Dakota's Visit to PCMC

April 12 - I took Dakota up to PCMC in Salt Lake City for her visits with the two specialists, Dr. David Viskochil (Geneticist) and Dr. Lor Randall (Surgeon).  Both visits went very well.  Despite getting there almost 20 minutes late, we had adequate time to follow-up on Dakota's progress.

We are happy to report that her plexiform tumor is still STABLE!!!!  WHEW!!!  Those are the words we always look for and hope to find on the radiologist's report.  "Stable" means no notable growth and/or markers for cancer.

Dr. Viskochil looked her over and we discovered possibly a few more neurofibromas ( the typical sub-cutaneous and cutaneous tumors that grow with this disease) on her body...two possible cutaneous ones on her tummy, just below the belly button and one sub-cutaneous on her back).  Spine is straight (no Scoliosis setting in) or bowed legs.

Reflexes, muscles and strength in limbs seem to be just fine.  She is very strong for a kid who had NF...you don't always find that.  She is doing very well socially, academically, and is even keeping up with her peers in ballet class.  We were very happy to hear, once again, that she is not following the NF norm.  She is functioning well and tolerating the pain in her tumor.

Dr. Viskochil will send the scan to the NCI (National Cancer Institute) for specific volumetric measurements and will then compare that with the measurements they took on her last scan one year ago.  Depending on the Institute's findings and his next follow-up examination of Dakota in 6 months, he will decide whether we can go one year again before a another MRI.  If the NCI reports a 5% or more growth, he will start to worry about it...anything under that, not so much.

They, too, have to take into account expected growth of said tumor that is associated with her own body's volumetric changes.  The tumor will grow as she grows.  They are looking for unparalleled growth...that which is beyond her own body mass growth.

Dr. Randall advised once again to leave the tumor alone.  Don't fix it if it's not broken yet.  They like to leave these plexiform tumors alone if they can, although he does end up taking quite of few them out every year.  Cutting it out may only cause many other, possibly worse problems.