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Author: Christina Menkemeller



Destination: Miami

Travel Year: 2024

My Story

In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).

My family and I had never heard of it before and were completely in shock. My doctors informed me that pregnancy hormones intensify this disease which is why my symptoms had gotten as bad as they did. After my Brain surgery to remove the tumor, we were relieved that both my baby and I had made it successfully through surgery. But, I had a number of complications that kept me in ICU for four long months. My eyes were crossed, I was having throat issues that were causing breathing problems and a lot of numbness in several places. A little less than a week later I caught pneumonia, and my lungs gave up and wouldn’t oxygenate.

“I was placed on ECMO, which is a type of life support that did the work for my lungs by oxygenating my blood. I also had a tracheostomy done and was connected to a ventilator. While on ECMO, our baby, Catie, passed away unexpectedly and for unknown reasons. I had to have a c-section the next morning. We were all completely devastated.”

After relearning how to walk and 4 long months in the hospital, I was released. My life has been turned upside down and there’s nothing I can do to control or change it. It’s hard to accept that I’ll never be the same person again. Scans, testing, and surgery will always control my life. But I always try to remind myself that it’s not what should stress me today. So, for today I will enjoy being with my husband, family, and friends.
Getting selected for a Being Positioned journey has been a huge blessing in my life. When I heard about this program and their mission, I was blown away by it. Thinking of the future has become a very scary rabbit hole, but going on this trip has given me something to look forward to. My diagnosis has made me realize how short life is and how I never want to take anything for granted. With constant appointments and medical bills, I feel like VHL has taken over everything. I want us to still be able to have fun and enjoy life. This trip is giving us the ability to live again and not have to think or worry for a bit about our reality. It’s an escape, and I know we will enjoy and cherish every moment of it.

My Health

Daily Challenges

  • Vision issues (double vision + eye shaking)
  • Vertigo
  • Larynx spasms
  • Coughing fits

Ongoing Health Issues

  • Breathing problems
  • Sleep apnea (damage from surgery)
  • Nerve pain from spinal cyst

Major Procedures

  • Brain surgery
  • C-section
  • ECMO cannulation (twice)
  • Tracheostomy

    Total Surgeries: 5

    Each person diagnosed with Von Hippel-Lindau Syndrome experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

    To learn more about Rare Genetic Disorders, click below.

    Learn More

    Continue reading


    Neurofibromatosis Type 2

    Destination: New York City

    Travel Year: 2024

    In Loving Memory

    Denise’s Journey is sponsored in loving memory of Gregory John Adami (62) and Thomas Joseph Adami(60). Gregory served as Tax Director for a major oil service company in Houston, Texas, and died in 2024 from heart failure. Thomas served as a captain in the South Bend Indiana fire department, where he served for 32 years. He died of cancer in 2024. Both brothers were involved in activities serving their fellow man and their communities. Their memory is served well by supporting Denise in this much-deserved Journey and in supporting the efforts of Being Positioned to provide similar opportunities to other individuals battling debilitating diseases.

    If you would like to sponsor a journey in memory of a loved one, complete our contact form.

    My Story

    I had a normal life growing up and loved it. In college, I noticed my right ear was hearing things less. I graduated and was at my first job when I noticed that most of my hearing in my right ear was gone. I went to multiple doctors, but none could figure out what was wrong. When I returned from working as a missionary in Panama, I saw a doctor that scheduled my first brain MRI in 1995. That is when we discovered I had multiple brain tumors and was diagnosed with Neurofibromatosis Type 2.

    I was living in northern CA and had a friend in southern CA studying to be a nurse. When I told her about my diagnosis, she said she had studied it in class and knew a doctor specializing in NF2. I thank God that I was connected to him to start treatment. My life revolves around NF2. At age 30 in 2000, I became deaf. Two years later I met my husband who was born deaf, and we have adopted 2 deaf boys. Through the years, I have had seven brain surgeries, gamma knife, and radiation to treat the tumors that keep growing. I also have had surgeries to remove tumors from my calf and knee.

    “One doctor looked at my MRI and stated that I only had one more year to live (this was 29 years ago)…I am happy that I have gotten through each surgery even though some of the doctors said I wouldn’t make it. That I wouldn’t be able to walk. That I would be blind. But I am still here.”

    I am deaf now and slowly dealing with more tumors. Headaches and dry eyes bother me every day. I can’t swim underwater and have lost some of my balance. Recently, I have had some vision loss and most likely will not be able to drive soon. I am thankful to Being Positioned for giving me a Journey so I can make some amazing memories with my husband while I can.
    Being Positioned has given my husband and I something wonderful to dream about. I was told about this program through a friend and was nervous about signing up at first. It took a while for me to finally do something good regarding my disease. One surgery caused the whole right side of my body to be paralyzed. It took several months of therapy to move and walk again. The older I get; the more tumors grow. I am always thinking about one of my tumors doing damage that will change everything. After my most recent surgery, I decided to apply to Being Positioned and was thrilled to be chosen.

    My Health

    Daily Challenges

    • Deaf
    • Vision problems
    • Dry eyes + mouth
    • Headaches

    Ongoing Health Issues

    • Balance issues (hard walking in straight line)
    • Brain fog
    • Numerous brain tumors
    • Shunt

    Major Procedures

    • Seven brain surgeries
    • Gamma knife
    • Radiation
    • Two leg tumor removal surgeries

      Total Surgeries: 9

      Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

      To learn more about Rare Genetic Disorders, click below.

      Learn More

      Continue reading

      Cereal de Mayo Drink Recipes

      What better way to start the day than with a Lucky Charms Latte? That’s right – two of your favorite things (coffee + cereal) in one delicious package! We’re starting Cereal de Mayo at 9 am EST on May 16th and couldn’t resist picking the latte below for our first cereal treat! Today we’re sharing lots of delicious non-alcoholic and alcoholic cereal recipes. And who knows…maybe by the end of this we’ll all start adding cereal to our daily coffee! 😉


      Lucky Charms Latte (You can find the recipe here.)

      Cereal Milk Lattes (You can find the recipe here.)

      Cold Brew Cereal Milk Iced Coffee (You can find the recipe here.)

      Lucky Charms Cereal Milk Matcha Latte (You can find the recipe here.)

      Crunch Berries Breakfast Shake (You can find the recipe here.)

      Cereal Milk Hot Chocolate (You can find the recipe here.)

      Cinnamon Toast Crunch Cereal Milkshake (You can find the recipe here.)

      Cap’n Crunch Milkshake (You can find the recipe here.)

      Fruity Pebbles Shake (You can find the recipe here.)

      Cereal Tea (You can find the recipe here.)


      Fruit Loops White Russian (You can find the recipe here.)

      French Toast White Russian (You can find the recipe here.)

      Fizzy Trix Vodka (You can find the recipe here.)

      Lucky Charms Cereal Milk Punch (You can find the recipe here.)

      Honey Nut Cheerios Milk Punch (You can find the recipe here.)

      Cocoa Puffs White Russian (You can find the recipe here.)

      Cereal Milk Martini (You’ll find the recipe here.)

      Boozy Reese’s Puffs Cereal Milkshake (You can find the recipe here.)

      Now that we’ve given you plenty of cereal recipes and craft ideas, you’re officially ready for our Cereal de Mayo celebration! Check out the full schedule for the day here and don’t miss our Cereal de Mayo happy hour on Facebook and Instagram live at 5 pm EST on May 16th. To top off our sugar coma, we’re teaching everyone how to make French Toast White Russians. So pick your recipes, grab your cereal, and get ready to change the lives of adults living with rare genetic disorders by eating cereal!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Cereal de Mayo Crafts

      Cereal de Mayo is just a few days away! Aside from consuming way too much cereal, we’re also spending May 16th creating mini piñatas out of cereal boxes! (If you have no idea what I’m talking about – click here to learn about our exciting fundraiser!) Today we’re sharing a list of amazing cereal box crafts the whole family will enjoy!

      A Cereal Box Guitar (Click here to view the post.)

      Cereal Box Piñata (Click here to view the post.)

      Monogram letters from cereal boxes! (Click here to view the post.)

      DIY Cereal Box Gift Tags (Click here to view the post.)

      DIY Cereal Box Drawer Dividers (Click here to view the post.)

      Cereal Box Aquarium (Click here to view the post.)

      Cereal Box Succulent Planters (Click here to view the post.)

      DIY: Mini Pocket Notebook from a Cereal Box (Click here to view the post.)

      Postcards (Click here to view the post.)

      Cereal Box Drawer Dividers (Click here to view the post.)

      Awesome Cereal Box Elephant Craft (Click here to view the post.)

      Cereal Box Bookmarks (Click here to view the post.)

      Cereal Box Puzzle (Click here to view the post.)

      Cereal Box Night Light (Click here to view the post.)

      I’m not sure if I’m talented enough to make that amazing night light, but if you do this one – please send me a picture! Who knew you could turn cereal boxes into so many incredible items?!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Cereal de Mayo Recipes

      Cereal de Mayo is almost here! (If you have no idea what I’m talking about – click here to learn about our unique virtual fundraiser!) To help you prep for May 16th, we’re sharing some delicious cereal recipes. Since we’ll be consuming quite a bit more sugar than normal that day, we’re making Ranch Cornflake Crusted Baked Chicken for lunch in our house to help break up the sweetness overload (if there is such a thing 😉 ). Throughout the day we’ll be sharing live videos and stories of us making different recipes, doing cereal crafts, and even playing cereal bingo! So, make sure to follow our Being Positioned Facebook and Instagram pages to be part of all the fun!

      Ranch Cornflake Crusted Baked Chicken (You can find the recipe here.)

      Fruity Pebbles Breakfast Bread (You can find the recipe here.)

      Overnight Fruit Loop Sweet Rolls {Made with Cereal Milk} (You can find the recipe here.)

      Cereal Macarons (You can find the recipe here.)

      Golden Grahams S’mores Bars (You can find the recipe here).

      Cinnamon Toast Crunch French Toast Sticks (You can find the recipe here.)

      Crunch Berry Muffins (You can find the recipe here.)

      Raisin Bran Muffins (You can find the recipe here.)

      Fruity Pebbles Mini Cheesecake (You can find the recipe here.)

      Cornflake Biscuits (You can find the recipe here.)

      Fruit Loop Waffles (You can find the recipe here.)

      Grape Nuts Bread (You can find the recipe here.)

      Two Ingredient Cereal Yogurt Bark (You can find the recipe here.)

      Savory Hot Buttered Cheerios (You can find the recipe here.)

      Cap’n Crunch Peanut Butter Cookie Stackers (You can find the recipe here.)

      Cereal Milk Ice Cream (You can find the recipe here.)

      Breakfast Cereal Cupcakes (You can find the recipe here.)

      Reese’s Puffs Peanut Butter Balls (You can find the recipe here.)

      Milk and Cereal Breakfast Popsicles (You can find the recipe here.)

      Rice Krispie Treat Pancakes with Browned Butter Syrup (You can find the recipe here.)

      Cheerios Coated Grilled Cheese Sandwiches (You can find the recipe here.)

      Peanut Butter Crunch Black Bean Brownies (You can find the recipe here.)

      Corn Pop Treats (You can find the recipe here.)

      Chocolate Mousse Parfaits with Reese’s Puffs & Chocolate Covered Pretzels (You can find the recipe here.)

      Alright, if you’re not excited about Cereal de Mayo yet after seeing alllllll of those delicious recipes, then you have a lot more will power than I do haha! I’ll be honest…I had to hide our cereals at the top of our pantry, but I’ve still caught Cardin sneaking a few bowls. We can’t wait to spend May 16th making crazy cereal recipes with you (virtually 😉 )! Which recipe are you going to make? Let us know in the comments below!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Look for the Good

      Wow – who would have ever thought this would be our world right now. I think it’s safe to say our entire country is in a collective state of shock as we watch our lives crumble.

      Sitting here trying to grasp our new reality, I feel like I’m back four years ago in tears on my kitchen floor trying to make sense of what my diagnosis might mean for my life.

      Of all the bad things to happen, finding out that I’m living with two brain tumors never crossed my mind. And losing my hearing certainly hadn’t made my list of worries because honestly, I didn’t even know that could happen to people.

      My life was barely getting started. And then in one day, I lost it all. (Or at least I thought I did).

      Except for this time – somehow – we all got hit with the same curveball. We’re all in this together.

      The other day I was on the phone with someone discussing our plans for Being Positioned and what this would mean for the nonprofit’s future. Given the current state of our world, everything we had planned is either on hold, canceled, or being heavily altered. After hearing my response he paused and said, “leave it to you to find something good even in this Christina”.

      Later that day I started to think about his words and how accurate he is – I can find the good in pretty much everything. Even in my worst moments, I quickly reframe my situation and seek out the positive.

      But this is NOT something I’ve always done.

      Before my diagnosis, I wasn’t nearly as intentional about finding purpose in my suffering. And it certainly wasn’t my automatic response to pain.

      (Before I go any further, I want to pause and say that I do not skip over my suffering. I’m not naïve or in denial when problems occur. It’s extremely important to let yourself feel sad, angry, or any other emotions that you’re experiencing right now. I’m simply sharing how my husband and I learned to thrive in a seemingly impossible situation.)

      Looking back over the last four years I feel like Cardin and I are surprisingly prepared for the pandemic. 

      Between my diagnosis, traveling for a year, and starting a nonprofit – it’s almost as if we’ve been training for this very problem.

      We learned how to respond to bad news with faith instead of fear. We learned how to be creative with our circumstances and react with resilience. And thanks to backpacking around the world – we’re used to losing track of what day it is and being together 24/7 without much other human interaction.

      But the biggest thing we learned from my condition is to look for the good.

      A few days after we found out that I have NF2, a friend called and told me to look for the “God winks” in my life. I hadn’t heard that phrase before, but quickly attached to it and started writing down a list of every good thing that was helping make my situation bearable. I saved the document on my computer and knew that it would be a helpful reminder as I learned to navigate my new life. 

      Reading through my old list of 37 “God Winks” earlier today, I couldn’t help but smile. I was buried in fear. I couldn’t see past my pain.

      But creating that list planted a small seed in my heart and kept me grounded in the truth that all hope was not lost. Good things were still happening despite the bad.

      The thing is – that truth remains accurate even during the pandemic. Good is still happening alongside the bad. And it’s a lot easier to thrive during a situation like this if you can learn to seek out the good.

      Notice that I’m using the word “thrive” not “survive”. Anyone can survive a hard situation, but few decide to thrive because of it.

      Even for us, life has taken an unfortunate turn. We are one of many nonprofits who had to cancel a fundraiser. All of our journeys are paused indefinitely and we’re faced with the reality that it could be a very long time before it’s safe enough for our vulnerable recipient population to travel.

      Everything has come to a screeching halt. It’s extraordinarily disappointing and defeating to devote so much energy to create something and have it stop before it even had a chance to start.

      No one is immune to the pain of our world right now.

      BUT – I’m choosing to still look for the good. In fact, I’m looking for the good a lot more than I’m looking for the bad. I know our problems are still there. I feel the pain. But I won’t let the bad steal any more from me than it has to.

      I’m facing this with a heart of gratitude that far exceeds my disappointment. And I want you to remember that you have that option too.

      Hope is only lost when you decide to let it go.

      Despite the readily available list of bad things we’re all facing, I challenge you to not just look for the positive – look for the purpose. Look for small ways every day that you can find meaning in this time at home. Try new things, connect with old friends virtually, do things that you otherwise would never have the time to do. Discover creative opportunities to help others and remember that one of your biggest sources of purpose right now is to do your part and stay home.

      And at the very least, use this time to practice looking for the good in every situation.

      Subscribe below to receive posts directly to your email! And if you want to keep up with us daily, follow us on Instagram at beingpositioned and christinamenkemeller or on Facebook @beingpositioned!

      A Beautiful Distraction

      I took this photo the day after we launched Being Positioned – the nonprofit.

      Exactly one day after the greatest accomplishment of my life became a reality.

      We had planned on celebrating, but through a series of unfortunate events, including an incorrect test result, I ended up having to spend it in yet another infusion chair.

      Launching a business at the same time as dealing with my condition has been unexpectedly difficult for me.

      Thankfully the side effects from my treatment are minimal, but the fatigue it causes has made it hard for me to keep up. Repeatedly working until 10 pm isn’t great for someone in my position, and my late nights quickly took a toll on my body.

      The more tired I am, the worse my hearing gets. That’s what caused the false decline on my hearing test – and that’s why I ended up having treatment the day after we launched.

      On it’s own, an extra infusion isn’t a big deal. But, the emotional roller coaster of getting bad news and having to redo my appointments all while trying to launch Being Positioned was extremely defeating.

      I did what I could to show up every day, but honestly, it was some of the hardest weeks of my life. I was so proud of everything we were accomplishing but incredibly frustrated that I couldn’t just be normal for a bit and get through everything without the drain of being a patient.

      It’s hard to ignore that heavy feeling of disappointment each time NF2 taints another life event.

      My condition has stolen a lot from us in the last four years. But at the same time – it’s added just as much. After all, if it weren’t for this disorder, I never would have created Being Positioned.

      I feel like I’m stuck in a strange reality. One minute I’m on the phone with our trademark lawyer, the next I’m calling the cancer center. Bouncing back and forth between running a business and being a patient – like I’m living two completely separate lives.

      But Being Positioned has been a beautiful distraction for me.

      It’s given me something to hope for during an otherwise hopeless situation. And having my health temporarily decline while launching reminded us why we’re doing this and how much people living with these conditions need a break. 

      I know how it feels to be desperate for an escape.

      When starting a business or taking any big risk, it’s easy to feel like you’re making a terrible mistake. I couldn’t help, but think I was crazy for doing this and doubt whether people would care about what we’re trying to do.

      The weeks leading up to our launch, I started feeling more insecure about the process and worried that people wouldn’t think this is a worthy cause.

      So, maybe I needed the reminder.

      Maybe the reason I had to go through all of those extra tests and appointments at such an important time was that I needed to remember that I’m not doing this for other people’s opinions.

      I’m doing this to help adults suffering the same reality that I am.

      I’m doing this for everyone fighting to live a normal life despite the battle going on inside their bodies. I’m doing this for everyone feeling like there is no chance of escaping their reality, even if just for a week. I’m doing this for everyone living the same double life and needing something to hope for again.

      And despite my fears about sharing Being Positioned with the world – you did an incredible job of proving me wrong. 

      Thank you to everyone who wrote such meaningful messages about Cardin and me when you shared our video. We read every single post, and your words of love and encouragement were so healing for us both. And thank you to everyone who donated this last month. Your support and trust mean the world to us.

      Don’t forget to subscribe to our newsletter here, so we can let you know when new blogs are posted!

      Want to keep up with us daily? Follow us on Instagram at @beingpositioned, @christinamenkemeller, and on Facebook at Being Positioned.

      Letting Go of Being a Burden

      Do you ever feel like a burden?

      Like no matter how hard you try—you always seem to need a little extra help.

      Even asking for a small accommodation might feel like you’re asking for far too much far too often.

      Recently I was interviewed for a podcast called “Unapologetically Me.” 

      The host, Boomer Perrault, explores different topics pertaining to mental health. He interviews guests going through a specific situation, whether it’s a chronic illness, depression, or an addiction, and encourages them to reflect on how their experiences have affected their mental health. And he ends each episode with the individual explaining their top tip for dealing with their particular circumstances.

      When I accepted the offer to appear on the show, my first thought was: most people with my condition aren’t going to benefit from this at all.

      Because they won’t be able to hear it.

      Shortly after the episode went live, I posted it on my social media accounts. I was excited about sharing it but feared that people who have NF2 would get frustrated with the lack of ability to listen to it.

      Within a few hours, I received multiple requests for a transcript of the episode so that individuals who are deaf or hard of hearing could experience it as well.

      First off, I’m a bit of a podcasting newbie, so I had no idea that transcribing it was even an option…it makes perfect sense; it just never occurred to me until people started asking for it.

      My next dilemma: asking Boomer to get the episode transcribed. I had heard that there are services out there that will do it for you, but still worried that he would reject the idea based on the time or money needed to accomplish it. 

      I didn’t want it to be too much of an inconvenience for him.

      I didn’t want to be too much of an inconvenience for him.

      Even before my diagnosis, I always felt a little guilty asking others to do things for me. I tried to be as independent as possible, and if I ever needed help, I would try to even the playing field and do something for them in return.

      This has progressively become more of an obstacle for me as I deal with my own hearing issues and needing a little extra assistance.

      I’d rather pretend like I can hear everything and laugh along with the rest of the group than ask people to repeat themselves repeatedly. I’ll eat at a loud restaurant and suffer in silence instead of suggesting a quieter option. My husband is often the one to take the lead and propose an alternative location, sparing me from having to speak up.

      Thankfully, Boomer noticed the comments requesting a transcript and agreed to do it before I even had the chance to ask him. Although it ended up being a bit of a tedious process, not only did he finish it in less than 24 hours, he also offered to transcribe the rest of the episodes if needed.

      This was a big lesson for me.

      Rather than viewing me as a burden, Boomer (who before the interview was a stranger), was more than happy to do what was needed so that everyone could enjoy the episode.

      So if someone who hardly knows me was so eager to help, then why is it that I have such a difficult time accepting guilt-free assistance from people who know and love me?

      Why is it that so many of us dealing with this disorder consider ourselves a burden?

      As I’ve gotten to know more people living with NF2 over the last year, feeling like a constant inconvenience seems to be a pretty common theme. 

      And it’s not just the people who are entirely dependent on caretakers to make it through the day—even those of us who need occasional accommodations tend to get stuck in this trap.

      One thing I realized during this situation is that there is a delicate balance between feeling like a burden and knowing one’s value. 

      Yes, our condition can be very taxing for those around us.  We might require assistance for everything and cause both a mental and a financial strain on our family. But above all else, we’re the ones having to live with this disorder and the daily challenges it presents. 

      We’re the ones feeling the full weight of our reality.

      God calls us to live in community with others for a reason. 

      We aren’t meant to do life alone. We’re worth helping.

      And if I believe that truth, then why should I feel guilty for asking others for assistance?

      Now, I can’t speak for those who depend on constant aid from their loved ones. I’m not there yet, so I won’t pretend to understand.

      But I do know that the more we label ourselves a burden, the more we become one.

      We all need help sometimes and calling ourselves a burden doesn’t lessen the load on anyone else. It doesn’t take away the fact that we still need help. It does, on the other hand, make it harder for others to help us over time.

      Yes, some people might resent the amount and frequency of help you need.  They might view you as a total pain and an inconvenience.

      But how others view you is not your responsibility.

      Your responsibility is to show love and gratitude for every bit of help you receive and to return that kindness whenever you are able. 

      I know this is often easier said than done and that years of repressed guilt won’t fall away in one day. But I hope this gives you a little freedom to begin giving yourself and those around you a little grace.

      Thank you to those who rather than seeing yourself as an inconvenience, spoke up and asked for the podcast to get transcribed. You recognized that you deserve to hear everything just as much as everyone else. You taught me a valuable lesson. 

      And thank you to Boomer (who you can follow HERE), for living out your mission of kindness and showing the power of simple good deeds. 

      If you haven’t listened to the episode yet, click HERE and go to the episode titled “Being Positioned” to play it. And if you are hard of hearing or deaf, click HERE to read it.

      If you want updates about our journey, subscribe to my blog to receive posts directly to your email. And if you want to keep up with us daily, follow me on Instagram at beingpositioned or Facebook @beingpositioned!

      The Perfect Timing

      When my doctor first suggested that I stop chemotherapy and take a break from treatment for a while, my immediate reaction was fear.

      What if I lose my hearing? What if my tumors grow?

      One of the benefits of being on treatment was that it allowed me to feel like we were doing something to stop (or at least delay) the progression of my disorder. Most patients end up on the drug I was on for years, so the idea of “taking a break” from it never crossed my mind.

      Despite my concerns, my doctor urged us to trust his recommendation and give my body a rest for a few months.

      Little did we know that a “few months” would turn into a year and a half.

      And little did anyone know that we would make the most out of our newfound treatment free existence by quitting our jobs and traveling the world together.

      In between trips I continued to have MRI’s and hearing tests every 3-months. We kept a close eye on my condition, but the growth was slow, and my hearing remained stable.

      I was okay.

      Day two of officially living back in Orlando meant it was time for my MRI and hearing test again. After the growth on my previous scan, we knew it was possible that I would end up having to start chemo soon, but as my doctor went over my new scan, he claimed that it was probably ok to hold off for a few more months. He even offered that I might be able to wait until the summer to get back on it.

      I was thrilled!

      We would have a chance to get settled at home before needing to face our medical world again. I’d get to feel normal for at least a little longer.

      The next night I got a call from my doctor in Boston.

      If you ever get a call from your doctor after hours—you know its bad news. 

      He explained that they received the final volumetrics report (a special analysis that measures the volume of the tumors) and that there was quite a bit more growth than they initially thought. 

      A lot more.

      Thankfully the type of brain tumors associated with NF2 are typically small and slow growing, but that also means it’s tricky to detect growth. It’s easy for doctors to misinterpret a scan as stable, which is why the volumetrics analysis is so helpful.

      Usually, the full report is ready in time for my appointment, but this time it was delayed by a day.

      Unfortunately, that one day was enough time for me to get attached to the idea of avoiding treatment for a few more months. 

      I accepted the good news a little too quickly.

      As my doctor discussed the new chemotherapy schedule and dosage he wants me to try, I couldn’t help but feel disappointed. 

      Not just that my tumors had unexpectedly grown so much…

      But that my break was quickly coming to an end.

      I must admit I’ve grown accustomed to feeling like a normal person again. After being thrown so suddenly into a medical crisis 3-years ago, I never dreamt I would have an opportunity like we had this last year and a half. 

      Other than my routine scans and tests, I had the chance to forget about brain tumors and hearing loss. I got to explore the world, take risks, and be a regular 26-year old. 

      I got to feel like me again—a temporary second chance.

      I’m lucky. 

      One of the first things my doctor said on the phone was that most patients barely make it 6-months off of treatment before needing to get back on it.

      I made it 18-months.

      But alongside my gratitude for my surprisingly long break, it’s hard to accept that it’s over. 

      This last week has been rough. 

      From talks of growing tumors, fertility decisions, and preparing to start chemo within the next week or two, it’s been a harsh adjustment. Throughout the tough reality we faced these last few days though, I’m amazed at how perfectly God has taken care of us.

      When I had to start treatment a few months after my initial diagnosis, we were still in so much shock that we barely had a chance to catch our breath. We were in constant survival mode and didn’t know how to fit our original plans into the life we were being forced to live.

      This time though—it’s different.

      It may feel sudden and overwhelming right now, but in reality, we’ve been preparing for this since the day of my last infusion.

      We have the upper hand. We know what to expect. We knew it was coming.

      Emotionally we’re stronger, and mentally we’re wiser.

      God has provided for us in every way and has continued to place specific people in our lives exactly when we need them.

      He’s given us constant reminders that He is in control. 

      He’s got us.

      And every time I start to doubt, I remind myself of the perfect timing surrounding “my break.”

      If I hadn’t stopped my infusions when I did, we never would have been able to see the world.

      We finished our traveling stint treatment free.

      I didn’t lose my hearing. 

      My tumors didn’t grow too much.

      We had the adventure of a lifetime together. 

      Now we’re ready.