19 December 2014

2014 in Review

2014! Wow what a year it has been... full of doctors appointments, testing, and stress...just pure craziness!

2014 in Review
1 Well-Baby Check-Up
1 Overnight Stay at Primary Children's Hospital
1 Power PORT Placement Surgery
1 Tear Duct Surgery
2 High Fever Emergency Room Visits
10 Rounds of Vincristine (chemotherapy #1)
8 Rounds of Carboplatine (chemotherapy #2)
20 Blood Draws
4 Sedated MRI's
1 Sedated Auditory Brain Response Test
10 Visual Evoked Response Tests
9 Oncology Appointments
12 Ophthalmology Appointments
2 Audiology Appointments
56 Days of LockDown
245 days closer to a healthy baby!!!

2014 has been a year full of stress and anxiety... but it has also been a year full of growth and understanding. During the worst time of our lives we've had the incredible opportunity to surround ourselves with some of the best people we could have ever had the pleasure of knowing. Complete strangers have supported us through all of the ups and downs... and our families, well they all are just simply amazing!!! 

Sometime bad things happen to good people. I am a firm believer that none of these trials happen as a punishment- they happen to teach us. To open our eyes to what is really happening around us! All too often we all forget how much love surrounds us. We get busy with the hustle and bustle of life and forget to just STOP and enjoy the little moments in life. This situation has forced us to face our insecurities and bad habits. It's forced us to evaluate our lives and prioritize what's important. This beautiful little girl is our life! She's is incredible fighter showing us strength we didn't think anyone, let alone a toddler could have. She's taught us how to be patient, loving, understanding, and most importantly grateful for every second we have together! 

Thank you for all of the love and support you've given to our family this year. We are so blessed to have such amazing family and friends surrounding us in our time of need. We will forever be grateful for the opportunities we've had to get to know you! You've enriched our lives more than you will ever know! 

Happy Holidays!!! 

The LadyBug Gang 

04 December 2014

Chemotherapy- Round 8

Round 8 is done!!! 4 more rounds to go! Man, it feels so surreal to say that... And a little scary too! This has become such a part of us- those amazing people at Primarys have become apart of us... It's almost scary to think about not seeing them every few days. It's like taking home a new baby... You're just not sure they should let you leave with her... Alone and without constant supervision! While at times it seems like we would never make it through this year it's crazy to think we're more than half way through!!! 

Today went really well---quick and semi-painless! Might have been the quickest appointment we have ever had with oncology! Not much has changed from last month so after a few quick checks from the oncology team Rylie was accessed, IV fluids started, chemo infused, 10 more minutes of IV fluids... Then it was time to get de-accessed and head home! 

Grandma Kim was able to sneak away from work for a few hours this morning and come up to see where we've been hanging out the last few months. Rylie was really excited to show Grandma "her" kitchen and color some pictures with her. 


It's pretty funny to see her little personality come out through this process- she defiantly knows what she wants and when she wants it. 😉 Our baby is growing up right before our eyes! 

Before heading home we stopped off to check out the Christmas Tree decorated for the families on the oncology ward. Rylie has really caught the Christmas spirit this year and LOVES seeing all the decorations! Her little face just lights up when she sees everything decorated! 

While this year has been incredibly difficult for our little family, walking these halls seeing all of the families that will be spending the holidays in the hospital instead of at home surrounded by loved ones reminds you of how precious each and every moment is. Getting to sit at home, snuggled up on the couch, drinking hot chocolate and watching Christmas movies is a luxury many people dream about. Cherish every second you get to spend with your families this holiday season and pray for those fighting to get home to theirs! 

Burpees 4 Rylie

Thank you to everyone that came out this morning to support our little LadyBug at the Burpees 4 Rylie event at CrossFit22! 

Such an amazing morning full of fun and inspirational people!!! 

Recap video of all the fun we had this morning up on the LadyBug Gang Facebook page! 

Ophthalmology... And A Few Christmas Trees

All done with the eye appointments for the day. No change from last month! The ophthalmology team is still a little concerned with the damage that the tumor has already done to the nerves in Rylie's left eye but we can fix that later with a surgery to straighten out her drifting eye if needed before she starts school. We will wait until we complete the entire treatment plan and make that call after we are all done in April and see where her sight ends up. 

She was such a big girl today. She's becoming a pro with all these doctors appointments... Today she even told the doctors she would sit on the chair all by herself! Hello Ms. Independant! 

She got lots of compliments of her pretty sweater... She made sure to remind them her shoes were pretty awesome too 😉

All in all Dr. Hoffman is really pleased with her progress! Looking back to where were were in April of this year none of us thought we would even have a chance at a good outcome so we will take any small amount of good news we are given... It means we are moving in the right direction and that's all we could have ever hoped for! 

To celebrate we headed out to tour this years Festival of Trees! Each year South Towne Expo Center holds an event where people donate their time and materials to decorate hundreds of Christmas Trees, Wreaths, and Gingerbread Houses... After everything is all set up the public is welcomed in to bid on the trees, look around, and shop! EVERY SINGLE DOLLAR is then donated to Prinary Childrens Hospital! Helping to provide medical treatment to kids just like Rylie. It's become a fun family tradition of ours each year but this year it took on extra special meaning. Primary's has become our second home and any time we can give a little back to them we jump at the opportunity... Plus who can turn down the chance to look at all those amazing trees! 

It was such a fun afternoon! Rylie loved all the goodies, face painting, and cute lil' dancers... She could have stayed there all day if I would have let her! If your in Salt Lake City next year around this time you have to stop over for a visit- Best way to kick off the holiday season! 

24 November 2014

Sedated ABR Testing

Wow! What an eventful few days we've had! 

Tuesday Rylie had her first ABR hearing test. As we've mentioned before other hearing tests have indicated Rylie may be experiencing some hearing loss as a side effect of the Chemotheraphy drugs she receives every month. The ABR (Auditoy Brainstem Response) Test is similar to the VEP test Rylie undergoes each month, the main difference is she has to be sedated for the hearing test while she's awake and kicking for the VEP test. The ABR test was set up so we could gather the best information we possibly could,raving no questions to how well she is hearing. The main concern being her hearing seems to be decreasing in the left ear... Her sight is severely damaged on the left side so the hope is we protect her hearing on the left side as much as possible. While some tests indicated a hearing loss other tests were inconclusive... Mainly because Rylie is just too young to understand the directions they needed her to follow. The ABR test gives us the exact information we need- no questions asked. 

So, onto the test. Rylie's test was scheduled for 1pm on Tuesday afternoon which meant no food or drinks when she woke up on the morning.  She was allowed clear liquids up until 10am but she woke up wanting some chocolate milk and when she was told she couldn't have it the melt downs started. You can't blame the poor girl...hell, the more you're told NO the more you want something. She was so upset Daddy ended up taking her on a long drive until she cried herself to sleep... We even let her open up a Christmas present in hopes it would clear her mind and make her a little happy... Didn't work! She knows what she wants and nothing was going to change her mind! 

Once we got up to the hospital we checked into the RTU unit and began all the pre-op rituals. Height, weight, blood pressure, port access... Then we waited. The hospital of course was a little behind so we got plenty of time to play! Hello play dough! 

A little while later we met with the anesthesiologist and away she went. I keep hoping them taking her away will get easier but it still seems to rip a piece of our hearts out each time...

The test was pretty simple and lasted about an hour. The ABR test is used to measure information on the inner ear (cochlea) and the brains pathways for hearing. Rylie is experiencing something called sensorineural hearing loss, a type of high frequency loss. This happens slowly over time and generally occurs when the tiny hair follicles on the cochlea are damaged, damage caused by Chemotheraphy in her case. What this means is right now Rylie can hear she just is not hearing things as clearly as she was before we started chemo. Good news is the tests showed the loss has not translated into her everyday hearing ranges. Really encouraging news...the audiologist was expecting worse news. 

Because the loss can occur slowly over time Rylie will have another ABR test after her MRI in February. We will cross our fingers and hope everything stays the same. Until then... We rest, relax, and enjoy the holidays!!!

Thank you for all of your love and prayers! You all encourage us everyday to keep moving forward... Even in the tough days! 

12 November 2014

Things Change Too Quickly

My, oh my how things change so quickly. Our poor sweet girl just can't catch a break! First we had a complication with surgery on Thursday… a scratched cornea lead to some painful hours for our little gal. Then she was up and ready to start chemo and tackle another day. She recovered quickly and seemed to be on the mend Monday night. She was happily watching movies, playing babies and kitchen with daddy while I went grocery shopping and cooked some dinner. Around 5pm things took a drastic change… Rylie became very clingy. She moaned and cried non-stop for about an hour. After trying to get her to rest and relax for a little bit we decided we needed to check her temperature. 102.4! We freaked out. At 101 we are supposed to head straight to the hospital, no calls… just go! So, after a little bit of panicking we changed the thermometer batteries and checked her again… 102.6! Brett grabbed the baby and feverishly started packing some of her things while I called the on call oncologist… We had to be wrong. There was no way it was that high..Wrong! they told us to get in the car and head to the ER! We were completely panicked. Rylie has never had a fever… NEVER! Not when she gets sick, not when she had ear infections or when she was teething… she just never runs a fever! Knowing she had a fever scared the crap out of us. Our hearts sank… we just knew something was wrong…

The 15-minute drive to the hospital seemed to take forever. Sitting in the back seat watching her become less and less responsive sent shear terror through my body. I just kept waiving the bright lights of my phone in her face begging her to keep talking to me. She had no interest. We pulled into the parking lot and ran into the ER lobby. Rylie had already been pre-admitted so they got to us quickly. Took another set of vitals… her heart rate was low and her temperature had soared to 103.8! The nurses explained to us that Rylie was in what they call a pre-shock status so they were going to rush her back and get her fluids and antibiotics quickly so things don’t get worse! If her port was infected we had to kick this thing quickly! It was so intimidating seeing a room full of people all working so fast to get her the things she needed. One was accessing her port, another was preparing some Tylenol, a third was hooking up the fluids and antibiotics, a Nurse practitioner was taking another set of vitals… there were so many people we missed the resident and attending physicians coming in to check her out. It was insanity! They worked so quickly… if it weren’t for all of them working so fast and efficiently I would hate to think what would have happened if we didn’t luck out and get the team we had that night! Once she was a little bit more stable they were able to draw some more labs to see how her counts were. In less than 24 hours her White Blood Cell (WBC) counts had dropped from 7.7 to 3.8. A pretty drastic drop for just a few hours… Her WBC is what helps her fight off infection so once we heard how drastically her counts had dropped we were relived to see how quickly they had worked to get her fluids and antibiotics!

It was the longest 24 hours of our lives. A constant struggle of making sure every 4 hours her meds were given so the fever didn’t return. Begging her to eat or drink something, anything to keep her strength and a few more doses of fluids and antibiotics to help her fight off whatever was coming her way. Finally, around 10pm last night she finally seemed to kick the fever. She got a good nights rest and woke up ready to play. Hopefully, we can get her counts up a little bit before next week’s lockdown.

THANK YOU to everyone for your continued support and prayers. We are so thankful and blessed to have each and every one of you supporting us on this difficult journey!

Hearing Tests… Round 2, Plan B

This little peanut is just too cute for words! Just a complete blessing!

After chemo Monday afternoon we had to head back over to audiology to re-check Rylie’s hearing in her left ear. The audiologists ran a few tests last week and we know she’s had a change in what she is hearing in her left ear, but at this point we just don’t know how bad that change is.

We we’re a little worried about how she would do during the testing since she was so heavily sedated for her MRI earlier that morning and then had 4 hours of chemo right after but she managed to wake up, eat some lunch and bounce back to her feisty little self with about an hour to spare!

So, we jumped into the booth and started to repeat the tests ran last week. Things didn’t go quite as planned. She was happy as can be but she didn’t quite understand what we needed her to do. The audiologist said she was the most well behaved uncooperative child they had ever met (LOL). She gave it her best shot but the tests were just a little bit tough for someone her age.

So… we move on to Plan B. On December 2 Rylie will have a sedated Auditory Brainstem Response (ABR) test. The ABR test measures the reaction of the parts of a child’s nervous system that affect hearing. (The ABR test measures the hearing nerve’s response to sounds.) The test is a helpful tool in determining a child’s ability to hear. The test uses a special computer to measure the way the child’s hearing nerve responds to different sounds. Three to four small stickers called electrodes will be placed on LadyBug’s head and in front of her ears and connected to a computer. As sounds are made through the earphones the electrodes measure how your child’s hearing nerves respond to them. The test is very similar to her VEP Test, just under sedation. Rylie’s audiologist will look for certain neurological markers to see how her hearing nerves are responding to certain sounds. The softest intensity or loudness level at which these markers appear roughly corresponds to the child’s hearing level in that frequency range or pitch. The entire process will take about 4 hours. After that we will meet to discuss the results and look into what the best options are to correct the problem if needed.

Of course, our hope is that there is no change that requires us to immediatly change her chemotherapy dosage or protocol but we have to be careful and make sure that once chemo is over she will still have an adequate level of hearing left to give her a chance at being successful in her daily life. It's a juggling act but we know we've got an amazing team that will help us figure it out!