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| Some of our Helping Hands 4 Morgan team members from last year! |
Saturday
November 23, 2013
Bethpage Ballpark
Central Islip, NY
Our Helping Hands 4 Morgan team is once again
participating in the St. Jude Give Thanks Walk on Saturday, November 23,
2013! Last year, we were the #1
fundraising team on Long Island, this year we want to be #1 in NY!! We are reaching out to family, near and far;
friends, new and old; and our wonderful North Fork Community to help us reach
our goal and to help St. Jude and help other kids just like Morgan. If you are unable to donate, we would love to
have some new team members this year to help us fundraise or if you would like
to help out by simply spreading the word about the walk through social media or
even hang up a flier in your office/workplace, we would so
greatly appreciate it! Hunter and Morgan are actual fundraising participants this year!
It is truly difficult for us to put into words just how
much we LOVE St. Jude and to describe how truly spectacular they are. Words just don’t do it justice. It is, without a doubt, one of those places
where to see it, is to believe it but we have tried our best to express how
awesome they are and to share a little glimpse of our journey so far. I apologize in advance for the length of this
entry but we hope you know how much we appreciate you taking the time to read
it!
In the early part of September 2011, at the age of 2 ½,
Adam and I noticed Morgan’s right eye occasionally turning inward. At the very worst, we worried that she would
need glasses; then on September 16, 2011 we were given the devastating news
that our daughter had a brain tumor. One
day later, we were given even more earth shattering news. Morgan had a Diffuse Intrinsic Pontine Glioma
(DIPG) and, because of its location in the brainstem, it was not only
inoperable, but terminal. There is no
cure for DIPG; the average life expectancy of a child with DIPG is only 11
months after diagnosis. We were told
that we would have no more than 2 years max with her.
With the help of Peconic Pediatrics we quickly began
researching our options; St. Jude kept rising to the foreground. Once a place only seen to us on TV; St. Jude
Children’s Research Hospital would soon become a beacon of hope. The hardest part was being away from our,
then, nearly 5 year old daughter Hunter who had only just started Kindergarten
at the time. We made the difficult
decision to have Adam stay home with Hunter while Morgan and I stayed at St.
Jude for 7 weeks.
We, naturally, had reservations about making the right
choice; we were scared to be so far away from home, from everything and everybody
we knew and loved, but after the first day there, we never revisited that
thought again. The Doctors and Nurses
that take care of Morgan are PHENOMENAL! She is not just a patient to them, but
a little girl that they truly care about.
It is a hospital that treats catastrophic illnesses, a hospital that
could be filled with sadness and fear, but it is not; St. Jude Children's
Research Hospital is a hospital full of incredible people and inspirational
families that make you want to smile and fight rather than lay down and cry but
most of all, it is a hospital full of HOPE.
By the end of the 7 weeks, we were scared to go home, we were scared to
leave the comfort of St. Jude and everyone there we grew so very attached to.
Everyone we interact with at that Hospital is so kind and
I mean EVERYONE! What makes St. Jude so
unique, what makes them stand out from the rest is not just the extraordinary medical
care but the little things that go on at the Hospital on a daily basis. It’s the head maintenance man in the
Grizzly House who always stops to say hello and see how we are doing. It’s the workers in the Kay Kafe who know
Morgan by name and always try to talk to her, even though she won’t say two
words to them. It’s the child life
specialist that always makes time to have a special appointment for our older
daughter Hunter when she visits. It’s
the Doctors and Nurses you pass in the hallways who will actually stop to give
you a hug and say hello. It’s the
friendships we have with other families and the unspoken respect we have for
one another, it’s that common bond that nobody else will ever understand. We have come to appreciate every person
there. We’ve been in and out of
hospitals through the years and we’ve never experienced the kindness and care
that we get at St. Jude. St. Jude is
truly a special place like no other.
Morgan received 6 weeks of radiation along with an oral
clinical drug that she continues to take every day. We visit St. Jude every 8 weeks
for an MRI and regular check-up. Miraculously,
it will be 2 years in September and Morgan’s tumor remains stable! She is among an extremely small percentage of
children to be doing so well at this stage of her diagnosis. She is full of life and love and her strength
and unrelenting spirit keeps us going every day. She is anxiously awaiting preschool this
September, a day we never thought we would ever get to see. With the help of St. Jude, we hope she continues
to defy the odds!
Here are just a
few more reasons to support St. Jude Children’s Research Hospital:
1.
The daily operating cost for St. Jude is $1.8 million, which is
primarily covered by public contributions.
2.
During the past five years, 81
cents of every dollar received has supported the research and treatment at
St. Jude.
3.
St. Jude pays ALL medical expenses not covered by insurance;
families at St. Jude will NEVER receive any sort of bill from them! We recently had to switch health insurance
plans and our new plan does not pay for anything out of state or out of network,
meaning, we would have had to sell everything we owned to have Morgan treated
there!! Morgan is under the best care in
the world thanks to St. Jude and thanks to contributions from supporters like you
and we are so very thankful!!!
4.
Research findings at St. Jude are shared freely with doctors and
scientists all over the world. You are
not only helping kids at St. Jude but you are helping kids everywhere!!
5.
In 1962, the survival rate for acute lymphoblastic leukemia
(ALL), the most common form of childhood cancer, was 4 percent. Today, the
survival rate for this once deadly disease is 94 percent, thanks to research
and treatment protocols developed at St. Jude.
6.
St. Jude has developed protocols that have helped push overall
survival rates for childhood cancers from less than 20 percent when the
hospital opened in 1962 to 80 percent today.
7.
Parents magazine named St. Jude as one of the top children's cancer
care hospitals in the U.S. for two consecutive surveys.
Thank you for all your continued support!! Please visit our official St. Jude HelpingHands 4 Morgan team website where you can find more information about the walk,
become a member of our team, or make a contribution to our team or one of our team members.
THANK YOU!!!!
All our love,
Nikki, Adam, Hunter,
and Morgan
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Adam and Morgan were down at St. Jude the end of last week for yet another MRI and Morgan's tumor remains stable!! This was her first MRI since coming off her chemo (study drug) in October so we couldn't be happier! All her blood counts came way up too since stopping the drug which means she can come off her very last pill that she was taking. She is officially drug free! She's fighting this tumor with everything she's got and we are just so proud of her! She is a walking miracle, we have so very much to be thankful for this holiday season! We'll head back down the beginning of February.
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