MRI Analysis, New Doctor in the Mix, and Shriners' Physical Therapist

I saw Travis' research coordinator today and for a quick visit, T was glad that he didn't get a "poke".  She said they sent of a copy of T's October MRI to the National Cancer Institute for volumetric analysis and it showed his plexiform has grown more than prior scans, but not greater than the 20% threshold.  She also said it could be related to his growth spurt between July and Oct.  There was a note in the Salt Lake City radiologist's record that there may have been some movement during the MRI, that could also play a role.  I thought they weren't sending off this MRI since it wasn't part of the study protocol and it was done for clinical follow-up.  Ummm....OK?  I will talk with (or email) the research coordinator to ask a few questions about this analysis that I thought of later.

From there Travis and I headed to his pediatric GI doc appointment for his chronic constipation.  We were there for 2 hours and I'm not too thrilled about where we go from here.  We've been down this road before several years ago and couldn't figure out the right dosing.  So then it resulted in several clothing changes daily for Travis (and occasionally some for me) as his diaper couldn't contain the volume.  Some good news from today's appointment is all of Travis' muscle function associated with bowel movements appears to be normal and NOT directly affected by the tumor.  This issue is common for all kids, not specifically related to NF.  While he could run tests, the tests may not provide any more insight to what we're observing at the moment.  Also, the urologist may want to run the same/similar test when we see him later in December.

My hope is that T's body will tolerate the medicine this time around, I know several other kids take it without issue.  I need to get my attitude in the right direction and proceed when we hear if those medicines are allowed while T's on the drug trial.  My fear is that this time will be like before and T won't be able to attend Pre-K even though the result is from medicine to clean and maintain his system and not sickness.  An added potential complication this time is T's "boot".  There is foam padding on the front that wouldn't fare well if the results are similar.  I called Shriners today and we came up with putting the front plate in a bag to protect the foam.  It's the first decision we've had to make to figure out which issue to tackle while keeping T's leg safe.

If we end up going through things again, we may not be venturing out much from the house...definitely NOT what I want for the older boys' hockey games, programs, and enjoying this time of year.  For now I'll strap on my boots (and get over myself) and will let you know if you should be buying stock in Huggies, diaper wipes, Lysol, etc.  His body has changed since then and may be able to tolerate the medicine better.

Ending on a positive note, Travis LOVES his physical therapist at Shriners and T works hard for him.  The therapist had Travis try a Shriners bike (tricycle) out during Monday's session.  T appeared very comfortable on the bike and even pedaled by himself a few rotations when he was going to park the bike!!!  :)  We think that Travis can pedal a bike like this and should get the hang of it do pedal it by himself in a few weeks.  This week T had too much fun looking around the big playroom while on something other than his stroller or walking.

We had a wonderful Thanksgiving and have so much to be thankful for this year.  T's in the care of wonderful doctors and we are all adjusting to our new city and routine.  Thank you so much for your thoughts, prayers, and concern.