March 31

Madelyn was not able to eat after 3:30am this morning due to her lumbar puncture procedure.  So the morning was rough.  She is on steroids now which make her very hungry - not eating is an issue.  The LP or spinal tap put chemo in her central nervous system and she also had PEG shots (also chemo) in her leg muscles.  She had PEG one other time, when we were in the hospital at diagnoses.  I remember her having a mild allergic reaction to something while in the hospital, but can't say for sure what it was to.  It was a very whirly, foggy, cry-infused time. 


Today, however, she most definitely had an allergic reaction to the PEG.  It was scary.  The nurses and doctors were very nervous.  She had blotchy hives that showed up randomly in different places.  First on the chest and then they would go away and show up on her face.  Then go away and show up on her neck, etc, etc.  Then she started to not want to drink/swallow anything and complained of her throat hurting.  Then her mouth started to swell and she was extremely overheated.


It took three antihistamine drugs to get it under control.  She actually moved her body and became more alert around 2 or 3pm.  She was, literally, in the same body position for hours.  Around that time she also started talking more, needed to go to the bathroom and wanted to eat something.  All good signs of feeling better.  Finally... again, THREE drugs later.


Peter took Phia to the playroom after MJ started having the allergic reaction and then home.  I stayed with her all day.  She was admitted to the hospital tonight for continued observation.  The PEG chemo stays in the system a very long time and they want to keep her on regular, around the clock, staggered doses of the Benedryl and Zantac.


Observation during the day took placed in the Oncology Outpatient Clinic - where we are usually treated - in the infusion area.  This is still at Children's Hospital, just a different area of the hospital then when you are actually admitted.  So tonight MJ and I are in the Seattle Cancer Care Alliance inpatient unit.  


We got to our room at 5:00pm and Peter sent me to dinner.  When I returned from the cafeteria, Madelyn's food arrived and the girls sat in the bed together eating their dinner.  It was cute.  Immediately following dinner MJ said it was time for bed.  She was asleep by 6:45pm... passed out is probably a better term for it.  Big day and Benedryl.  She is snuggled up right now in her regular clothes (I forgot her PJs), has her favorite Bunnies by the Bay blanket and her quilt from Grandma Rosie.  I love that most kids do not wear hospital gowns on this unit; as much that can be NORMAL here, the better.


More tomorrow...