Wednesday, May 22, 2013

Crisis for Some, but Just Another Day for Scarlett

Round 5 of chemo is fading away, and Scarlett is coming out the other side. She's feeling pretty good overall...

Music time at school

Discovering self-portrait capabilities on momma's phone

Last week, Chris saw what he thinks was a seizure while Scarlett was in physical therapy.  Her therapist agreed that the dazed stare and unresponsiveness looked like a seizure.  We watched her all week, and still have not seen anything else like it. Seizures have come up several times in Scarlett's history, and we were clearly told before that unless they impede her development or daily function, we won't treat occasional seizures.  So, we did not panic, and made sure to discus with her doctor later that week.

When the appointment came around, her doctor was only mildly surprised to hear about a seizure.  With all of the surgeries, tumor damage and blood loss she has experienced over the last two years, seizures are essentially expected.  However, she did add something that caught me off-guard: in the list of possible causes, she mentioned the stroke she had during surgery.

I didn't know she had had a stroke!  It had been mentioned, once, in the PICU after her first tumor resection, but never confirmed.  Since that was at the other hospital, two years ago, it is obviously a known element of her chart.  How did we never hear about that?!  I was so surprised, and it was said as though we clearly should have known, I couldn't even ask more about it because I was so baffled.

I hate surprises like this, but it does not change anything we do now.  It just adds to our understanding, one more tiny piece of the Scarlett puzzle.  Unless any of this starts to disrupt her daily life, we just keep going the way we have been.

Otherwise, we discussed our regular topics: all of Scarlett's fun tricks, and vomit.  The puke still plagues us on a daily basis.  We have moved back to medicating every day to try to keep more in her.  I am so very, very tired of vomit but it seems to be a steady part of our lives for a while longer...we are expecting it to get worse before it gets better.

The best part of the appointment was being approved to bump chemo for a few days to take her on vacation!  We booked a little weekend trip to San Diego, where we will get to visit the zoo, the beach and best of all: meet Riley, another kiddo who has fought the same tumor as Scarlett!  His family lives across the country, but will be visiting San Diego for his Make-a-Wish trip.  They invited us to meet up for a play date, and we are going for it!  Even better, another of our GBM friends, Lily, is able to meet us there from their home in SoCal, so all three families will get to play!  It's still a month away, but I am very excited!


Shan said...

Happy vacationing!

V/P/A/A said...

I hope all 3 families have a wonderful vacation.

child of God said...

Seizures and strokes turning up and giving you unwelcome surprises are not great at all!! Sometimes knowing more only stresses you out and makes you worry even more. One thing though, with all that has happened Scarlett is still thriving and progressing and that is good!!

Continuing to pray for her and hoping you have a wonderful vacation. :)

Praying and praying,