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!