Sorry for the delay in an update.  So much has happened in the past month. Scarlett is now scheduled for more surgery on April 16th and will spend a few days in the ICU at Childrens to recover. The surgeons will try to remove more of the plexiform tumor that is again blocking her airway.  We have noticed more episodes of her gasping for breath (especially when she is talking rapidly – which is ALWAYS!) They will also redo the tube in her ear where her ear canal is “cramped” by a different tumor.

You may recall that Scarlett was participating in a drug trial with Gleevec. We didn’t see the tumor reduction that we had hoped for so she’s been off the Gleevec for the past few months. The lead researcher of the study (at Indiana University) is one of the most special people I’ve ever known. He continues to look for other studies/trials that might help Scarlett and reduce her tumors. Words just can’t express our gratitude. Thank you Dr. Kent!

Meanwhile, Scarlett loves her ballet classes and is looking forward to a trip to Canada in March.  I thank the universe for her every day; she is truly the most thoughtful person I’ve ever met. Always concerned about others rather than herself.

I get so many questions about how people can help with our “adventure”. There is still no cure for Neurofibramatosis so research is everything to us.  We continue to raise funds for research via Team Scarlett and the NF Endurance Team.  If you’ve got a few cents to contibute, we’d be immensely grateful. Here’s our link:  Support Team Scarlett