Thursday, March 28, 2013

Your Wishes So Far, finalized finally

Finally...I think we have success in having the video. Cross your fingers!!

Changes...Feel Better Ella!

From Terri's posts on the FB page Hope for Ella on Facebook:
          
Monday, March 25, 2013
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!!!

Later on Monday, some emotional thoughts as Terri was having Ella concentrate on the memory of colors
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.

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." 








The day ended up being much longer for Terri and Ella because of the fever...they wouldn't let them go until the fever was down; what would have been about a 10am departure turned into a 3 pm departure. Ella was OUT and sleeping after the testing, while Terri met with their new medical team and discussed the new plans of action.

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.





Everything is on hold right now; all medications were stopped by the new Dr. (including chemo) so she can get a "baseline" reading for Ella. They were to meet again on Wednesday to give Ella another MRI and plan the new route for chemo treatments, unfortunately with Ella being sick they can't do the MRI under sedation and would need her to have anesthesia. There were no appointments available for that type of MRI for another week, and without the MRI they can't plan the new course of chemotherapy. Talk about catch 22s!! Poor Ella now has a very bad cough and is sneezing like crazy. This week we are asking for Get Well wishes for our little hero!

Saturday, March 23, 2013

Setbacks and Moving Forward!

After Ella's treatment Thursday, we got not that greatest news from Terri:
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!

You might be thinking, "THIS SUCKS!" We agree, wholeheartedly. Some of you might be thinking, "bad things keep happening for Ella, there's no answers, what's the  point?" That is when we have to say, in the words of F.U.N. "If you're lost and alone, and you're sinking like a stone, carry on! May your past be the sound of your feet upon the ground..carry on carry on!" The news of this setback has to propel us forward, we have to move into hyper speed in our mission to raise awareness of Neurofibromatosis!! Neurofibromatosis, Inc. Northeast recently reported that $15 million was appropriated to the Army's NF Research Program by Congress in spite of many cuts--how? By ordinary people like you and me calling, emailing, and sending letters to protest defunding the research for fiscal year 2013.

We won't give up, HopeforElla will fight on and carry the topic of Neurofibromatosis to every person we possibly can. Keep spreading the word, keep reading, keep learning all you can about NF. Share your links, your words, your experiences with us. Together we will change the future and make sure Ella, and all people with NF, know they are NEVER alone.



Wednesday, March 20, 2013

Tomorrow is Terrific Treatment Thursday & Ella's Birthday!!

Remember tomorrow is Terrific Treatment Thursday, time to flaunt your pink power for Ella! Upload your pictures and share them here on the blog, email them to hopeforella@gmail.com, or share on Facebook and Twitter. Ella gets so excited to see the pictures and all the creative ways people have rocked the Pink Power! This week we get a double dose of supporting Ella, because after tomorrow's TTT comes Friday which is......

Glitter Text Generator


You can post your birthday wishes the same way as listed above, and even include them in your Terrific Treatment Thursday comments DesiSmileys.com .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!!

Tuesday, March 19, 2013

"What is Neurofibromatosis?", a video

**Here is an updated form of the video, in its original form rather than the YouTube version.** A brief video explaining the very basics of this extremely complicated, volatile, and variable disorder, along with how you can help share and raise awareness! The song playing is "Bring on the Rain" by JoDee Messina w/Tim McGraw, available on iTunes. www.facebook.com/HopeforElla Twitter @HopeforElla or use #HopeforElla

Thursday, March 14, 2013

Terrific Treatment Thursday Hero Area

You can comment here with any messages of support for Ella has she has Cycle 2, Treatment 2 of chemotherapy today. Cheery messages, jokes, riddles; as long as they are positive, post them! Pictures of you rocking your Pink Power can be sent to hopeforella@gmail.com , and we'll share all with Ella. As always, thank you!!

Tuesday, March 12, 2013

Ella says THANK YOU!!!

This child is so special, takes hold of everyone's heart and sends it back filled with love. I know it's hard to believe but these are only-Ella, spur-of-the-moment words. Enjoy!

Saturday, March 9, 2013

Share Hope for Ella!!

The ultimate goal of Hope for Ella is to grow research of Neurofibromatosis. That goal can only be accomplished by raising awareness, and we can only do that with you!

So many people have never heard of Neurofibromatosis (NF1 specifically, is the form affecting Ella), yet 1 in 3,000 people have NF1! This genetic disorder affects more people than several other genetic disorders combined. I'm not going to name them because I don't want this to seem to be minimizing any other person's pain and suffering.

There is neither cure nor specific treatment for NF; doctors can only treat the symptoms as they appear. While recently genetic testing has become available, the genetic testing is not 100% reliable and a negative result does not rule NF out. The only reliable diagnostic tools available to the medical community are:


  • observance of symptoms of neurofibromatosis, such as: cafe au lait spots (5 or more) or lisch nodules on the iris. 
  • MRI, which is complicated enough if performed on adults, even more complicated for children.


NF never goes away. The disorder may lay dormant in one person for his or her entire lifetime, in another symptoms may appear later in life, for others symptoms may come and go their entire life.The possibilities of how or when symptoms may appear are infinite and impossible to predict.

Even more disturbing is the variety of forms in which NF1 can display itself. Tumors can grow internally or externally, ANYWHERE outside the body and ANYWHERE inside the body. Literally anywhere you can think of: minor organs, major organs, muscle, tissue, joints, spine, bone, skin, scalp, leg, face..the list goes on and on. Tumors may not grow, a person (even children) may develop extreme hypertension, cardiac problems, scoliosis, vision loss or blindness, learning and behavior disabilities (thought to be formed by spongiforms on the brain, that may or may not resolve on their own), digestive difficulties, and possibly malignancies. Some people may develop some of these, or all of these, or all of the above!

Chemotherapy seems to be the only treatment that works for the tumors. Chemotherapy has its own horrid immediate side effects, and presents its own list of unknowns for the patients future health. Medications are being researched; however at this time, none have proven effective on any symptoms.

Our only hope to change the unknowns to SOLVED is spreading awareness to bring attention to neurofibromatosis and get more research to change the future for Ella, and the hundreds of thousands like her.

PLEASE SHARE our blog  by emailing your friends the link Hope for Ella Blog. Hope for Ella is on Facebook at www.facebook.com/HopeforElla, on twitter www.twitter.com/hopeforella or you can tweet #HopeforElla. You can purchase t-shirts, tickets to Ella's big event (info http://hopeforellanf.blogspot.com/2013/02/ellas-first-big-event-may-18th-2013.html ), or make a general donation to Hope for Ella; all payment links are on the right side of the page. However you can participate in helping Ella change the world, please do! Thank you!!

A Thank You for all the support!

This was a rough week, to put it mildly, for Ella and her family! The outpouring of supportive words, prayers, and positive vibes was overwhelming; and the pictures sent in are always appreciated. Thank you for helping to lighten the load ever so much!!



Together, we will change the future with Ella.

Thursday, March 7, 2013

Terrific Treatment Thursday Cheerleaders!!

So far....

video

Thank you and keep them coming! (music and more to come...)

Ella Updates

First, an apology for not posting since March 2nd!

As Ella was gearing up to start cycle 2 of chemotherapy, she passed out in school on Tuesday (March 5th). Terri brought her to the ER, where they ran test after test and, after not being able to figure it out, 7 hours later they decided she should be transferred to Children's Hospital. There, more tests were run including another MRI (it was actually an MRA, which inspects the blood vessels), and still nothing was found. The conclusion was that all of her symptoms (numbness in hands, balance issues, dizziness, nausea, breathing problems, blurred vision, and many others) could be attributed to chemotherapy effects--even though she hasn't had treatments the past 2 weeks. Ella received her chemo treatment last night since they were already there, and hopefully Terri and Ella will be released to go home sometime today. 

Sad Ella, waiting stinks!

YAY food finally! Smiling even with TWO IV's.


Breakfast--she's ready to get out of there, though the food is good ;)


We are still treating today as Terrific Treatment Thursday! There are already so many amazing and wonderful messages for Ella on the Facebook Page , and wishes are starting to come in on @HopeforElla on Twitter. Please keep them coming there, or even post your PINK POWER pictures or well-wishes here in the comments section! 

Thank you so much for all the support!!


Saturday, March 2, 2013

In honor of Dr. Seuss' Birthday....




Creativity Challenge!
Today is Dr. Seuss'
Wonderful birthday.
Leave comments in only
Dr. Seuss style today!! 

We'll judge the best rhyme, 
Using all of our eyes,
We'll choose one at random
And award a small prize!

Leave a comment below
With the best you can show!