17 October 2014


For everyone else in the family lockdown is full of rearranging schedules, keeping Rylie safe from viruses, endless amounts of laundry and cleaning... It's overall just a stress filled week! But for Rylie, lockdown week is her favorite time of every month. It's a week away from school spending the days with her favorite people... Her grandparents! Craft projects, movies, baking, snuggles, and just being spoiled rotten from sun up to sun down! If there is any good that has come from chemo it's the amazing bond she has built with her grandparents! At a time when she is feeling a little down and sick they swoop right in, surround her with love and happiness. They spend all day snuggling her when daddy and I have to be away. We can not express the amount of gratitude we have in our hearts for these amazing people! Without their love and support these last 6 months probably would have killed us! 

We are so very blessed to have 5 of the best grandparents on the planet- Rylie is a Lucky, Lucky little girl!

Crafts and Goodies with Grandma Kim! 

Toys and Snuggles with Grandma Becky! 

15 October 2014

Our Favorite Special Treat!

After a day full of doctors appointments Ladybug and I were totally spent. Daddy was preparing to head out of town for the weekend and we needed a mini getaway of our own. So, we packed up and headed out to one of our favorite spots! Fiiz Drinks! We love this place! They having amazing sweet treats, delicious popcorn, and a million drink choices. It's the cutest atmosphere around... And the staff... I cannot say enough good things about them! They have been so incredible to not only our NF buddies but to our little family as well. If you're in Utah you have to spot in for a visit... With Ry and I of course!

Fiiz Fans For Life! 

Ophthalmology Vist- VEP Testing

Octobers round of eye exams and tests and done (Thank Goodness)! Our sweet girl had a little bit of a rough start to the day but she pulled through and did pretty amazing towards the end.

Of all the things Rylie has to go through every month she seems to hate the VEP testing the most. It's a fairly simple test. No pokes, no meds, just some cream on her ears and light up goggles! But... Nonetheless she HATES this test! The test itself only takes about 60 seconds but once those goggles come out the freak out begins! She hates those damn goggles!!! As soon as the doctor grabs them her anxiety level soars through the roof! As frustrating as it may be you can't blame her... This is some scary stuff. I can't imagine the thoughts that run through her sweet little head. I wish we could take all the anxiety and fear away. This session seemed to be especially difficult. She just had a really rough time this go round, having daddy gone never sits well with her! Thank goodness Aunt Christy was there to help ease some of her fears and calm a super anxious mommy. We weren't able to get a good reading from the VEP test this go round but it appears as if nothing has changed. We will repeat the test again next month and go from there…

After the VEP test we headed on over to see Dr. Hoffman. No shortage of smiles there! His staff is amazing and always spoils Rylie rotten. Games, movies, books, and snacks... All of her favorite things! She pretty much has the routine down so nothing too dramatic happens to surprise her while we're there... She still hates getting the dilating drops in her eyes but you can’t really blame her.

Dr. Hoffman worked his magic and got a pretty good look at Rylie's eyes this go round. Her swelling in the left eye has continued to decrease and the tumor remains stable, showing no obvious growth. Pretty good news on all fronts! The only downer from this visit was scheduling another surgery... Because of the tumors rapid growth Rylie has some problems with ingrown lower eyelashes and a blocked tear duct in her left eye. Small in comparison to the major issues we're dealing with but it's another surgery nonetheless so were a little worried about how she will handle things with this being her first surgery since starting chemo... So, cross your fingers, say a few extra prayers, and hope that November 6th the stars align and our beautiful girl comes out of surgery happier and healthier!

It's always playtime for a 2 year old! 

Opthamology-VEP Test

LadyBug did an amazing job at her eye exams on Friday. She's turned into such a little person- just too cute for words! 

Both the VEP tests and the opthamology exam showed no changes in either the positive or negative direction. Rylie's left eye is still in bad shape BUT her right eye seems to be responding well! In fact, her right eye tested above average on Friday! Good news!!! 

While the swelling in the left eye has decreased Rylie's eye is still drifting to the side a bit. Nothing we can not fix later on. For now we will focus on chemo and giving these tumors the heave hoe and fix everything else later! 

Thank you all for your continued support and prayers. Your positive thoughts defiantly help gets us through each and everyday! {{{HUGS}}}

Chemotherapy- Course 6 (Half Way Baby!!!)

Chemo #6 is all done folks!!! We are officially half way through the toughest year of our lives!!! Yep, happy dance all around!

Rylie is doing amazingly well with chemo! She has formed a pretty special bond with her oncology team and each visit is becoming a little bit easier for all of us. It's seems like just yesterday we started this journey but to sit back and watch just how far she has come, your able to get a little perspective and see just how grown up our baby really is!

Rylie has experienced no new side affects with chemo and we seem to have found a good mix of medications and homeopathic remedies to aid her during the days of dreaded mouth sores, upset tummy days, diarrhea, and horrendous diaper rash! Slowly but surely we are figuring things out and coping the best way we know how!

PCH has the BEST nurses EVER! 

 Always claiming "her" kitchen and Grocery cart ;0

This month we actually got quite a few smiles during her infusion... No surprise there. Daddy was off on a big hunting trip (don’t worry she told everyone over and over and over again where he was) so Aunt Jody joined us this time and she always knows just how to make her smile! When daddy isn’t able to make it taking others with us seems to be a little bit of a treat for her, a welcome distraction for all of us!

 Always LOTS of fun with aunt Jody! 
Calm before the storm… The flu shot defiantly did not go over well...

Next month is a big month for Ladybug. We have a bunch of tests scheduled to check out where Rylie is at this point in her treatment! We are remaining hopeful the tumor will shrink but we have to stay realistic in knowing that may not happen. Optic nerve Gliomas are low- grade tumors and the chances that Rylie’s tumor never shrinks is a very real possibility. At this point we pray just keep praying for stability and no changes in the negative direction. In the mean time we will continue to enjoy our days off from the hospital and rest up for a very busy November!

Resting at home… such a strong girl! 

07 October 2014

2014 NF Symposium

On September 20th we had the incredible honor of attending the Utah NF Chapter's annual NF Symposium. With this being our first year we were really excited to meet some other NF families and learn a little bit more on how we can help our little ladybug cope through the next 6 months of chemotherapy!

This years topic was a perfect fit for us… "Complimentary Medicine"
As you can imagine the last few months and been filled with some difficulties. Some of which we have overcome, others of which we are still working on. While western medicine can provide us with some answers and prescriptions they simply can not fix everything! One of the biggest problems we have had with Rylie is her sleep… or the lack there of… for as long as we can remember Rylie has never been a good sleeper. We joke that the only time she slept well was when she was a newborn and you all know how much sleep first time parents get. As more NF symptoms presented themselves Rylie's sleep seemed to deteriorate more and more. As an infant we passed it off to sleep training, teething, ear infections… really anything and everything we could think of. It wasn't until Rylie's tumors were diagnosed in February that we realized maybe this sleep issue is related to something else. Sure enough when the MRI confirmed what the doctors already suspected we were told sleep may become an issue (if it hadn't already). You see, we were told children with these types of brain tumors typically fall into one of two categories… they sleep ALOT or the DON'T sleep at all… lucky for us we got the non-sleeper. We've tried a few things but nothing seemed to work and to be honest as a parent knowing your child is sick it doesn't really work when  trying the "cry it out" method. She's going through enough as it is, I wasn't about to let her lay in bed and cry hour hours on end (We tried it... once, 3 hours later we were all ready to lose it). So we kept chugging along, sleepless night after sleepless night then on a beautiful Saturday afternoon in September all of our prayers were finally answered!!! Complimentary Medicine… using essential oils and message techniques to help relax and calm even the most stressed out family! It was so nice to have some dedicated time with medical professionals instructing us on the best way to help our girl survive the brutal realities of chemo. 

We even had the opportunity to check out some of the tools used during acupuncture and aromatherapy… momma might need to give this a try herself!!! 
Acupuncture tool 

We spent a great deal of time at the symposium talking about a few oils they felt would be helpful for children with NF (Lavender, Frankincense  Tea Tree Oil, and Turmeric). Both the physicians practicing eastern medicine and our team of western medicine doctors felt using the two together could benefit each child differently but greatly. To be honest we were pretty skeptical... We're kind of tough it out people. But, when you watch you child go through something so traumatic month after month your willining to give anything a try. What we did know is we wanted to try it with someone that was experienced and that we trusted. Lucky for us my cousin is a licensed message therapists so we knew just where to go. Lucky for us she was free the very next day. She came over gave us a few pointers, mixed us up some oils, gave us a hug goodnight and wished us good luck. 

We also had the amazing opportunity to listen to a few research updated Rylie's Geneticist is working on… i tell you this man is amazing! He cares so much about these kiddos and I know one day with his help we will find a cure for NF! He even helped to write a book for family and friends of kiddos with NF. It's literally the story of our journey, in cartoon form… we can't wait to get a copy! 

  The AMAZING Dr. V! 

So excited to get our copy of Mary's Spots! 

We are now one week in and things are getting ether everyday. Rylie is waking up less and less every night and the oils seem to ease her anxiety a little bit. We are still trying different things out but it feels like we're making sone positive changes and moving in the right direction is all anyone could ask for! 

We've learned A LOT these last 6 months but the most important lesson I think we've learned is one size DOES NOT fit all! You know your child best! Don't be afraid to ask questions. Don't be afraid to demand answers! Ask for more tests, referrals, and second opinions. This is our baby and we want her to be safe, happy, and Healthy! And, we WILL get there. It's been a long road and I know we have a bit more road to travel but day by day it's getting easier and having a team of professionals we trust surrounding us makes the journey all the easier. 

Beautiful morning view from Shriners Hospital is SLC

Sending a little "Good Morning" Hello to our little LadyBug 

Wouldn't want to spend the day with anyone else :)