MRI Volumetric Results

Today we heard the results of the volumetric assessment from Travis' MRI in Salt Lake City last week.  This analysis is done at the National Cancer Institute and showed a >20% increase in plexiform volume in the pelvic/hip area using the 7/6/10 and 10/26/10 MRIs.  The prior assessment showed a 33% plexiform volume increase from 12/29/09 to 7/6/10.  The volume change (7/6/10 to 10/26/10) of the leg part of the plexiform was not able to be determined very well due to different MRI settings used in Denver and Salt Lake City.  We knew that different MRI settings could present some difficulties in the volumetric assessments; however, Travis will have the same MRI settings from here on out.

What this means...Travis still qualifies for the rapamycin clinical drug trial.  We are working with the research coordinator to schedule the trip to Salt Lake City to sign the consent, initial exam, and blood work.  This needs to be done within a certain time frame from the MRI, I'm not sure how long we have to get this done.  While T's lead Geneticist is out of the country until Nov. 18th, either of his colleagues could perform the initial exam.  Hopefully we should know by early next week when we'll be traveling back to Salt Lake City.  If we miss this time line, we would wait until after the January MRI to enroll in the clinical trial (if Travis were still to qualify).

We were able to get the preauthorization needed from insurance stating they would cover the standard care treatment for Travis (including MRIs every 3 months) as used in the clinical trial.  We are fortunate to have another wonderful case manager through insurance...the ones for WY, CO, and UT are great.

We did hear back from the Shriners Orthopedic PA this week.  He is wanting to talk with the Geneticist about the plexiform's growth and they will collaborate the determine the best orthopedic plan.  He also recommended that Travis see Dr. Lor Randall (orthopedic surgeon specializing in sarcoma treatment) when we can get in to see Dr. Randall when we are in Salt Lake City.  This doctor is familiar with plexiform removal surgeries and this does not mean that Travis' plexiform is cancerous nor would we be doing surgery, just another opinion of T's issues.

Thank you again for all your prayers, thoughts and support.