Can You Spell That, Please?

So what has more syllables than good sense?!  Multicentric Reticulohistiocytosis.  Say what?!  Okay, we will call it MRH for short.  It has no good sense because it is messing with Keri.

MRH is a rare (very rare in the U.S.) medical condition that she was diagnosed with in early July.  It presents as little nodule-like spots on the skin.  Ugly, but no biggy.  It, however, develops into destructive arthritis in 45% of it's cases.  Not good, but not life threatening either.

Curiously, in approximately 25% of cases, malignancy has been an associated disease.  Keri has had 2 of the 10 cancers that are reportedly associated with MRH.

Needless to say, we have had a lot of recent medical appointments to go over Keri with a fine tooth comb and collect information.  We are happy to report there does not appear to be any signs of cancer. 

Keri has been scanned previous to finding this condition, with clean results. Given the new diagnosis, we completed several scans again this October to see if anything new had popped up.  Keri's oncologist noted that lab work and scans were clear of any signs of cancer.

We also pursued additional genetic testing through UT Southwestern to understand if she or her family are predisposed to particular cancers given her history.  The three tests performed did not detect any mutations.  So we are not sure why Keri got cancer so young.  But as far as the genetic tests currently go, she is not at higher risk for any other cancers or recurrence due to genetic mutations and her children and siblings are at no greater risk. 

Also we just wanted to get her into their system in case any new information is made available about this condition.  Especially, because all the doctors we see start pulling up what they can find on Google when we visit with this diagnosis.  We have already done that part ourselves, thank you.  There is not a lot out there--only about 200 cases total in medical literature.  We have provided blood samples for future research, but not specifically for MRH.

Additionally, we have met with a rheumatologist to get on his radar. He has at least heard of it, as he attended a seminar that discussed 3 case studies.  We had baseline images done on my hands as the arthritis tends to begin in the extremities and digits.  Tests show no current signs of inflammatory disease.  Further testing can be done if symptoms develop.  Keri's regular exercise, improved eating habits, and religious practice of avoiding smoking and alcohol only aid in preventing arthritis' onset.  Our rheumatologist also gave us specific information regarding diet to prevent and slow the onset.

So who gets to be the quirky medical freak in the family, as if she wasn't already?!  You guessed it--Keri!

When we found out about Keri's MRH we were concerned but we would like everyone to know that we are okay and happily living life as usual, just with a few more doctor's visits.  We have felt the presence of the Holy Ghost guide us as to where we should put our energy.  We know that this could be nothing or this could be something so we will just take it as it comes.  Thanks to all who helped out with babysitting as we had doctor appointments.