Merry Christmas!

 

 

We had such a spectacular Christmas, we hope you all did as well!  Merry Christmas and Happy New Year!!!



November MRI

Morgan got an MRI this past Monday and everything looked stable!!  She's really doing great, we have a lot to be thankful for! 

St. Jude Give Thanks Open House

Helping Hands 4 Morgan



Sabrina Soto from HGTV with Morgan and Ashley (another St.Jude patient)
Click link for video
 

We had a GREAT time at the Open House!  We raised $6635 and were the #1 team on Long Island!!  We met lots of wonderful people and hope to get more involved with the fundraising and awareness aspect of St. Jude.  Giving back to St. Jude has been like therapy for us, it made us feel so good and we couldn't have done it without all your support!  We look forward to doing it all over again next year, the pressure is on, we have a title to keep! :)

Make-A-Wish

As most of you know, Make-A-Wish is very near and dear to our hearts!  Back in February they granted Morgan's wish to meet Pooh Bear and Princesses and sent us on the most phenomenal vacation to Disney World. 

Macy's has partnered with the Make-A-Wish Foundation this holiday season.   

MACY'S BELIEVE CAMPAIGN
November - December

"We're a big believer in holiday miracles.  That's why every holiday season, in partnership with
Make-A-Wish, we invite people of all ages to write a letter to Santa and help make wishes come true.  For each letter received, we donate $1, up to $1 million, to help grant the wishes of children with life-threatening medical conditions.  Thanks to believers everywhere, we've donated more than $4.9 million since 2008!"

Please take a few minutes and visit the link above and create a letter to Santa and help make a child's wish come true!  If your child is in the Cutchogue East Elementary School, they have already brought home a wonderful letter regarding this campaign.  Students from the College of Business Honors Program at Stony Brook are teaming with the school to help bring joy to a local child by sponsoring his wish to go to Disney World.  Letters are being collected in a box in the Main Office at the Elementary School until December 7th or drop off a stamped letter in a Santa Mail Letter Box at your local Macy's now through Christmas Eve. 

Will post again next week and update you on Morgan's MRI and the St. Jude Open House!

St. Jude Give Thanks Walk Update

I just wanted to let everyone know that I received an email from St. Jude informing us that the walk in Long Island has been cancelled!  :( 

"As our city and region recover from the devastating impact of Hurricane Sandy, our thoughts are with those who have experienced losses to their homes, businesses and local communities. We are saddened to tell you that we have made the difficult decision not to move forward with holding the 2012 St. Jude Give thanks. Walk. in Long Island, NY at the Bethpage Ballpark, as well as in a few other surrounding areas affected by this storm.

At St. Jude, we see strength, hope and resilience in the faces of our patients and families every day. We know these same qualities lie in our community and we look forward to coming back stronger than ever. Thank you for your continued support of St. Jude. You are truly making a difference in the lives of patients at St. Jude and in communities everywhere."

While we are extremely disappointed with this news, we completely understand and are beyond proud of our team for helping raise $6160.00 thus far for St. Jude Children's Research Hospital!  Thank you to all of our Helping Hands 4 Morgan team members and all of our donors for supporting our family and this extraordinary hospital!!  Words cannot express just how much this has meant to us.

In lieu of the walk, they are having an open house hosted at the ALSAC/ St. Jude New York City office.  The Regional Event Specialist left me a message today asking if we would be interested in attending.  Adam and I would very much like to go and would be honored to represent our team!  So we will be heading to NYC Saturday morning and then leaving for St. Jude Sunday afternoon for yet another scan with Morgan.  We're hoping for some more positive news before the holidays!  We will keep you posted!

Have a wonderful Thanksgiving! 

 

 

 

St. Jude Give Thanks Walk Update

So far we have raised $5313 for St. Jude!!!  Just wanted to remind everyone that the walk is on November 17th, less than a month away!  Please visit our Helping Hands 4 Morgan team website and donate to this wonderful hospital or join our team and walk with us in November.  We have far exceeded our goal but we would love to keep going! 

Hurricane Grill and Wings in Hauppauge will be helping us to continue the fun and fundraising after the walk. For all walk participants that eat at Hurricane Grill and Wings after the walk, Hurricane will donate 20% of the bill to St. Jude!!

MRI Results

Our tough cookie!

Morgan had an MRI this past Monday and everything still looks stable!!  There was basically no change at all in the images which, at this point in time, is the best we can hope for.  We know there is no more possibility of the tumor shrinking so no change is a very good thing!  Without a cure in sight we just have to keep hoping that things stay as they are for as long as possible!!!  She is doing great and everyone at St. Jude is extremely pleased with her overall health.  This one year mark that we have now surpassed is a very big milestone for a DIPG patient.  Less than 10% of DIPG children will live more than 18 months!  It's hard to say that we consider ourselves lucky but I can say that we are extremely grateful for this extra time that we have been given, time that one year ago we never thought we would have.  Morgan's adorable smile, her infectious laughter, and her big heart keep us fighting everyday!

St. Jude Give Thanks Walk Update
We have raised $4623 so far and, on a competitive note, we are in 1st place!!! I can't begin to express how appreciative we are of this support for St. Jude! 

Why Support St. Jude?

Any donation, big or small, will help this extraordinary hospital and families just like ours.   

Visit our Helping Hands 4 Morgan team website and help St. Jude find a cure for DIPG!  

Hey St. Jude

Just wanted to share this inspirational video I received in my email today!  

I keep forgetting to mention that September also happens to be Childhood Cancer Awareness Month .  Cancer is the leading cause of death in children under the age of 15!  Please take a moment to read over the rest of these startling facts and statistics I found on The Children's Hospital of Philadelphia website. 







childhood-cancer-awarenesss-infographic

I also wanted to let you all know that we have raised $1823 so far, we have officially surpassed our $1500 goal for the St. Jude Give Thanks walk and we hope to keep going!!  If you would like some more information on St. Jude and where your money is going; here is a link that you can take a look at. 
St. Jude - Quick Facts

THANK YOU to all our donors, supporters, and our Helping Hands 4 Morgan team members!  We are so very proud to be walking for such an amazing cause! 
St. Jude Give Thanks Walk

One Year Anniversary

This past Sunday, September 16th, marked our 1 year anniversary of Morgan's DIPG diagnosis. It was one year ago that we received the worst news of our lives and our whole world was turned upside down!  One whole year has gone by and Morgan has somehow defied the odds and is still going strong, when sadly the few other children that we knew fighting this same vicious tumor have lost their battle.  We know how lucky we are to have Morgan here with us today, we appreciate every second of every day we have with her! 

It has also been one year full of love and support from family, friends, and community members and we just wanted to say THANK YOU!

Lastly, it will be our one year anniversary at St. Jude Children's Research Hospital on October 3rd.  I wish I could put into writing just how incredibly wonderful St. Jude has been to us.  After Morgan's diagnosis we felt helpless and desperate, our baby girl was basically given a death sentence.  I will never forget the feeling of comfort and hope the instant we walked through the doors at St. Jude.  They have become a second home to us.  I can't even begin to say enough about the doctors and nurses that take care of Morgan, they are PHENOMENAL!  She is not just a patient to them, but a little girl that they truly care about.  Here is just one example of how wonderful they are;  we always try to visit our regular crew of doctors and nurses when we go down to St. Jude, but sometimes our visits are short and we don't always get to see everyone.  Well, this one particular nurse that Morgan had during radiation called me the day after we got back from our last visit and apologized to me for not looking us up when we were there!!  I wanted to cry.  This is how truly special they make you feel!  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 rather than cry.

These are just a few reasons why St. Jude means so much to us and why we would love to give back to them by taking part in the St. Jude Give Thanks Walk on November 17th.  Any donation big or small is greatly appreciated and every penny goes to this wonderful hospital, a hospital that we hope can one day find a cure for DIPG!  If you cannot donate and would like to join our team and help raise money, we would love to have you.  We appreciate all those that have joined our team and are thankful to all of our donors that have helped us raise almost $1400 so far!!  If you are interested in learning more, please click on this link and it will bring you to our team website. 
Helping Hands 4 Morgan

St. Jude Give Thanks. Walk.
November 17, 2012

Location: Bethpage Ballpark
3 Court House Drive
Central Islip, NY 11722

Event schedule:
Registration starts at 9 a.m.
Walk starts at 10 a.m. at the entrance to the field
near home plate

  

St. Jude Give Thanks Walk

We have officially signed up for the St. Jude Give Thanks Walk on Saturday November 17, 2012!  We are registered under the team name Helping Hands 4 Morgan.  Please help us raise money for the kids of St. Jude.  Join our team or donate to our goal at
Helping Hands 4 Morgan

St. Jude Give Thanks Walk
Location: Bethpage Ballpark
3 Court House Drive
Central Islip, NY 11722

Event schedule:
Registration starts at 9 a.m.
Walk starts at 10 a.m. at the entrance to the field
near home plate

We are super excited to help out St. Jude in any way possible and appreciate all of your continued support!!

MRI Results

Morgan got her MRI this past friday.  There is an area of potential concern that we are keeping an eye on.  Her Doctor is not quite sure what to make of it at this point in time but all in all she said that things are stable.  Physically & mentally, she is doing exceptionally well so everyone at St. Jude is extremely pleased.  Morgan's overall good health at this point in time is as much as a mystery as DIPG itself.  We consider ourselves to be extremely lucky within the DIPG world and we can only hope that our luck continues!!  We head back in the beginning of October. 
Hunter did exceptionally well with her procedure and far exceeded our expectations with her recovery.  From start to finish we had a very good experience and were extremely happy.  The daily dose of vanilla ice cream helped a tremendous amount as well!!! :)

Update

We had to postpone our trip to St. Jude this week because of Morgan having pink eye.  The pediatrician believes that it is viral and apparently there is nothing you can do for viral pink eye other than wait it out.  St. Jude has some pretty strict guidelines that they follow, therefore, they did not want Morgan's pink eye anywhere near their hospital and rightfully so.  We will have to anxiously wait till the 17th to get Morgan's next MRI and results.  Other than the pink eye Morgan is still going strong!  She wakes up every morning with a smile on her face and goes about her day without a care in the world.  Her strength, her courage, and her love are an inspiration to us, it is what keeps us going everyday!!
In the mean time, Hunter will be having her own trip to Cohen's Children's Hospital here at home to get her tonsils and adenoids out this coming week.  We're hoping for a speedy recovery!  She is definately nervous but we just keep reminding her that she gets to eat LOTS of ICE CREAM and that always seems to make her feel better!! 
We will keep you posted on Morgan's MRI results and be sure to update you all on which flavor ice cream helped Hunter recover the quickest!!

Happy 4th of July!

Lab Work

Morgan's labs came back great, her ANC went up from 600 to 2044 in one week!

St. Jude Visit

Morgan had another MRI this past Monday and while we didn't get the exciting news that we got last visit, we did find out that the tumor is at least stable (no growth!).  We were also able to successfully take her off the very low dose of steroid that she had been on since January so we are hoping that she can continue steroid free for as long as possible.  It is very rare that a child at this stage of DIPG not be on steroids. 
On the down side, her blood work showed that her counts were low so we will have to be extremely cautious with exposing her to any germs, she is very vulnerable to getting sick.  If she should get sick and have a fever of merely 100.4 or more we would have to take her to LIJ immediately.  We will get her counts checked again this coming week here at home.  If her ANC levels drop too much more she will be taken off the clinical drug (St. Jude protocol) that she is on until her levels go back up and right now she is dangerously close to being taken off.
We still have no answers as to why Morgan is doing so well & it is still too early to know if the drug is having any positive effect but all in all the Doctor's thought she looked great and they were really happy.  She is extremely brave and beyond tough, we couldn't be more proud of her!!!  Morgan's next MRI won't be until the beginning of August but in the mean time we will keep you updated on her blood work next week. 

Thank you all for your continued support, it means a great deal to our entire family!

Madelyn

I wanted to take some time to tell you all about a wonderful family we were so fortunate to meet during the absolute lowest time in both our lives.  Like us, Angela & Donnie, had a sweet beautiful little girl (3 1/2 at the time, Morgan was 2 1/2) who had been diagnosed just 2 weeks prior to Morgan with a vicious malignant tumor in the front of her brain.  It was a tumor even more rare than Morgan's.  Her family was told that they would have about 5 years with her.  We saw them every morning in the radiation waiting area and chatted with them as if we had known them for years.  Not only did we both have little girls with terminal tumors but we both had a kindergarten aged child at home dealing with all the craziness as well.  Angela & Donnie happened to live locally so they not only opened up their hearts to us but their home as well.  It is a friendship & bond that we will have forever. 

Madelyn took a turn for the worst earlier this year and we were deeply saddened last Tuesday when she lost her 8 month battle with cancer.  Although we only knew her for a very short time, she will always have a special place in our hearts.  We will never forget Madelyn, she was a Rapunzel loving, beautiful princess, who always had a smile on her face and a gorgeous Disney Princess nightgown on!

I was reminded today that May is National Brain Tumor Awareness Month.  Please take a moment to read some facts about pediatric brain tumors.  The statistics are pretty shocking!
http://www.pbtfus.org/medcomm/research/Pediatric-brain-tumor-facts-updated.html
http://www.thecurestartsnow.org/about/brain-cancer/

MRI Results

We hate to use the words "good news" when it comes to anything related to Morgan's tumor because the only good news we could ever hear would be that it was gone, so instead of good news we'll say that we had some unexpectant positive news at her recent visit to St. Jude.  She had yet another MRI this past Monday and the images showed that the tumor has actually shrunk a little!  She is still in what they call the "honeymoon" stage from the radiation (meaning the radiation is still having some positive side effects) so while we were extrememly happy to hear this news, it doesn't mean that the tumor won't start to grow again sometime in the next few months.  We were reminded that, typically, a DIPG will start to progress 6-9 months after diagnosis (with radiation treatment) and that the median age of survival is 11 months and maximum is about 2 years.  Morgan was diagnosed on September 16, 2011 so she is right in that area of possible progression.  We are hoping that she continues to be the atypical patient that she has been from day 1.  There is no rhyme or reason why Morgan has been doing so well through all of this, but whatever the reason, we just hope she continues on this path! 

Hunter came with us to St. Jude this visit and had an appointment of her own with the child life specialist.  She was beyond excited to come & have some special time of her own at the hospital.  She also helped take extraordinary care of her little sister!   We are extremely proud of both Hunter & Morgan!!

Our thoughts and prayers go out to all of our friends at St. Jude!

Happy Easter!!

Hope everyone is enjoying this beautiful Easter Sunday! 

St. Patricks Day

I know St. Patrick's Day has come and gone but I had to post this picture of Adam & his green beard for everyone to see!

St. Jude - 2nd MRI



Morgan & Daddy in Memphis Airport

Morgan's MRI showed an improvement in the amount of swelling around the tumor.  Everything seems to be stable for the time being and her Doctor was happy not only with the results but with Morgan's overall health and appearance.  Her next MRI is scheduled for mid April.  In the mean time, Morgan's strength and unrelentless spirit keeps us going!

Disney World

We recently returned from a Walt Disney World vacation of a lifetime!!  We're waiting for our Disney photopass pictures to come in the mail and we have about 1500 pictures of our own so as soon as we sort through them all we will be sure to post some of our favorites. The highlight of the trip was meeting all the Disney characters!  Both Hunter & Morgan each filled up an entire autograph book and about a 1/4 of a second.  It became an obsession and thanks to a special pass that allowed us to jump to the front of almost any line we we were able to see just about every one.  We even had breakfast with the characters at Chef Mickey's, The Hundred Acre Wood, and at Cinderella's Castle.  It truly is a special place and the kids just LOVED being there.  To see the joy and happiness in their faces everyday brought us to tears.  Hunter even lost her very first tooth on line with Daddy at the Pirates of the Caribbean ride!  We have the most wonderful memories, it was a vacation like no other.  Thank you to Make-A-Wish and Give Kids the World for an absolutely "MAGICAL" week at Disney World!

Disney was a really nice escape from reality but unfortunately we had a rude awakending coming home and had to bring Morgan to the ER at LIJ the very next day.  She started to develop a nasty cough at the very end of the trip but somehow held out till we got home before she became very sick.  Her blood work came back ok but a chest xray showed what could have been the beginning of walking pneumonia.  After a week of much needed rest and with the help of some antibiotics she is feeling much better.  We will be heading to St. Jude next week for Morgan's 2nd MRI since her treatment.     

Happy Birthday Morgan!

We celebrated Morgan's 3rd Birthday today with her very first manicure/pedicure & of course pink cupcakes!! 

Happy 3rd Birthday!

St. Jude Visit

We went down to St. Jude for a quick follow up (just a check-up not an MRI) to Morgan's last visit in which we found out she had a significant amount of swelling in the area around the tumor.  It was enough swelling that we actually could not see if the tumor itself had shrunk or even remained stable & was causing her once stable left eye to occassionally turn in just as her right eye had done back in September.  Her doctor put her on a low dose steroid, in hopes to reduce the swelling, but we were concerned nonetheless.  With the help of the steroid her eye movement is doing much better & she even gained a pound!  On the down side, the steroid has been giving her tummy aches & more recently causing a lot of restlessness at night so they decided to cut down on her steroid dosage.  Morgan is still swallowing all her pills like a champion and is as strong willed and stubborn as ever!  We are more than anxious for our next MRI at the end of February but in the mean time we are looking forward to our Disney trip coming up!

Just in case anyone had not read our thank you letter we had put in the Suffolk Times at the end of December we are posting a link on the right hand side under the Helping Hands 4 Morgan Fundraiser Links.  We just want to be sure that you all know just how much your love and support has meant to us!

Morgan

We have finally started to put together a site dedicated to our little fighter, Morgan!  Please forgive us, we are learning as we go, this will be a work in progress.  Our hope is not only to keep all of you updated on her condition but to provide you with some links and information that we think are worth your time.  It saddens us that it took something of this magnitude to open our eyes to not only the extent of childhood brain cancer and it's major lack of research funding (http://www.thecurestartsnow.org/about/brain-cancer/) but also for us to realize that there are so many wonderful charitable organizations that help families going through these catastrophic illnesses!  In fact, we will be going to Disney World in February thanks to Make-A-Wish and Give Kids the World (this is the extraordinary place where we will be staying!).  The story on the founder of Give Kids the World is pretty incredible so if you have a free minute please check these sites out, they are amazing! 


As for our strong little cookie, she is doing well!  So far so good with the introduction of the steroids.  The only side effect that we have seen is an increase in her appetite and as we all know, Morgan could definitely afford to put on a few pounds.  We will be heading back to St. Jude this Sunday for a quick visit on Monday and will be returning Tuesday.  Hopefully it will be uneventful!


Finally, a special THANK YOU to Sarah Sirico for keeping up the facebook page for us for so long!