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.

One thought on “October 2012 – Unexpected Results

  1. We know these aren’t the results you were hoping for and for that we are truly sorry and disappointed for all of you.
    Scarlett is an amazing little girl who has such a gift for making people smile and for keeping their spirits positive.
    We will keep you all in our thoughts and trust that the doctors will be able to resolve the breathing issue quickly.
    Love Janice and David

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