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Friday, April 15, 2011

Change of Plans

We received some disappointing news yesterday from the Drs.  After the flow study scan yesterday they were able to confirm that Avery has an obstruction (most likely scar tissue)  in her ventricles which are causing her CSF to not circulate from the brain to the spine.  The shunt has been doing its job well is the positive thing.  In order for the clinical trial to be effective, the fluid must circulate between head and spine.  Luckily, the neurosurgeon at Cornell in NYC is confident that we can do surgery to correct this.  The plan is to go in tomorrow morning and spend the weekend allowing her ventricles to fill with fluid.  Right now, the shunt has left them very small and as a result do not allow for much room to manuever when in the brain.  If we change the flow on her shunt, we can back up some of the fluid - expanding that area a little and allowing for the camera to be inserted for surgery.  Monday morning they will do an MRI to confirm that she has indeed done this and then she will  be wheeled directly into surgery.  The surgery will include them drilling a small hole on the top of her head and pushing a camera down into the hole towards the 3rd ventricle.  Once in, the neurosurgeon will create a hole in the wall of the ventricle that will act as a new pathway for the fluid  to circulate.  All in all, a small brain surgery by far -- but another brain surgery nonetheless.  Recovery time should be minimal - 1-2 days.  After they do this, we will need to repeat the 2 day flow study to ensure that the surgery has corrected the blockage issue. 

This week has been much more busy than we had anticipated.  A lot of waiting around, and of course a lot of walking.  Memorial Sloan Kettering doesn't appear to have the organization that St Jude has, but it does appear to be a great hospital.  We are comfortable with Dr Kramer and also with the Neurosurgeon that we met today.  Please pray that our comfort level turns into an uneventful surgery and a positive Flow Study for Avery next week. 

Although obviously from out of town to any New Yorker, we have managed to find our way around this city pretty well.  We learned some important lessons about Cabbies and grocery stores this week...never get in a cab that isn't yellow -- they are crazy and unlicensed.  Grocery stores in NYC take all the crap we buy in bulk, empty it out of its carton and mark up the price 150%.  Do you know what we paid for 1 Capri Sun juice box?!  99 cents!!  Needless to say, we may need some care packages with toddler snacks in them.  The walking is the best.  We walk about 5 blocks to the hospital each day and Central Park is only about 8 blocks away.  We have walked a lot this week and really enjoyed the sights.  We have been to Central Park, FAO Schwarz, Radio City Music Hall, and Rockefeller Center.  And still there is so much to see!  We haven't tried the subway yet, as the lines don't run on the East Side as much, but maybe in the next 2 weeks we will venture over. 

Avery has completed the transformation into the Terrible 2's.  She officially is unreasonable during a tantrum, and has taken to ripping off her glasses and throwing them.  The funny thing is she will stop the antics to give us both hugs if asked.  Once done, she then goes back to fighting us to get down or screaming her high pitched neuroscream.  Although such sign of relief for us, I really don't know how the rest of you parents survived this stage with your own children without the "she has cancer - let it go"  mind set that Jeremy and I have ingrained in our heads.  I'm just saying. WOW.  Now this isn't a 24/7 type attitude that we see, but it definitely rears it's ugly head a few times a day.  Oh and eating out is no longer the easy task it has always been for us in the past.  We now understand why no one eats out when they have a 2-3 yr old. 

The Ronald McDonald House is a very nice facility.  We haven't spent a lot of time exploring it as we have done a lot of exploring in the city instead.  They have a set up very similar to the Target House with dinners and activities for the kids and families.  It will be a nice place to spend time over the next few weeks when we need to escape the hustle and bustle of the city. 

I've asked my brother to tweak the blog a little -- jazz it up so to say, so you may see some changes over the next few weeks.  Eventually we'll figure out what fits.  Hopefully everyone noticed that I finally found out how to get auto messages sent when I enter a new post.  Sorry that took so long, I am not exactly savvy on the blog thing yet. 

Please pray for Avery as she once again goes under the knife for her head.  Pray that there are no complications and that we are able to proceed as planned to solidify the outcome that we already know is coming -- remission.  The next few weeks are going to tough on us as a family as Jeremy and I trade places each week.  We won't spend any time together unfortunately and that is going to be a change from the last time.  We are really trying to avoid missing as much time away from work as possible and that means flying on the weekends only.  Thanks to all that are helping us by taking us to the airport, visiting, watching Cy & Jersey and collecting the mail.  And also a big thanks to everyone for the prayers and support.  This is one more little bump in our journey but nothing we can't handle.


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