Tuesday, September 23, 2014

Mascot Bowl

Wow! What a night!! Felix Falcon invited us to the Mascot Bowl and Jazz Bear chose Lilly to be one of his VIP's. We felt like royalty. We got to sit on the sideline of the field, whereas everyone else had to sit on the bleachers behind the fence. What a fun fun night!!


Lilly was a little nervous at first to get her picture taken with the mascots because she knows how wild and crazy they can be. And as you can see, Emery didn't like it one bit. Lilly did love getting her picture with the beautiful Jazz Dancers. :)


She slowly warmed up to them and was glad she got to meet so many mascots. Willy from UVU and Lil' Jazz Bear


Leo the Lion from Real Salt Lake, 
and Freddie Falcon from the Atlanta Falcons


Swoop the Hawk from the U, and Benny the Bull from the Chicago Bulls


Miles from the Denver Broncos, Grizzbee, Big Blue, Bumble...


The Utah Jazz Dunk Team was there, the stunt cheerleaders, and Crunch from the Timberwolves wanted to be in on the action!


I can't imagine how difficult it must have been for the mascots to play football in their costumes. They can hardly see or run in those things, let alone catch a ball!



Lilly got a special football signed by all of the mascots given to her by Felix Falcon. What a treasure!

Here's some highlights on Good 4 Utah News. You'll see Felix giving Lilly the special football.





During halftime, there was a live band playing the song from "Footloose" so Lilly and Felix were dancing. He's such a good Bird! We love you Felix!!


Boomer from the Indiana Pacers came over to hang with us for a bit...


He was pretty silly...


Emery even warmed up to him a little bit and even waved goodbye to him when he left. Slowly but surely she wasn't quite so terrified.


The Mascots lost to Lehi High school. They only scored one touchdown. And guess who scored? FELIX FALCON!!! Way to go! Thanks so much for inviting us Felix. It's a night we will always remember. Lilly talked about it all the way home last night, and is still talking about it this morning. 
We made some great memories!!



Monday, September 22, 2014

Root Beer Floats for Lilly

Wow! What an amazing time we had on Saturday. Thank you to Adam Mills who put together this fundraiser for Lilly. Thank you to Bruce at Smith's who let us hold the event in his store. And thank you to Felix Falcon, Rapunzel, Elsa, Anna, and everyone else who stepped in and helped. We feel so blessed to have so much support! Lilly is still recovering from her pancreatitis. She was supposed to start chemo on Friday, but she missed counts so we will try again in a week. But, we are so grateful she's been able to have a little bit of a break. And we are so glad she felt well enough to come to this event on Saturday. Thank you! Thank you! Thank you! We couldn't have done it without the support from all of you!









*Side note: Emery is terrified of Felix Falcon. This morning while uploading these pictures she keeps saying "Bird... Blue... Blue Bird... Nice?? Nice Bird..." Maybe she'll warm up to him one day!!

Thursday, September 11, 2014

Update...

We're still here in the hospital. Both Lilly and I are going a little stir crazy. Lilly's pancreatitis definitely got worse before it got better. It's a slow process. In the first couple of days she gained 8 lbs from retaining so much fluid. She was in horrible pain. Lilly had to be on oxygen. She had so much pressure on her lungs from the swollen pancreas, that she couldn't take a big enough breath. They put her on a PCA pump of morphine. It's a continuous drip of morohine and she also had the option of pushing a button and giving herself and extra boost if she needed it. She also got TPN and lipids once a day to replace the food that she was not eating. The first couple of days she just laid in bed and slept the day away to try and not think of the pain. It was awful to see her like that. Pancreatitis is something that just has to heal on its own. There's no magic medicine that can be given to fix it - and it's no fun! Last night she was feeling great! She was painting nurses nails, teasing, laughing... It was fabulous. But, through the night she did not sleep well at all. She has a blister that's developed on her lip and it's painful and it drove her crazy all night. This morning, the doctor checked in her mouth and her mouth is covered in sores! :( Mouth sores can be a complication of certain chemos, but she's never had mouth sores before. Ever. So, it's weird that she's started with them now. They're testing her for a virus, but have already started her on the anti-viral medication to get it in her system. And, on top of all that, her tummy started hurting really bad again this morning! I kind of feel like we're taking three steps back instead of progressing to get better. They are testing her for C-Diff. It's a bacteria that some cancer kiddos get that makes their tummies crampy and they have severe diarrhea. (Sorry TMI) We're still waiting to hear results back from that test too. But, the good news is she's off the morphine. She's taking oxycodone for the pain and it seems to be helping. Plus, she can go home with oxy, but not morphine. She's also off of all her fluids. She's drinking a lot on her own, and she's eating a little bit, which is an improvement from days past. Our goal is still to go home tomorrow, but we'll have to see how our day goes. 


We shaved Lilly's head again. After her last round of chemo on Friday, it started falling out like crazy. It was itching and driving her nuts... But, she's excited that this will be the last time she loses her hair. (We hope)


Lilly's pediatrician stopped by last night and we had a nice visit. Lilly asked him if she could paint his nails!?! Dr. Bosworth has NEVER had his nails painted before - so it was fun for Lilly to get to be the first one to do it!!! It made Lilly's night! ... and his! LOL

Tuesday, September 9, 2014

Epic Comic Con


We weren't planning on attending Comic Con event. That was until Millie's Princess Foundation asked us to attend the opening press conference on Thursday morning.  We were very hesitant since Lilly's numbers were supposed to drop with all the chemo she's been getting.  But, after much consideration we decided to take all the precautions we could and go.  Boy were we in for a surprise!  We didn't know quite what to expect. So, we showed up at 10:30 to meet up with Amanda Flamm from MPF, Anything Can Be, Braelyn's family and other cancer kiddos.  We were escorted on stage alongside many cosplay attendees to be a part of the opening of Salt Lake Comic Con and welcoming many celebrities to the event. 





It was pretty amazing to be a part of, as we watched all the celebrities come out on stage.  We saw Lou Ferrigno (the Hulk), Jason David Frank (Green Power Ranger), Rob Prior (Artist, director), and many others. After they were introduced they came to stand next to us. Eugene Clark (Actor/singer) started talking to Lilly, so she in turn wanted to give him one of her pass along cards.  She noticed that actor Manu Bennett was admiring the card she gave Eugene, so she decided to give him one as well.  Manu was so impressed by Lilly he asked if he could hold her, and the next thing I saw was him taking her out on stage.  He talked about her courage in fighting cancer and that he was going to give the first $1,000 he earned at Comic Con to her and challenged all the other celebrities to donate to local charities like Millie's Princess Foundation.  


Wow!... Wow! What an epic moment.  Lilly didn't quit realize just what took place, but she sure enjoyed her moment with Manu on stage. 

Manu was so kind to Lilly and concerned about her treatment.  

After the press conference we were able to walk around the event and meet up with a few people before the mad house came in.  We were able to enjoy many of the vendor booths without the worry of crowds.  We did make sure to sanitize constantly and we were able to leave before the madness began. 


Lilly received a signed copy from Manu Bennet. 


Rob Prior told all the cancer kids to stop by his booth
and pick out one of his art works.
(I think Megan will be a little jealous)
  
I asked Rob Prior if I could have one as well.
Can you find the Chicken head?







Eugene Clark


Smaug

Gollum

Amanda Flamm at the Millie's Princess Foundation Booth


Mountain Trolls

Watch out! You may get stepped on.

I later returned on Saturday to meet up with Manu to talk about Lilly and how she was admitted for pancreatitis and was in a terrible amount of pain.  He was genuinely concerned for her well being.  He truly was a Smawesome (super mega awesome) person to meet.  I am very grateful there are people like Manu, all those with Millie's Princess Foundation, and so many others that have shown kindness and generosity to us and Lilly. 


Manu Bennett is SMAWSOME!


Thanks Salt Lake Comic Con for making this a memorable moment in time.