Sunday, July 21, 2013

Stable Scans & Sibling Star Day = One Happy Family!!





Morgan's artwork was framed and hung up in the sedation area of St. Jude!  In case you couldn't make it out, Morgan's masterpiece is a picture of her and I, along with our hand prints! :)

 
Sibling Star Day!!

Western theme





It has certainly been tough for Hunter to deal with everything that has been going on but she is doing a great job and we are so very proud of her!!!  She had so much fun at Siblings Star Day and she deserved every bit of it!!



 
 
 
STABLE!!!!  Morgan's health at this point in her diagnosis is nothing short of a miracle!!  I think all of your prayers and thoughts are being heard because Morgan is among less than 10% of kids with DIPG to be doing this well at this stage and we are just so very thankful!  We have, for some reason, been given this gift of time, however long that may be, and we are enjoying every minute we have with her!  At this point, no one knows how much extra time she has, it may only mean months but it could also be years, there is no way to know.  They tell us that we should try to live life more "normal" but, we kinda forgot, what is "normal"?  We really can't seem to remember life before Morgan's diagnosis.  The words cancer and brain tumor are used so often in our house that Hunter and Morgan pretend their baby dolls have brain tumors and they take them to St. Jude to get treatment.  That is just so not "normal" but, then again, it's "normal" for us; one of those parenting moments where you don't know whether to laugh or cry.  Morgan has 3 more rounds of her clinical drug and she will officially be at the 2 year mark where, technically, the study ends and she is supposed to stop taking the drug.  There is something called "compassionate use" where they will possibly let her continue to take the drug but the question remains...is it doing anything??  Every other child that we have met at St. Jude with DIPG that was on the same drug has since passed?  Is the drug somehow working on Morgan or is it that Morgan has just been so atypical from the beginning?  We have a lot to think about before our next visit in September! 
 
 
As you can see, Hunter participated in St. Jude's annual Siblings Star Day and had a blast!  Siblings Day is a day to honor all the siblings of St. Jude patients by letting them know just how truly special they are.  The child life specialists did a great job!!
 


Monday, July 1, 2013

St. Jude Give Thanks. Walk.

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