Princess Ella's Surprises at Disney!

The whole family had an amazing, lifetime-lasting-memory-making trip to Disney World! Terri's description:

I knew when I reached out to Brian Staron to preform at our May event that he was VERY funny and talented! I also knew that he was special to us and a part our magical Disney memories. I further knew he was generous and kind for offering his services for our event and traveling all the way up to New Jersey from Florida. But what I didn't know was how extremely amazing and out of this world he is!!!

I contacted him to find out when he would be preforming during our stay so we could attend a show. We planned to attend one and never in our wildest dreams could we have imagined what he had planned for us. If we would have just seen his show that would have been amazing and we would have been content. But no... Brian had about 15-20 Disney cast members out to watch the show and greet Ella. They presented her with enough balloons to be in the movie UP, a framed photo of her and Brian at their first meeting in 2010 and princess ears for Ella and Claire. Brian introduced us to the crowd as a special family to him and gave Ella a gong to bang whenever he said FUN... I'm sure you can guess it was said a lot!!! If it would have ended there that would have been plenty and we would have walked away with such warm fuzzies and special memories. But no... After his show they all walked us down to ESPN Zone (We had an entourage!). We were sat at a table and then on the jumbo tron Brian announces that we were MVP's and that our dinner was on Mickey. We had a great dinner and then they brought out a special cake. Brian told us this wasn't the end of the surprises. Lisa (his manager) told us to be at the fire station the following day. On our way there Ella said "My BFF Brian said there would be more surprises... but it's ok if there aren't any, last night was enough". Then we go to the fire station and are whisked away to City Hall and taken into a back VIP room where we were greeted by 5 beautiful princesses!!! Claire immediately fell into Belle and would not let her go. Ella screamed in delight and sang a medley with each princess using each of their songs. She couldn't stop giggling!!! The princesses were so gracious and sweet. Claire later on the ride home said "my wish came true" and I asked her what was that and she said "Belle" I knew exactly what she meant!!! And if that was all it would have been more than enough and we would never ever be able to express our gratitude for all that he has done to make this visit extra special. Then we returned to our room and there was a photo album with the photos of the night before and trinkets fro the girls. WOW... Speechless...Priceless...Unforgettable...Thank You

Here are some fantastic pictures from the night of the surprise!

 

They will carry these memories in their hearts forever. Brian Staron is not only a talented Disney caliber entertainer http://www.brianstaron.com/ but also a generous and kind human being. Take advantage of a unique opportunity to see him live and in person, here in NJ on May 18 at Make NF Disappear...Laughing For A Cure!  (click on the title for info)!!

Ella is part of Disney Friends for Change!!!!

Our special little hero was selected to receive a grant from Disney Friends for Change YSA (Youth Service America, Youth Changing the World) to help change the world! There are a limited number of grants awarded each year, and Disney has recognized the amazingly giving spirit in this child. Details are below. If you think you'd like to attend (April 28th, in Williamstown, NJ), please send an email to hopeforella@gmail.com as the building where the event is being held is close to reaching max capacity!! If you are on Facebook, you can visit the event page https://www.facebook.com/events/341442359289036/

**If you have any press contacts, please let them know about this amazing event!**

LOVIN' YOUR NOGGIN--A DISNEY FRIENDS FOR CHANGE/YSA COMMUNITY EVENT!

Join Ella in making hats and headbands for the children at CHOP losing their hair due to chemotherapy treatments. These kids experience a lot of pain and face many challenges. Receiving thoughtful gifts like these make them feel special. A hat or headband gives them a little normalcy in an otherwise not-so-normal situation. Let's love their noggin's and show them that people care. Let's give them hope and inspiration to continue their fight!

This is a free community service event brought to you by Hope for Ella and Disney's Friends for Change. Anyone can help!!! Young and old... crafty or not-so-much. We need folks that know how to knit, paint, make headbands, etc. to lead some of the craft tables. There will be activities for all level of crafting ability.

In keeping with Ella's vision please bring craft kits or games to be donated to CHOP to make the visits there a little more bearable or you can bring items for us to use to make lunch for our homeless friends on Terrific Treatment Thursdays!!! Items like Peanut Butter, Jelly, Tuna, Mayo, shelf-stable fruits, snacks/crackers/granola bars, bottled water. The above is not a requirement to attend the event but just a way to pitch in Hope for Ella's vision.

H.O.P.E. for Ella

H.O.P.E. = Helping Out People Everywhere

Help us raise awareness of Neurofibromatosis Type 1, this genetic disorder that is causing Ella to lose her vision now in both eyes. For Ella personally, our prayers and positive thoughts are what is needed sent her way. For Ella's wishes of H.O.P.E. we can share everything we learn about Neurofibromatosis and help change the future of NF research and care; AND we can follow Ella's example of helping those around us every chance we get! There is a lot of wisdom in that little 7 year old body.



Please share HopeforElla however you can: verbally, on Facebook, Twitter, by email, regular mail...whatever form, as long as we share we really can change the world!

Chemo and MRI Updates

In this update:

MRI results, New chemo treatment, reaching 2500 "likes" on FB, and event reminders!

A tumultuous couple of weeks wrapped up with Ella's fever finally breaking and an MRI with general anesthesia (because of Ella's continued congestion, they could not perform a sedated MRI) scheduled for Friday. The MRI went well; finally Ella had a visit to CHOP that remained just for the scheduled process and no complications! While they "only" had to wait until Monday for the results (as opposed to the usual 2 weeks), still Terri was filled with worry, as any parent would be! Along with knowing the results would be received on Monday, the new chemotherapy regimen was also set to begin Monday and Terri has dubbed the new treatment day "Magical Medicine Monday". She is a wonderful Mama who strives to find any and all positives she can to present to Ella to keep our little NF hero upbeat as much as possible. Ella's Uncle John and Aunt Crystal thought of an incredible way to motivate people to "like" the FB page and help Ella try to grasp how many people are watching her page and praying/wishing for her: they said they would send Ella 2500 pennies when the page got to 2500 likes!

This new chemo treatment is made up of 2 medicines that are much faster acting which is good, but of course there is a bit of a double-edged sword because faster acting chemo means stronger and harder side effects. Terri shared a bit of her concerns:

I have to admit that I am very nervous for tomorrow's MRI results. I am always a little anxious but this time more than usual. I hope I can sleep. I am sure I will come home with great news to share but until then I will be a nervous wreck. Tomorrow's Magical Medicine Monday's treatment is gonna be particularly tough on our little Ella this is a 4 1/2 hour treatment and it is more potent since the first chemo regimen was deemed unsuccessful. Also because it is a totally different med we don't know how she will tolerate it. 

They arrived at CHOP at 9:30 in the morning and began their long day with the results from the MRI. The scans showed not only the optic nerve gliomas (brain tumors) that were known, but also neurofibromas (tumors that grow on nerve sheaths) that extend past the optic tracts, and thickening of the optic chiasm. I know with the medical wording it sounds complicated; here is a basic picture of the eyes and these areas in particular to try to help with explanation:

The Visual Pathway: From Eye to Primary Visual Cortex
from http://faculty.washington.edu/chudler/vispath.html

              

New with this MRI was views of the neck and spine. Shadowing was seen along her spine but the doctors are not yet considering them neurofibromas. However, neurofibromas are believed to be seen in her neck area on the left side near her lymph nodes. Praying and hoping this chemo quickly and effectively targets areas of concern and does what it is supposed to do--kick some tumor butt! 

Here are some of Terri's observations from the day:

We got home about 3 hours ago and then we had dinner and Ella fell right asleep. We were at CHOP for over 8 hours today!!! She slept through some of her treatment as well. This regimen already seems like it is gonna be a doozy!! She has the sweats/shakes and is very fatigued. We are gonna give it time. I am told these meds are fast acting so hopefully we will see results quickly! Good news is they think that we may see some vision return but there is no guarantee. More good news is that next treatment is less time (only 2 1/2 hours vs 3)!!! Also in the good news department is that she only needs these meds every two weeks!!! Please, please, please pray for Ella and that these meds do the job they are supposed to do and not take too much of a toll on her. We had such a good day despite some of the discoveries. It was a long day but we had fun coloring, doing crafts, signing and dancing with our IV pole and so much more!!!

And even after such a LONG day and already feeling some effects of this new chemo, our little NF superstar's mind and heart went right to other people:

 Because this was our first week having treatment on Mondays and we had a little break I didn't even think about preparing food for our homeless friends. So after the day she had the first thing she said as we were getting ready to leave is now to go take some food to those who need it. I was like OH CRAP!!! so we went down to the cafeteria and picked up some food and went on our way!!! Sure enough we ran into Morgan and passed along what we had... She said "THANK YOU ELLA" and Ella just squealed and giggled with delight!!!

After an emotionally, mentally, and physically challenging day Ella was asleep quickly (as Terri said, right after dinner) and Terri followed not far behind her, not before finding that a very, very heavy box had been delivered...full of pennies! Terri held onto it for whenever the Facebook Page  hit 2500 likes. That happened on Tuesday! Here is a link to the video of Ella with the pennies! 

Terri said that after she stopped recording Ella with the pennies and started to upload the video, Ella began to grasp what it all meant. 

 Ella was so touched she cried after I started to upload the video!!! She is in such disbelief that this many people are concerned about her and rooting for her!!! She started naming the pennies. I think I am stuck with 2500 pennies!!! AMAZING!!! THANK YOU!!!

Stay tuned as we gear up for some really excited things happening, including "Make NF Disappear..Laughing for a Cure!" on May 18th, click here for details or on Facebook https://www.facebook.com/events/467579583296341/ . Ella's school walkathon is April 26th, information is available here: Walkathon for Ella Details . Also in April, on the 28th, is the free event to help make caps, hats, and headbands for other kids going through chemotherapy sponsored by Disney's Friends for Change! Come out and help Ella Change the World! Details are available by clicking here for more information! **updated April 17th-click on the new blog post http://hopeforellanf.blogspot.com/2013/04/ella-is-part-of-disney-friends-for.html if you do not have a Facebook account. I apologize for not realizing you can't see the details of the FB page without an account.

One last note, remember to subscribe to the blog! Once you submit your email address to sign up, you can receive email notifications whenever a new post is created, meaning you'll get built in reminders of Ella's events, like the ones mentioned above and also reminders of Magical Medicine Monday so you remember to show your pink and/or send your messages of hope, love, and support for Ella.

Catch the Kindness Bug!!

Kindness is highly contagious...pass it along! 

Follow Ella's amazing journey via

www.facebook.com/HopeforElla ,Twitter @HopeforElla or tweet #HopeforElla

or of course here on the blog.

Hope for Ella Walkathon!

Ella's elementary school is honoring hers journey with their annual walkathon on April 26th! How cool is that!!! All the kids in Ella's school are gonna learn about NF, walk in support for Ella and raise money for NF research!!! AMAZING!!! I still can't get over that they would reach out to us and support the cause of Ella's choice... CHOP, NF research!!! If you would like to sponsor Ella in the walk you can mail donations to

Hope for Ella, 

PO Box 71, 

Williamstown, NJ 08094 

or make a donation through PayPal here:

(Please use the special instructions section to specify this is for the walkathon)