Our Smiley Seth

Our Smiley Seth

Thursday, January 12, 2017


Today I arrived at the hospital around 11:30 and when I got to Seth’s room Dr. Goumnerova, Dr. Wright, and Chris were there talking with Steve.  They informed us that the pathology came back late last night and confirmed the diagnosis was ATRT which they had suspected when we met 6 weeks ago.  It seems like we have been waiting forever for this diagnosis so while it’s a relief to finally know what we are facing it opens up a whole new set of emotions/feelings for what is to come.  Dr. Goumnerova told us they had gotten 80-90% of the large tumor and she was very pleased with how the craniotomy/resection had gone.  Seth will need a port (reservoir) placed in his head to help treat the spinal fluid in coordination with the chemotherapy he will receive through his central line.  Treatment may start as early as next week.  We still need to have a meeting to go over the treatment plan which will give complete details of what to expect but from what we heard today and in talking to everyone at the Clinic previously the treatment for ATRT is very intense.  The first few weeks are especially often hard and then tapers throughout the remaining treatment which we can expect to be at least year for the course of treatment he will undergo. 

Before Seth can begin treatment we need to figure out why his central line isn’t drawing and also try to figure out why he’s having so many fevers throughout the day.  As of tonight the fevers have been down since the afternoon so fingers crossed that continues.  Many people have been in on the discussion of the central line including neurosurgery, oncology, general surgery, and infectious disease and it is sounding like the central line will be removed and replaced.  We are hoping this can be done at the same time the reservoir is placed in his head to limit the amount of times he will have to be put under anesthesia.  For now we can expect to be in the hospital until we have the central line fixed. 

Seth is doing well and is much more himself as the days go on.  He isn’t as interested in his bottles but he truly enjoys his oatmeal, fruits and veggies until the last drop.  We hope that his appetite continues once treatment begins.  For now we’ll be hanging out at Children’s until everything gets all sorted out.

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