More surgery, new medical trials, and lots of racing!

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


Heading into 2013….

Scarlett went back in for more surgery in December. The surgeon decided that he didn’t want to cut into anything yet, but instead wants to confer with his entire CranioFacial practice team and see what they suggest. There is the possibilty of going in through the side of Scarlett’s neck (prior surgery’s have all been down her throat).  They are unsure how to remove any more of the airway tumor without causing damage to her swallow reflex and voice. Such is the nature of these plexiform tumors: they are so entangled with vital organs and there is no easy way to remove them. In the meantime, she is cleared to go back on the daily chemo meds (Gleevec). Despite two of the tumors growing during her last round of Gleevec, everyone seems to agree that she seemed to breath and speak eaiser while on the Gleevec. She’s such a trooper.

More surgery ahead

We saw the surgeon at Children’s yesterday. He did Scarlett’s prior surgeries and thinks we should go back in and possily debulk more of the tumor since her breathing is again restricted. He also mentioned removing some of the tumor pressing against her tongue to help with breathing and possible speech.  Surgery is set for December 6th and she’ll spend a couple of days at Childrens recovering.  He said it was fine to continue with the Gleevec despite not seeing any shrinkage of the tumor; his words were “it can’t hurt”.   We’ll see what the doc at Indianopolis says. Meanwhile, Scarlett is having sugar withdrawals from Halloween yesterday. The Snickers costume was a hit.

much love,


Happy Halloween

October 2012 – Unexpected Results

Whew. I’m rarely at a loss for words but I’m exhausted.   I’ll keep it short and get to the results; so many of you are asking about Scarlett and I’m so enormously grateful for your kindness and support.  Please pardon the brevity.

We were really hoping that 6 months on the Gleevec would stop or possibly even reverse the growth of the tumors. Other kids in the study had seen tumor shrinkage and we considered that a best case scenario.  Unfortunately, after repeating all the tests from the beginning of the study, we learned that 2 of the 3 tumors have grown.   More worrisome, something is impeding her breathing again and she had 4 episodes of severe apnea (i.e. her breathing stops) during her sleep study.  In the sleep study 6 months ago, there was no apnea.  As a result, we are back in Seattle and will see her surgeon in a few days to determine if we need to remove whatever is in her airway.  You may recall from earlier blog posts that these tumors often come back more aggressively when you “upset” them, but given the restriction on her breathing, we may not have another choice.

We had to stop the Gleevec immediately.  The doctors are concerned that perhaps it has some role in the restricted breathing; for example, perhaps it causes swelling in her airway.  Given that she had no other symptoms of swelling, this would be  an odd side-effect but we have to be cautious. My great worry is this: what if the Gleevec did work and was actually slowing the tumors? The implication of course being that those damn tumors are so fast growing that the 1mm growth of the two tumors was actually slowed growth.   I could drive myself crazy with all the possibilities, but for now we focus on the immediate issue.   If the doctors can resolve the airway blockage, they may decide to put her back on Gleevec in the future. For now, that is taking a back seat.

In the meantime, we are home.  The kids are at school, I’m trying to run a business,  the Cockatoo is still squawking, and poor Boomer got injured while I was gone (it never fails – one pet will always get hurt as soon as I leave the state). So it’s off to the vet..  and off to soccer…. Life goes on.

Love to all of you,


PS – Scarlett said to tell everyone that she is a Snickers bar for Halloween and thinks it’s hilarious that she “will be a candy bar getting candy bars”.  Kids are awesome.

PSS – yes, new blog layout and I somehow managed to lose the old entries. Oops. Will try and fix it when I have a bit more time.