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We got home Friday afternoon after safe travels back from Salt Lake City.  The older boys were happy to see mom and dad, but especially Travis.  The medical update...we talked to the research clinic coordinator Friday morning and the lady that does the bone scans was in training again, so we were not able to get Travis' bone scans done.  However, if we return to Salt Lake City or pass through, we can schedule the scans then.  While it would have been nice to have the scans as a baseline for T's tibial issues, his tibias could sail through life without further issue.  The unpredictability of NF.

These visits were some of the most informative T's had throughout his entire NF medical history.  Good thing we were taking notes throughout the visits and both of us were able to be there to catch what the specialists said.  Travis was usually playing with his car while we were talking with the docs, we are so fortunate that he's such a great kid.  :)

Where we go from here...copies of T's MRIs were sent to the National Cancer Institute to see if he would qualify for the clinical drug trial, the rapamycin/sirolimus trial.  His plexiform would have to be growing at a rate at or above 20% (or other measurement of areas of the plexiform) as determined by the MRI assessment  We still have to consider that option thoroughly, lots of pros and cons to sift through.  Travis has an orthopedic appointment at Children's in Denver in a little over a week.  It will be interesting to see what this doctor says, as well as how many kids with NF she's had experience treating and how they are fairing.  I haven't been impressed with her response times on some questions we've had; however, that may change once she actually sees T.  His prior orthopedic doc moved to a different facility and she's probably acquired many new cases.  We'll keep you posted.

We had a nice trip back home, even taking a scenic jaunt to Park City for a few minutes.  We even drove through some areas by Evanston that had snow earlier in the morning, yes it's October and we enjoyed the extended summer through September.  We made it home in time to unload and all go out to dinner.  Thank you again to Grandma C for shuttling the older boys to their various activities.