30 May 2014

NF is...

NF is… Your baby girl starting a 12 month chemotherapy protocol just 2 days after her second birthday.

NF is... hearing doctors say they have never seen a tumor progress so rapidly in just a few short weeks. 

NF is... Hearing we are in "uncharted territory"

NF is... Hearing your daughters sight may never return. 

NF is... Trusting professionals... strangers with your most treasured gift. 

NF is... watching complete strangers inject your baby girl with poison hoping that it will make her tumor disappear. 

NF is… Major surgery with extreme pain lasting weeks and weeks.

NF is… Nausea, constipation, hair loss, mouth sores, and dozens of other nasty chemo side affects.

NF is... learning medical terms most people can't even pronounce let alone spell. 

NF is... endless research studies and clinical trials

NF is… Weight loss and fatigue.

NF is… Lots and Lots of Doctors appointments.

NF is… sitting down once a month for 2+ hours to coordinate work schedules, child care, doctors appointments and NF meetings. 

NF is... missing out on holidays, birthday parties, and fun with friends because you are just to weak. 

NF is... waiting... waiting and hoping medical procedures and treatments work there magic and fix your baby girl. 

NF is... stress and constant worry. 

NF is... FEAR...

NF is... Sharing your struggles with others all in the name of raising awareness

while there is lots of fear and uncertainty with NF there is also some good...

NF is… having faith in a bigger plan, hope for a cure, and appreciation for the things and time we have. 

NF is... Family, Friends, and an amazing support system.

NF is... Gratitude

NF is... A smile after a hard day and a comforting hug from a loved one. 

NF is... Learning to slow down and enjoy all the little things life has to offer.

NF is... making new friends that suffer from the same diagnosis. Finding a support group that will help to lead you through some of the darkest times. 

NF is... believing that one day there will be a cure for NF. It is believing that one day our NF Hero will some day live a life free from pain and doctor’s appointments. NF is believing in the power of awareness! 

To learn more about how you can help raise awareness and find a cure for NF visit The Children's Tumor Foundation

29 May 2014


LaduBug had her ophthalmology exam with Dr. Hoffman and a repeat VEP Test  with Dr. Creel yesterday And lately, it seems like every time we visit with Dr. Hoffman we get some more bad news… I think he hates giving it to us as much as we hate getting it. 

Good News… Rylie’s tumor has not grown in the last month! So that’s a win! More good news... Rylie has become a little pro with all of this testing she has to go through. We have seen Dr. Creel 3 times for this type of test and each time he tells us how amazing she is. He said most kids her age (or older) scream and cry through the entire test. Maybe it's because she knows there is a treasure box at the end of the appointment, or maybe it's because she knows it could be worse but she just sits and takes everything in strides and gives herself a big round of applause as soon as the tests are over! :) 


Bad news… the tumor did grow in April (We have not seen Dr. Hoffman since her last VEP Test and MRI confirmed the growth before the start of chemo) and as a result Dr. Hoffman confirmed Rylie has little to no vision in her left eye. The hope is after 12 months of chemotherapy they will be able to shrink and get rid of the tumor and "hopefully" Rylie’s vision will return. As he said the word "Hopefully" my heart sank. I think sometimes as a parent you hear what you want and need to hear and sometimes you hear the hard core truth and it smacks you right in the face. We have known for months Rylie's vision has been affected but it's hard to know just how much her vision has been affected because Rylie is so little. She can not read so that limits the tests that can do without being totally invasive... With a 2 year old the doctors pick and choose their battles and if we don't need to torture her they don't! We knew her vision was suffering, what we didn't know or I guess completely understand is that it may never return to 100%. Today Dr. Hoffman wanted to warn us that as this point we do not know how much if any of her vision will ever return. That was a little bit of a hit for us... the entire point of doing chemotherapy and putting Rylie through a year of complete torture is to get her vision back and to know there is a chance it will not return was defiantly a huge punch to the gut. It may be completely insane but as her parents I think we both thought we would go through this process and everything would return back to normal and to know there is a chance nothing will ever be normal again just... well, it sucks!!! We are still trying to wrap our heads around the fact that we have a child going through chemotherapy and are working to make some huge adjustments there and to now have to adjust to the fact she may never see out of her left eye again is terrifying. Many of you know my grandmother is blind and I have watched her suffer through that for years to think that my baby will have those same struggles breaks my heart. 

it takes a little time to adjust to that kind of news but we will adjust and we will move forward with the hope that the doctor's are doing everything they can to get rid of this tumor and get Rylie her vision back... and if they don't we will adjust to that to. Each day we gain a little bit more strength and a little bit more understanding... we will climb this mountain and hopefully some day look back on it and see just how far we have come. Rylie is a fighter and were ready to fight right along side of her. 

"Where there is no struggle, There is no Strength" 

22 May 2014

Chemotherapy- Course 1.2

Rylie completed her last chemo session for this month {{{ Happy Dance }}}

This month we started on a journey no parent ever wants to take. We checked our baby girl into the hospital and started on a 12 month journey into the deep dark unknown... Yesterday was a little bit of a tough day. We try and make chemo days as enjoyable as we can. Hospital Visits are special days and we try and treat them as such... something sweet always seems to make her smile...she's a girl so of course she likes anything with sugar!  

After chemo Rylie's appetite waivers quite a bit (were down a 1/2 pound this month already) so in the morning we decided to stop off for a donut and some chocolate milk. This girl cracks me up. She is quite the conversationalist now -she just chats and chats and tells you all about her friends and her toys. But today, man she jumped head first into that strawberries and cream donut! By the time she was done she was covered in frosting from her head to her toes...But she was happy so I was happy! 

After our donut we headed upstairs to start our last treatment round for this month. Yesterday was a little bit of a tougher day... Now that Rylie knows what it's like to have your port accessed while your awake she was pretty anxious about it. She in NO way wanted to be there today, and you can't really blame her. Since having her surgery she hates having her shirt off. It seems taking her shirt off is the trigger for her because as soon as I started to take off her shirt she had a total melt down. She knew what was coming and she was not happy about it. The Child Life Specialist did her best to comfort her but Rylie is pretty stubborn and she was in no mood for child's play. There were lots of tears and screams but once she was accessed and given the green light to go play her smile seemed to return. Rylie's new favorite you is her kitchen and she just happen to stumble upon one last week while we were getting her last round of chemo so when she got the go ahead to go back to the chemo bay she was up and at the door in about 5 seconds. The oncology nurses up at primary children's are amazing... they do their best to let the kiddos play and try to enjoy the little things even if they are being injected with poison  

It only takes about 30 minutes for Rylie to get her Vincristine so as soon as she was de-accessed she was up and headed for the door! She was not waiting around for anyone... It was all I could do to get our things gathered before she was out the door. She sweetly said by to everyone and headed straight for the elevators. It's so amazing to me... we have spent a lot of time up at Primary Children's since February but the fact that Rylie already knows the drill is mind blowing to me... She's two years old but she walks around there like she owns the place. :) 

Chemo days are long, exhausting days for all of us so we try to throw in a few rewards. I mean, she's two years old so even with a few tears we've been told she does AMAZING for her age! So in the afternoon we decided to head over to the new B-Town hotspot Fiiz Drinks. OMG they do not disappoint! Rylie and I kind of have an obsession with their yummy drinks and those delicious little crushed ice cubes already! We may already have a slight addiction...

May has been one of the longest months of our lives... there were things we never ever thought we would have to deal with that all hit us this month...but we made it! One day at a time, one foot in front of the other...

One month down, 11 months to go!!!

20 May 2014

Go Team Rylie!

My sis-in-law is a beast! And by beast I mean an amazingly strong freak of nature. We all look up to her a great deal. She is a great source of strength and support for our family so it was no surprise to us when she wanted to do a workout for our favorite ladyBug! 

On Mother’s Day she told us she and a friend from her gym were competing in a crossfit competition on Friday night and they were going to do the workout in honor of Miss Rylie! It was a sweet way to honor her and they did AMAZING! They competed in the RX+ Division and they totally killed it! 5th place baby!!! That's right, we here at Team Rylie kick ass and take names later! :0 

It may look easy but I promise you the 3 workouts they did were not even close to easy. I mean the weight my sister-in-law lifted was literally as much as my husband weighs!!! I may have been slightly inspired and freaked out at the same time! She is AMAZING! Her partner was pretty amazing too-they were a great team! 

THANK YOU Christy and Jason! You Guys are ROCKSTARS! 

And a HUGE round of applause to Sullivan Botello Events for designing the awesome Team Rylie shirts! You all are hands down the best designers around!!! You took our drawings and made our dreams a reality! We can't wait to get them all printed for the NF Walk! 

If you have any designing or event planning needs check out their website to see there amazing work {HERE} at sullivanbotelloevents.com.