15 July 2014

Charmed by Charity Event with Alex and Ani!!!

A few weeks ago the Children's Tumor Foundation Ladies and I were approached to co-host a Charmed by Charity Event with Alex and Ani. I, for one am SO EXCITED!!! If you have not already checked out Alex and Ani you must... right now! They have some of the cutest bangles in the planet! I have started building my collection and I have become a little obsessed .. So when they offered us the chance to help out a cause close to our hearts and do some shopping I, of course jumped at the chance to say YES!!!

There are so many different bangles you can choose from- There is literally something for everyone!!! And, their prices are pretty reasonable too. You can literally pick one up for yourself and one as a gift and still have a little extra money for maybe one more bangle! :) I, personally love the LadyBug Charm and what it symbolizes for our family but do some on-line browsing and I am sure you will find a few that fit what you're looking for... There are charms of inspiration, charms of happiness, and charms that will just add a smile to your face. You will love everything you see! So, save the date, grab a few girlfriends, and join us for a night of food, fun, awareness, and shopping Wednesday, August 6th from 6-9pm at Alex and Ani- City Creek Center! 

Hope  to see you all there! 

09 July 2014

Chemotherapy- Course 3

Chemotherapy Course 3 done, only 9 more to go!!!

This session was a pretty interesting course. Little Miss LadyBug battled a flu bug most of the weekend and Monday morning she had passed it on to daddy. After about 20 minutes it became pretty apparent daddy was not going to make it up to the hospital with us (Never a dull moment in our house!) So Rylie and I quickly got ready and made sure daddy was settled into bed and then we headed off to get this months treatment. 

Rylie of course did wonderful again. Many people have told us little kids are resilient when it comes to these sorts of things and each time we go up for chemo Rylie seems to amaze us just a little bit more. As we have mentioned before, She is just a little rock star when it comes to these doctors appointments. She is 2 so obviously she puts up a little fight but for the most part she just goes with the flow and does what she is asked to do. Primary Children's has a wonderful department of individuals (Child Life Specialists) that work to make the kiddos feel more comfortable and at ease during these scary appointments and procedures, and man do they do a great job. It's nice to have people there that help you explain things you have no idea how to explain. Luckily, oncology has there own child life specialist that is there every day of the week so Rylie has gotten to know Miss Rachelle pretty well, which helps comfort her a little bit more. I think the familiar faces are becoming a comfort to all of us.  PLus, It did not take Rylie long too realize Rachelle brings toys, books, and lots of fun other things to play with. Rachelle is the only one that lets Rylie paint on everything and anything in sight all in the name of familiarizing her with different medical devices. It's amazing... before this nightmare started Rylie didn't have a clue as to what a blood pressure cuff was, what a stethoscope looked like, hell... she barely remembered what a shot was. Now, after some playing (teaching) with Rachelle she is almost a pro at all things medically related. I know it shouldn't amaze me, she is a pretty brilliant child but the fact that she knows what to do with a stethoscope just floors me. What 2 year old knows how to do that?!? She literally walks into the out-patient oncology office and goes through the motions like it's nothing... like it's completely normal. It is just amazing to watch. Each time she seems to learn a little more... we just might have a future oncologist on our hands! :) 

After a little bit more teaching, we move into the portion of the appointment we all hate...Rylie gets accessed. This has become a pretty tough few minutes after our recent ER visit. Things hurt pretty badly in the ER and nothing went according to plan so she gets a little anxious now. There is not a lot of fighting but there are lots of tears and pleas for help and as her parent it just completely breaks our hearts. This time was especially hard. As soon as they pushed the cart of sterile supplies in the room she knew exactly what was about to happen and she immediately turned around, jumped into my lap and started crying telling me she wanted to call daddy. It literally ripped my heart out. she might only be 2 but she has quickly figured out her daddy is there to protect her and not having them there really scared her. So, we compromised and as soon as we got all hooked up we called daddy and got to talk to him for a little bit before. 

My lame attempt to cheer her up when she was missing her daddy... banana bread and juice. 

While we wait to see our attending oncologist Rylie is started on an hour of IV fluids. The chemotherapy Rylie receives can pose some possible risks to the liver and kidneys so it is important she stay hydrated throughout this process. Getting her fluids is usually the calm before the storm, we are able to cuddle up and enjoy a movie before we get down to the nasty part of the day. Then, we are off to the treatment room to start the chemotherapy. Believe it or not Rylie actually really looks forward to moving to the back... there are LOTS of toys and goodies back there... and our favorite Nurse Miss Becky. I don't know who loves her more, Rylie or us. These nurses have become like family to us, I don't know what else to call them. They have literally walked us through some of the worst and scariest moments in our lives. Seeing there faces each month brings  a sense of calm to this entire process. In just 3 short months we have become so comfortable with them, it's hard to imagine trusting anyone else with our girl.

Our Favorite Nurse Miss Becky. Always willing to play and be silly :) 

So, we get some medicine, play, get some more fluids, de-access, pick up our perceptions, and then head for home!!!  

Two of her favorite things... a sucker and a quick nap 

This round was a little tougher on our sweet ladybug. She has been battling some nausea and just over all feeling pretty crummy. Hopefully, this next week will go quickly and we can get her feeling better in time for the 24th of July celebrations! :) 

Thank you all again for all of your love and support... with your help we know we will make it through this year! 


03 July 2014

Ophthalmology Visit

Ladybug had her monthly visit with the ophthalmologist yesterday and, we’re going to call this visit a win(we will take a small victory any day)

We spoke with Dr. Hoffman and there has been no change in the tumor in either the positive or negative direction from what we can see. Keeping in mind this is not an in depth view of Rylie's optic never. for obvious reasons an eye doctor can only see so much, to get a better look we will need another MRI. We will have and MRI and another VEP test next month and that will really give us the answers we need. If all goes as we are hoping the tumor will have stopped growing, which will mean this treatment plan is working!!! We are crossing our fingers and praying the next 30 days go by quickly so we can hopefully receive some more good news! 

Rylie, of course was amazing yesterday. We get comments all the time from the doctors and nurses telling us how smart and intuitive she is. To see her at these appointments are some of the proudest and saddest moments we have ever experienced as parents. As soon as we make out way up to the university Rylie knows where we are going. We talk about the doctors and tell her what to expect before hand so hopefully nothing surprises her too much and catches her off guard. It seems the more she knows the more she feels at ease. She's a bit of a control freak, much like her momma. To watch your baby sit there and follow instructions makes her look so grown up. You feel proud knowing the things we are trying to teach her are sinking in but it also breaks your heart that at such a young age she has to endure so much. But, there she sits. Smiling and doing exactly what she is told. We get minimal fights from her. I think she's figured out the less fighting she does the quicker we go home. :) She truly is our little hero! 

  {This is the face I get when I tell her to stop playing with all the medical equipment}

Well folks, we are off to join our friends and family for some summer fun before chemo on Monday. We hope you all have a safe and happy 4th of July! 

01 July 2014

Drum Roll Please....

We are SO excited to debut the 2014 LadyBug Gang Team NF Walk Tee Shirts!!!

If you are interest in ordering a shirt please email Brandie at ladybuggang.nf@gmail.com by Friday, July 25th with your sizing information. Money for the shirts will be due at the time of your order. Shirts will be ready by the first part of August just in time for the NF Walk on Saturday, August 23rd!

Pricing Information:
S-XL. $17.00
2XL. $18.00
3XL. $20.00

2T-4T. $14.50
S-XL. $15.00

Thank you to Sullivan Botello Events for designing the perfect shirt for our little ladybug! 

1st Annual LadyBug Gang Tea Party

This past weekend the LadyBug Gang hosted our 1st Annual Tea Party- it was so much fun and the event turned out to be a great success!

The concept for the tea party began a few months ago. National Tea for NF day is always held on May 5th. The original plan was to host the tea party in May but after receiving word that we had to start Rylie's treatment sooner than anticipated we decided to take some time off. After adjusting to our new normal we decided to kick the summer off with a tea party! 

In August the Children’s Tumor Foundation will hold its 4th Annual NF Walk. To draw up some excitement and a few participants for the walk we decided to hold a Tea Party. We had a yummy popcorn bar, an ice tea bar, and some other delicious treats. The best part of the event… we were able to get over 30 people signed up for the walk! We are so excited to have our family and friends join us for such an amazing cause! If you have not yet registered and you want to join Team LadyBug Gang head on over to the Children's Tumor Foundation website and register to join our team! Your registration fee goes directly towards helping us find a cure for NF! 

2014 LadyBug Gang Tea Party 

Fresh Flowers always make any party brighter!

Popcorn deliciousness! 

More Yummy sweet treats! 

Ice Tea for everyone! 

Tears :( 
Someone was still ready to PAARRRTTYYY! 

THANK YOU to all of the LadyBug Gang Supporters! We look forward to walking with all of you in August!