Hello! After an amazing two week vacation I am home! I had the time of my life and couldn’t of asked for things to go any better than they did.
The vacation started with a helicopter ride in 690, the police helicopter, with my son Michael and Capt. Price. The views were breathtaking and we had an amazing time up in the sky. The pilot, Bob Riley, was brave enough to allow me to take the controls for a few minutes. It was an amazing experience! I will be going for a second ride after the Christmas lights are on at the Plaza. Check helicopter ride off of the bucket list! Thank you to Jennifer Young and Officer Riley for making it possible!
After only a few hours of sleep, I hopped on a plane to go to Vegas. I was accompanied by the Loy family, Kenny, Missy and their twins Kenny and Kylene. From the moment I have met the Loy’s they always made me feel like one of their own. We boarded the plane and I was slightly nervous about how well I would be able to breath due to my poor FVC numbers and the high elevation. I can gladly say, I had zero problems and was able to breath perfectly fine.
Vegas had always been one of my favorite travel destinations. I know the amount of walking Vegas can entail and I did not want to disappoint the twins, I wanted them to have a great vacation and do everything they were hoping to while we were there. I am happy to say during the four days we were there I nearly walked 20 miles! I had zero problems! I may not walk as fast as I once did, but I impressed myself. There was little to no humidity in Vegas so breathing was never an issue.
We had an amazing trip full of lots of laughter and good times. We walked the strip, enjoyed In-n-Out Burger (one of my all time favorites), went to the top of the stratosphere to enjoy the views and watched the twins ride the Big Shot, Ziplined across Freemont St, ate at Nacho Daddy multiple times, watched the Blue Man group preform, went to the mob museum, enjoyed relaxing by the pool admiring the shark tank, and much more. We made memories I will never forget and I am forever grateful for the friendship I have with the Loy’s.
We flew home on Thursday morning. I was able to unpack, do some laundry, and it was time to repack for our Hermann trip the following morning. Friday morning, came and it was time to go to wine country! Patti, Chris, Missy, Kenny, and I arrived minutes before the train was scheduled to leave. Luckily, Patti was able to hold the train! The train ride was a blast. There is never a dull moment with these friends, the laughter is nonstop and exactly what I need.
We arrived in Hermann. It was a toasty nearly 100 degrees and humid. We walked to the cottage we would be staying at for out trip. Friday night, we enjoyed a few tastings at the distillery and Wurst Haus. Saturday morning we were up and ready to go! The trolley picked us up and took us from winery to winery. We went on a couple tours and enjoyed a lot of tasty wine. We ended up OakGlenn, there was a live band, and we had the time of our lives. Truly danced the night away, it may not have been the prettiest sight but we didn’t care! Hermann was an amazing time with amazing people.
I returned home from Hermann and again unpacked, then repacked, with only hours until I left on a plane for the last leg of the vacation. I was headed to Chesapeake Bay to spend the week with my siblings and all of my dad’s side of the family. It had been several years since I had been to the Bay and I was anxious to return.
The General, my aunt Lesli, had an agenda for the entire week lined out and they were ready to see us. The trip was everything I had hoped it would be. I love nothing more than to be surrounded by my family. We spent several hours on the beach, boat rides, went to a Nationals game, and ate a ton of crab!
My uncle Chris ensured we would be riding in style to the Nationals game, a charter bus pulled up to take us all to the game! There were 20 of us total and what a great time it was! The ballpark was beautiful! We sat as a family in awe of the beautiful fireworks at the conclusion of the game.
It was a relaxing trip surrounded by family. All a girl could ask for. Many late nights, staying awake as long as I could handle so I did not miss a thing. Sitting around the table eating crab and talking until nearly midnight. Getting to enjoy all of my cousins which mean the world to me. They grow way too fast and I love watching them have the time of their life at the bay.
Goodbyes are not an easy thing for me anymore. I have always had a tender heart but its a whole new emotion now. That side of the family is several hours away and I am unable to make the trip out there as often as I would like to. It was very hard to say goodbye and I shed many tears as we drove away to head to the airport.
I returned home. I was exhausted but excited knowing the following night, I was going to fulfill a dream come true. As many people know, I am a diehard and loyal Royals fan. I have loved the royals as long as I can remember. My best friend, Kayla and I would often spend our nights out there after our softball practice, watching the boys in blue. One season we went to over 40 games! We had many great memories out there together. I remember to this day sitting in the stands and telling Kayla, Someday I want to work for KCPD because I want to be that officer that gets to stand in the royals dugout every game. In 2012, I joined KCPD and on July 7th, 2018 I worked alongside Sgt. Tommy Woods in the royals dugout. It was a dream come true! I couldn’t believe it, I was able to talk to several of the players, take pictures with them, they gave me memorabilia to take home, and I was able to speak with George Brett who I know has a huge roll within the ALS association. George shared his phone number with me and told me to reach out to him if I were to need anything at all in the future. He ensured me I would be able to live out another dream of mine, and I will get to throw out the first pitch at the Royals game this season. George Brett, several players, and coaches let me know they will be praying for me. It was a night I will never forget and I am forever grateful for. It was made possible by my Captain, Lonnie Price, and his friend, Captain Paulson. Sgt. Woods was an exceptional host, he made sure I had a great experience. He took pictures of me throughout the night with many of the Royals staff and introduced me to a KCTV 5 reporter who conducted an interview. I have never been to crazy about being in front of a camera but YOLO (You only live once) right? The interview will air on Friday at 10 PM and I can not wait to see how it turns out.
So not everything in this life of mine is rainbows and unicorns. As Kurtis wrote in the previous post prior to the vacations, a breathing machine was delivered to my house and sits by my bedside. Its a constant reminder to me that my body is no longer what it once was. I can say I have slowly tried to introduce myself to the machine and get used to it. It will be able to allow the muscles I use to breath to get some much needed rest and hopefully make breathing throughout the day much easier.
Also, I was provided with a brace for my left leg yesterday. It is relatively slim and with jeans on it will not be too noticeable. The brace is to assist in holding my foot up to prevent me from tripping. My left leg is much weaker than my right especially at the ankle joint. The doctors call it a drop foot. Although I am not open to wearing it on a daily basis at this time, I have it and when I become tired or weak I will be able to use it.
In the mail after arriving home from my vacation, I opened a letter which said I was approved through insurance to start the newest FDA approved drug Radicava. This will require daily infusions for several days at a time followed by several days off and then several days back on so on and so forth. I will need a port placed in my chest to make the infusions easier and prevent me from becoming a pin cushion. After much debate about the pros and cons of the drug, I am going to give it a shot! If it doesn’t work for me then I stop, but at least I will know. The drug should slow the progression of the illness, it will not make me stronger but rather help me maintain the muscle I still have.
Also this week I am participating in a research study. There are no drugs administered with this study it is simply to gather as much information about the disease as they can. I never seconded guessed the study, if I can do this to help people in the future I am more than happy to help in hopes one day we can find a cure to this horrible illness.
I do not return to the clinic until September 24th. At that appointment I will again meet with all of the doctors and therapist which are apart of the team at KU. They will reevaluate and know the progression the disease has or hasn’t (fingers crossed) made on my body in the previous three months.
Thank you to every single person who has had a hand in making these past couple weeks the best of my entire life. I have lived life to fullest and I will continue to do so with that same smile on my face. I extremely thankful for all of the support I have received. Sarah’s Soldiers is a huge army made of people near and far willing to give me a helping hand when I am in need. The police department has surrounded me with more love and support than I could have ever expected. They are going the extra mile to ensure I am able to do the things I wish to do. I ask that all of you that are available to come to the event which is planned for July 20th from 4:00 PM to 7:00 PM at the Sandbox (509 NW Barry Rd). That night 50% of the proceeds will be given directly to me to assist with medical expenses down the road. It will be a great evening I have no doubt about it!
Live the life you love, and love the life you live! Next up, traveling to Florida with Jared to watch Kayla marry the love of her life! Until next time!