Our Smiley Seth

Our Smiley Seth

Thursday, January 19, 2017


Seth has been having fevers since his craniotomy.  Sunday night after being discharged and home for a day Seth had a fever greater than 100.4 so Steve took him into Children’s  to get a dose of 24 hour antibiotics to fight against an infection as well as blood cultures to test for infection. 

On Tuesday we headed into the Jimmy Clinic for an appointment to go over the treatment plan.  Seth had a fever again and luckily could get this round of antibiotics and cultures done while we were at the clinic.  Steve stayed with Seth while I met with Dr. Eng and Dr. Wright to go over the remainder of the side effects for the proposed treatment which includes 10 different drugs, it’s quite the cocktail!  Many of the side effects are well known with any chemotherapy such as hair loss, nausea, vomiting, low counts, fatigue but some of the others I wasn’t really prepared for was the likelihood he would have some sort of hearing loss and the possibility of infertility – this being one I never thought I would be thinking about as it relates to my 6 month old son.  The doctors explained the first 6 weeks of treatment are extremely intense especially the 1st and 4th week.  As a result Seth will be an inpatient for at least that amount of time once treatment starts.

Wednesday Seth’s temperature started to climb in the afternoon and he ended up back in the ER for another round of antibiotics and cultures.  So far all of the cultures have come back negative for infection.

Before we can start treatment we need to have Seth fever free for 48 hours so we can get a working line, have an audiology test, ECHO, and CSF test.  We are hoping that the rickham reservoir can be placed during the sedation for the new line placement to limit the amount of times he has to be put under. 

Today Seth had his central line removed.  We’re hoping this will put a stop to the fevers he has been experiencing.   Right now he has a full schedule next week to get the procedures/tests done before treatment can start.  We’re hopeful everything will be completed soon so we can begin chemotherapy.  Of course we don’t want Seth to have to go through any of this but we’re anxious to have it all start so that we can get Seth well.

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