A Big Win!

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Another dream come true! I was able to throw out the ceremonial first pitch at the Kansas City Royals game! From the moment I arrived at the ballpark – it was an incredible experience.

I was greeted by Ronnie and other members of Answering the Call; the organization that had already donated a large amount of money to my cause just a few weeks ago.  Ronnie’s good friend, Craig, aka Moose Man, with the newly named “Crown Town Cruiser” arrived to meet me. The Crown Town Cruiser is huge! It is a blue Toyota rock-crawler with a beautiful crown added on top. Unfortunately, due to time, I was unable to take a ride in the Crown Town Cruiser. But it is going to happen.

I was then greeted by Toby Cook, the VP of Royals Publicity. Toby gave me with a ride on a golf cart to the stadium where I waited to meet the crew from Fox Sports. I met Casey Carter, the producer of Fox Sports, and Dan the camera man. Casey has really taken a liking to my story, has read through all my blog posts, and watched my KCTV 5 interview.

I was escorted over to the Fox Sports set. Form there I was welcomed with a hug from both Monty and Joel Goldberg! They gave me a baseball they had both signed for me. It was show time. They put a mic on me and then it was time to tape the pregame show. Monty and Joel made it so easy and fun! I loved being on set with them. Shortly after, I did a separate interview with just Monty to air at a later date. Since I had the opportunity to have dinner at Jeff and his wife Tina’s house, they have been truly amazing. I have kept in touch with both of them and they are such great people.  After we wrapped up the interview, many of my family members were welcomed up on the set to take a picture with Monty and Joel. I love being able to share these special moments with my family. If you weren’t able to catch the interview on TV, here it is! It turned out great! Thank you to Monty, Joel, Casey, and the entire Fox Sports Crew who will all now be sporting their Sarah’s Soldiers bracelets.

After the interview – it was time to prepare for the first pitch! Toby took me to the press room until it was time to walk to the dugout. George Brett walked in to get me and we walked to the Royals dugout. Yes – you read that right – Hall of Famer George Brett. **dusts off shoulder**  In the dugout, I was met by Ned Yost.  He had a big smile on his face again and asked how I was doing.  I had the opportunity to talk to Ned and George for a few minutes. We joked and laughed, it was so surreal but much fun.  While in the dugout, I got to meet Brett Phillips, a young but very promising player for the Royals, who is new to the organization.  Brett came up to me gave me a hug and said, “I just saw your interview! You did great!” Ironically, I had just watched an interview Phillips did on instagram. We were able to joke about our interview skills. Brett was very down to earth and he will definitely become a fan favorite here in Kansas City, I have no doubt!

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Salvy entered the dugout and gave me a big hug! He told me it was good to see me again and asked how I was doing.  He signed my jersey and hung out with me in the dugout until it was time to take the field. While I was in the dugout I was also able to see Tommy Woods who I got to work the dugout with. I gave bracelets to George, Ned and Salvy. They all wore their bracelets the whole night!

It was time to take the field! George told me he would like to walk me to the mound and allow Salvy to catch the ball.  I was nervous, but I laughed the entire way to the mound talking with George.  I was told to “Fire away” and I let the ball fly! I didn’t make it the whole way to the plate but at least it was straight! With Salvy’s great catching abilities he was able to scoop it up and met me on the field with that notorious smile on his face.

Chicago Cubs v Kansas City Royals

After the pitch I walked off the field with George and was able to hug several of the sergeants and officers I have known for many years. Officer Ryan Alden was one of those officers.  Ryan has become a good friend of mine through the years.  Earlier in the week when I had found out I would be throwing the pitch out at a Chicago Cubs game I told Ryan I wanted to take a picture with Ben Zobrist.  I loved to watch Zobrist play ball, he always leaves it all on the field, and plays with so much heart. I was able to meet Zobrist and we were able to talk for a few minutes.  He let me know he will be in his thoughts and prayers. Thank you Ryan!!!

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After meeting Ben, I was interviewed by two more news stations. Channel 41 and channel 5 were both there and recorded my first pitch! If you have been unable to see the channel 41 news segment, here it is! Thank you Jordan and the entire 41 News crew for sharing my story! Check out their new story here! Channel 41 News Segment

KCTV5 was also in attendance to record the first pitch! Thank you for being there! You can see their new segment here, KCTV5 News Clip

After completing the interviews I was escorted up to the seats by Toby. As I approached the section, I was greeted by my brother Kurtis who I had not seen for several weeks. He was able to make it to the game as well as many of my family members from near and far.  My father was able to make the trip with my little brother Jonathan all the way from West Virginia! My sister Lindsey, brother Matt, and nephew Patrick all made the trip from St. Louis. With the game being in the middle of the week I was unsure if many of the family members would be able to attend! My grandpa made special trip to Kansas City just to watch me alongside my grandma.  Many, many other family, friends, and coworkers were all there to witness the pitch! There were nearly 100 tickets sold and several others which were spread throughout the ballpark. Thank you to each and everyone of you that showed up to support me or watched it from home! As I said in the interview, the support I have surrounding me is what keeps me going every single day! Thank you to the Royals organization for making this dream come true! It was another unbelievable experience I will never forget!

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I withstood the heat and was able to stay the entire game! I was able to see the Royals shutout the Cubbies 9-0! After the win I received text messages from Toby and Monty letting me know the Royals got that win for me!

The following morning even though I was very exhausted. I woke up and went to the 610 sports radio studio. I thought I was simply going to record a podcast to air at a later time….once I arrived I realized I was going to be live on the air! It went well and I had a lot of fun! You can listen to the interview here. Fast forward to 8:50 seconds and the interview will begin. After the interview I headed home for some much needed rest!

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On to the health update, many of you have asked how the infusions are going.  Well although I have not noticed much change, I also feel like I am not digressing either which is always positive! I am almost finished with my first 14 day cycle and my body handled it well which is all anyone can ask for! I will now have 14 days off!

I will need my prayer warriors on August 15th.  That morning I will be having surgery to place a port in my chest and remove the midline from my arm. Due to my difficulty breathing at times, surgery is no longer a routine thing.  I will be very closely monitored and have been ensured I have a very skilled doctor.  The port will make the infusions much easier! As for everything else, things are going well! Again I must thank you all for all of the love and support it means everything to me! Until next time….Peace out!

#Raisedroyal #Sarahssoldiers #strongertogether

 

 

 

 

 

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Let the infusions begin…

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Since the last post, I had the pleasure of meeting the President of the United States, Donald Trump.  All opinions of the man aside, I shook the hand of the world’s most powerful political figure and the leader of the only remaining global superpower. Prior to Trump visiting Kansas City, he said he wanted to meet and shake the hands of the three Officers which were shot in the line of duty only a week prior to his arrival. With the help of the Secret Service and many people within KCPD this was made possible. Not only were the three officers able to attend several of the people involved in the incident that day were also granted access to attend.  These officers were all within my unit and I too was invited to attend and witness another once in a lifetime experience.

While waiting for Air Force One to land we were all waiting out on the tarmac in a bullpen area.  George Brett and Josh Hawley were standing very close to me as they awaited to greet the president on the runway.  George turned my way and recognized me immediately. He came over and gave me a huge hug.  He asked how I was doing and if I was ready to deliver the first pitch to him.  He said he was very excited about that night, as am I.

Air Force One landed and it was quite a site to see, such an big plane, seemed to appear out of no where.  After a few moments, the President exited the plane and waved to the crowd.  He came down the stairs, shook the hand of, and spoke with each of the wounded officers.  He entered his limo, drove only a few feet before exiting again and approaching the crowd.  He spoke with the wives of the wounded officers who are heroes just as well for standing by their men through these tough and trying times and everyday as they put their lives on the line doing what they love.  As Trump made his way through the crowd.  I was able to shake his hand, he thanked me for my service, and told me I was pretty 🙂

The following Wednesday, my sister with the help of my mom and dad, purchased pizzas for all of the guys in the unit as a way to tell them “thank you!” for taking such good care of me.  All of the guys returned to work that day from the shooting and it was a great way to celebrate.

On Friday morning Jared and I hopped on a plane bright and early to Florida to celebrate Kayla’s Jones wedding.  Kayla and I were best friends throughout all of high school and were dang near inseparable.  Where ever one of us was the other was just a step or two behind.  We made some everlasting memories together throughout those years.  Her family had accepted me as just another one of their kids and the bond we had was amazing.  Even though Kayla now resides in Florida, miles and miles away, our friendship will last a lifetime.

We arrived at the resort where we were soon greeted my several members of the Jones/Roberts family.  Riley, Kayla’s cousin, who I used to come pick up when he was young and take to do fun things like Royals games, or bowling, or just whatever he wanted to do; welcomed me with the biggest hug.  It had been several years since I had seen him and he has grown into a fine young man.  We spent quite a bit of time together throughout the trip, which was wonderful. Soon after, Kayla arrived at the resort! It had been several years since I had seen her. We picked up right where we left off just as I expected.  It was so great to see everyone in the family again, they were much like a second family to me for several years.

Saturday was the wedding day.  I couldn’t wait to see Kayla marry the man of her dreams.  Every time Kayla spoke about Sean she simply lit up, it is very apparent she completely adores him.  I could not be more happy for her that she found her forever.  I had the pleasure of meeting Sean as well.  He was extremely nice and it was great to finally meet him.  The wedding was in a cute little church near the resort.  It was beautiful and Kayla looked absolutely stunning in her wedding dress.  The ceremony was lovely. The smiles on Sean and Kayla’s face lit the place up.  They make each other so happy.

It was time to celebrate! On to the reception! It was also very beautiful and such a great time.  The food was amazing and everyone had a great time. People danced the night away. It was so much fun! After the reception we were all able to kick back and have a few more drinks. Some of us may have had a few too many, cough cough, Jared! Knowing we had an early morning we called in a night at about 2:00 AM to head to the airport at a bright and early 5:00 AM!

The entire trip, although it was short was such a great time.  I have really missed that family and it was so great to reconnect with everyone finally.  They welcomed me with open arms and I will always be extremely close to all of them.  I even gained a few more soldiers while was there.  Tera and Dallas had shared my story with many of their friends and I was able to meet them while I was there.  Like many others have told me, they were inspired by my story and my attitude about it.  It always feels good to hear that from people.  I will never know why I was chosen to have this disease but possibly it was to inspire others to really live your life the fullest potential each and every day no matter what we may be faced with.

Monday was a big day for me, I knew I was going to have a midline placed and start Radicava infusions.  A midline is similar to a picc line.  It is a tube which is placed in a vein in my bicep.  The midline will prevent me from getting a new IV placed everyday until I am able to have a port placed in my chest.  Knowing I had the first pitch quickly approaching I asked to have the midline placed in the left bicep, unfortunately there was not an accessible vein in that arm and it had to be placed in my right arm.  Although it was painful shortly after it was placed and the following day, it will get better and I will get accustomed to it being there for the next couple of weeks.

At 1:30 on Monday I had my first infusion.  There are several mixed reviews on this drug and it is very, very new.  With a lot of unknowns about the drug, I need my prayer warriors to pray that Radicava does its intended purpose and slows down the progression of the disease. I will have an infusion everyday for the next 13 days.  Each infusion lasts approximately 90 minutes.  I have had numerous people offer to take me and sit with me, I greatly appreciate all of you! Fortunately, the infusion center is very nice! I have a nice recliner to sit in, warm blankets, a TV, and access several different snacks.  This may sound bad to everyone else, but the way I see it, things could always be worse! I have been treated exceptionally well throughout all of these appointments, I am thankful for that.

So with that being said, I must stay in the Kansas City area for at least two whole weeks! No more trips until September when I will be headed to Mexico with my sister and friends.  These two weeks will still be very exciting, I will be throwing out the first pitch at the Royals game on August 8th.  I have recently found out that even my sister and father are going to be able to attend the game.  With them living out of town and the game being in the middle of the week I did not believe they would be able to attend.  Prior to throwing out the first pitch, I was asked by Jeff Montgomery and the Fox Sports Producer to be on the Pregame show with Jeff and Joel! This portion will be televised, I am unsure if the actual first pitch will be televised or not.  Many of my friends and family will be there to witness it and I could not be more excited! I am also going to get to spend a day in Sedalia at the state fair with many family members, to watch Hank Williams Jr.

I can never thank everyone enough for the calls, the texts, prayers, and well wishes.  Knowing how much support I have keeps me moving forward every single day. Sarah’s Soldiers continue to grow and I couldn’t be more grateful.  I will be strong, I will continue to fight, and I will not back down! Love you all! Till next time…. #sarahssoldiers #strongertogether

THANK YOU!

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What a week it has been! I am extremely thankful and lucky to have such wonderful people surrounding me in my journey, battling ALS.

KCTV 5 did an outstanding job with their interview capturing what was truly a dream come true. Wearing the uniform one last time, working in the Royals dugout. If you have been unable to watch, click the link and check it out! KCTV 5 News Clip Neal Jones did an amazing job and I could not have been more pleased with how well he captured the moment and my personality. Thank you Neal! The outpouring support following the interview has been unbelievable and I thank you all very much! Sarah’s Soldiers are continuing to grow!

I was able to spend the past weekend with my sister, her husband, and my amazing nephew in St. Louis.  It was a great weekend! I love nothing more than quality time with my family.  We were able to attend a dear friend’s, father’s retirement party.  At the party, I was able to give Auggie who is 4 years old a gift bag full of KCPD goodies. Auggie loves all things police and fire. His face lit up, and it made my night.  Auggie is extremely special to me because he too is fighting, just like I am, and he is handling it like a champion.  Auggie was diagnosed with leukemia on Christmas Day 2016. I told Auggie we will soon be port pals and I will wear his ‘Aggie Super Powers’ bracelet alongside mine everyday. Auggie even convinced his dad to light off some fireworks in my honor.

On my car ride home, I was informed KCPD had two officers that had been shot and then a short time later a third.  My heart sank, I wanted to get home, I wanted to be there to help.  I am no longer physically capable of being there to fight that fight and that is a very difficult thing for me to process.  I just wanted everyone to be okay, and by the grace of God they will be. Some will take longer to heal than others but they are warriors and they will get to return.

After a busy weekend, Monday was a hard day for me. One of the hardest I have had in sometime.  I was unable to muster up any energy and knew I had a long day ahead of me.  There was a luncheon to take place later in the day, followed by dinner at Jeff Montgomery’s house later that evening.

I was fortunate to work at the North Patrol Division station for about three years alongside some amazing men and women. Captain Freed who I worked for while at NPD wanted to bring me back to North Patrol to see everyone after they all had heard the news of my diagnosis and because I know they missed seeing “smiley” around the station. Capt. Freed planned a lunch and invited everyone at the station.  I rallied through and I am very glad I did. There was a great turnout at the lunch and it was great to see everyone! At the lunch I was surprised to see an old friend Jeremy Dickstein whom I worked with at Blue Springs Police department.  He introduced me to his friend Ronnie Doumitt, who is the founder and President of a nonprofit organization called Answering the Call. Mr. Doumitt explained the organization was formed to financially assist officers and their families when medical needs such as mine arise. I was presented with a check from the organization that day! Mr. Doumitt assured me the organization was here for me and if I were to need anything in the future they would be there to lend a helping hand.  It was an honor to meet Mr. Doumitt and I am incredibly grateful for the donation he provided through his organization.

Monday evening, I was invited by Sgt. Tommy Woods to join him, his family, and Det. Dave Conchola at Jeff Montgomery’s house for a very elaborate chef prepared dinner. My brother, Jared was able to join in as well.  It was an amazing night! The dinner was incredible.  Jared was able to talk baseball with Jeff throughout the night.  I spoke with his wife, Tina, for most of the evening.  She was hilarious and I cannot wait to have a night out with her in the future! I had a blast! As a long time Royals fan, this was an amazing experience. Jeff showed us his trophy case which included his two World Series rings he allowed me to put on! Jeff and Tina were both very interested in my story and wanted to watch the new clip myself and Tommy had told them about.  Following the conclusion of the new clip, Jeff looked up and said, “I must have you on the pregame show with me.” We exchanged phone numbers and he insured me we would have me out to join him and Joel Goldberg in the near future. With the help of Tina, Jeff and George Brett we are shooting for joining the pregame show and throwing out the first pitch when the St.Louis Cardinals come to town on Sunday, August 12.

Tuesday, was going to be another busy day! I felt much better on Tuesday morning. I had to get ready for a photo shoot! At North Patrol I had the pleasure of working with Sgt. Bobby Wisdom.  Although he worked dog watch and I was on PMs we would always contact each other and share information about the bad guys in the area. His wife Brandi, is a professional photographer.  She was inspired by my story and wanted to do a photo shoot completely free of charge! With the help of another Officer and dear friend Deb Browning we were able to capture some great pictures and it was an amazing time.  Those girls really knew how to make me laugh!

Tuesday evening, I was invited to attend a kickoff party for the Walk to Defeat ALS.  I was accompanied by coworker and great friend Christina Ludwig.  I had the pleasure of meeting most of the ladies involved with the ALS Association chapter here in Kansas City.  They have welcomed me in since day one with open arms. Answering any and all questions my family or I have had and assisting in every way possible even if that just means a phone call to check and see how I am doing. They have been extremely uplifting and helpful to myself and my family. Thank you all!

I also had the pleasure of having dinner with my stepson, Michael, and his wife, Madi that evening.  I have not had the opportunity to see them for several weeks due to my vacation and Madi acing her Chemistry class in a whopping five weeks! You go girl! Madi is currently seven months pregnant. Meaning I will become a grandma at the ripe age of, 29 or possibly 30 (depending on when he makes his debut)! I can’t wait to meet the little guy and I am beyond excited for those two as they welcome their little peanut into the world.

The clinical trial went well and I believe my overall strength numbers were higher than they were at the KU Clinic the month prior! Very great news! I do have moments were it is harder for me to breathe and I am becoming more acclimated to the breathing machine, slowly but surely.

This past week has been incredibly busy and I am very grateful for all of you that are supporting me through this journey.  I would have never imagined I would be in a position like this, but it’s reality for me now. Everyone has had a part in making my first wishes come true. “Make me smile and laugh along the way” I have smiled and laughed all day, everyday and several times my cheeks have hurt from laughing so much. I can not express how thankful I am for each and every one of you who support me in this fight. We are soldiers and we will get through this together. I ask you to join me on Friday night at the Sandbox (509 NW Barry Rd) from 4-7 PM it promises to be a good time! I will have the bracelets there an order form for the T-Shirts. In addition to the gun raffle there will be other items for a silent auction as well.

As for the next adventures, Florida, Cancun, St. Thomas, back to the bay….  the list will continue to grow 🙂

Till next time! Love you all! Sarah #Sarah’sSoldiers #strongertogether #noonefightsalone

I am home!

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!

Sarah’s ARMY – Battling ALS – We will find a cure!!

“Every disease has its first survivor, why can’t it be me!”Sarah Nauser Olsen

If you are like me, the last time ALS was on your radar, it was related to the passing of a celebrity, or the big headliner, THE ALS ICE BUCKET CHALLENGE. On 05-31-2018 ALS suddenly became much more personal to the all of us. Im sure many of us experienced the same initial gut wrenching feeling, it hit like a ton of bricks, but these bricks were different…more painful, more personal, more deep than anything I had ever experienced.  But after dealing with those initial feelings as much as that’s possible, you begin to ask yourself “Alright, what can and do I need to do to help Sarah?”. I am no expert on the subject of ALS, but I assume as most did that are reading this, you educated and digested as much as possible on this disease. For those that haven’t, ALS is also known as Lou Gehrig’s Disease, or Motor Neuron Disease (MRN). Briefly into my readings, I realized for the PALS (person w/ ALS), the number one order of business does not come from our pocket book, but from within ourselves, and the good lord above.  No matter how hard things become we must stick together, and above all else STAY POSITIVE in the process! In my estimation, 99% of patients that ultimately received a positive ALS diagnosis (Dx), attributed the power of positivity and prayer to not only a better quality of life, but many PALS believe when those around them remained positive throughout the term of care, they lived a longer post Dx life! The will to live is powerful, and lets not ever forget that! POSITIVITY, ALWAYS FRONT AND CENTER!

Out of respect for Sarah’s privacy, as of right now this “blog” should only be shared with your eyes, which includes family and close friends of Sarah’s choosing. I may refer to us as a group at times being Sarah’s ARMY, an organized force of #SarahsSoldiers equipped for fighting together! Anyone reading this is one of #SarahsSoldiers fighting ALS alongside her in one way or another. Being her closest companions and confidents although, we need to be warriors. Warriors are of the utmost bravery, and a more experienced fighter than a soldier. Warriors only surround themselves with other warriors, and I know what my sister is made of….she is a warrior!
I plan to try and update the blog every couple weeks and after visits to KU. It looks as though about every 3 months she will see the full staff in the Neurology Dept. If there is any concerning developments as we move along, I will try to update ASAP with as much info as possible. Bare with me please, as the blog world is all new to me, and I’ve certainly never tried to tackle anything of this nature. It does seem as though the easiest route to keep everyone as up to date as possible. Sarah and Lindsey also have admin accounts to share as they please! This initial “blog” is probably much longer than any in the future, but never say never! Please do not hesitate one bit to reach out with any thoughts or ideas….Most of you have my phone number, but if not its 573-639-2329-. Im not as responsive to email, but getting better! That is kanauser@gmail.com.

Sarah’s attitude from the very beginning has been nothing short of outstanding. I’m sure those of you that have FB or have come in contact via other medians can attest. She is a Nauser, so we know she is stubborn and will fight with all she has got. Her resolve is simply amazing. I myself am constantly taking mental notes of her actions, she’s living the right way!:) Following her initial Dx at the University of Kansas (BOOOOOO) Medical Centers, Neurology Dept., she has since had her first follow up appointment 06-11-2018 as a PALS. From my understanding the first appointment is kind of a meet and greet, with somewhat of a workshop. I was not present at this appt, my mother Jamie and sister Lindsey accompanied her. I do know she was given a resources book from the ALS Mid America Chapter, and she met with numerous professionals that will be assisting at different times in her care. Aside from the Docs, Sarah has a physical therapist, respiratory therapist, and occupational therapist all within the Neurology Dept at KU Med. She also has a speech pathologist, dietician, and a social worker available to her as needed.

As we progress there will be challenges faced that don’t always pan out the way we would like. I’ve learned real quick, that doesn’t necessarily mean give up hope if things don’t go our way on whatever it may be. I will give and example shortly. The Ice Bucket Challenge was extremely successful fundraiser that has brought numerous research developments to the table in a very short matter of time. Where this directly affects Sarah is through clinical research studies now being carried out. There is currently only one FDA approved drug for ALS to increase longevity of life…and its estimated to only add an average of somewhere in the ballpark of 3 months to a PALS life. But 3 months is 3 months, and quite frankly if it was only 3 days, we will all take whatever it is we can get!  She did start that drug (riluzole) from day one of Dx, along with another prescription that she tells me has helped her sleeping tremendously. Sarah was hopeful going into her first appointment to participate in one particular research study that we had heard some 1st hand accounts of, with promising results (once again, only slows progression). Unfortunately Sarah did not qualify for this study based off of her Forced Vital Capacity (FVC) score she had registered earlier in the day. The FVC will not improve if an accurate reading was achieved that day. To keep it simple, the FVC is a breathing test conducted to gauge respiratory function. Its one of numerous test administered at every visit to KU Med…monitoring those test scores is the best way to try and keep a thumb on the progression of ALS in the PALS. As with all other functions diminished or lost, they do not come back nor improve.

All is not lost for future clinical trials, these decisions can be appealed and overturned at anytime. This specific study was for Radicava. As with everything else that ALS touches, there are mixed reviews and results abound! Some given the drug notice their progression speed up almost instantly. We must believe that God has the best possible path on this journey already carved out for Sarah! No Radicava, No Big Deal!! IF YOU HAVE SEEN ONE CASE OF ALS, YOU HAVE ONLY SEEN ONE CASE OF ALS. NO TWO PALS ARE EVER THE SAME. With that being said, do not be alarmed that her breathing disqualified her from any trials in the first appointment post Dx. For all we know, three years from now her FVC scores could remain the same and the disease has slowed and moved on to affect other areas. It is truly one day at a time.

Sarah did receive her first device Saturday due to her FVC score. Shes not a fan, but who would be. Its a ventilation device known as the Trilogy machine. In the coming weeks she will get more acclimated with it, but for now she has “vacations to attend to” 🙂 No one knows her body and how she feels better than herself, so in due time she will begin to use it throughout the day as needed and at night regularly. The breathing specialist was not alarmed at Sarah’s reluctance to use the machine right now, so all is well.

So speaking of those vacations!!!! She has remained extremely busy, and appears to be fairing more than well. As we speak Sarah is in Las Vegas. She let me know everything went very smoothly on the flight, after even somewhat having concerns herself of what 30,000 in the air may feel like. She also walked 5.5 miles, on very little rest, the first day they arrived with no hiccups. Experienced some soreness, but nothing more. That is wonderful news! Five and a half miles would likely make the majority of us experience some discomfort! I’m sure Sarah will log on here and fill everyone in with the finer details of her trips when she gets some down time…but keep knocking out that Bucket List girl.

Prior to Vegas, she was taken up in the KCPD helicopter to take the city in from the sky. She made my week when the low flying helicopter I heard in the distance gradually grew louder, then flew directly over me! The prior weekend Sarah joined family and friends at Pomme De Terre Lake. All the siblings have been making that trip with our Mom since Sarah was in diapers! She commented that it was very neat to be back after some years away. I know she also took in some nostalgia (Oceola Cheese Factory) and plenty of sun rays…although it was hot as Hades I hear! None the less, she had a climate controlled camper to crawl into at night, and made many more memories!

A few days after arriving back from Vegas, its to the beach we go! The Nauser bunch will all be in attendance at once for like the first time ever. We will be sure to take many photos and share as much as possible. The awesome General, aka Aunt Leslie, has arranged for a professional photographer to snap some photos on the beach, including a strict dress code. Believe it or not, I already got the green polo I was instructed to. I assume there will be a public website to purchase prints off of. I will share the link when it becomes available.  Going to make some memories, “live it up”, and put a dent in the crab population!!

Switching gears one more time…back to the part where we all want to do whatever we can to help Sarah out. Thanks to a wonderful woman, Libby Powers, she hit the ground running on a GoFundMe page as soon as Sarah made her Dx public. After less than a weeks time the first goal had been eclipsed. Thanks to any of you that shared the post, and please continue to do so from time to time. Once again, thanks a bunch Libby. It is just a start though. It’s estimated that care for the average PALS is north of $200,000 a year. This is obviously something that cannot be done alone. The goal is to stay ahead of the progression with any products or services already in place before they are needed. There are a few other fundraising efforts already off the ground that I know of. Thank you to Matt and Amber Keck for putting together a comedy show with a silent auction. More details to follow on that. The KCPD has a raffle going for a firearm, with all proceeds going to Sarah. I will post a photo with information on how to purchase those tickets.  Any ideas you all may have, please bring to light. I’m sure a golf tournament will eventually come as well. This cant be tackled by any of us alone, and there are scores of people wanting to help, just not sure how. Matt Taylor and Libby Powers have loads of fundraising experience and knowledge, so hit them up!!! I know we can all achieve this together, so the “financial burden” you often hear of can be non existent….and I don’t mean from your own pockets unless able. Its also pretty damn fun to get together with friends and family to raise money for such a cause. So lets put our heads together, have some fun, and make some awesome lifelong memories along the way!

Lastly we have the ALS Mid America Chapter Walk @ Kauffman Oct. 6th. From initial chats, and already established FaceBook pages, I think #SarahsSoldiers is going to have one heck of a turnout…and its still months away. I can tell you this right here means a tremendous deal to Sarah. She has that competitive blood pumping through her veins on this one. Its our goal to not only raise enough funds to earn the top team initiative, we want to be the top team overall! O yea…that’s also not good enough, she knows we can raise more funds than any team in the history of the ALS Mid America Chapter walk. Sign everyone up that you can, and make sure they show up for the celebration! I will provide sign up details closer to the time.  I think its awesome that in a time like this, Sarah is not just focused on herself and Dx, but for the future PALS, with the hopes that we can find the key to UNLOCK ALS for good!

Once again, sorry its a bit lengthy, I wanted to try and get everyone up to speed as much as possible.  She has a bucket list to conquer, and the young woman cant do that with a phone attached at the ear all day. So get after it Sarah, all of your soldiers are in this together, and that makes one hell of a formidable ARMY.

FightAgainstALS

“Faith, hope, and love are some good things he gave us, but the greatest is love!”