Kids for Kids Foundation - A Day at the Bronx Zoo

The kids told the face painter if they wanted something nice or scary and then the face painter surprised them with an animal.  Hunter surprisingly chose scary and because of her missing teeth looking like fangs, she got a snake!  Morgan, of course, chose nice and got some cute little penguins!



Daddy's little girl!

Kids for Kids, successfully raises funds and spreads awareness for the Children of St. Jude Children's Research Hospital.  On Saturday, June 1, New York City professionals united with their families for a one-of-a-kind event to raise awareness and support for the children and families of St. Jude Children’s Research Hospital. We were told about 1100 guests gathered at the Bronx Zoo for a day of fun, which included full-day admission to the zoo, face painting, raffle prizes, character visits, tours and more!  It was disgustingly hot but we still had a GREAT time.  We were also honored to be asked to say a few words about Morgan and St. Jude.  This incredible organization raised $751,932!!  It was simply amazing and truly inspiring, we were so happy to be apart of this special day!  It costs 1.8 MILLION dollars a day to run St. Jude and it is because of supporters like this that the hospital is able to help so many families like our own! 

THANK YOU Kids for Kids!!!

St. Jude Visit

Our tough little peanut!

Our toothless princess!

Happy belated Mother's Day!!   Being a Mom has brought me the greatest joy in my life and I would like to thank my wonderful husband for giving me the 2 best Mother's Day gifts ever, Hunter and Morgan!! 

I did get some other pretty great Mother's Day gifts this year as well...Morgan's port decided that it would work again and her MRI came back stable!!!!!  Our next visit is in July.  They will be having their annual "Siblings Day" (we have never been), a day full of fun for all siblings of patients to let them know how special they are.  Hunter has been an absolute trooper through all of this but we know how hard it is for her to have us coming and going all the time and watching Morgan get so much attention so we are beyond excited for her to have a special day just for her so she knows just how incredible she is too!     

As you can see, Morgan had a rough week...2 days before leaving for St. Jude Morgan took a bad fall down our stairs and broke her collar bone!  I was right behind her on the stairs and just helplessly watched our little peanut tumble down 5 or 6 stairs, it was awful!  We took her to the ER and they actually told us that nothing was broken, 24hrs later she was still in a lot of pain, extremely protective, and just not wanting to do much of anything.  We even called to have her x-rays looked at again and they still insisted that nothing was broken.  Very long story short, St. Jude once again came to the rescue and confirmed that not only was it broke but it had become displaced!  Unfortunately, nothing can be done for broken collar bones besides wearing a sling and waiting about 8 weeks for it to completely heal.  Morgan has quickly adjusted to life with one arm and continues to amaze us every day with her strength and spirit, she's just incredible! 

Just wanted to thank Peconic Pediatrics for all their help too, you guys are truly awesome!

Meanwhile, while we were gone, Hunter lost both her top 2 front teeth!  She is losing her baby teeth all out of order and had previously lost her top 2 lateral incisors so now she has 4 teeth missing up top and looks hysterical! 

Facebook

I finally joined the bandwagon and signed up for facebook.  By doing so, Sarah was then able to give me access to the Helping Hands 4 Morgan facebook account which I can now help her out with.  I probably won't be doing much with my own personal page, I mainly just wanted to be able to keep more up to date with everyone on the HH4M site and the St. Jude Facebook page.  I will definitely keep using my blog as my main source of updates but at least now when I post something on my blog I can directly update the facebook page as well with a link (I think/hope?).  I am learning as I go so please forgive me if I mess anything up! 

We also found out that over $280,000 was raised for St. Jude at the fundraiser we attended last week!!  You can visit their St. Jude NY & NJ Facebook page to view photos from the event: http://on.fb.me/YwEmER

Gold Coast Cares for St. Jude Fundraiser

Morgan and Christian
Christian is a patient at St. Jude with an Anaplastic Ependymoma (a type of brain tumor)

Our 2 beautiful princesses!

What a GREAT event!!  We had such a wonderful time, Oheka Castle was gorgeous!  We met another St. Jude family that couldn't have been nicer and as you can see Morgan made a new little friend.  As always, the whole staff at ALSAC was awesome and went out of their way to make us feel so comfortable.  They had some pretty spectacular donations made for both a silent and live auction as well.  This was actually the first time they held this particular fundraiser but I believe they are looking to make it an annual event.  Thanks to some very generous donors, it was a very successful evening and it was pretty spectacular to be a part of it!

A big thanks to everyone at ALSAC for all the wonderful work you do for St. Jude!!!!!!!! 

St. Jude had a professional photographer so I'll post some more pics of the event as soon as I can.

SAVE THE DATE

St. Jude Give Thanks. Walk. Long Island

 

Saturday

November 23, 2013

 

Bethpage Ballpark

Central Islip, NY

 

Registration opens July 1, 2013!!

www.givethankswalk.org

Our Helping Hands 4 Morgan Team will be participating again this year and we are super excited!!  Last year we were the #1 team on Long Island, raising $6755.  With your help, we would love to become the top raising team in NY!   If anyone has any questions, please don't hesitate to contact us.  We will let you know as soon as we are registered. 

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!