HEADed for Healing with Haley Butts

24/11/2024

10-Year Neuro Checkup Update: A Decade of Gratitude

This week marked a milestone: my 10-year neuro checkup. For those who have been part of my journey, you know the road hasn’t been easy—8 brain surgeries to remove a rare Central Neurocytoma at Barrow Neurological Institute in Phoenix shaped who I am today.

This time, I had my checkup closer to home with Dr. Paul Camarata at KU Med. While I was nervous about seeing a new doctor, it turns out this wasn’t just any neurosurgeon. Dr. Camarata is a colleague and friend of Dr. Nakaji, my incredible life-saving surgeon from Barrow. I felt so comforted and at home as he was texting updates to Dr. Nakaji throughout our appointment. So cool! I felt completely confident knowing I’m in the best hands—just a few hours away from home.

And now for the news I couldn’t wait to share: MY SCAN WAS CLEAR! No residual tumor, no swelling—just a healthy, thriving brain!! 🧠🩷 God is so good!

My few residual long-term deficiencies (primarily my short-term memory loss) has stuck with me and pushed me to better myself every day. "We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down." – Eleanor Roosevelt

While I’ve learned to live each day without fear, knowing I wake up healthy fills me with a peace I can’t describe. Every day is an opportunity to be the best mom, daughter, friend, employee, and even stranger to those around me. I don’t take a single moment for granted.

THANK YOU to all of you—this incredible community—for your unwavering support, prayers, and love over the years. You motivated me to survive, to fight through those surgeries, and to embrace life with hope and resilience. I’m humbled, grateful, and overjoyed to share this moment with you.

And thank you too, to my precious little sister who was able to be there to support me! We were missing a few of our supporters, including my amazing Mama & big sis back in AZ! She was definitely there in spirit getting updates all along the way. 

Here’s to a future filled with healing, hope, and endless gratitude for all of us!

🫶🏼Haley

27/03/2022

Hello to my precious friends, family, support team, encouragers, prayer warriors, and beacons of positivity! (I'm a bit cheesy as many of you know, but I'm so crazy about you all!),

This past week marked my 7-year post-op checkup from my Central Neurocytoma extraction and shunt procedures. August 2014 marked my life-saving neurosurgery #1, and February 2015 marked #8 and the final surgical procedure of this journey. Since that time I continue to celebrate life and the ability to live it to the fullest! I continue to be so humbled by the support you all have shown me. For every hug. For every hike. For every family dinner around the table. For every carpool shuttle. For every sports victory. For every new and old relationship. For everything, I am immensely grateful. Perspective is so valuable.

Upon returning to the real world 7 years ago, I found myself questioning so many things. What is my purpose? Why did God choose to save me and bless me with an incredible support team of family, friends, and some of the world’s best health care professionals in existence who allowed me a continued chance at life? Where do I go from here to be a beacon of positivity, gratitude & change? At first, it seemed like an immense responsibility, but the more I healed the more I realized that reaching my goals and purpose is not something that happens overnight. We must choose to have positive consistency, love, integrity, and purpose in the daily grind. We can put immense pressure on ourselves, when in reality it’s as simple as being intentional in the little efforts we make, like dropping an encouraging line out of the blue, mowing an elderly neighbor's lawn, or standing up for what is right, not always what is easy.

Many of you know, after getting back in the real world, for over 4 1/2 years I had the opportunity to lead and work alongside some of the brightest change-makers in the country with Kansas Big Brothers Big Sisters. I was able to share my story of hope to thousands, conveying the mission of living every day with purpose & light. I continue to be in awe of and inspired by the incredible people with whom I had the opportunity to meet, serve and work.

In early 2021 I transitioned back into my passion in the medical world, working alongside healthcare heroes. It has continued to daily fill my cup. Many of you know that I was blessed to be rescued by some of the world’s brightest minds in the surgical and rehabilitation community. Today I treasure the ability to work with these healthcare professionals, striving to provide patients comfort, stability, encouragement & confidence to recover & live life to their fullest. What a joy!

This year, instead of making the journey to AZ, I was able to have my MRI and impression read here in Kansas. As you can see from the scan, my ventricles continue to stay clear & tumor-free!! It's the most freeing feeling you can imagine. I know many of you fellow survivors know exactly what I am experiencing this week. There's nothing quite like it. God is so good.

Our time to so uncertain on this earth. The older we get, the more apparent it becomes. Let this be my encouragement to you: soak up the goodness and make a small difference every day. Be intentional in being the best friend, parent, sibling, mentor, stranger and human you can be to everyone we are blessed to encounter.

To my tenacious mom, my crazy talented and compassionate boys, my incredible family, my amazing friends, and all of you who have been instrumental in my healing: I love you all & promise to continue to pass it on!

Thank you again for all you do! and ! - Haley

14/08/2017

This past Thursday my 2 boys and my amazing mom traveled the very familiar I-10 from Tucson to Phoenix. After saying hello and thanking a few familiar faces, they conducted my MRI and x-rays. We headed over to Barrow where again were able to reconnect with some of my nurses and administrative staff. We were led into the room where I had staples removed, I first heard that my tumor was removed successfully and completely, my shunt was finally working, and I will finally be able to go home after a seven month stent in Phoenix. Sweet Edna was a pleasant, familiar face to see. She is always so professional, knowledgeable and sweet, and has been there since the beginning of my journey.

Just as we were entering the exam room and finishing an assessment by Eileen, my incredibly talented and dear nurse, I briefly caught a glimpse of Dr. Nakaji, before he rushed off to conduct an emergency procedure. I had booked a tight schedule that day, including getting to Albuquerque before bed time, but I never had a feeling of inconvenience, as I was the person who was causing many people to run behind many times. We killed some time grabbing lunch in the cafeteria before we went back to his office.

The news we received could not have been better! There is still no residual tumor, and my ventricles are continuing to reshape into a beautiful butterfly. We discussed areas where I still have deficiencies, and the effectiveness of the therapies that I am still continuing to practice. I feel my strength significantly increases even still daily.

I hope that everyone is able to embrace the preciousness of our lives. I continue to be in awe of the support that all of you have provided me over years. I hope I am able to help other people who feel as if they are at the end of their rope. I always encourage people to dig deeper. Fight harder. Ask more questions. Pray fervently. Live lovingly. Stay positive.

The past 2 1/2 years have been full of skyrockets and pitfalls. It has been a beautiful journey finding the old and new me, and my new purpose. I am sorry I have not connected sooner with all of you. I really struggle with multitasking. Not sure if that's a side effect or just life. Nonetheless, thank you!

PS: I completely forgot to take a picture with Dr. Nakaji, but mom snapped this one while I was diligently concentrating on filling out paperwork, as well as Whitley showcasing our hero ☺️

24/07/2016

An update on my miracle of a sister!

24/07/2016

Hello to all of my amazing faithful friends, followers, and prayer warriors! I have been so inspired by all of you who have donated your time, encouragement, finances and prayer support throughout my entire journey. Not a day goes by that I am not continuing to be encouraged and motivated by each and everyone of you.

This week I started a new career with Big Brothers Big Sisters of Kansas! I am so excited for the opportunity to give back, work with amazing people and be a part of something Big! Throughout my interview process I was able to share countless stories of the sources my inspiration, you, and why I will be an strong asset to this organization. Your selfless acts of kindness were not only motivating, but inspiring. People believing in me allowed me to fight through when I wanted to give up. That is what Big Brothers is all about!

I ask you for your continued prayers as I overcome deficiencies which never were an issue before my tumor. It really is amazing how far I have come. Learning to speak articulately. Walking again. Working an Excel spreadsheet. Building my short-term memory. When I get frustrated I reflect on this.

It's been a very busy summer. I recently moved to a new home, and mom came to be a huge help yet again! We had so much fun unpacking all of the precious gifts that I received while I was in the hospital. I am completely surrounded with constant reminders of people's love and thoughtfulness.

The boys and I are headed back to Phoenix in August for my 18 month check up with Nakaji. Is been almost 2 years since we initially discovered I had a very large Central Neurocytoma tumor. I fully expect a glowing report, and I'm so excited to once again reconnect with all of my Barrow lifesavers! I will definitely keep you posted.

I am grateful for all of the obstacles in my life. They have strengthened me as I continue my journey. "The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and God-like. It teaches us that although the world is full of suffering, it is also full of the overcoming of it." - Hellen Keller

Much love to all of you 💓 Haley

19/02/2016

Again I say, GOD IS GOOD.

It's been 1 year since I left Phoenix to face the real world tumor-free. When you experience difficult times in life you have a few options. You can cower in fear or self pity, stand still in shock or complacency, or you can rise up with purpose. To be honest, I have experienced all these emotions over the past 12 months, but ultimately I choose to live with a purpose. God saved me for a reason, no matter how big or small it may be. I am working every day to fulfill that purpose. I'm a Riser.

I was once again able to travel back to Phoenix for an appointment with my hero, Dr. Nakaji. He's so much more than a genius neurosurgeon who saves lives on the daily. My appointment with him was a reminder why he is the best. His sweet nurse Edna came to the waiting room minutes before my appointment, and announced that Nakaji had a patient who required an emergency procedure, and his schedule has been pushed back an hour. While there was plenty if grumbling in the waiting room, mom and I couldn't help but reflect on the fact that the patient that inconvenienced an entire room of busy people was me multiple times. Be selfless and it will bring you self worth. Ironic, right?

In true Nakaji form, he took a great amount of his valuable time to explain not only the physical healing, but also the emotional and psychological healing. MY SCAN WAS CLEAR! There was not much change since my scan last July, which was awesome! After 8 surgeries and 8 months of complications, it gave me an incredible peace of mind moving forward. My brain continues to heal. Some areas will never heal, but he explained how it's important to work on the areas you can improve, but as humans we have limitations. It's important to focus on utilizing our strengths to shine, and help others to experience that same radiation.

I was able to go visit my heroes in Neuro ICU and had everyone autograph a sign Lindsay gave me (pictured). I know I missed a few of you, but I'll be back in 6 more months to try to catch you then. Their encouragement "You got this Haley" has never stopped, even as I continue to recover.

My Phoenix trip was a great way to refocus on my purpose. We're all guilty of getting consumed with life's chaos. Many days I pray for God to sustain me, as he did the Israelites in the wilderness in Nehemiah. I feel directionless and I do not feel equipped to handle the journey, but then I reflect back on my life and recall so many times when God provided for me when I didn't deserve it. He gives you exactly what you need at exactly the right time you need it. Remembering this truth gives me strength on our wilderness walk. When I feel exhausted, inadequate, or helpless I look for God's sustenance and direction. Sometimes it comes in the smallest way. The two I can think of first are named Wyatt and Whitley!

Stay focused on what your mission is and do it! Don't just talk about it, actually make a plan and DO IT to the best of your ability!

I continue to be humbled and thankful for all of your support and love! - Haley

19/02/2016

It's been 1 year since I left Phoenix to face the real world tumor-free. When you experience difficult times in life you have a few options. You can cower in fear or self pity, stand still in shock or complacency, or you can rise up with purpose. To be honest, I have experienced all these emotions over the past 12 months, but ultimately I choose to live with a purpose. God saved me for a reason, no matter how big or small it may be. I am working every day to fulfill that purpose. I'm a Riser.

I was once again able to travel back to Phoenix for an appointment with my hero, Dr. Nakaji. He's so much more than a genius neurosurgeon who saves lives on the daily. My appointment with him was a reminder why he is the best. His sweet nurse Edna came to the waiting room minutes before my appointment, and announced that Nakaji had a patient who required an emergency procedure, and his schedule has been pushed back an hour. While there was plenty if grumbling in the waiting room, mom and I couldn't help but reflect on the fact that the patient that inconvenienced an entire room of busy people was me multiple times. Be selfless and it will bring you self worth. Ironic, right?

In true Nakaji form, he took a great amount of his valuable time to explain not only the physical healing, but also the emotional and psychological healing. MY SCAN WAS CLEAR! There was not much change since my scan last July, which was awesome! After 8 surgeries and 8 months of complications, it gave me an incredible peace of mind moving forward. My brain continues to heal. Some areas will never heal, but he explained how it's important to work on the areas you can improve, but as humans we have limitations. It's important to focus on utilizing our strengths to shine, and help others to experience that same radiation.

I was able to go visit my heroes in Neuro ICU and had everyone autograph a sign Lindsay gave me (pictured). I know I missed a few of you, but I'll be back in 6 more months to try to catch you then. Their encouragement "You got this Haley" has never stopped, even as I continue to recover.

My Phoenix trip was a great way to refocus on my purpose. We're all guilty of getting consumed with life's chaos. Many days I pray for God to sustain me, as he did the Israelites in the wilderness in Nehemiah. I feel directionless and I do not feel equipped to handle the journey, but then I reflect back on my life and recall so many times when God provided for me when I didn't deserve it. He gives you exactly what you need at exactly the right time you need it. Remembering this truth gives me strength on our wilderness walk. When I feel exhausted, inadequate, or helpless I look for God's sustenance and direction. Sometimes it comes in the smallest way. The two I can think of first are named Wyatt and Whitley!

Stay focused on what your mission is and do it! Don't just talk about it, actually make a plan and DO IT to the best of your ability!

I continue to be humbled and thankful for all of your support and love! - Haley

27/10/2015

I was so happy to return home to reunite with my family in Kansas on Friday, sharing all the details about my trip back to Arizona and catching up on their week of school and work. In September my Mom moved to Arizona to be closer to my sister and her family, and start her new life as a widow. As a refresher, we lost dad on July 2, 2014. He was our rock. He was our leader and inspiration. He was a strong, positive, influencer and a devoted Christian above all else. Losing him was one of the hardest things our family has ever had to go through. I don't think it was by mistake that I was diagnosed just six weeks after we lost dad. It forced us to focus. He suffered for many years. He deserved to go home to heaven where he didn't have to suffer any more, but instead be in paradise. I'm confident that we will reunite someday, but thanks to my amazing care and support at Barrow it is not time for me to join that party with dad just yet!

Thursday night mom and I got to go to the neatest restaurant in Phoenix, Taco Guild. I highly recommend it. My first experience with this restaurant was eating its food from the ICU bed when one of my precious nurses provided us with a much needed break from hospital food. It was so delicious!

Friday was eerily familiar. Mom and I had our last meal in Arizona at the Cheesecake Factory - yum! - and then we had to say our goodbyes at the airport. I am so grateful to have had her with me through this journey. She is now affectionately known as my rocket girl! One of the workers in the hospital told us about the emotional bond that you experience with your caregiver when you have extended stays in ICU, similar to the bond astronauts experience in outer space. The abnormal becomes the norm. You are isolated from the real world. My hospital stays were so extensive, and it was an emotional roller coaster. Similar to astronauts returning to the earth and reality, it gives you a new perspective on life. It's easy to get focused on trivial day to day worries, but that has significantly changed for me.

Going through this past year gives me a new perspective on things. I have recently found myself subject to a pharmaceutical lay off for my job. I am so grateful to have had that job when I needed insurance and supportive coworkers the most! I am now spending my days looking for a fulfilling career where I can help other people. I'm not really sure what direction life will bring, but I do know God has big plans for me, and he continues to be my captain on this spaceship! Again, I do not say it lightly, thank you all so very much for all your continued prayers and encouragement!!

23/10/2015

Day 2 of the Barrow Nursing Symposium was so much fun! My mom and I were spectators today, as we got to support Eric and his family though his speech, "The Other Side of the Rail." He has such a positive attitude and funny whit that attributed to his overcoming obstacles.

We enjoyed another delicious lunch and then headed upstairs to see the ICU team who saves lives on a daily basis. It felt like a reunion, getting to hug nurses, residents, and therapists. I have missed them so much.

We also got to see the newly remodeled ICU waiting room. My family spent a ton of time in this area praying while I was in all of my surgeries.

I initially came to this conference to share my experience and gratitude with this top notch staff. Once again, I have been the one who has been blessed. This has renewed my confidence and given me the desire to help others. Healing is a process, and some days I don't feel like I'm moving forward. Seeing these incredible people and hearing their reactions to seeing me has made me realize that I have made great strides in my recovery. I can go home now with renewed energy and the determination to get better and better.

22/10/2015

Today was the 34th Annual Barrow Nursing Symposium, and I was so honored deliver a speech from the patient perspective of critical care nursing called, "On the Other Side of the Rail: From Tumor to Shunt to Home." I was so grateful to share the stage with my mom who has been there every step of the way. My sister came up to help us edit the final presentation, take photographs and spend some fun time together.

Last night we were able to break the ice at a dinner where I got to meet another family who was speaking tomorrow at the symposium. It was invaluable to meet another patient and family that put up the good fight and survived.

My favorite part of the whole experience was the opportunity to thank the medical team that directly impacted my survival. We spent a good amount of time hugging, celebrating & reminiscing with many of my nurses. I treasure every one of you!!

I'm looking forward to another couple of days in Phoenix. Stay tuned for more pics & trip updates soon.

22/08/2015

THANK YOU to everyone who prayed for us this year.

Just a month after what we thought was the most devastating thing in the world...the death of our beloved husband and father, we have received news that Haley has a very rare brain tumor. I can barely even type the words. How can this be happening? Even in the midst of our devastation, my precious little sister finds a way to take this journey with an eerily similar attitude to my Daddy. She demands for all of us to see the joy in all circumstances, and is leading the charge.

What we initially thought were symptoms of stress and grief have turned out to be the effects of a 5.6 by 4.5 cm tumor in the center of her brain. The official diagnosis is Central Neurocytoma with hydrocephalus (fluid blockage). She has been suffering with blurred vision and headaches that significantly worsened over the last couple of weeks. Fortunately, she listened to her body and went in for a check up.

God has already made it clear that he is in the center of this entire journey. I happen to work for the best non-profit organization in the country, the American Heart Association and American Stroke Association. Through my team, and the phenomenal QSI department, I was connected with Dr. Bart Demaerschalk at Neurologist at the Mayo Clinic and champion for AHA/ASA. He immediately responded to us and has committed to helping Haley alongside the Chief of Neurology and the Chair of Neurological Surgery. God has put us in front of the very best team in the nation!

Today, August 21, 2014, Haley and Momma have embarked on the two day drive to Phoenix from Kansas. Her husband and sweet boys will stay in Kansas until her surgery has been scheduled.

Please share this page with your friends and family and PRAY PRAY PRAY for our family. We are clinging to this promise: "“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7)." Thank you God for releasing us from paralyzing fear and anxiety, and thanks to each of you for standing beside us as we travel this road.

-Lindsay

21/08/2015

This was the day it all began: when we started HEADed for healing! Oh Lord my God, I called to you for help and you healed me. Psalm 30:2

I am a firm believer of that your prayers and the grace of God got me through this past year. Please keep it up as I search for the purpose he has for me. It's incredibly overwhelming and exciting to think about the future. I have so much to be thankful for... simple things like garage selling with my mom today & going to Kidzworld FX tonight with my family. Life is good because God is GREAT!

Just a month after what we thought was the most devastating thing in the world...the death of our beloved husband and father, we have received news that Haley has a very rare brain tumor. I can barely even type the words. How can this be happening? Even in the midst of our devastation, my precious little sister finds a way to take this journey with an eerily similar attitude to my Daddy. She demands for all of us to see the joy in all circumstances, and is leading the charge.

What we initially thought were symptoms of stress and grief have turned out to be the effects of a 5.6 by 4.5 cm tumor in the center of her brain. The official diagnosis is Central Neurocytoma with hydrocephalus (fluid blockage). She has been suffering with blurred vision and headaches that significantly worsened over the last couple of weeks. Fortunately, she listened to her body and went in for a check up.

God has already made it clear that he is in the center of this entire journey. I happen to work for the best non-profit organization in the country, the American Heart Association and American Stroke Association. Through my team, and the phenomenal QSI department, I was connected with Dr. Bart Demaerschalk at Neurologist at the Mayo Clinic and champion for AHA/ASA. He immediately responded to us and has committed to helping Haley alongside the Chief of Neurology and the Chair of Neurological Surgery. God has put us in front of the very best team in the nation!

Today, August 21, 2014, Haley and Momma have embarked on the two day drive to Phoenix from Kansas. Her husband and sweet boys will stay in Kansas until her surgery has been scheduled.

Please share this page with your friends and family and PRAY PRAY PRAY for our family. We are clinging to this promise: "“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7)." Thank you God for releasing us from paralyzing fear and anxiety, and thanks to each of you for standing beside us as we travel this road.

-Lindsay