Skin Deep

Just over two years ago I took Georgia to see a dermatologist, she had a few bumps on her skin and her pediatrician couldn't tell for sure what they were.  I remember the appointment well, the doctor was very quick to diagnose the spots as molluscum, a common childhood virus that you don't treat and typically goes away in about a year.

Upon our first few days in the hospital just under two years ago we were seen by a lot of specialists and dermatology was a key player.  One of these "molluscum" bumps was biopsied and it was confirmed that it was not molluscum but in fact Juvenile Xanthogranuloma (JXG).  JXG is very uncommon, benign and is not treated, it is however occasionally seen in connection with JMML. 

Georgia's JXG was a point of fascination for many doctors, residents and medical students, lots of pictures were taken and we heard from everyone up and down the food chain that "they'd never seen a case this bad."  We were told that it may go away in 2-6 years but they weren't sure given the severity.  Our transplant doctor was very curious about it the first time he met Georgia, he said he'd only ever seen pictures of JXG.  In fact the Seattle Cancer Care Alliance had never transplanted someone with JXG before so no one knew what would happen.

After one round of chemotherapy Georgia's JXG became significantly worse, after transplant it seemed to slowly improve.  Last week Georgia's oncologist just sort of gazed at her for a minute, she said, "her skin looks amazing."  The improvement that has happened I think in a lot of ways surpassed what doctors thought possible, certainly in a short time frame.

Today we had our first appointment with Children's Dermatology to do a general skin check on Georgia.  She still without a doubt has sensitive skin, she's had irritation and bumps that have come and gone but nothing that the doctors seemed overly concerned with.  The dermatologist took a good look at a few bumps on her leg, they look like ones that have come and gone in the past but these have been her for a bit.  In his opinion these bumps look like JXG, when I heard this my heart sank.

Since leaving our appointment I have been going back and fourth in my mind from scary thoughts to remembering that her lab work just one week ago was normal.  In 99% of JXG cases it is not tied to leukemia, Georgia has a different history.  The dermatologist is checking with our oncologist to see if they think a skin biopsy is necessary.

This is the feeling I hate, waiting for the phone to ring, feeling like we are at some sort of crossroads and wanting my daughter to be left the hell alone.  I am tired of being scared, of being tied to so many doctors and waiting for someone else to make the call on what is next for my life.  I am trying hard to focus on her months and months of clean lab work, even if this is JXG, the lab work still trumps a confirmation of a skin condition.  I have believe this is only skin deep and the strength of our family goes far deeper than that.

This picture was taken on Sunday, just before Brian and I left for our anniversary dinner - Georgia appropriately let everyone know who was boss before we left!