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On this page you can find updates about the site and Lindsay's story as it continues. 

Updates

New dawn. New day.

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.”

May 8, 2015:

 

Special update from Lindsay-

 

In the fall of 2008, I began my college career. I wanted to be a nurse and wanted to get through college as fast as I possibly could. I was taking 18 hours a semester to speed up the process. I was working two jobs and living at home to save up as much money as I could for nursing school.

 

In the fall of 2009, I lost my hearing and balance one night after dinner and it was attributed to a virus. They called it “back luck” or “a lightning strike”.

 

In July of 2010, I completed my AA but still had one more class to take before I was eligible for nursing school. I enrolled in an online Statistics class so that I could work almost full time between Starbucks and a local Mizzou/Royals sports store to keep earning money so I wouldn’t have to work during nursing school. I was also selected to be a volunteer at Children’s Mercy twice a week.

 

In November of 2010, we found out the “lightning strike” was actually a tumor that had now doubled in size and affected much more than just my hearing. The next couple months were a blur of doctors appointments and trying to decide between surgery and radiation. Still, I enrolled for Spring of 2011. I was going to be a nurse, damn it.

 

The surgery was scheduled for February 1, 2011. We would have to fly to Los Angeles a week early to get labs done, perform an embolization, etc. I thought maybe I could still manage to be a student but I was wrong. My hospital stay was supposed to be “3-4 days” and then I could be released to the hotel and finally return home. I ended up being in ICU for 6 days, and then on the med surg floor for another two and a half weeks. I ended up having three surgeries during my stay instead of one, and could barely talk, breathe, walk more than 50 feet at a time, and no food or liquid would go down at all.

 

We returned home and I spent that “semester” trying to heal. Every day brought new challenges and I lost 15 pounds. The local hospitals told me I would never eat again and so I accepted this new normal and planned to start school again in the fall. Then, in June, we got a phone call from another doctor in Los Angeles, telling me he could get me eating and drinking again if I agreed to come out there and do physical therapy every day. I couldn’t enroll for school because we had no idea how long this would take.

 

The speech pathologist out there worked so hard to “fix” me. She was always coming up with new ideas to strengthen the side of my throat that wasn’t paralyzed. She gave me 10 exercises to do, 10 times each, 6 times a day. Exactly four weeks after we started therapy, I swallowed a liquid for the first time. Then chips. Then sliced peaches. Then coffee. Then pizza. It wasn’t a miracle- it was the dedication and brilliance of my speech pathologist and my yearning to be normal again. I wanted to be her. I wanted to give people their lives back when everyone else had given up on them. I was going to be a Speech Pathologist.

 

Then Cletus came back.

 

It was too risky to do surgery again, so it had to be radiated. They couldn’t do it until September. Great. Another semester off school. Radiation knocked me off my feet way more than surgery did. Vomiting until there was blood. Fatigue like I’ve never known. Spasms on the right side of my face. I lost my taste buds. Then one day I sat down to eat lunch and lost consciousness. It was one thing after another.

 

Enrollment for January came and went and I was too weak to go back yet. During 2012 and the beginning of 2013, I was seeing a psychologist because I was so depressed about not being able to go back to school and being too sick to work. I had worked my butt off saving money for nursing school, and now I had to use it on food and clothes and bills because there was no more coming in.

 

I started to feel normal again in the spring of 2013 and decided I couldn’t wait any longer to go back to school. I enrolled at the University of Central Missouri and signed up for 3 summer classes. I was euphoric. My first lecture class was Anatomy of Speech and Swallowing. This was my passion. I got an A in all 3 classes and the day after summer school ended, I was headed to D.C. to learn more about this genetic mutation that we had learned was in me, my dad, and my sister.

 

The day after my MRIs, the nurse asked us to meet her in the lobby of the hospital. Still not sure why we couldn’t have met somewhere more private...Anyway, she started reading the report and naming off all these places where “lesions” had been found and I finally interrupted her to say, “Are you telling me I have cancer?” She replied, “Well, yeah.” I don’t think I heard anything else after that.

 

They made us fly back out a month later, my first week of fall classes, and told me I needed to start chemo ASAP and that I would be too sick to go to school full time. Somewhere through all the tears, I told them I wasn’t agreeing to anything that would keep me from school. They told me with the progression of my disease, I would have about 3 years left. I didn’t care. I wanted to help people.

 

Fast forward to this year. Between last semester and this semester, I can’t even count how many times I’ve been to the emergency room for one reason or another. Usually pain. Any of you who have ever gone to the ER know it’s not an in-and-out thing. It takes hours. And the next day you’re exhausted. But I went to class every time I could physically do it. I learned quickly that I can’t count on the last minute to study, because sometimes I would be very sick at night and have a test the next morning. I can’t pull all-nighters because my body is fighting too hard already and needs all the rest it can get. Sometimes I still wouldn’t feel well the next day and hope my teachers didn’t notice when I ran out of the classroom to throw up.

 

Every.single.day was a challenge but I’m finally graduating on Saturday with a Bachelors of Science in Speech-Language Pathology and a 3.8 GPA. I was accepted to Rockhurst University for graduate school and plan to do my internship in Los Angeles under the supervision of the woman who inspired me to do this in the first place. I know what it’s like to be the patient and now I have the knowledge to be the specialist. It took me so long to get here but, because of that, I have never felt more proud of myself. Thank you to everyone who has supported me through this journey. It really does take an army.

 

 

Peaks and Valleys.

March 1, 2016:

 

Hello, friends.

 

I want to start by apologizing for not updating more frequently. I found that with Facebook, I can update people almost as soon as I leave the doctor so it just became my lazy, quick way of reporting my health status. However, I was told this website is the better route so I will be better about writing on here, I promise!

 

I’ll give you a quick recap of my life since the last update:

 

In May, I went to Hawaii with Ryan for ten days after graduation and it was the most relaxing ten days of my entire life. There are no words for how beautiful and enchanting Maui is. It really changes your heart. You learn to slow down, enjoy the scenery, enjoy the food, enjoy conversation. I highly recommend that anyone who can travel, travel to Maui someday.

 

In the summer, I went to Vegas and Chicago with friends. Never EVER go to Vegas in the summer months. My goodness. Maybe it would be tolerable for a healthy person, but I had a really hard time breathing and felt nauseated from the heat during the day. Chicago was the total opposite. I went to see friends and watch Jason Motte pitch for the Cubs. The game was on July 7th, yes July, and we were absolutely freezing. I don’t even think we made it all the way through the game! We had to bring coats and gloves and even bought nachos and a pretzel just because we wanted the warm cheese on our laps! Chicago is my favorite city so it was still a wonderful trip, despite the unseasonable cold.

 

In July, I also moved in with Ryan, my boyfriend mentioned in earlier posts. In August, I began the grad program at Rockhurst for a Masters in Speech-Language Pathology. It was a big change from living in Warrensburg and going to a public school but I loved learning at the graduate level. My teachers are all young and up-to-date on the newest therapy techniques and technologies. I miss my UCM professors and friends dearly, but Rockhurst is a lot closer to where my doctors are which proved to be very convenient as the semester progressed. I was so happy living with someone I loved and going to school in the city.

 

In October, I had a PET scan to rule out a new tumor on my adrenal gland because I had become so sick with symptoms that matched that of cancer on the adrenals. There were no new locations, but MRIs in November revealed the existing tumors were growing rapidly. The tumor in my neck beside my carotid has tripled in size, and some of my vertebra were now completely encased in tumor. The summary at the end of each paragraph in the reports said “concerning progression of metastatic disease.” By the second week of November, I had to stop going to school. I had missed so many days from throwing up or being in pain, and it was getting  far too difficult to make it to class anymore. My teachers had a meeting and decided to freeze my grades as they were, and not require me to take finals or complete the final projects. It was 1,000 pounds of weight off my shoulders and I could not be more grateful.

 

We made an appointment with the radiation oncologist that treated Cletus (that was the name I gave my original tumor in my head for those of you who didn’t know me then) and he agreed action needed to be taken. He also agreed radiation would be better than surgery or chemo. I began treatment on December 9th. The night of December 8th was one of the hardest of my entire life. My relationship with Ryan ended and I had to move home. I loved him more than I could ever say, but cancer is not an easy thing to deal with for the patient, and it’s even harder for the caretaker. There’s a lot of emotions to process and sometimes it’s just easier to walk away while you can. Unfortunately for me, moving home meant moving 30 miles further from the hospital, and I had to arrange rides to treatment last minute. But of course, I have wonderful friends and family who all willingly volunteered to do whatever they could to help. Two of my best friends even drove through the night to Kansas City from Chicago to take me to treatment, bring me flowers, and let me cry on their shoulders.

 

The radiation made me very sick, as did the heartache of the break-up. I had to come in two hours before each treatment and receive IV medicine to help with the nausea and keep myself hydrated because I was throwing up so much. My immune system was and remains very weak from the recovery and the emotional pain. I get migraines when I cry for reasons we still cannot figure out, so every night I was either sick from treatment or from crying! it was a rough few weeks.

 

The next step is surgery. I took this semester off school to focus on getting stronger and having surgery to remove the tumor in my neck that seems to be larger every day. I had to delay my bachelors and now I have to delay my Masters. It really breaks my heart to keep having my time as a professional reduced because I can’t make it through school. Because this cancer is rare and it behaviors are not widely understood, we are searching for the right person to remove it. We all know I’m more prone to complications than anyone else in the entire world so we not only have to find someone who can perform the surgery, but also someone who will be ready to address any complications or emergencies that arise afterwards.

 

We had a consult with a surgeon at the Mayo Clinic, we’ve been discussing it with KU Med, and we leave for NIH on Thursday. NIH is absolutely #1 on my list if I could pick a place to have surgery, but my department had their funding slashed and they can not do surgeries anymore. So, we will have to get in with an ENT or general surgeon while we are there. KU and Mayo had completely different approaches to the operation. KU wants to just numb the area and take it out in the office…Mayo Clinic wants to take out the tumor and everything in the surrounding area to prevent metastasis. Complications for that would include: lymphedema, lack of function in my right arm and shoulder, and a possible arrhythmia in my heart caused by manipulation of the carotid/release of adrenaline that could lead to death on the table. This kind of tumor can secrete hormones, one of those being adrenaline and when they are operated on, fatal amounts can be released into the body.

 

I am so ready to get that monster out of my neck but also so scared, knowing that complications will undoubtedly arise. A few days after radiation began, we made the decision to insert a PICC line into my arm. This is when they thread a catheter through your right arm to your heart, and it acts as an IV for long periods of time so you don’t have to get stuck with a needle every day. The procedure was going well, and then about half-way through I noticed I was having pain and pressure in my neck. I was looking at my mom instead of my arm because it grosses me out and I told her “Ouch they must be in my neck, right? I can feel it.”  The man inserting the line said “No we’re not in your neck. Maybe you’re just having pain from turning your head.” I let it go because I figured he knew better than I did, though I didn’t buy the neck-turning explanation. The procedure ended and it was time to flush the line (this is when they insert sodium chloride through the line to clean it out) and do an X-ray to confirm correct placement. Instead of doing the X-ray first, they flushed the line first and within 30 seconds I could not see and could not breathe. None of my breaths were yielding anything and I was yelling for help. The two nurses had taken us to a part of the hospital that was not used, so they didn’t know how to call for help. My mom was telling them to call a Code Blue and they did not know where the crash cart was or  where to direct rapid response to or anything. It was chaos. I woke up to my mom standing over me and oxygen on my face, thanks to my mother. She saw the oxygen and knew how to turn it on and place it on me. Rapid response finally showed up but they said they are not allowed to do resuscitations on outpatients because they don’t know the wishes. It was all just terrible and I spent the next few hours in the ER before my radiation treatment that day. They told me I could go home but I didn’t want to extend the treatment any further into December than I had to so I went. We have been in contact with administration at KU and they have made several appropriate changes so that this never happens again. It was the scariest day of my life and my mom’s life. My dad had forgotten his phone so all the frantic calls being made to him went unanswered. My poor mom watched her daughter almost die and then was alone in the ER. It was a terrible day and I wouldn’t wish the feeling of suffocation on my worst enemy.

 

Thank you to everyone who has been supportive of me during this very hard time. However you have helped, it has not gone unnoticed. Prayers, packages, texts, rides to the hospital, phone calls, donations, donation of airline miles, even reaching out to my parents and sister to support them, are all ways we have been touched by kindness in the last few months. I could never thank you all enough. Just please know, I would not still be here without you. That is the truth. I love you all so much and you have been such a positive, encouraging, wonderful gift that’s come out of such a dark situation. I will update again after we return from NIH and have more information on the cancer and the surgery.

 

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

 

<3 Rindsay

 

 

 

 

April 16th, 2015

 

From Rinds:

 

"So, this update is just more me opening up my heart a bit. There will be one coming soon with my list of surgeries/radiation for the summer.

I see a psychologist every Monday morning who specializes in helping people cope with all that accompanies a chronic illness. It almost affects your mind more than your body after a while. This past Monday, she told me she's been studying the people who are "privileged" in society. Males, Caucasians, heterosexuals, etc. She also believes healthy individuals are part of the privileged. They don't have to deal with the stress of an uncertain future in regards to mortality, medical bills, chronic pain, and the every day emotions of being sick.

Tomorrow morning, I leave for Boston with my boyfriend's family. I have never been there and was so excited to be extended an invitation. As the trip has grown nearer, I've been anxious and scared and already dealing with the guilt I will undoubtedly feel at some point when I can't keep up. I'm so scared I'll get a headache, have a reaction, anything that will inconvenience them in any way or hinder my experience. Don't get me wrong, they are so loving and have extended me care and compassion since we met, even bought tickets to a Red Sox game so I can cross off another stadium- these are just things you do to yourself, mentally, when you're sick.

For those of you who have never eaten around me, I take a very long time to eat because the whole right side of my throat is paralyzed so it's a delicate process to prevent choking. Because it requires so much labor, I get exhausted so quickly and fatigue can lead to choking. Whether I'm on a date, with a friend, or trying to impress my boyfriend's wonderful parents, it is such an awful feeling to leave 80% of my meal on the plate that someone else paid for.  

In addition to all this, I have to find a hospital near the hotel that accepts my health insurance before we arrive. I've gotten off a plane and ran right into a bathroom to vomit more than once because airplane seats are so hard on my neck and back (tumors' fault).

Anyway, I'm just using my experience as an example. There are people that have to worry about wheel chair access, dialysis, oxygen, nausea with movement, infection from germs because of a suppressed immune system, and other things you would never think about until it happened to you.

I'm not sharing this to guilt anyone who is healthy. I'm sharing it because a lot of people in this country are unhappy, and I think realizing all the reasons you have to be happy can really help. Gratitude is such an important feeling to have in your mind. And that's how I get through things like this trip. "You know what, Linds? You might get sick. But you're gonna see The Green Monster and the Boston Harbor and spend time with really amazing people who aren't gonna judge you or make you feel bad if something happens."

On one of my trips to NIH, a man was there with his ex-wife who had remarried, but was the only person he had to accompany him. I'm so lucky for the things I still have, even though cancer has stolen a lot.

I urge you to do the same when your anxiety seems too much. Take a breath and think about what you have instead of what you don't. It helps. I promise.

 


Love you all."

 

 

Gratitude.

 

 


 

-Rose Kennedy


 



            

"Birds sing after a storm. Why shouldn't people feel as free to delight in whatever sunlight remains to them?"

 

 

Hope.

April 7th, 2015:

 

Hello friends,

 

Here is a new update from Lindsay. Thank you for all of your continued support and prayers. Also a big thank you to Lindsay for taking the time to update us with what is going on in her life :)

 

"Spring is here! This is my favorite season because it means new life for so many things. Easter, of course, promises us that death cannot win. Flowers begin to bloom again, leaves return to naked trees, and box scores return to our newspapers as healthy sluggers begin a new season.

 

For me, Spring means a lot of things this time around. I am graduating on May 9th with a degree in Speech Pathology. I have been accepted to two wonderful graduate schools to further my training. I am traveling to Boston to watch my boyfriend’s sister, Caitlin, run 26.2 miles. I am also traveling to Hawaii to celebrate my graduation and Ryan’s employment offers from multiple police departments.

 

BUT. The thing I am most excited for, is to begin the medicine prescribed to me by the headache specialist at Mayo Clinic. I have been struggling with migraines several times a week since last fall. It has caused so much stress, depression, drama with the ER, lots of negative things. I am at the point where I can’t even make plans for the evening because I don’t know how I’ll be feeling. The migraines make me vomit continuously and the pain is debilitating so there’s no “pushing through it” once they begin. Sometimes, the only answer is medicine through an IV because anything I take by mouth will be thrown back up. I can’t ride it out because my swallowing muscles are so weak from the first tumor that I easily aspirate, and getting stomach acid in your lungs can be fatal.

 

Emergency Room doctors can either be your best friend or your worst enemy. Some acknowledge that my cancer is above their level of expertise, so they ask me to explain it to them and they give me whatever meds I need to get better. Some think I’m just there for drugs so they don’t want to help unless I get a CT scan and can prove there’s a tumor there. A CT scan is the equivalent of three years of environmental pollution or 50 chest X-rays. I’ve had my max dose of radiation for life so when I tell them no, they call me non-compliant and refuse to help. It is so offensive, insulting, heartbreaking, when your whole life revolves around your disease and there’s people who don’t believe you. Sometimes I feel like they would take me more seriously if I didn’t have hair. Chemo is an absolute last resort for my type of cancer. It offers no cure, and my doctors have agreed my body is too weak to withstand the treatment anyway. Anyway, fighting with them is one of the reasons I was so desperate for help with the headaches.

 

Tonight, I will begin the medicine that should prevent these from happening all together. Instead of chasing the pain once it begins, this should stop it from ever starting. I had to ween off my anti-depressant before I started this because the two meds together would clash and cause serious problems. By the way, if you or someone you love is taking an anti-depressant and wants/needs to get off it, please taper off slowly. It is a very delicate process that can have devastating results if not done properly. I tried to quit mine cold-turkey because I was so excited to stop the headaches, but I was vomiting, sweating, freezing, laughing for no reason, crying for no reason, and having serious thoughts of suicide. You’re not crazy and neither am I, your brain just can’t handle that kind of adjustment so rapidly.

 

I am hopeful that this new medicine will work and I can stop balancing my homework with my pain. Thank you for your support and love. And thank you to those who have donated and make trips like the one to Mayo possible for us."

 

“To plant a garden is to believe in tomorrow.” Audrey Hepburn

 

 

 

 

December 30th, 2014:

 

Here is a new update from Lindsay-

 

"Hello, Friends.

 

I hope you’re all having a wonderful holiday season. I know Christmas can be a time of immense joy or deep pain. My heart goes out to those who are spending their first Christmas without a loved one, those who are spending it alone, overseas, or financially struggling to buy gifts and pay the bills.

 

As far as my health goes, it kind of depends on the hour. The tumors, themselves, are stable, but my migraines increased to two-three a week. This made the last couple months of school incredibly difficult. I would spend a night in the ER and try to make it to class the next day. Sometimes I was too exhausted and had to stay home and rest. Then, I would get behind on school work, my stress would increase, and so would the migraines. It was a vicious cycle that caused way too many tears and pleading with teachers to give me more time. However, I ended up with five As and two Bs. I suppose that’s something to be proud of given more of my time was spent in pain than studying.

 

The day after the semester ended, we saw an oncology pain specialist who realized three of the medicines I was taking in the morning were releasing too much serotonin at once. A huge side effect of this is, of course, headaches. We canceled one med, split the other in half, and switched the third. This has helped greatly and, in addition to the stress from school being over, I’ve only had two headaches in the last two weeks. Little victories are victories, nonetheless.

 

We have decided to visit the Mayo Clinic over my spring break in hopes of a better treatment plan. The doctors in DC are brilliant, however, they are so busy that it’s hard to get much guidance unless you’re standing right in front of them. We have a lot of faith in the Mayo Clinic to care for me and my case and come up with a way to keep this tumors from growing. They also offer proton radiation at the Mayo which inflicts less damage to the body. The tumor on my lower spine causes me pain and weakness and radiating it could relieve a lot of that.

 

Thank you to everyone who continues to pray for my family and me. This cancer has had an effect on all of us, everyday, and I don’t know what we would do without you. Happy, Happy Holidays.

 

                  

                 “He said to her, ‘Daughter, your faith has healed you. Go in peace and be freed from your suffering.’” Mark 5:34"

Victories.


 

Scan Time.

October 16th, 2014:

 

Thank you for continuing to take the time to check in on Lindsay. It makes it much easier on her when she can post here and have everyone read it, instead of updating everyone individually. Although she would love to be able to do that, her busy schedule prevents that sometimes. Also a big thank you to Lindsay for keeping us updated. It is wonderful that she takes the time to write these messages for us. We are also working on upcoming events for Lindsay and ordering more "Rindsay's Army" bracelets in youth sizes!! Stay tuned for more information. Below you will find her most recent update.

 

 

"Anyone who has ever had cancer or had a cancer patient in their family knows the anxiety that accompanies “scan time”. Whether you’ve been stable for 30 years or 30 days, there is always the fear of what the doctor will say when the phone finally rings.

 

My dad has not been feeling well, so last Saturday, he had two MRIs to check up on the tumors. The cancer is stable but they did discover an abdominal aortic aneurysm. It may have happened because of his surgery last year to remove the tumor that was growing from his pancreas up towards his heart. We are not sure yet what the plan is to treat this.

 

I will be having a PET scan tomorrow morning and two MRIs, as well as blood work next Friday. The hospital I usually get scanned at in Maryland is a government hospital who had their funding cut for the year and cannot see me until after the new year. I was hoping we could wait until then but the specialists felt strongly that I be scanned in the mean time because of the nature of my disease. The stress gets so overwhelming as the scan creeps closer that It’s hard to tell if I’m actually experiencing new symptoms or just side effects of anxiety. I guess we’ll find out soon enough.

 

I’m not a very political person. However, it is hard for me to accept that they can’t afford to take care of me or fund research for a cure but, when the President comes to town (no matter the party), we spend millions on his transportation and security. Oh well. Nothing I can do about it, I suppose.

 

I always try to end on a positive note- I made it to St. Louis last Saturday for Game 1 of the NLCS. Thank you to Jason Motte for helping to make that happen and having a casual conversation with me on the field while people took our picture as we talked about cancer and baseball and babies. Thank you to Beth Hauser, Tim Wesemann, and Vicki Gibson for going above and beyond your duties as stadium ushers and blessing my family with love and bobbleheads :)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lastly, thanks to all of you for hanging in there with me every day. This semester has been very rough on me. I have been to the Emergency Room four times since the first day of school because the days are so long and hard on my body. I have a hard time staying nourished and rested and carrying my books. Most days I have to decide If I want to eat lunch or take a nap. Never time for both. Essentially I’m choosing between nausea or fatigue. The stress of the courses is also weighing on me. It’s hard to study for hours at a time when you’re on pain medicine that makes it hard to focus because of the side effects. But, without the medicine, you can’t focus because of the pain. Every day is an uphill battle but I’m grateful for the people who are giving me the push I need to get to the top. A special thank you to my roommates who missed their first Royals playoff game to sit with me in the hospital, only to come home and find out my dog had peed on BOTH of their beds! I think she knew her mama was sick. Anyway, they thought it was funny. I did not.

 

I love you all. Thank you for the love, prayers, and happy thoughts. Go Royals and Go Cards!!!

 

-Rindsay"

 


 

Nothing Ventured, Nothing Gained.

September 23rd, 2014:

 

An update from Linds-

 

Hello, beautiful friends.

 

I hope everyone had a wonderful end to their summer. I feel like this one was a lot less icky than our summers usually are. What a blessing that was.

 

I began my treatment at the end of July. The first dose caused a reaction that included trouble breathing, flushing of the face and chest, nausea... all the fun stuff. So, after a trip to the ER and several conversations with several doctors, we decided to push forward with the treatment but at a much lower dose. I’m talkin’ you can barely even see it in the syringe. My body still managed to react to this drop of medicine but, again, we decided to keep moving forward in hopes that eventually my body would get used to it.

 

Every injection would lead to an hour of sitting in front of the toilet waiting to throw up, chest tightness, and a drop in blood pressure. Then, a new symptom showed up several weeks later. The vision in my right eye started to be affected by the medicine. It was kind of a blind spot with a dash of blurriness. My doctors are stumped and decided it’s time to throw in the towel. Like I’ve said before...I’m the sole reason they have to list the side effects on medicine boxes.

 

I don’t know where we go from here. We’ve spent a year trying to find an alternative to chemo and it didn’t work out. At least I finally got the doctors to agree that chemo is not an option for me. My body would not be able to handle it. It’s nice that they have discontinued the injections because I hated feeling like crap for an hour every day but I was hopeful it would stop the tumors from growing and now we are back where we started.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

On a lighter note, I was able to visit New York City for the first time. That was second, only to Europe, on my bucket list. What a city, it is. I don’t think I’m cut out for living there because I almost got hit by a tour bus and a handful of taxis, but it is breathtaking and diverse and absolutely extraordinary. Being on top of the Empire State Building at night was a great moment to thank God for all the opportunities I have been given in the last year. It made me think of one of my favorite quotes :

                                                                                 

 

 

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.”

 

 

 

Thank you all for your continued support and love. It takes an army and I have the best in the world.    -Rindsay

365.

Friday, July 25, 2014:

 

From Rindsay-

 

“The PET scan does describe a few lesions.” That’s how I found out, one year ago today. We went to DC because three of my four immediate family members came up positive for the genetic mutation that caused Cletus. We went to get a baseline and establish care with the experts. We had no idea what was going on inside my body or my dad’s. Until that moment, we were under the impression that the first tumor was a benign, one-time, bad luck incident.

 

My world stopped spinning when I read that e-mail (yes, they sent a short email instead of calling). I fell apart in the business center at the hotel and I remember the first thing I said to my mom through the tears was “I wanted to go to school.” We asked if they would call us and they said we could meet in the morning. I did what any lunatic would do and immediately started looking up survival rates. She did what any mom would do and said, “We don’t know anything yet. Don’t panic.”

 

The next morning, the nurse coordinator asked to meet with us in the hospital lobby. She started explaining the scans and tumor sites and kept using the words “your disease burden.” I finally stopped her and said, “Are you telling me I have a cancer?” And then I didn’t really hear anything after that.

 

I couldn’t stop thinking about the family I would never have. I wanted to be a wife, a good wife, and a good mom.  How selfish it would be of me now to fall in love or have a child, only to abandon them at any time. I had just started school again. Would I even get to practice the career I am so passionate about? At the airport on the way home, my mom told a man sitting near us about my news and he said, “Well at least you can stop going to school and just travel around Europe or something.” What? I don’t want to stop going. I want to help people. This isn’t over.

 

Cancer changes everything. Up until that point, although I’ve had my fair share of pain and nausea and scary moments, I knew it would be okay in the end. Cletus wasn’t going to kill me. Wrong. People’s first reaction when I told them about the tumor was always the same : “At least it isn’t cancer. That would be way worse.”

 

It has been really sad. There have been moments of despair, of hopelessness, of anger. But there have also been moments of joy, astonishment, appreciation for life like I have never known. An appreciation for life that can only come with the threat of losing it. I travel every chance I get. I notice the colors outside. I notice the way people look at each other. I’m so grateful for every day I get in the classroom. I’m so grateful for the people I have met and the love that has reminded me there’s more good than bad in the world - we just hear about the bad more often.

 

We are so lucky, guys. We are so blessed as human beings living in this country with houses and cars and family. Why do we let the little things get to us? We don’t get much time here, some of us even less than most. Why would we waste a second of it stressed out or angry about things that can be easily resolved? Happiness is so heathy. I always have more pain during the weeks I am most stressed. Smile. Give love. Make someone laugh. Let yourself laugh. Don’t ever give up on what you want. Don’t put things off until tomorrow. Give thanks for every day you get to spend with the people you care about.

 

Cancer will take a lot from me, but it can never take my faith or my heart. Here’s to many more trips around the sun.

 

“That some good can be derived from every event is a better proposition than that everything happens for the best, which it assuredly does not.” ~James K. Feibleman

Don't let waves wash away your hopes.

Tuesday, July 8, 2014:

 

Update from Lindsay-

 

“No matter how dark the moment, love and hope are always possible.” George Chakiris

 

I truly apologize that this update is being written so long after my return from DC. For the first time since my symptoms began in 2009, I’ve kind of hit a point where I just don’t feel like talking about it. When you’re sick, it’s so in-your-face all the time. You never get a break from it. Insurance companies are constantly calling, there’s always appointments to make, appointments to cancel because more important ones came up, bills coming in the mail, hospitals calling to survey your ER experience, hospitals calling to verify insurance rather than check up on you...and that’s just the practical side. Of course, there is always the pain and nausea and weakness and daily struggle with the scale.

 

I picked up some kind of virus at the hospital up there and got down to 101 pounds. It’s hard for a healthy person my age to thrive on that small bit of reserve but, when your body is already at war, you can’t afford to starve it like that. Unfortunately, eating is my biggest challenge, and since June 13th I’ve only made it back up to 105. I am trying, though, every day.

 

In DC we found out that my spinal tumors are stable, Cletus is stable, and the one in my neck is still small enough that surgery would do more harm than good. We were asked to extend our trip by three days so that I could complete a new scan to see if I qualify for a new treatment; a treatment we thought we were going to have to move to Australia for but it is now available here.

 

Its job is to keep the tumors from growing. It will not shrink them, like chemo, but it has been proven effective in keeping them stable. It is an injection in the arm every 12 hours. There doesn’t seem to be any devastating side effects; it either works or it doesn’t. We are praying it does.

 

Thank you for continuing to support me in every way. I hope you all are having a beautiful summer. Give thanks and give love, always.

 

-Lindsay

Grateful.

Thursday, April 24, 2014:

 

Update from Rinds-

 

"I hope you all are enjoying these wonderful spring days. This is the best time of year in Missouri before it gets too hot to enjoy the outdoors.

 

I want to say a couple things before I give the update. Just some things I think about frequently that I would like to extend to you all.

 

I am a very lucky person. I have a lot to be grateful for every second of every day and sometimes when the pain gets intense and the schoolwork piles up, I start to focus on the wrong things. This past semester, it has seemed as though I have to choose between good grades or my health. I can study all night and be sick the next day or go to bed early and get a C on the test. This has been very stressful and very hard for me to deal with because last time I was a student, there were no physical restrictions. I had exercise before and after class to relieve my stress and I could study as late as I wanted and get up as early as I wanted without consequence. That being said- I am still so lucky to be a student and healthy enough to sit in a classroom. So many people do not have that luxury and I need to be more mindful of the blessing since I was one of them for two and a half years.

 

Because of this transition from carefree young adult to, basically, an old woman taking 16 credit hours, I have been overwhelmed and exhausted and I feel like I haven’t made time for a lot of you that I should have. For this, I am truly sorry. So many of you have reached out through letters or packages or whatever and I have been terrible about keeping up with thank yous- via note or in person. I hope when I return from LA this summer, I can spend some time with the people who have made time for me in their hearts.

 

Remember when I went to NIH in February? We still haven’t received a phone call or e-mail with a plan of care for the new tumor. My doctor was supposed to call today but we have yet to hear from him. It is very difficult to move forward with summer plans when he could call any day and tell me I need to have surgery or treatment. This has also added to my, and my family’s stress, as you can imagine. (I am not sure of the exact days I will be in LA for therapy this summer. That depends on whether or not I will need surgery for the new tumor.)

 

In better news- I GOT A PUPPY! Well, she’s actually 4 years old but she’ll always be a baby to me. She has done wonders for my happiness and she gets me out walking every day. I had no idea I could love something so much.

 

Take care and thank you for your continued prayers and support. I love you."

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Birds sing after a storm; why shouldn't people

feel as free to delight in whatever sunlight remains to them?”

~Rose Kennedy

Rejuvenation.

Saturday, March 30, 2014:

 

Lindsay has been quite busy lately! In the last year she has probably done more traveling than most of us do in our entire lives. Unfortunately, some of those travels have been for stressful trips to NIH for testing and procedures. Fortunately, a lot more of the traveling has been for pure enjoyment and relaxation. Lindsay wanted to tell you herself about her adventures, so below we have included her most recent update:

 

"Hello, friends. I’m so sorry for the delay in updates.

 

At the beginning of this month I went back to DC for scanning. There are a few new ones on my spine and a new tumor in one my lymph nodes. We are STILL waiting to hear from them what our plan of action should be. The great thing about NIH is that they’re the best in the country for this stuff. The bad thing is, they don’t have time to talk unless you’re standing right in front of them.

 

They told us about an oral chemo drug that’s being used on patients with this type of cancer. It sounded wonderful at first but further research has shown that it’s only working for 20% of people and there are a lot of severe side effects. Some things are just too good to be true.

 

Over my spring break, my mom and I traveled to Los Angeles. I just love that city and, mentally, I needed the week away from school. We went to a taping of the Ellen show which was an absolute blast. They really do make it a great experience for the audience. Ellen is one of the smallest adults I have ever seen in my life. She is SO tiny. If she ever went bankrupt, she could totally get a job playing Tinkerbell at Disneyland. We also went to a taping of The Price is Right which was a SIX hour ordeal. They make you arrive at noon so they can take everyone’s picture, fill out waivers, fill out tax information, and interview all the audience members. Most of the people there are trying to get picked to “Come on Down” so it’s basically six hours of people screaming and being as obnoxious as humanly possible. The actual taping started at 4 and once we were in the studio, it was a blast. They’re always making you stand up and cheer and Drew Carey was hysterical. He talks to the audience during commercial breaks and he really is so laid back and funny. He’d be a blast to hang out with.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My favorite part of the trip was the day we spent in San Diego. We went to the zoo for the first half and then drove to La Jolla Beach for the evening. There’s boulders to stand on or you can walk right down to the water. I wish I could describe to you the atmosphere and the colors of that sunset but there’s nothing I can say to do it justice. The tide got higher and the water began to crash against the rocks on which we were standing. The sky turned from blue, to yellow and pink, to red and orange. Right before the sun dropped below the water, everyone on the beach stood up. It was the coolest thing I have ever seen because, to me, it felt like they were standing up out of respect. It was such a beautiful scene created by such a perfect God that it didn’t feel right to experience it sitting down. People stopped talking. Some held each other, some kissed. Some just watched. I know there’s a lot of suffering and science in this world but if you can look at something that beautiful and warm and still not believe in God, I truly feel bad for you.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I want to thank you all, again, for the support you have shown to my family. Prayers, small messages on Facebook, cards in the mail...that’s how we get through this. You guys have been my backbone (which is good since mine is covered in cancer;) ) and I can’t thank you enough.

 

Overall, I am doing okay. Like I said, Spring Break really helped rejuvenate me, mentally and physically. I have learned that stress takes a huge toll on your immune system and it is the weeks I am most overwhelmed in school that my body suffers the most. The hardest part recently has been nourishing myself. On Monday and Wednesday, I’m in class from 8-3:15 with only 15 minutes between each class. Anyone who has ever seen me eat knows that’s pretty much only enough time for me to take one bite before I have to to put it away again. My teachers are all very sweet and I know they would allow me to eat during class but I cough a lot during meals and It’s not worth it to me to distract everyone in the room. Because of this issue, I have decided to spend the summer in LA again doing therapy everyday at USC. I have also considered placing the feeding tube back in my tummy. Obviously, that is the last thing I want to do but I’m tired of being so tired from not eating enough. It’s hard to focus on lectures when all you can think about is trying not to throw up because you’re so hungry. So, if anyone knows of a spare bedroom in Los Angeles this summer...I could sure use it :)

 

 

“When health is absent, wisdom cannot reveal itself, art cannot manifest, strength cannot fight, wealth becomes useless, and intelligence cannot be applied.” Herophilus"

Power of the Positive

Thursday, February 27, 2014:

 

Hello again soldiers,

 

It's been a busy few weeks for our Lindsay, and a very stressful weekend is nearly upon her. Not only did the total raised via the Run for Rindsay  (compliments of Keep Moving Events; photos can be found in the gallery tab of this website!) come in - a stunning $8,000, but Lindsay got to be at Disney this past weekend during the Princess Run. Though not healthy enough to attend the race itself, she did meet a young woman who ran in her honor, Suazanne Fry, and spent a few days in the park! A welcome distraction for the weekend ahead where she will be returning to D.C.'s own NIH for more full body scans regarding recent changes in her health. Lindsay wanted to make a note herself regarding it all, which you can see below, as well as on the Rindsay's Army facebook page. Please continue sharing Lindsay's story, and keep her in your thoughts and heart this weeked as we all hold our breath for the results. 

 

"Itʼs time again for my body scans. My dad will be joining me, as heʼs due for his as well. This is such a stressful time at our house and in our hearts. 

 

Recently, Iʼve developed visual disturbances in my right eye which could be a sign of tumor growth. I am also having heart palpitations, hot flashes, an increase in migraines, and anxiety which means one of the tumors has started to secrete hormones so I will need medicine to help control that. Sometimes, the right side of my tongue, throat, and lips feel like they are “asleep” which is another nerve issue probably caused by Cletus. Iʼve been choking a lot more while Iʼm eating and my pain is constant. Itʼs becoming very difficult to have normal days when Iʼm constantly, physically aware of my illness. Iʼm terrified of what the scan results will be and what they will advise. I donʼt want to start chemo. The treatments will take two years to complete and I just want to finish school without any more obstacles. I shadowed at a hospital yesterday morning and it filled me with so much joy. I just want to start helping. Iʼm tired of being the one who needs help.

 

Iʼm also worried for my dad. I want him to have a normal life, too. They will be giving us a plan this time for the tumor in his neck and scan the area where his other one was removed in the fall. Itʼs hard to go through this but itʼs harder to watch someone else go through it.

 

On a lighter note- I just returned from Disney World during their marathon weekend. I did not get to attend the actual run because it started at 5:30 AM and I had thrown up a couple times during the night but I did get to meet the woman who ran for me. Disney never disappoints. It was a wonderful distraction before this next trip that will not be as magical. I also got to spend time with Jason Motte who drove up from Spring Training to spend the day with us at EPCOT. I cannot stress enough how good of a soul that man has. Heʼs one the nicest, happiest, most generous people I have ever met. He has become a friend that I will always treasure; not because of his status, but because of his heart. Also, heʼs arranging for me to be at Opening Day in St. Louis this year which is something I have always, always wanted to do but could never quite pull the trigger. April canʼt come soon enough.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you guys for your undying support and love through all this. I donʼt know what we would do without you. Hug your loved ones tonight and give thanks to God for their health. Iʼll update this again after we return on Tuesday.

 

----Lindsay 

 

“Then he said to her, ʻDaughter, your faith has healed you. Go in peace.ʼ" Luke 8:48"

 

 

You heard her soldiers. And remember who we march for. Until next time.

Three.

Friday, January 31, 2014:

 

Hello All,

Lindsay wanted to share some memories with you regarding the anniversary of her surgery three years ago in LA. In addition, there is a small update regarding her latest MRI at the bottom of her note. Here it is:

 

"This update won't contain much information. It's more of a release for me. The third anniversary of my "big" surgery is tomorrow. It was a new beginning but also a very painful ending. It is a day I struggle with every year even though technically I only remember a couple minutes of the actual ordeal.

January 31st, I was admitted to St Vincent's hospital in Los Angeles. My embolization (a procedure in which they cut off the blood supply to the tumor) was scheduled for early morning. We checked in at 6:30 AM and they didn't end up bringing me back until 4 PM. I had to fast until it was over so you can imagine what a joy to be around I was. I remember crying in the middle of it and thanking God that this had happened to me and not my sister or my friends.

After it was over they brought me back to the hospital room and I commanded my dad to go to McDonalds and bring me a cheeseburger ASAP. I wish I would have chosen something a little fancier because that cheeseburger was the last thing I ate for seven months.

The morning of February 1, 2011 is still kind of a blur to me. I don't really remember them wheeling me back to the OR, but I remember being in there. I remember them telling my smiling mom they would take care of me and I remember looking past her and seeing my dad crying like a baby. Then, I started to cry. It's hard to know you're hurting people. It's hard when both parties want to make the pain stop for the other but there's nothing anyone can do. But I felt a lot of peace with my decision to have surgery and I was ready to get that SOB out of my head. I grabbed on to God's hand and squeezed as tight as I could for twelve hours. I will never deny that that day was harder on my parents than it was on me. I got to sleep through it. They had to pace around a waiting room and wait for phone updates that their daughter was still stable; undergoing a blood transfusion; facial nerve still in tact.

It was what that day symbolized that makes me so emotional on the anniversary. I have had to grieve the loss of my old body. My old life. I woke up with paralysis on the right side of my face, my tongue, and a collapsed lung. I was in ICU for six days, confused and in pain. Barely able to communicate. I got pneumonia so bad that they were preparing to trach me so I could breathe but they held off and I eventually caught my breath. (Fun fact: when we saw my doctor again that summer, he told us he had used my chest x-rays at a conference to show how extreme pneumonia can get.)

Eight days later, they decided to do a vocal cord surgery. I had to stay awake for this so I could talk to them during the procedure. It didn't work. Two days after that, they decided it was necessary for me to have a feeding tube put in place. I don't think I really grasped what that meant at the time. You're just trying to survive. You can't afford emotions making you weaker. Because of my collapsed lung and pneumonia, I wasn't given anesthesia while they cut open my stomach and placed the tube. Hands down, the worst pain I will ever experience in my life. I remember trying to eat jello. That was the first time I cried. They kept telling me to try harder. Like I just wasn't giving it my best effort. Didn't they know I wanted it to go down? I was weak and hungry and desperate and scared. But I coughed it up every time. The feeding tube became my new lifeline.

Almost a month later, I came home and my new life as a 5 ft 3 infant began. I needed help being fed and walking, I slept in a hospital bed we had delivered to our house. I couldn't go out with friends. I couldn't drive. I had migraines all the time. I threw up every day. I lost weight I couldn't afford to lose. I had to give up the spring break trip I had been planning with my friends. I had to have another surgery on my throat. No therapy was working to get me eating again. They told me I would just keep getting pneumonia until I died from it. Thank God a speech pathologist in California eventually saved me from that. The worst moments weren't anything that was happening to me, but always seeing my parents upset or scared or feeling helpless.

I'm sorry this seems so dark and negative. But, I would never take back what has happened and what I've learned and the people I have met because of it. The way I look at the world can only come from eyes that have been told they might not ever see it again. It's a beautiful, tragic existence. I do wish I could be the old Lindsay again for just 24 hours. I wish I could have a day without pain and without nausea and without my clothes being baggy. Oh goodness, now I'm crying in Starbucks. Forgive me. Anyway. I guess that makes me human, right? Nobody enjoys "suffering" every day. But it does give you one tough heart and I hope I get to use it on the world someday.

 

Just... Thank you all for everything. Truly. Your support and prayers are better than any medicine. I love each and every one of you.

In terms of an actual update:
 

We are still trying to decide where to have radiation done and which procedure to use. My spinal cord is pretty important to me so we're trying to keep it safe :) I had a few scans done to see if my tumors would respond to a new medicine they have that has been very effective at keeping cancer "asleep". It's been working for people with this disease for up to seven years. We were very hopeful but, unfortunately, my tumors did not respond. We return to NIH on February 27th and hopefully they will have some other ideas for us. My dad will be joining me on that trip so that he can be scanned as well and see if/how much his tumors have grown.

 

Lastly, I had an MRI yesterday for my upper back. The MRI mentioned in the last update was for the bottom half of my spine. They found two new tumors on this one. So, three new ones in all since November. Not great news but it could always be worse. 

--- Lindsay"

New Year, New News.

Wednesday, January 22, 2014:

 

Hello Soliders!

The new year has started and Rindsay's Army has already accomplished even more for our princess, Rindsay.

The Run for Rindsay 5K was a huge success! Thank you to everyone who came out to run or offered support/donations. It ended up being a beautiful winter day and the best part was seeing Lindsay smiling from ear to ear.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Just a reminder: t-shirts are no longer available, but you can still order Rindsay's Army awareness bracelets! They are $5 each and all of the proceeds go directly to Lindsay and her family. We have already raised over $400 just from the bracelets! The support is overwhelming and quite amazing. You can purchase the bracelets on the merchandise page of this website.

 

There is still more news to share, so here is an update from Lindsay:

 

"I have to start with the run. The Run for Rindsay 5K was one of the best days I have ever had. Seeing so many people in one place (some I knew, some I didn't), to support me and my family in this war was just so wonderful. We can't thank you enough for waking up early on a cold Saturday morning to RUN, of all things. I hope you all enjoyed yourselves and that your little ones enjoyed the food/bouncy house/face painting/cotton candy/etc afterwards. I don't think I ever stopped smiling that day. A special round of applause to Carli DiMarco and Chris Termini for putting that fantastic event together in such a short amount of time.

 

I started school again last Monday and absolutely love my classes. The general focus is to prepare us to begin working in the clinic this fall. I'm in class from 8-3:15 without breaks so it is physically and mentally exhausting but I'm loving every second of it. I know a lot of people don't really understand the role of a Speech Pathologist so I'll try to explain our avenues as best and as quickly as I can. The majority of Speech Pathologists go on to work in schools with children who have trouble pronouncing certain letters or sounds correctly. Some become audiologists and work with people who have mild to profound hearing loss. Others work with clients who have had traumatic brain injuries or strokes and experienced damage to the parts of your brain that control speaking or understanding when others speak. I will be working with the swallowing and voice disorder population. My job will involve aggressive therapy in a hospital setting for patients who have had cancer, radiation, serious injury, etc, that impaired their ability to swallow and also those who have damaged vocal cords. I want to work with the people who have feeding tubes that were told they would never eat or drink again like I was. I want to be the person that saves them from a shortened life, depression, and humiliation like my speech pathologist saved me.

 

Now for the dumb stuff. The two lowest tumors on my spine have started causing me pain if I sit or stand for too long and affecting my ability to drive long distances, focus in class, and exercise. Last week, I tried to begin using weights again and ended up in the ER from back and neck pain that was making me throw up. I would give anything to be able to work-out like I used to. Physically and mentally, I need that release. I met with the radiation oncologist who zapped Cletus last week and said he could do "radiosurgery" again on those tumors which would be 5 high-dose treatments. That would be much more convenient than conventional radiation (15-30 treatments) since they have to be done consecutively and I'm in school. We met with an interventional radiologist as well last week who would take more of a surgical approach. That would involve making two incisions in my back and inserting a probe into the tumors, "cooking" them, and then filling the vertebra with "cement" to prevent further growth. Unfortunately, in preparation for that appointment, I had to have an MRI so he could study the most recent measurements of the tumors I want radiated. The MRI revealed a new tumor on a lower vertebra. Lucky #7. It looks like a Cheerio and it's a pain in my butt. Literally.

 

I'm sorry these end up being so lengthy. I'm a girl. I can't help it :)

 

I love you all and I hope your new year has been a beautiful one so far. May God Bless you and keep you.

 

-Rindsay"

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

"Let perseverance be your engine and hope your fuel. ~H. Jackson Brown, Jr."

Faith, Trust, and Pixie Dust

Saturday, December 28, 2013:

 

Hey, soldiers. Sorry for the belated update. It's so overdue that Lindsay herself wanted to write most of this one. So at the end is a message from the (wo)man herself. Enjoy.

 

1. T-shirt sales have concluded for the year, but during the last sale we entered a contest that Rindsay's Army took 2nd place in, earning $100 for our cause along with an extra $25 from our shirt sale organizer. Yay for #GivingTuesday and #RindsaysArmy! Note that though shirt sales are over for the time being, bracelets are still left, so order! The funds are, of course, still going to Linds and her family for the bucket list, medical bills, and living expenses. 

 

2. Speaking of funds and fundraising. The much anticipated Run for Rindsay 5k is NEXT SATURDAY, January 4th in Lees Summit, MO. All interested parties can register at keepmovingevents.com/rindsay and find all necessary information on the Run for Rindsay and Rindsay's Army Facebook pages. ** You can also stay up to date with Rindsay and RA events on the Rindsay's Army Facebook page (https://www.facebook.com/rindsaysarmy) and read heartwarming posts by your fellow soldiers - like this post from friend Patrick Stueve and his company currently deployed in Afghanistan who have recently enlisted themselves into Rindsay's Army.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

3. Recently, an article on Lindsay was published on the front page of the UCM newspaper "The Muleskinner"! You can read the article at: http://muleskinner.net/rindsays-army-one-student-is-battling-cancer-but-shes-not-doing-it-alone/

 

4. Thanks to our amazing donors, we have raised over $11,000 for Ms. Lindsay and her family. It's so stunning, overwhelming, and beautiful that no amount of praise or extended vocabulary will truly express the gratitude deserved by everyone who has joined this army, and a simple "wow. Thank you." will have to do. So, wow, soldiers. Wow. And thank you all.

 

5. An indirect update: Jason Motte's KCancer Fundraiser last month raised over $50,000 for the fight against cancer. Truly stunning.

 

6. Last but not least, a note from Ms. Rindsay. 

 

"I suppose itʼs high time I contribute to my own blog, huh? Let me start by saying that the overwhelming, undying, sincere support I have received from people Iʼve known since birth - to people I will never meet has been the most beautiful thing one could ever experience. I canʼt believe I thought I could do this alone. I have learned time and time again that the mind and body depend on each other for survival and while my body weakens, you all strengthen my mind, and that has kept me running. I have received letters from people in Massachusetts, New York, Iowa, Oregon, England, Ireland, Florida, Pennsylvania- the list goes on and on. Please know that I keep every single one of them and that they will always have a place in my home as well as my heart. 

 

In November, we went to NIH again for more scanning. The scans, miraculously, revealed that the tumors had not grown since August AND the original tumor, “Cletus”, has actually shrunk. Prayer works, you guys. It truly does. So we are pretty much on a compromise with the doctors now that I donʼt HAVE to start chemo until they are actively growing. They have reassured me that chemo is a “when” not an “if” so I will cross that bridge when we come to it. The doctors asked us to return on January 10th to repeat all the scans, as this cancer is unpredictable and agressive, but we asked to wait until my spring break to begin that stressful process again. I just want to bask in this good news while I can. We have received very few happy reports over the years.  

 

In December, I finished my first full semester back to school and it felt so amazing to feel like iʼm accomplishing something tangible again. So far at UCM, I have a 3.85 GPA and, all things considered, Iʼm pretty damn proud of that. The day after finals ended my family and I left for Disney World in Orlando. Julie Strope and her co-workers at Cerner paid for our flights and park tickets and some friends of mine from my days at Starbucks donated a week of their timeshare. We had a beautiful resort with a view of the lake and fireworks at night. The highlight of the trip for me was our dinner at the new Be Our Guest restaurant at Magic Kingdom. It is located inside the “Beastʼs Castle” and you really feel like youʼve stepped inside the movie we all grew up with and loved. Two rows of employees dressed as butlers applaud you as you walk in, youʼre given a candlestick to light the way to your seat, and there are three different rooms from the movie in which you can dine. We ate in the ballroom, which is designed to look exactly like the room where Belle and The Beast dance towards the end of the film. That was my favorite movie as a child so being in that atmosphere was just pure Disney magic. That dinner was actually the first time I decided to tap into the “Rindsayʼs Army” fund and so, please, accept my extraordinary gratitude for contributing to an experience I will never forget.

 

Unfortunately, halfway through the trip I woke up with, what we think was pneumonia. Obviously, we were far from my doctors but I have had aspiration pneumonia enough times to know when Itʼs happening to my body. An antibiotic was called in that, ironically, made me even more sick. I started feeling very disoriented and feverish while we were still in Orlando. This past Monday, I had a scan at KU and then went right to the ER and was hospitalized because we could not get the vomiting under control. Because I have so much difficulty eating, I donʼt have much reserve when I get this sick so I have lost a lot of weight this week that I canʼt afford to lose. Thatʼs been one of the hardest things to deal with since this all began- accepting that I canʼt bounce back as quickly as I could when I was healthy. A big thank you to those who have been praying and those who offered to come visit me while I was an inpatient.

 

I hope you all had a wonderful holiday. I am so grateful for the outpouring of love and support that has kept my spirits high even when my immune system is low. Iʼm lucky to have, not one guardian angel, but an army of them. God Bless you all and Happy New Year.

 

“Instead of counting your days, make your days count.” Author Unknown

 

Lindsay"

How To Rally

Wednesday, October 30, 2013:

 

Where to begin. That is the question, soldiers, because SO MUCH has happened in the last few days since the last update. 

 

Let me start with a much needed "thank you" to everyone that has joined our ranks. A "thank you" to everyone who has read and shared the site, let alone donated, purchased merchandise, and/or mailed gifts. The response, as said a hundred times over, has been crazy. And the emails, messages, texts, prayers, photos, and letters that have been pouring in have been incredible to say the very least. Lindsay has read each and every word sent her way, and though the sheer number in which they have arrived has kept us from replying directly to everyone, believe me when I say that each note and each effort means more than we could say even if we had the time to respond to them all. Again, please know that we are reading everything and it does mean so, so much!! 

 

Second, if you were at all connected to the events that have happened within the last few days or anything that may arise in the future for Lindsay, please email me (Tashia) at nln34c@gmail.com or call/text if you have my number. I would very much like to give credit where credit is due! 

 

Third, the actual updates that were promised! Now, as forewarned, there are a LOT. So try to keep up!

 

  • First point of news, we broke the $5,000 mark in our donations from the website, compliments of our amazing donors! 

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  • Speaking of donations, a fundraiser at Lindsay's current school UCM is taking place on Saturday, Nov. 2 compliments of the UCM volleyball team. Another event and donation total I will be sure to post about when it concludes Saturday night.

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  • Members of the Cerner PathNet lab have offered to send Lindsay and a family member to Disney World. They have pulled together and have sent the tickets to the Ripley's mailing address! What a blessing, no? Well, there's more. Depending upon the Ripley's schedule and future decisions regarding chemotherapy, they are also working to find dates to donate airfare miles and hotel points to the RIpley's during their Disney vacation. 

 

  • Speaking of Disney! A lovely woman competing in the 2014 Princess Marathon, Suzanne, has purchased Rindsay's Army shirts to wear in the marathon in Lindsay's honor. She has chosen to run in Lindsay's favorite colors and promises to send photos!

 

  • Soon to happen, Lindsay will hopefully be skyping with a few children at an orphanage in Tanzania, Africa, an NGO called "The Small Things" (based off of Lindsay's favorite Mother Teresa quote) run by a lovely woman named Bekka. To volunteer and give back in Africa is a lifelong dream for Lindsay, and though not physically or financially able to go there in person (yet!) it has been such a blessing to learn of the virtual volunteer offer!

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  • Now the best of the best. You've heard of the St. Louis Cardinals, yes? Major League Baseball and all that? Rings a bell.... Well, may I begin with this: the ultimate. Class. Act. On Sunday afternoon, we received a phone call from Mr. Ripley asking us to be at Busch Stadium by 4:30. Compliments of St. Louis Highway Patrol Chief Stulce, a meeting was arranged for Manager Mike Matheny to bring out Yadier Molina to meet Lindsay after batting practice prior to Game 4. Despite the World Series security advising against it, Matheny pushed for the meeting to happen and wouldn't you know it? It did. And the 6 time gold glove winner, Yadier Molina, met our Lindsay. While a beaming Matheny looked on, and a sweet and shy Yadi joked with Lindsay, a life was changed in under a minute. And it was a gorgeous thing to witness, especially with Lindsay's parting words of "thank for teaching me how to rally." 

 

  • Lindsay was also featured on St. Louis's Fox 2 News, an interview that focused on her meeting with Yadi and Matheny and what it meant to her to have that opportunity. The link to that interview has been shared so many times, most recently by celeb gossiper Perez Hilton. The interview can be found  

 

  • That night, we were also blessed to have tickets to the game, which happened to be the Stand Up To Cancer Game. Lindsay was able to take her father, who has been afflicted with the same sort of cancer (as it is genetic) and two friends. These tickets arrived in the mail with a note saying "enjoy the game!" from a company in Omaha, NE.

 

  • The following day, Lindsay was given 5 tickets to Game 5! These wonderful tickets were compliments of a friend of Lindsay's speech therapist. But not only was Lindsay given the chance to go to two World Series games, but she was also contacted for one more impromptu thing....

 

  • Monday morning, Lindsay received a phone call from Mrs. Ripley to say that the St. Louis Highway Patrol had once again come to offer a gift, this time a hotel for after the game! Oh and one more thing... she also called to give Lindsay a Mrs. Caitlin Motte's phone number, the beautiful wife of Cardinal's relief pitcher Jason Motte. (Together, the two run the Jason Motte Foundation with the hook "K Cancer." Sound familiar? Oh, right, that foundation is listed under her bucketlist. No big deal.) Lindsay was instructed to call Caitlin, and it was agreed that she and her husband would meet with Lindsay before the Game 5. Caitlin and Jason broke every expectation we could have had, taking Lindsay into the dugout and onto the field and spending over an hour with her listening to her story and her love for the Cardinals. But not only did they give their time, but also surprised her with not one gift, but two bags of them, including a few K Cancer tees, and *drumroll* Carlos Beltran. Lindsay's reactions and the Motte's infectious love and warmth were more amazing than anything I have ever witnessed. In the words of Jim Ripley "For two whole days, she [Lindsay] wasn't sick anymore." and that amazing feat was accomplished by this amazing couple, an amazing major league organization, and you guys, Rindsay's Army. 

 

  • Just to top off Lindsay's visit with the Mottes, including their gorgeous baby girl, Margaret, they also invited Lindsay to their Foundation Fundraiser personally November 9th in Memphis, TN, and to tour the University of Memphis, a school with the number 8 Speech Pathology program in the country, and Lindsay's field of study.

 

  • Last, but certainly not least, in the list of AMAZING events of the last few days was a private tour of Busch Stadium set up by former usher and current Tour Guide, Tim Wesemann. Tim gave us a behind the scenes look at the most beautiful park in all of baseball, and was the perfect ending to a perfect weekend for our girl. Fear not, there is a gallery link of images of all of the above events.

 

Again, thank you all for all of this. It is each and every one of YOU that made this possible, and everything that continues to come of YOUR efforts. Please continue to share the site and check back for more updates, hopefully every post will contain another step to fulfilling another of Lindsay's dreams. 

Tuesday, November 5, 2013:

 

Today marks the 16th day the website has been public, and look at how far we have come. Those of you who have taken the time to rally around Lindsay have restored our faith in the beauty of humanity, and what an understatment that seems to how amazing this journey has been so far. 

 

Now, there are a few things to update you on! Things you will be pleased to hear I'm sure. 

 

1. The UCM Volleyball team's fundraiser for Lindsay went incredibly well. They not only honored her at the beginning and won the game, but we totalled $444 raised. Photos are in the gallery. 

 

2. This weekend, the absolutely incredible Motte family is flying Lindsay out to the Motte Foundation's fundraiser in Memphis, TN. If you're interested, you can find tickets to the event at jasonmottefoundation.org. Photos of Lindsay's experience will, of course, be posted in the gallery following this coming weekend.

 

3. We have passed the $7000 mark in donations thanks to everyone listed under donors, and more specifically thanks to a large donation by a wonderful man named Chris. Chris, if you're reading this, thank you more than I can ever say in words. And to everyone else who has read, shared, and donated, a reminder that words could not cover my thanks to you either.

 

4. Lindsay now has two set trips to Disney thanks to the offers of friends, family, and donors. One trip will be in December with her family, and the other will be in February to (get this) the Princess Run where she will be an honorary member of the race. A very special thanks to those who assisted in making this dream a reality for Lindsay and her family.

 

5. Before we knew about Lindsay being able to attend the Princess Run, her friends set up a 5K in her honor that will be held on January 4th, 2014 in Lees Summit, MO (more information to come). It is called the Run for Rindsay 5K and with it, we are bringing the Princess Run to her.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6. The second round of t-shirts are for sale! You can find the link on the merchandise page. The new ones are a light pink and are new goal is 200 shirts sold. Let's get it done! 

 

7. Last, but not least for now: if you haven't and are interested, please like our facebook page! We post events and such! It's great. Just go here: https://www.facebook.com/RindsaysArmy .

 

Again, because we cannot say it enough, thank you ALL for everything you've done as a member of Rindsay's Army. Thank you for every thought, every prayer, every phone call, every share, and every message. Thank you a million times over. You've brightened not just Lindsay's life, but her family, her friends, and strangers around the world. Here's to the journey so far, and the journey ahead, and to Rindsay's Army. 

It Takes An Army

#Kcancer

Sunday, November 17, 2013:

 

Hello, soldiers! Well, as promised, more updates! 

 

First: The Motte Foundation held their annual fundraiser at Opera Memphis where Lindsay special guest of the Motte Family, along with two other families who helped shape the Motte Foundation over the last two years. The first was the Ballenger family, who's 9-year old son Brandt made quite the impact on the Motte's. You can find more information on their Team Brandt facebook page. The second family,  were the parents of a beautiful young boy named Wyatt, who is currently battling cancer as well. We have yet to find a website or social media page for Wyatt, but when we do, we will post it here. 

 

The weekend overall was busy touring Memphis and the University of Memphis's speech pathology program (Lindsay's major) and socializing with those who had a huge hand in the Motte Foundation. A beautiful weekend not done enough justice by this short post or the photos you will find in the gallery. Note that though the fundraiser is over, you can still donate or purchase K cancer shirts at jasonmottefoundation.org.

 

Second: Donation total. We have broken $9,000 in donations! Thank you to everyone listed to the right of this post! It's been an amazing thing seeing Lindsay be able to have money to put toward bills and bucketlist items, and just living day to day. As many of you may know, since she was first diagnosed, she has been unable to hold a job, and thus income has been almost nonexistant. So again, thank you to all of the donors, each cent is doing more than you know.

 

Third: Merchandise! 1) The wristbands have been printed and we now have them in stock! A limited number are left - so check them out and order if you're interested. They will be mailed to you within a week of your order. 2) T-shirts will be on sale again soon. This next link will be live until December 8th, with delivery by December 20th. This will be the THE LAST ROUND of shirt sales until the new year, so be sure to place your order if you're interested. 

 

Fourth: Last weekend, Lindsay's sister Claire was scanned for abonomalities after feeling sypmtoms similar to Lindsay's original ones. An abnormality was found on her temporal bone, just like Lindsay's a few years prior, and more scans are in her future. Keep her in your thoughts and prayers. Updates on Claire will be posted as they are found out. Speaking of scans, Lindsay is currently in Washington, DC at NIH, also undergoing scans and tests to see if any growth has occured with Cletus. The outcome of these scans will determine Lindsay's immediate future with chemotherapy, so again, keep those thoughts and prayers going.

 

Last, but not least: Be sure to like Rindsay's Army on facebook for short and sweet updates, links, events, and photos!

 

Over, and out. 

Extra Beautiful

Thursday, October 24, 2013:

 

Hello again, soldiers! I promised to post the news piece that KMBC aired about Lindsay's story. You can watch the teaser below or click "full story here" to see the full clip on the KMBC website. 

 

Another piece was written about Lindsay at "I Acknowledge Beauty Exists" - a beautiful story you can find 

 

Bucketlist work and fundraising efforts are still underway. Be sure to check out the merchandise page for wristbands and t-shirts, and check back here for more future fundraising dates!

Photo Gallery

Wednesday, October 23, 2013:

 

We have added a merchandise page! Rindsay's Army merchandise is now for sale for further fundraising. You can check it out                   Or click the merchandise tab.

 

In other news, we have raised over $2000 for Ms. Rindsay in two days from our amazing donors. We also have finalized two trips to the World Series and are still in the process of crossing off other items on the bucket list! Again, THANK YOU ALL. The love everyone is sharing is nothing short of incredible. 

 

Lastly, Lindsay will be featured on Kansas City's KMBC channel 9's 10pm newscast! Be sure to tune in for the clip either on tv or on their live website stream. I'll be posting it here tomorrow for those that missed it! 

 

As per usual, be sure to check back. It looks like daily updates will continue to be a welcome necessity! 

Great Love

Update (cont): This evening, thanks to YOUR overwhelming support, Rindsay was contacted by NBC local news in Kansas City. She will be interviewed on Friday, Novemeber 1st. More updates to come. Goodnight, soldiers. 

Tuesday, October 22, 2013:

 

Wow. Just, wow. The response to the site has been staggering. In the last few hours, dozens of emails and donations have poured in. It's been a struggle to keep up and we are only one day in! So a mass thank you to those who have wrote in words of encouragment and prayers, and to those who have donated. It truly means more than you will ever know. 

 

Now, you were promised updates of things in the works since the launch of the site, and I am here to keep good on my word. As of now, we have had dozens of responses to the bucketlist items and members of our army are going full force to check them off. Currently, social media tied to Ellen is being blown up to get that item scratched off the list. The local news piece is also aimed at attaining that goal! We have also been contacted about the Busch Stadium tour! And, members of the army are currently working on Series tickets, Ellen tickets, and Jason Motte's K Cancer Foundation. 

 

In the works for further donation fundraising are t-shirts, bracelets, a 5K, a pub crawl, and a fundraiser room party. Our goal to ease the Ripley family's financial burden is looking very doable with the hearts that are working toward making that goal a reality. Absolutely stunning. Thank you will never be enough, but will have to do. Thank you all.

 

That's all for now, but there will be more posts to come, so keep checking back, soldiers!

Day 2

Launch

Monday, October 21, 2013:

 

The website launched on Sunday, October 20, 2013 at 9:30pm. The initial response was stunning as we asked everyone to share, share, share! In the first 12 hours, we had 3 donations, and over 300 site views. Seeing the way people can come together for a common adversary (boo, cancer!) is absolutely beautiful. Thank you all so much, and welcome to Rindsay's Army. 

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