.  When we went back to get the stitches out on Friday, Dec. 8,
we were told that Riley's biopsy results were positive for Langerhans Cell Histiocytosis (LCH).  We of
course were devastated and "lost".  What the heck is LCH?  Sean immediately began researching on
line, I could only take small doses of the information because some of it made us feel like, OK this
isn't so bad, but other information made us feel like it was the end of  our world.   On Saturday,
December 9, I noticed another lump on Riley's neck, this time we began to panic, how fast does this
disease spread?  We called our Oncologist, who we were not supposed to see until Monday, and
even though he said we could wait until Monday to do the tests as an outpatient, understood our
needs, and admitted Riley to the Oncology Ward at Banner Desert Hospital in Mesa, AZ.  They ran all
the standard protocol testing to see what organs were affected.  Riley had x-rays on every bone in is
body to check for bone lesions, he had CT scans of the neck, chest, lungs, abdomen and all vital
organs.  He also had a brain MRI and a bone marrow biopsy.  All of his major organs are clear from
this disease and it seems we are only dealing with the lymph nodes.  
80% of the mass that was taken from Riley's armpit was LCH cells and the lymph nodes that had
been removed, had been completely replaced by LCH cells.  That is why we are treating Riley with a
combination of chemo and steroids.  This is the only known treatment that can put this disease into
remission.  He will undergo these treatments for 6 months, then he will be monitored very closely by
the oncology group for many years and into adulthood.  Riley will have to monitor this disease for the
rest of his life.  
Riley started his chemotherapy and steroid treatments on December 18, 2006.  He was a little tired
but for the most part he is doing well, he is not nauseous and is eating well.   Riley will get chemo
once a week for 6 weeks, then every 3 weeks until the 6 months worth is administered.  He also takes
prednisone 3 x a day (by mouth) as part of his steroid treatment.  He has already started running from
me when he sees the spoonful of chocolate pudding, it's only day 3!!  
He will win this battle!
Riley's Story  >
Riley Connolly's fight
to beat LCH