19 August 2014

Local Support for the NF Walk!

The 4th Annual NF Walk is quickly approaching-just 4 more days remain to get yourself pre-registered to walk with the ladybug gang as we fight to End NF! 

Great News The LadyBug Gang is crushing our goals this year! Originally we set out to register 20 supporters to walk with us this year. Within a few days we had already blown through that goal! so, what do you do when you reach a goal you set a new one! Our new goal 50 people! Yep, we want to double our original goal! Imagine my surprise when I logged on this morning and noticed we were at 49 people!!! We are so close who's going to log on today and get us to our goal? Virtual walkers welcome!!!  

Another welcome surprise… all the support we have had from local community businesses! My heart filled with such joy and happiness with each donation we received. If your in the bountiful area PLEASE support these amazing businesses! 

Kendalls Media. The amazing Kristi Kendall Flower is donating her time and expertise and will be this years official Photographer! Stay tuned… some amazing photos are about to come your way! 

Country Bum Creations. Some of Rylie's favorite people have donated some amazing products to this years walk! You will be blown away with the beautiful items they can create for your home! 

Papa Murphy's. These amazing people have been apart of my life since i was 16 years old! This was the first job I had as a teenager and they have become much more than friends, they have become members of our family. They have always been a constant source of support… and their pizzas are pretty tasty too! :) 

Fiiz Drinks. Rylie's new summer obsession! This is a new business in the Bountiful area and let me tell you they are some of the sweetest people you will ever meet! You kids will LOVE this place! 

OMassage and The Massage Center. The Beautiful and amazingly talented Shanai Olson graciously donated a 60 minute massage to this years NF Raffle. If you in need of some body work she is the girl to call! You will leave feeling A-MAZ-ING! 

The Living Plant Aquarium. These amazing folks graciously donated a family 4-pack to visit their new facility! You're not going to want to miss out on an opportunity to check this place out! 

Utah's Hogle Zoo. Who's ready to check out the new and improved zoo? Their generous donation all 4- all days passes will be the perfect end to your summer fun! 

Boondock's Food and Fun. Date night anyone? Make sure you pick up your raffle tickets and enter a chance to win a fun day of play at boondocks! 

All of these business and many, many more have given so much to this years walk. Come out and join us this Saturday, August 23rd at SugarHouse Park and we Walk to EndNF! It will be a fun day each and every family member will enjoy! 

The Hardest Job I've Ever Loved!

A few weeks ago an article was sent to me by a dear friend and a fellow NF parent. It was an article that touched so very close to home. Remember the mother of sick children, an article that literally describes our life and how we navigate through it. 

As the article states, "Motherhood is the hardest job you'll ever love". Hell, parenthood in general is hard. It's hard for mothers and its equally hard for fathers. Each parent feels a constant pull between being a "Good" parent, a valued employee, all while trying to keep our individuality in tact. Each parent has their own set of worries and struggles and we are no different. As we hobble through this journey we have been asked many times "How do you do it"? "I don't know how you guys keep it all together" Truth be told we don't know either… every day is a constant struggle. We have good days and we have bad days. We hear good news and then we get bad news. We question God and why any of this is happening. We get angry, sad, and every other emption in between. But, just when you feel as low as you can feel the most beautiful smile in the work reminds you why you live to fight another day! She looks to us to reassure her that everything will be okay - that we will keep her safe through all the scariness - That we will be there to hold her hand when stranger after stranger walks through the door… We don't have time to fall apart (for too long anyway). We have to gather our strength and every positive thought we can muster up in our bodies to show her no matter what happens we will always be there for her! 

Fear is a constant in our daily lives now. I have learned to hate quiet time. Quiet time leads to our minds wondering to places no parent ever wants to go to. I want to be busy, be productive… throw myself into something besides the craziness of our life. I don't want to worry about medical bills. I don't want to think about how we are going to fit in work and doctors appointment each month… and I certainly don't want to think about how we explain all these medical things to our daughter. Rylie is little, and explaining things to her doesn't take too much but it's painful to find the right words that she will understand yet not fear. One of the hardest things we have ever had to do is explain Rylie's diagnosis and treatment plan to our nieces and nephews. One thing is for sure, we really do have the BEST family in the world! We are blessed to have these 6 little humans in our lives. All of them are so different yet the love they have for their cousin is the same and it never falters. I think everyone in our families at one point or another pondered ways to keep the darkness away from them but let's be honest kids are smarter than most adults now days and it didn't take long for us to realize they would figure everything out and we had to be honest with them so they didn't have to carry the stress and anxiety with them. The amazing part… they are take every detail in stride. While they worry for their cousin it has changed nothing. They still love her with every once of their being and even on the worst of days they are still the only ones that can bring a smile back to our sweet girls face when she is feeling down. It's their sweet faces that she continuously looks at while we spend hours at the hospital. It's them that she talks about and looks forward to seeing when her treatment plans for the month are wrapped up. Seeing the way these kids interact with Rylie eases our fears and teaches us that with every "Bad" thing that comes our way we are blessed with a million times more GREAT things. 

We have had to give up many "luxuries, I call them luxuries because in the grand scheme of things they just really don;t matter much anymore. We don't just pick up and go places anymore… and my toes, well let's just say they have seen better days! ;)  Everything we do, everywhere we go is carefully calculated and planned out to make sure Rylie's health and safety are a top priority. we are constantly evaluating who is sick, what is dirty, and how she is feeling. For hell sakes every bag we own is now stocked with sanitizer, disinfectant, meds and a thermometer. And we never stray to far from home. We have went from planning fun and excitement to planning emergency routes and exit plans. Date nights and Weekend Get-a-Ways with friends are few and far between. We have had to give up lots of little luxuries, some friends too. Our lives have drastically changed since February... It seems like a life time ago. We've aged beyond our years in just a few short months but these last few months have truly opened our eyes as to what IS truly important in life. We have learned to enjoy the little things and savor every moment we have together. We have learned to value the relationships we have had and will have. We've learned to speak our minds and stand up for what we believe in. We've learned that being a parent is the absolutely 100% hardest job we will ever do but is without a doubt the best thing we will ever do! 

I was reminded last night that each day is a new day. We all have good days and heaven knows we all have bad days. Know each bad moment will pass and with it a new, good memory will come. That's the blessing that comes with being a parent… nothing ever stays "Bad" for too Long!!! 

12 August 2014

Ophthalmology Exam-VEP Tests

A couple big eye tests this week and a big lesson learned! Life can at times throw you a curve ball and sometimes it throws you more than you think you can handle. This was one of those weeks. Lockdown weeks are always hard. Were all locked in the house 24/7 getting little rest and stress and emotions seem to run out of control. Probably not the best time to schedule appointments like these but doctors schedules in the summer are pretty impossible so we take what we can get. 

Today did not go as we had hoped. After meeting with both the Opthamologist and the VEP team both felt that Rylie's vision is almost completely gone in her left eye. Unfortunately Rylie tumor grew quickly and caused a great deal or stress and pressure on her optic nerve, as a result the chance Rylie regains any vision in that eye is slim to none. Is there a chance, yes- but both doctors feel as if that chance is slim. It's a hard pill to swallow but you we are also very thankful... If this ordeal has taught us anything it's that things can always be worse. We have to be positive and work with what we have be given. 

Positive news however is that the right eye is responding very well to the chemotherapy protocol Eylie is currently on! The tumors in her right eye are small- and from the looks of things they are staying that way. All of the test show Ryliea right eye functioning at near normal levels! Excellent news to hear after a little bit of bad news! 

If nothing else today had re-confirmed what an amazing little fighter we have! She handles all of these tests so incredibly well. We are so proud of her and her absolutely beautiful and positive outlook on life! 

Thank you for always helping us to remember to smile! We love you LadyBug! 


Our Charmed by Charity Event with Alex and Ani was an amazing success!!!! We raises $392! $392 that goes directly to NF research and awareness! 

On August 6th I had the amazing opportunity to co-host a Charmed by Charity event with Alex and Ani here in Salt Lake City! Such a fun night! Ladies from across the state came into the store and shopped their hearts away. Purchasing bangles for themselves and those they love! The ladies at Alex and Ani were absolutely amazing... Helping everyone to pick out pieces that would fit their own styles and personality! It was an amazing night! 

The beautiful ladies at Alex and Ani handled everything...

They set up a wonderful assortment of snacks and drinks! 

They helped each and every guest pick out the perfect bangle! 

And the best part of the night... I finally got to meet some fellow NF moms. We have talked for months on the phone, thru emails, and over Facebook but we had never had the pleasure of meeting in person! It was so wonderful to finally hug the people who hVe helped walk us thru these last few months! 

If you are apart of a non-profit  and are lookin for ways to raise awareness throughout the community contact Alex and Ani and host your own Charmed by Charity event- it's an amazing way to raise awareness for something you feel so passionate about! Women love shopping so you're sure to have a successful event! We can't wait to host our next event with them! 

We hope you all are enjoying your new bangles as much as we are! 💙

Chemotherapy- Course 4

Round #4 is in the bag... 8 more rounds to go! 

This was a big month for Miss Rylie! Before chemo she had her 3 month MRI to check the progression of the tumor. We were pretty nervous about this scan/appointment and were just praying things would stabilize! Because this scan was so important chemo would not start until the MRI results were in, no sense in putting her through another round of chemo if it wasn't working. So, we snuggled up in our clinic room and waited... and waited... and waited. You know, and hour seems like an eternity when you are literally waiting for someone to deliver your fate! But, happily it was worth the wait!!! Rylie's tumor is stable!!! No growth, no shrinking which at the 3 month mark is exactly what they want to see. I think we all let out a collective sigh of relief! I think it was the first time Brett and I finky felt like the tides were turning and our little girl would be okay!!! Then reality snacks you back in the face and the doctors tell you this means everything, yet nothing to them. We still have to watch the tumors very carefully and make sure in the coming months they continue to respond to treatments! But, for just a few moments we were able to bask in the joys and relief of knowing things are working and so far doing what we need them to do! 

The rest of the oncology appointment was realitively smooth. Rylie was still fighting off the sedation meds so she slept nearly the entire time. Waking up just about an hour before we left. She was completely content with snuggling up in the rocking chair and enjoying a movie or two! 

She continues to melt our hearts! We are SO proud of her and everything she has overcome in the last few months! Your continued love and prayers are much appreciated!