MRI Results

Morgan's tumor remains stable, we are always so very grateful for such wonderful news!!  However, what should have been a quick and non eventful visit turned into one of our longer days at St. Jude.  Morgan's port decided it didn't want to work anymore so we had a day full of needle sticks and lots of nurses trying their hardest to get it working again.  A port is an implantable central line surgically placed in Morgan's chest which allows her to receive drugs or other fluids directly into the bloodstream through a large vein and is also used to take blood samples every 4 weeks.  When we first arrived at St. Jude and Morgan had her port placed we were told that most the kids there referred to their port as their "Buddy" but Morgan expressed her disapproval of this nickname immediately so the nurse told her she had to come up with a name of her own.  One night we were walking back to our room from the Hospital and we were looking up at the moon and the stars and she decided she wanted to call her port "Star".  You can watch her helping one of the nurses give "Star" a "drink" in an old video on the bottom left.  Anyway, we are awaiting to hear our options but unless it starts to miraculously work on it's own, she will require a minor surgical procedure to fix the situation on our next visit.  The needle sticks have always been Morgan's main source of anxiety and now she is absolutely terrified, it just breaks our hearts to watch.  Don't get me wrong, at this point in time, things could definitely be a whole lot worse, and we are so very thankful for the scans coming back stable!!!

On a brighter note, I now must share my celebrity sighting with you all!  We had an early morning flight home from Memphis Sunday morning.  Morgan and I were standing in an empty airport waiting for Adam so we could go through security.  We were both staring off into space, tired from our trip, when I look over at Morgan and to my complete shock see Trace Adkins staring down at her.  He continued on and walked right in front of me and I smiled and said hello and even got one in return!  I guess I should share why we like him so much and I'll try to keep it as short as possible.  Adam and I have always liked Trace Adkins, but we liked him even more, after watching him on Celebrity Apprentice a few years back.  He just seemed so genuinely nice and we were really disappointed when he didn't win the whole thing!  Then, in the spring of 2011, because we liked Trace Adkins so much, we decided to watch the new season of Celebrity Apprentice when John Rich happened to be playing for St. Jude Children's Research Hospital.  Like Trace Adkins, we just immediately liked John Rich as well.  At the time, we knew nothing more about St. Jude than what we had seen on TV.  Every time they showed clips of John Rich and the families at St. Jude I would cry and wonder how any family could ever deal with their child having cancer.  John Rich ended up winning that season and raised a great deal of money for the Hospital.  About 4 months later Morgan was diagnosed with DIPG and we became one of those families that we had watched on TV.  We have come to learn that a great deal of the country music community are BIG supporters of St. Jude and that is why both Trace Adkins and John Rich will forever be ingrained in my memory and why we not only like their music, but all the charitable work they do and why it had more meaning to see Trace Adkins in person.

Sorry for the lengthy entry!!!  The fundraiser for St. Jude is April 6th so we will be sure to let you know how it goes!  Thanks for all the nice thoughts on the facebook site!

HAPPY EASTER!!!!

Gold Coast Cares for St. Jude

Back in November when the St. Jude Give Thanks Walk was cancelled, due to Hurricane Sandy, we attended an open house at St. Jude's ALSAC NYC office.

"ALSAC is the fundraising organization of St. Jude Children's Research Hospital.  ALSAC exists solely to raise the funds necessary to operate and maintain St. Jude. The daily operating cost for St. Jude is $1.8 million, which is primarily covered by public contributions.  During the past five years, 81 cents of every dollar received has supported the research and treatment at St. Jude."
                                                            -St. Jude Children's Research Hospital

 

We met some wonderful people at the NYC office!  They have since invited us, as guests, to attend the Gold Coast Cares for St. Jude fundraising event on April 6th at Oheka Castle.  We were so honored to be asked and we are just so excited to go and help further support St. Jude!  We will be bringing Morgan (and Hunter too, of course!) along so that everyone there can see what wonderful care St. Jude is able to provide with all the generous donations they receive, not only at this event, but throughout the year.  We are one of two St. Jude families attending.  I was told that they would be doing a little write up on Morgan and would also like to mention our Helping Hands 4 Morgan team from the walk!  Which, by the way, we've had many people express interest in joining the team and/or donating for this years Give Thanks Walk in November 2013 so we will keep you all posted on the info as soon as we know anything.  The walk will definitely be an annual event for us!

Thanks for all the wonderful Birthday wishes for Morgan that were left on Sarah's facebook page!  Adam and I are probably some of the last people on this planet not to have facebook accounts so sometimes we forget to check the site and Sarah kindly reminds us every once in awhile to take a look.  In the future, if you would like, you could always leave a message directly on this blog.  We love hearing from you all, it always lifts our spirits knowing how much support our entire family has had from everyone!!

Last, but certainly not least, we wanted to take a minute to say a big THANK YOU to Peconic Pediatrics!!!  I'm always writing how much we love St. Jude but we also love you guys too, we would not be at St. Jude if it wasn't for you and Morgan surely would not have been diagnosed so early without your excellent care and speedy actions, reactions, and responses to everything that followed!  EVERYONE there takes such wonderful care of both Morgan and Hunter and is ALWAYS so friendly and helpful with whatever we need.  You guys are the best of the best and we just wanted to let you know how much we appreciate everything you do!

Morgan has an MRI scheduled for March 22nd.  We will update on her results as soon as we can and will be sure write a post after the fundraiser as well!

Hope you all have a Happy St. Patrick's Day!