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.