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/