MRI #3

MRI #3 last week and it was a big one! 

We anxiously awaited this appointment for weeks! This was the first scan Rylie has had since starting chemo, and to be blunt this was the scan that was going to tell us if chemo is working. We kept busy in the days leading up to the scan but as 7am on Monday morning approached there was no denying everyone's nervousness! All of us were a little on edge. No one slept, no one ate (Rylie has to fast before the MRI's and it just doesn't seem right to eat in front of her), and stress levels were at an all time high! Adding to our stress and anxiety was the ongoing construction at the hospital. Primary Children's is in the middle of a massive new re-build and while it's looking amazing there is still a lot left to to complete... And it just so happens their new focus was the imagining department. The imagining department was completely torn up. Because of the lack of space we were sharing rooms and much to Rylie's disappointment all the Little Tykes car were moved... She was NOT a happy camper. Those little cars and bikes are the highlights of her day and she was not happy they were taken away. Try explaining to a 2 Year Old that the cars had to go to make room for important medical supplies... Yeah, she didn't care! 😁 Luckily for us in the mornings there is not too much of a delay so Rylie was sedated and in the MRI machine by 9am! 

    sending these tumors some Tumer Hater love! 

With the ongoing construction we also got to experience another first... Rylie has her MRI in a large trailer this time! It amazes me the medical technology that is out there! Seriously, as you walk outside an approach what looks like a "normal" semi truck trailer you get a little nervous but once you enter the trailer it's literally like being in a hospital. It's insane! The only downside... Because of the obvious space issues only one parent is allowed in the trailer. We get to hold and snuggle Rylie until she is sedated but this time only one if us could go out to the trailer. We try to keep her involved as much as possible and asked her who she wanted to go with, of course that decision quickly changed when we got outside and she realized this is not how things usually go down. Longest 15 minutes of my life. It never gets easier hearing her cry and begging us to go home...

         all strapped in and ready for her 3rd MRI

After making sure Rylie is all settled in daddy and I usually go grab a coffee and settle in for a LONG 1-2 hour wait. I promise, it NEVER gets easier waiting for someone to bring you your baby and tell you she did awesome! She always does and we know she is in excellent hands but the wait never seems to get any easier! Lucky for us just a little over an hour later ladybug was back in our arms snuggling up and working on waking up

                    still feeling a little loopy 😯 

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! 

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! 

FIGHT- CONQUER- WIN! 

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 4^th of July! 

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:

Adults

S-XL. $17.00

2XL. $18.00

3XL. $20.00

Youth

2T-4T. $14.50

S-XL. $15.00

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