HOW AWESOME!!!! These ladies are angels!!! Linda collected money from her co-workers and presented Ella with an IPad with all the accessories!!! and Jody gave Ella many little stuffed dogs!!! She LOVES them!!! Thank you to all that pitched in to make Ella's day, week, month, etc!!! We are forever grateful!!!
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| Ella donating $10,000 to CHOP NF research in June! |
HOLY COW!!!! I just screamed out loud!!! Thank goodness Ella is at school. I want it to be a surprise!!!only 69 more to go!!! AMAZING!!!! What wonderful supporters Ella has!!! With you all in our corner how could we lose? YIPEE! Now i will have a smile on my face all day!!! Can't wait to see where we are this afternoon!!! Have an AWESOME DAY!!!
I cannot believe it!!!!!!!!!!!!!!! I thought for sure when I got on here this evening that we might be almost at 3000 but WOW!!!! we are 100 over!!!! How stinking amazing!!! You all ROCK!!!! She is at dance right now and I can't wait to surprise her with the news!!!! Keep an eye out... this should be good!!! THANK YOU!!!!
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| The little details on the crown are fantastic-notice the "E" at the top with butterflies as jewels :) |
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| Sarah-Grace & Emily are show their HopeforElla Power! |
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| Ella and Claire are cutie-pies posing in their shirts! |
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!!!Here are some fantastic pictures from the night of the surprise!
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
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.
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:
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| The Visual Pathway: From Eye to Primary Visual Cortex from http://faculty.washington.edu/chudler/vispath.html |
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!!!
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!!!
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!!!
Thank you everyone for all of the birthday wishes!!! Ella had a wonderful birthday weekend with friends, family and fun!!! Almost felt like we were "Normal" again!!! Monday morning reminded us that we are not. While getting ready for school, Ella complained that she felt like she was going to pass out and throw up. She said her heart was beating really fast and that her hands and feet felt tingly. I told her to lie down for a bit and we will see how she is in a few minutes. I checked her temp and that was fine. I asked how she felt and she said the same and that her head and throat hurt too. I called over to CHOP and they told us to come in. Although I don't want to be running to CHOP everyday I was happy to finally feel that our team is on the same page as us. Not to say that our past Doc didn't care for Ella well... just didn't always feel we were doing all we could. Now I feel 100% that we are in the right hands. Tonight is gonna be crazy. I have to keep Ella up til midnight and then wake her at 3am. I have to keep her up to have a sleep deprived EEG at 7am. Then we have to have an MRI and chemo this week too. So this is gonna be a challenging week. I am headed to bed now so I can handle the next 24 hours. Any ideas to keep Ella up that's quiet so not to wake our 2 year old? Thank you so much!!!
On our way to CHOP this morning I asked Ella to close her eyes and asked her to tell me what colors feel like. She had such good answers. She told me white was like fur (polar bear) and clouds. Pink was like a soft blanket and cotton candy. Green was like grass and so on. I want to challenge her to think like this just in the event she loses all sight. I may be wrong and over dramatic. But she has lost so much so fast. I want her to remember what things look like just in case.
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| Here is Ella just before the Sleep Deprived EEG |
Ella had a fever while we were at CHOP for her EEG so they wanted to see her and gave her a tylenol. She started to put up a fight but then saw a little boy watching her and switched to showing him how to be brave and how to take pills like a big girl/boy! It was so cute. She said "This is how you take medicine when you are a big boy. You can be brave too."
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| After the EEG |
When we were on our way home I wasn't prepared to see Morgan (our homeless friend) so we had nothing for her. Ella was playing with her DS and I thought she wasn't paying attention. After we passed Morgan, Ella said "was that Morgan?" I said "yes, we didn't bring anything with us today so we can't stop." Ella said " Awww we should bring food every time we go to CHOP not just Thursdays. Mommy, we should adopt Morgan." Just melted my heart.
So today was a rough day just as expected.....Today Ella's vision was tested because of the reports from her teachers that she was not able to see the board and all of the other symptoms she has been having lately. (Blurry vision, walking into walls, passing out, dizziness, numbness in limbs, headaches and more) Well the doc found that she is now basically blind in her left eye and this is VERY new and he can't say what could be causing this since her MRI showed positive changes with the tumors. That was a difficult test to watch. They want to test her again tomorrow just to be sure the test was accurate. Then we talked to her Doc and requested to change Doctors and that was an emotional roller coaster. Finally after she began her second chemo drug she began having an allergic reaction that caused trouble breathing, coughing, hives and as she shared afterwards... "it felt like my throat was closing". They immediately stopped the drip and gave her IV benadryl. She started to recover quickly. We just now got home....We hoped for a better result when they went back on Friday, unfortunately it was confirmed her vision in her left eye is gone. Here are Terri's words from Friday:
I showed Ella all of your posts after we came home from a very upsetting Doctors appointment confirming the fact that she has lost vision in her left eye and she was so happy to see all of your birthday wishes. She was so touched and said "I can't believe all those people are thinking of me! I hope they all have happy birthdays too!" Then she was smiling and giggling at some of the posts/photos. Thank you to everyone who has sent her messages, cards, encouragement, well wishes, pics, etc. You are keeping her spirits up and that is so important. Thank you also to all of you who donated today through texting. We greatly appreciate it!! Together we will get money into the skilled hands that can find a cure for this baffling disorder!! your kindness means so much to our family!
.In honor of Ella's birthday, Wish Upon A Hero has granted Hope for Ella a Text to Donate day!! Friday only, you can text the word WISH to 80077 to donate $5 directly to HopeforElla!!
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| Sad Ella, waiting stinks! |
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| YAY food finally! Smiling even with TWO IV's. |
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| Breakfast--she's ready to get out of there, though the food is good ;) |
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| This is the "landing page" after you click to purchase tickets. Here, you will enter how many tickets you want to buy (quantity), then choose either "check out" or "check out with PayPal". NOTE: you do NOT need to have a paypal account. When you get to the next page, of which I did not upload the screenshot, sorry, you will see "don't have a paypal account" link or button you can choose that one. |
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| Here is the "pay now" page. See just under the blacked out shipping address, it says "add special instruction to the seller"? You will click the word "Add", that is where you would type to tell us who you'd like to be seated with, or any other instructions/messages you want to send. Hope this helps!! ♥ |
