In the Chute

Smooth seas make poor sailors.

Well, it's been a few weeks...  I've had a cracked LCD screen in my laptop for some time and figured I'd hand it over to Best Buy's Geek Squad over my Spring Break for repair.  It's been nearly two weeks and she's finally come back home this morning.  Just in time I suppose. 

So, over these two weeks Ethan and I snuck off to Florida and had an absolutely wonderful respite with My Aunt Linda and Uncle Bill (and Jackson too!).  I picked him up from school the Thursday left, and that was the reaction that I SHOULD have recorded.  Eyes big at saucers to see me standing there.  So we headed off to Dick's and picked up a new Phillie's cap for our trip, then headed over to Game Stop for a few used DS games.  It was great listening to him try to piece it together as to where we were going.   But in any event, I was able to keep it under wraps all the way up to the doorstep of the Atlantic City airport.  If you missed his reaction on Facebook, here is the link:  http://youtu.be/yawWFOxCBPQ.

Ethan and "Swampy"

We had nearly a three hour delay, but arrived safe and sound a little after 8 p.m. that Thursday night.   We grabbed a bite at the ol' Cracker Barrel and by the time we got home we were both ready for bed.  On Friday we took a pirate cruise off the coast of Ft. Myers.  Ethan really enjoyed himself and quickly made friends with some of the other kids on the boat.  Friday night was our Florida Everblades hockey game.  He was able to clean the ice as promised and thought the hockey game was just great.  We had had seats right on the glass next to the penalty box and Linda and Bill's friend (the announcer for the Everblades) was able to get his hands on the game puck for Ethan.  Saturday included out trip to the Florida Air Show.   It started off a bit rocky... Ethan was kind of alarmed by an F-18 performance.  Can't say I blame him.  It really can be a bit overwhelming how loud a jet engine can be.  But he was able to regroup and enjoyed the rest of his day.  He rode along a zip line they had as a static display for kids and enjoyed the acrobatic performances throughout the day.  And YES, the Blue Angels were impressive as always.  Mission Accomplished.  He loved it and is talking about where we might be able to catch another performance before the end of their season.  On Sunday we awoke to a line of storms moving through Ft. Myers and thought our deep sea fishing plans might be thwarted.  But we persevered.  Bill, Ethan and I threw caution to the wind (10-20 m.p.h. with 2-3 ft seas) and went anyway.  The rain moved out, but the fishing was a bit lackluster.  But we still caught enough for Ethan to consider it a success.   It was a fun-filled weekend, but exhausting even for an 8 year old.  So kudos to to Linda and Bill for being such great sports and a huge thank you to them both for their tremendous generosity and hospitality. 

Our lovely accomodations!

Since returning home, a lot has happened.  We were able to secure a second opinion on the surgery from the Dana Farber Cancer Center in Boston.  Dana Farber and CHOP share the top spot for Children's Hospitals in the US for 2011-2012.  Dana Farber is #1 for Neurosurgery/Oncology and CHOP is #2.  But cumulatively they both ranked #1 this year.  Dana Farber received Ethan's films and reviewed his case for free.  The results of this review created some uncertainty as it was their recommendation that we could afford to hold off on the surgery for the time being.  They felt we would be fine with MRI's conducted at 3 month intervals.  They felt that it boiled down to the risks of surgery vs. the risk of doing nothing.  However, they did indicate that if there was any change to the tumor on any subsequent MRI's, that they would then recommend a surgical intervention.

As much as Adam and I would like to believe that Ethan has a tumor which might never grow or change going forward, we feel this the chances of this happening are slim.  So, as a result, we have elected to stay the course and the surgery will occur as scheduled on April 11th.  On Wednesday I donated my blood and yesterday we had our pre-admission consultation.  They also asked us to take part in two research studies.  One is to assess adequate pain management in children undergoing a craniotomy and the other is a genetic study related to commons childhood disorders.  It's a teaching hospital and we thought we'd like to help in any way possible to chart a course for any kids who might one day find themselves under similar circumstances.




Lots of cool things to see at the Florida International Airshow

So, we are in the chute now.  On Wednesday, Adam and I will be with Ethan in CHOP's PACU prior to the surgery.  They will give him liquid Versed prior to the surgery to lessen his anxiety.  They call it the "laughing juice".  We will be able to remain with him right up until they take him into the OR.  They will take him back and will give him Nitrous Oxide to knock him out.  This is a relief.  He'll get the IV without ever knowing it.  The surgery will take 3-4 hours and they will update us sporadically on how the surgery is progressing.  They will then bring him around while in the OR.  As soon as he is awake, we will be reunited with him.  From there we will go straight to the Pediatric ICU, where he will remain for the entire 5 days.  They feel it is best for children who have this surgery to have the individualized attention of one nurse.  We believe he will be in a room by himself.  Either Adam or I will be able to spend the night with him each night.  Parents can visit 24 hrs. a day.  For those of you who would like to visit Ethan during his hospitalization, he can have guests between 10 a.m. and 9 p.m. each day.   I would suggest that we keep his visits to a minimum on Wednesday and on Thursday I would suggest that you contact Adam or I before coming to the hospital - for no other reason than to maybe save yourself the trip if he really isn't feeling up to it.  At this point we have no idea of what to expect post-op.  He can have 2 guests at a time while in the ICU, and please if you are feeling under the weather or have a cold....then we would encourage you to maybe stop by for a visit after we have been discharged from CHOP.  Oh... and if you were going to bring a balloon, no latex ones. Only Mylar. :)

So that's the latest.  I'm feeling pretty optimistic overall. 




Plum tuckered after our trip.

 

As an aside, my commencement dinner is Saturday night at Albright. I will also be inducted that night into the Alpha Sigma Lambda fraternity for my academic achievements.  I didn't know whether or not to attend, but decided that there are going to be enough family and friends to hold down the fort for one night.  I received a letter in the mail last week indicating that I had been selected by the head of the Business Administration and the Business Administration faculty to speak on behalf of all of the 2012 Business Administration graduates.  They wanted to know if I would accept their offer.  I'm flattered and really proud of the accomplishment but I wonder if I'll be emotionally capable of pulling it off.  I haven't written a single word....  so that is what is on my docket for the rest of the day.  I'd have to say though it's served as a wonderful distraction this past week.  I've made my peace with the surgery and I know it will be a complete success.  The speech, maybe less of a success but certainly something to take my mind off of things albeit temporarily.