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!