St. Jude Visit

Sorry we haven't posted on our blog in a long while!!  Most everyone seems to prefer the Helping Hands 4 Morgan facebook page.  I have had a few requests for updates here on the blog so I promise I will try to keep this site updated as well.

 

Tumor is STABLE and eye surgery went well!! At almost 5 years past diagnosis and only 7 1/2 years old, unbelievably, Morgan is now considered to be a "long term survivor"! One of the nurses taking blood actually referred to her as an "old timer"! To hear these words used about our little miracle child is just surreal in so many ways! We can't say it enough, thank you St. Jude Children's Research Hospital for taking such phenomenal care of Morgan and helping her defy the o...dds, we are so very grateful!!

Morgan's right eye turning inward was what allowed us to get Morgan diagnosed so early and while the radiation greatly helped her eye, it has never been 100% since diagnosis. Unbelievably, she actually has perfect vision but her alignment has always been off and she has always had to compensate, sometimes experiencing double vision. She had some corrective surgery on Tuesday and we are hoping that it helps her eye to be more "normal". Will take a good 6-8 weeks for it to be completely healed but we are really hoping it helps her stop seeing double, especially at school.

 

Getting ready for MRI

 

Always have to get a picture with Danny Thomas!

Our favorite nurse Ms. Lou, we refer to her as our St. Jude mom. No matter what, she always makes time to hang with us after she gets off work, we love Ms. Lou!!

 

Post Eye Surgery :(

 

Being a little camera shy with her eye.

 

One-Eyed Willy finally came to life, ARGH! :)

 

St. Jude Walk/Run To End Childhood Cancer

The annual St. Jude Give Thanks Walk has changed to the St. Jude Walk/Run to End Childhood Cancer and will be held on Saturday, September 26, 2015 at the Bethpage Ballpark in Central Islip. We have signed up our Helping Hands 4 Morgan team once again and are beyond excited to fundraise for this amazing Hospital! I will also be sending out a link to a custom ink booster page where you can purchase a Helping Hands 4 Morgan t-shirt. All the profits from the t-shirt sales will go directly to our Walk goal to help the kids of St. Jude! Once I launch the booster, it will run till August 23 and t-shirt orders will be mailed out about 10 days after the end date. If you have any questions about the walk or the t-shirts, please don't hesitate to ask!

Helping Hands 4 Morgan Team Fundraising Page

Helping Hands 4 Morgan T-Shirts Booster Page

Gold Coast Cares for St. Jude

We attended the annual Gold Coast Cares for St. Jude at Oheka Castle on March 14th and they raised nearly $300,000 for the kids of St. Jude Children's Research Hospital! Thank you to all our friends at ALSAC NY/NJ for putting together such a beautiful event and to everyone that donated to this extraordinary hospital!! It was extra fun for us because this was the first year that Morgan was able to stay awake long enough to enjoy herself! She even got in an extra special Daddy/Daughter dance!

STABLE!!

Scans came back STABLE! Against all odds, our little miracle continues to do well! Doctor said that we can start spacing out her visits a little more so her next trip will be sometime in August before school starts up again. Every time she goes for scans we hold our breathe. Hearing the words "stable" and "no growth" come out of the Doctors mouth is such an incredible relief and reminds us how lucky we really are and to cherish every day we have with her and, of course, Hunter and Wyatt too! So very thankful to St. Jude Children's Reseach Hospital!! Special thanks to Mrs. Baldwin for allowing Morgan to take Mr. Bear, again!

Thank you!

Thank you, Joelle Daddino, for such a wonderful surprise, it was so very touching! Thank you, Lisa Finn, for taking such an interest in Morgan's story and writing such a nice article! Thank you to everyone that helped make this happen, so very proud to be apart of this extraordinary community!!!!



Southold Local - Reader donates her local prize to little girl battling brain tumor

HAPPY 6TH BIRTHDAY MORGAN!!

                                                          HAPPY BIRTHDAY!
               We love you to the moon and stars and back, you are our hero!!!
                                                  

Possibilities - Such a beautiful song!

SO BEAUTIFUL AND SO TRUE!!!!

St. Jude Give Thanks Walk 2014 - Thank You!!

We did it, we surpassed our $10,000 goal and had a great time at the walk today! A huge thank you to our Helping Hands 4 Morgan team and everyone that donated to this wonderful hospital, we can't thank you enough!!

Helping Hands 4 Morgan
St. Jude Give Thanks Walk 2014

We were the 2nd highest fundraising team on Long Island!

Morgan and Mr. Bear's St. Jude visit

STABLE!!!!! No growth, scans looked good! Great way to start the holiday season, so very very very thankful!!
Meet Mr. Bear, Mrs. Baldwin's Kindergarten class mascot. Every child gets to take Mr. Bear home at some point or another throughout the year. Morgan asked Mrs. Baldwin if Mr. Bear could keep her company on her trip down to Memphis, TN to St. Jude. Mr. Bear went absolutely everywhere with Morgan, got his own hospital bracelet, and he even got "sleepy medicine" when Morgan went in for her MRI. Even Morgan's beloved Pooh Bear took a back seat to Mr. Bear. For the first time in 3 years Pooh didn't go back with Morgan for her MRI, she took Mr. Bear instead! Thank you Mrs. Baldwin, words can't express how much this meant to Morgan and to us too!!

 

Morgan and Mr. Bear

Mr. Bear getting "sleepy medicine" before Morgan's MRI

 

Fitness Advantage Fitness Challenge 2014

Thank You to Sarah Sirico and everyone at Fitness Advantage, all the teams that participated, and everyone that donated money and/or auction prizes, we had such a fun day!! $2400 raised this year!  This combined with our current Helping Hands 4 Morgan Give Thanks Walk Team total will give us over $8000 raised so far and so very very close to our $10,000 total!  Less than 10 days left, it's not to late to join or donate! 

St. Jude Give Thanks Walk 2014

Get ready for five days of recruitment and fundraising challenges!!! If you are planning on joining our Helping Hands 4 Morgan Team for the St. Jude Give Thanks Walk this year then Monday is the day to do it! You can earn some great rewar...ds for your fundraising efforts this coming week!

MONDAY: RECRUIT THE MOST NEW TEAM MEMBERS.
Tuesday: Send at least 25 more emails as a team.
Wednesday: Get the most online donations.
Thursday: Have no team members with a $0 fundraising balance.
Friday: Raise the most money online during team week.

 

                                   HELPING HANDS 4 MORGAN WALK TEAM PAGE

 

 

 

3 Years!

Three years and still going strong!

The survival time for most DIPG patients is only 6-9 months after diagnosis.  There is no rhyme or reason why Morgan has survived 3 years while others do not.  It is hard to describe the guilt you feel hearing about so many other children dying of the same tumor and from other types of cancer when your child is somehow defying the odds.  It goes without saying how grateful and overjoyed we are to have Morgan here with us and we feel that is in large part due to the phenomenal care that she receives at St. Jude Children's Research Hospital!  So in memory of all the children that have been taken from this world way too early and in honor of Morgan and all the other children battling cancer everyday, we have once again signed up our Helping Hands 4 Morgan Team in the St. Jude Give Thanks Walk on Saturday, November 22, 2014!  We would love some new team members this year and, if you are able, would greatly appreciate any type of donation, big or small. 

THANK YOU from the bottom of our hearts for your continued support, there is no way for us to put into words exactly how much it truly means to us!!!

1st Day of Kindergarten!

1st day of Kindergarten!  So very thankful and beyond proud!!!

Kindergarten and 3rd grade here we come!! :)

Childhood Cancer Awareness Month

On September 16, 2011 we were given the most devastating news that our little girl had an inoperable brainstem tumor, DIPG, and that she would have at the very most 2 years left with us. Thanks to St. Jude Children's Research Hospital she is going on 3 years!! It is hard to put into words why we love St. Jude so much and how grateful we are to have them take the most phenomenal care of Morgan!

To help give back to this extraordinary Hospital, our Helping Hands 4 Morgan team has once again signed up for the St. Jude Give Thanks Walk! We have been the #1 fundraising team on Long Island the last 2 years and hope to keep our title again for 2014 (we have some competition this year!). If you can, please help us raise awareness for Childhood Cancer and either join our team or help us fundraise for St. Jude so they can continue their mission of helping Morgan and all children fight cancer!!  Thanks for your continued support!

 

 

 

 



STABLE!!!

Morgan and Adam are headed home from St. Jude with the wonderful news that Morgan's tumor remains stable!!!  Kindergarten here she comes!!!!! :)

STABLE!

Keeping this post short and sweet.  Morgan and Adam were down at St. Jude and her MRI showed that her tumor remains STABLE!!!



Wyatt Emerson West
April 2, 2014

I haven't been keeping up with my blog as much as the Helping Hands 4 Morgan facebook site so for those of you that don't follow facebook, here is a picture of the newest member of our family!  :)

Gold Coast Cares for St. Jude

On Saturday, March 15, 2014, over 300 guests gathered at Oheka Castle for the 2nd Annual Gold Coast Cares for St. Jude event. Together, the Long Island community raised over $300,000 for the kids of St. Jude.

We were so happy to have my brother Bill and his wife Marissa and Adam's sister Erin come with us this year. We had a wonderful time and were honored to be apart of such a special evening! Thank you Gold Coast and everyone at ALSAC for everything you do for the families of St. Jude!

 

 

 

 

 

HAPPY 5TH BIRTHDAY MORGAN!

Had a GREAT day today with our little girl on her 5th Birthday!  Celebrated with her classmates at preschool this morning, lunch at Applebees, some fun at Safari Adventure with her best friend and big sister, Hunter, and we ended the day with a yummy snowman ice cream cake.  Morgan is super excited for the weekend when she will have a Frozen (both girls are obsessed with this Disney movie)themed party with all of her girlfriends from school and all of her cousins.  Couldn't have asked for a nicer day!!