Mommy Terri's Words

Every Tuesday, we'll have at least one blog post that is in Terri's words. Here is today's:

In May of 2011 our world was forever changed when our seemingly perfect five year old daughter, Ella, was diagnosed with Neurofibromatosis (NF). At first we could hardly pronounce it let alone understand what that one word would mean to our lives. Researching NF frightened us to our core. Words like vision loss, scoliosis, disfigurement, hearing loss, development delays, behavioral problems, tumors and cancer were all associated with that one diagnosis. And to top it off there is no treatment! No way for us to stop NF from taking its course with our precious baby. What challenges would it present for Ella? Would she have pain? What quality of life could we expect? These and a thousand other questions surround us daily.  We live each day to the fullest but always have in the back of our minds… what’s next?

It started with the diagnosis, then a myriad of appointments and tests, then learning about the growths in her brain, followed by a diagnosis of ADHD, vision loss and more. After about a year of close monitoring through MRI’s we received the news that no parent wants to hear… We have to start chemotherapy. The tumors were growing and we needed to take action. Through all the headaches, needle sticks, sedation, tests and challenges, Ella has remained positive. She wakes up everyday ready to take on the world. Ella helps the homeless after every Terrific Treatment Thursday. She plans to hold a community involvement event to make headbands and hats for those losing their hair. She wants to raise money for research to cure Neurofibromatosis. She wants to, in her own words, “change the world”. Ella is brave, strong and a true inspiration. She is a constant reminder of the meaning of the words generosity and hope. It is for that reason that we are faced with a new challenge making her foundation a success. In addition to all that Ella wants to do… this also makes us want to reach out to other families challenged by NF and create a place of community, awareness and information so that no other parent feels alone when they hear “We’re sorry… there’s nothing you can do”. 

The Havoc of NF, Part II

In the previous post, you saw some possibilities of what neurofibromatosis can do to a body. Here is Ella, our sweet Ella-Bella, with some of those possibilities (and some that are already realities) listed.

 Is it upsetting? YES. I felt sad making this, even started to get emotional and walked away from the computer once it was finished, deciding to do the blog post tomorrow. But you know what? Terri, Chris, Claire, and Ella don't get the luxury to walk away from NF ever. NEVER. Unless, and hopefully until, a cure is found. That is why Hope for Ella exists: to do everything within our power to light fires under the powers that be to fuel research into this disorder. No parent should have to sit and wait for what's next, and then wait for the medical profession to decide what or if treatment is possible; and remember, treatment is only for the effects of neurofibromatosis, there is neither treatment nor cure for neurofibromatosis. Stay tuned, learn, share with everyone you know! Awareness is the key to changing Ella's future.

Have you heard? Honoree Ella, Flowers, and PayPal!

We have got some exciting projects in the works right now!!! One is with a great foundation that is shaving heads to raise funds for research!!! Ella will be an honoree at the event in Lawrenceville http://www.stbaldricks.org/ Thanks Jacob!!!

Next, we are collaborating with Denise, President of Temple's Pi Alpha Xi to pick a plant/flower to sell at their flower show on May 4th!!! Ella will choose her favorite flowers, Pi Alpha Xi will plant PLENTY of them and they will be ready for purchasing at the event at Ella's very own flower booth.

If you haven't noticed, look to the right ====> and see our new PayPal buttons! Yay!! If you have any questions about T-Shirts, comment here on the blog or send an email to hopeforella@gmail.com 


Don't forget our big event on May 18th. We will be announcing details soon to purchase tickets from right here on the blog! Keep an eye out for more details on all these events. Thanks!!!

The Havoc of Neurofibromatosis

Neurofibromatosis has seemingly limitless effects neurofibromatosis on the body. As vast as the possible effects, shown on the diagram, may seem they are only some of what may happen. This disorder moves in stealth mode and can appear ANYWHERE in the body, at any time, in many forms. More research is not only needed, it is NECESSARY. Doctors can only treat the symptoms and effects of neurofibromatosis, they can not treat the disorder itself. Hope for Ella will do everything we can to push research towards specific treatment and, hopefully, a cure. 

Remember, you can also get more information on Facebook by clicking ---> HopeforElla

and please like the page! You can join the blog via the link on the right side of the page, sign up for blog updates by email (also on the right side of the page), and/or send an email to hopeforella@gmail.com for information on t-shirt purchases or donations.

COMPLAINT DAY FRIDAYS!

Let's have an official complaint day! As parents of kids going through such tough times, we tend to keep up appearances 24/7 and never let anyone see the non-superhero in us all. Ella's Mom Terri had this idea and it's a great why-not-start-now kind of week.

Here's an opportunity to just complain it out! A day to be human, to say how we really feel about what our kids (grandkids, nieces/nephews, siblings, etc) are going through, whether neurofibromatosis, autism, chronic diseases, adhd, cancer, you name it and complain it! 

Share with your blog and blog rolls....come here tomorrow (February 22) and comment to air out your dirty laundry list of "this is why I HATE..." or "what worries me most" or whatever you'd like (of course with some discretion to keep us from getting kicked off the internet lol) without guilt. At the end of the day, we'll have a ceremonial post that releases those complaints and hopefully everyone will feel a little lighter to enter into the weekend and then a new week.

--Aunt Linda

Terri: Thank you Neurofibromatosis...

"Thank you so much for your well wishes today!!! These days allow for me to have time for reflection and moments of clarity  I believe that in life you get what you need. That doesn't always mean good stuff or exactly what you want but always what you need. I am beginning to realize that I isolated myself for so long and poured myself into my job... that in a job of many I was very lonely. I didn't realize it until Ella's start of treatment and I joined her fight by reaching out to others. After starting to rebuild old connections and make new ones I find that this is just what I needed.. Not to mention putting more focus on my family. It's like a snow day, when it's not what you really wanted but the time you get to relax and enjoy family is so needed that it becomes such a joy. I would never wish for families to have to go through tumors and chemo and all that comes with it, however, NF has made me put life in perspective and start to focus on those most precious to me. Thank you NF!!! and thank you all again for your support and love."--Terri

(from HopeforElla Facebook Page )

MRI Day for Ella notes from Terri

"We will be heading to yet another MRI bright and early. Even though we've done this many times before, this one is causing me the most worry. Not only do I have to help her get thru the IV placement... then watch her be put under sedation... then anxiously wait for her to come out of the MRI/sedation without incident but then I have to "patiently" wait for the results to see if the past 10 weeks of chemo has done anything for those tumors in her brain. Keep your fingers crossed. Here's to hoping we have a great MRI day tomorrow and hoping you all have a fantastic day too!"

"OK for some fun... On our long ride to the MRI's is a great time to chat. So today we discussed...
Ella- Is today giggle juice? (her word for the liquid that makes her relax before injections) 
Me- yep!
Ella- YYYIIIIIPPPPPEEEEEEEEEE!

Me- What do you want to do?
Ella-Help people, publish my book, be famous, help research NF, sell my paintings, be a chef
Me-What does famous mean?
Ella-being a superstar, going to all towns, travel to all cities, following your dreams, having a nice house, following your heart, spa days, hotsy totsy clothes
Me-What makes you happy?
Ella-Drawing pictures, giving stuff to people, being kind, Disney, rainbows, helping people, my sister, singing, writting books, Disney music, Taylor Swift, Call me maybe, performing for people, my family-aunts, uncles, cousins, mommoms... you know my family, changing the world.
Sometimes I just can't stand how much I love this kid!!! Hope you are having a great day!!! Ella wanted me to tell you all hi before she went to sleep... so hi from Ella."

"We are home now and Ella is watching Hotel Transylvania. She did FANTASTIC!!! one stick... right to sleep. Woke up in a great, bubbly and talkative mood. What more could you ask for? THE RESULTS... NOW!!! hahaha Thanks again for being there for us today!!"