Whew. I\u2019m rarely at a loss for words but I\u2019m exhausted. \u00a0\u00a0I\u2019ll keep it short and get to the results; so many of you are asking about Scarlett and I\u2019m so enormously grateful for your kindness and support. \u00a0Please pardon the brevity.<\/p>\n
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.\u00a0 Unfortunately, after repeating all the tests from the beginning of the study, we learned that 2 of the 3 tumors have grown. \u00a0\u00a0More worrisome, something is impeding her breathing again and she had 4 episodes of severe apnea (i.e. her breathing stops) during her sleep study.\u00a0 In the sleep study 6 months ago, there was no apnea. \u00a0As 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.\u00a0\u00a0You may recall from earlier blog posts that these tumors often come back more aggressively when you \u201cupset\u201d them, but given the restriction on her breathing, we may not have another choice.<\/p>\n
We had to stop the Gleevec immediately.\u00a0 The doctors are concerned that perhaps it has some role in the restricted breathing; for example, perhaps it causes swelling in her airway.\u00a0 Given that she had no other symptoms of swelling, this would be \u00a0an 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.\u00a0 \u00a0I could drive myself crazy with all the possibilities, but for now we focus on the immediate issue. \u00a0\u00a0If 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.<\/p>\n
In the meantime, we are home.\u00a0 The kids are at school, I\u2019m trying to run a business, \u00a0the Cockatoo is still squawking, and poor Boomer got injured while I was gone (it never fails \u2013 one pet will always get hurt as soon as I leave the state). So it\u2019s off to the vet.. \u00a0and off to soccer\u2026. Life goes on.<\/p>\n
Love to all of you,<\/p>\n
Shan<\/p>\n
PS \u2013 Scarlett said to tell everyone that she is a Snickers bar for Halloween and thinks it\u2019s hilarious that she \u201cwill be <\/strong>a candy bar getting candy bars\u201d. \u00a0Kids are awesome.<\/p>\n 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.<\/p>\n","protected":false},"excerpt":{"rendered":" Whew. I\u2019m rarely at a loss for words but I\u2019m exhausted. \u00a0\u00a0I\u2019ll keep it short and get to the results; so many of you are asking about Scarlett and I\u2019m so enormously grateful for your kindness and support. \u00a0Please pardon … Continue reading