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Author: Ashleigh

  • Butler’s Brain Cancer Story part 4

    Throughout the entire process of Butler’s craniotomy & tumor resection, his coma, intubation, and process of getting him off the ventilator and finally on a path to healing, we had not received any information in regards to his tumor. We (not so) patiently waited for news on his tumor, but everything else going on had everyone a bit distracted. A few days after Butler came out of his coma, we received news from his neurosurgeon that they received the test results from his tumor, and we made plans for him to meet and speak with us later that day. This moment felt so heavy as we wondered what news would come from the neurosurgeon. I sat on one side of Butler, and his mom sat on the other side as we waited to hear the words that would forever change our lives. “Butler’s tumor came back as Glioblastoma – brain cancer.” It was like the entire world came crashing down, but the full weight was not felt by me for a while. It took forever for me to process the information that had just been given to me. I watched as Butler and his mom reacted, and I tried to keep my tears inside. Obviously, everyone’s emotions were high. I held Butler’s hand, and said all the things I could think of to bring him comfort. “I’ll be by your side no matter what.” “We are going to make it through this.” What do you say to truly comfort someone who was just diagnosed with a terminal cancer? I was doing everything I could to comfort him, but inside I was falling apart.

    Butler’s father, Marion Graham passed in 1999 from the same cancer, Glioblastoma. After Butler’s official diagnosis, I did as much research as I could. I learned that only 5% of Glioblastoma cases are genetic, and Butler was a part of that 5%. I didn’t need a doctor to tell me that. We also learned after digging further into his lineage that there were other cases of GBM in the family. There are only 12,000 new reported cases of Glioblastoma in the United States every year. This was not a coincidence. His oncologist swore it was not genetic. Fast forward about 6 months later, he comes back and tells us new studies are showing it actually can be genetic. Insert eye roll here. My research also showed the average prognosis of GBM is 6 to 8 months. After the happiness of my husband making it through a brain tumor, a heart attack, and a stroke, we were looking at a very grim outcome. That did not stop our hope, it did not stop Butler’s determination to learn to walk and function again. We kept pushing forward, because we had children depending on us.

    The rest of Butler’s hospital stay consisted of daily physical therapy, occupational therapy, speech, and getting him ready to go home. He was quickly growing tired of being away from his family every night, of eating hospital food, of not being able to go outside. I believe a crucial part of healing is exposure to the sun, and everyone in the hospital who is able should be taken outside for some good old fashioned sunlight. There were 3 times where we were able to get his nurses to wheel him outside for some sunlight exposure. One time was when he was still in ICU, his nurses along with me and the kids wheeled him outside in his recliner. I will never forget the happiness on his face, the joy in my heart. It was like we were taking a walk as a family again. His nurses at Roper St. Francis were seriously top notch, and we will never be able to thank them enough for loving Butler the way they did.

    When we couldn’t get Butler outside, we talked the nurses into allowing us to wheel him in his wheelchair around the floor. We would load Thomas up in the stroller, and Butler in his wheelchair, and we would walk lap after lap. The floor he was on was a large circle with 2 nurses stations in the middle, so it was perfect. I remember feeling like we were a disturbance to others around us. I don’t really think we were, but it felt like it. I really just wanted to be with my husband and kids. For us to feel some kind of normalcy again, and walking those laps around the hospital floor was normal at the time. We had so much fun doing that, and it helped keep Butler’s spirits up. He struggled whenever I took the kids home for the night. He would beg me to stay overnight, but with the kids I just couldn’t. His mom and sister took turns staying with him because none of us could bear the thought of him being alone. When I wasn’t with him at the hospital, he was blowing my phone up! At the time it broke my heart and stressed me out, because as soon as I would leave he would be calling and texting me asking where I was, when I was coming back. Now, we look back at those old text messages and laugh because he really was being quite silly! Not long before we were able to take him home, he had 34 staples removed from his head. According to Butler, it was incredibly painful to experience.

    Soon, there were discussions of Butler going to stay in a rehab facility downtown. Butler DID NOT want to go to a rehab facility. He wanted to go home! He was looking at 1 to 2 weeks in the rehab facility, and the thought of that made him absolutely miserable. At the time, I thought it was what he needed, and even though he dreaded it, I was prepared to drive downtown everyday to be with him through rehab. Then, literally overnight, the decision went from him going to a rehab center, to “He may go home TODAY!” TODAY?! I was not ready. We have 3 BIG dogs (my wonderful best friend had been keeping them in the weeks Butler was in the hospital. If you ever need a wonderful in-home boarder, contact The Hippie Mutt Hutt,) and a really small house. Butler was still somewhat unsteady on his feet, I had a baby, and I knew that there would be so much on my plate in helping him with the most basic things at home. It wasn’t that I wasn’t willing to do these things, but I was scared. I was so afraid he would fall at home because of the dogs. So afraid of what our new life held at home, outside of the hospital, outside of all the professional help. Could I handle all of that??

    On November 18, just in time for Butler to be able to enjoy Thanksgiving, he was released from the hospital, and we went home to continue his healing. From there, we would start his extensive treatment of radiation/chemotherapy, and face our new life together; navigating cancer and raising a family.

    If you’re still here, reading and keeping up, THANK YOU! Part 5 will be released soon.

  • Butler’s Brain Cancer Story – Part 3

    I want to thank everyone who has been taking the time to read and share Butler’s story. Writing this story out has been emotional and therapeutic for the both of us. I have Butler read every post before it goes live, and there are a lot of things he does not remember, so it’s helpful for him to be able to read his own story.

    **This post contains pictures that may make some viewers uncomfortable.**

    For 7 days after Butler’s craniotomy and tumor resection, he was in a medically induced coma and intubated. He was depending on a ventilator to breathe for him. Every morning, the nurses would see how his lungs could function without the ventilator, and every morning was a decision to keep him on it. The more days went by, the more nervous I became. What if his lungs didn’t heal? I started to ask the doctors what happens if his lungs never get to a point where they could function off the ventilator? I never got a straight answer, and looking back, I think it’s because the actual answer would have been very grim. As they tested his lungs each morning, they would decrease the dose of sedative keeping him under just slightly. If I was there, I would talk to him, and he would squeeze my hand!! Sometimes he struggled, especially towards the end of his sedation. I think his body and brain was OVER IT. One frightening detail was that he had to be restrained while he was intubated, and one day I realized why. They decreased his sedative, were adjusting his position in the bed, and he was”awake” just enough to try to rip the intubation tube out of his throat. So yeah, he had to be restrained. I don’t know anyone who would want a tube down their throat though, the entire situation is wildly uncomfortable.

    Finally, on day 8, the nurses tested his lungs again. He had myself, and his Aunt Kathy with him. The goal was to let his lungs function on their own for 30 minutes without the ventilator. They decreased his sedation, and slowly decreased the amount of oxygen coming from the ventilator. Me and his aunt stood one on each side of him, cheering him on, watching the minutes go by on the clock. The closer we got to 30 minutes, the more we cheered. It was the most hope we had felt in a week. The more his sedation wore off, the more uncomfortable he became because he still had the intubation tube down his throat. After 30 minutes everyone in the room cheered because HE DID IT!!!! I cried with joy.

    I was so thankful to have my husband back with us. That week where he was in a coma, I had never felt more alone. I think it’s easy to take the most simple things for granted sometimes, and it’s not until you realize how easy it is to lose, that you realize how special they are to you. All I wanted was to hear his voice, to hear him tell me he loved me. I wanted to walk down our street holding hands with him and our kids again, like we did every day before. I wanted to hug him and hold him. These most basic things suddenly felt so far away, and that was one of the hardest parts of this situation. The most mundane things of your everyday life are actually so, so precious. This experience truly put our life into perspective for me

    It was difficult for Butler to talk for a few days, understandably. We didn’t know it then, but his voice would never completely come back. Very small percentages of people who are placed on a ventilator experience damage to the vocal cords that are permanent. He can speak clearly, but his voice sounds different, and he cannot project his voice like he used to be able to. Now that he was awake, we could evaluate his brain function, among other things. We learned that his vision was impaired. He lost any left sided peripheral vision in his left eye. It took about a year for us to learn that the vision loss was from his surgery, and not his stroke. If it was from his stroke, it would have regenerated. His tumor was pressing on his right eye, and the surgeon had to move an optic nerve to get the entire tumor. He also had some left sided weakness from his stroke.

    Butler’s heart was still weak, and needed time to heal and gain strength. So at this point, we were waiting for his heart to heal, his lungs to heal, and his brain to heal. But we were making progress in the right direction! Considering everything Butler had gone through, it truly was a miracle that he was doing as well as he was. I was worried about his memory; would he remember us? What WOULD he remember? He did not remember much of anything from the last 9 months before he went to the ER. He could tell me when we got married, his birthday, he knew we had 2 children. But those 9 months were just blank in his mind. He did have short term memory issues, which has definitely improved over time. It is amazing to see how the body can heal from even the most traumatic events over time. 18 months later, Butler’s heart is doing amazingly well, as are his lungs and brain.

    Butler started physical therapy as soon as he could. It took a day or so after he woke up to get some nutrition into him. He had been given nutrients through a feeding tube while he was intubated and still had to stick to a liquid diet while his throat healed. He had to learn how to walk again, especially given the left sided weakness from his stroke. From day one, he was determined to get back on his feet and be independent. Butler is not a man who enjoys having people taking care of him and waiting on him. His strength and determination amazed me.

    Part 4 is coming soon!

    You can find part one of Butler’s story here: Butler’s Brain Cancer Story – Part one and part two here: Butler’s Brain Cancer Story Part 2

  • Butler’s Brain Cancer Story Part 2

    It is important to note this story is read and approved by Butler before I post anything. The last thing I want to do is post anything sensitive or against my husband’s wishes.

    On November 1, at 3:22 pm after a heart attack, Butler’s neurosurgeon immediately took him to surgery to remove his brain tumor. It was the longest afternoon of my life. Our family filled an entire large waiting room while we all waited to hear how the tumor resection went. In a time where I felt so lonely, in limbo wondering what life held for my family, it was comforting to be surrounded by all of Butler’s aunts, uncles, siblings, cousins, and parents. Hours later, the neurosurgeon came out to let us know Butler was out of surgery, and that he miraculously was able to remove the entire tumor. The tumor would then be sent off to the Mayo Clinic for testing. (It is important to note at this point, we did not truly know whether or not his tumor was cancerous.) A lot of cases of GBM are not so lucky; often times the tumors are located deeper in the brain, putting the patient at risk for severe deficits if surgeons try to remove it. Sometimes the tentacle-like Glial cells wrap around ventricles and
    veins; making it impossible to successfully remove the tumor in its entirety.

    Butler was set up in ICU to recover from his surgery. He was put into a medically induced coma. The thing we learned about brain surgery, is the only way to heal the brain, is to sleep. Most of the time, patients with GBM will be put into a medically induced coma and intubated for 2, maybe 3 days before they are woken up, extubated, and can typically go home soon after. In Butler’s case, there were complications. When the neurosurgeon removed Butler’s tumor, the amount of pressure that was released in his brain caused a stroke that started in his tumor site, and ran down the ride side of his brain. He also had residual issues from his heart attack, which caused his heart function to drop down to 20%.

    I remember being so thankful my husband made it out of brain surgery alive. I was so thankful we had an answer for his “migraines,” that we were on the other side of that. He was ALIVE. What I didn’t know, was how long the road ahead of us was. That first day where his tumor was removed, sitting in the ICU waiting room with his family, was just day 1 of 18 long days.

    Because Butler was in ICU, the amount of people that were allowed to visit was severely minimized. It is hard to remember exactly how the first few days went, but for the most part, me, the kids, and Butler’s immediate family would stay as late as we possibly could. We took turns going from the waiting room to his ICU room to sit with Butler. He was by far the youngest patient in ICU, and he definitely had the most vistors! The first few days post surgery, he was hooked up to an unbelievable amount of machines. When I was alone in the room with him, I would sing our favorite songs to him. I would talk to him about anything I could think about. I wanted him to hear me, to know he was not alone. At night, I would pack our children up, and make the long drive back home to Moncks Corner from West Ashley. Thomas was 8 months old at that time, and he HATED riding in the car, so every ride home at night was full of crying and screaming. I was completely numbed out. I am usually a very emotional person, but from the moment I found out Butler had a brain tumor, I went numb. I had no time for emotions, I had to mentally prepare myself to possibly take care of our children, of our life on my own.

    Every day consisted of waking up the kids, packing up any and everything we needed for a day at the hospital, and heading to West Ashley. Some people may question my decision to bring the kids with me to the hospital every single day. I was homeschooling Ella, (which was put on hold through this entire process) and exclusively nursing Thomas. We have always been a family that stayed together, so it made sense to keep them with me. The last thing Ella wanted was not to be at the hospital if her daddy woke up. Being with me, her daddy, and her brother was what brought her comfort.

    By day 3 or 4 of Butler’s medically induced coma, I was awakened by a phone call at 6 am from the hospital. Butler’s lungs could not handle being intubated, and his right lung collapsed. The doctors were calling me to get permission to put a chest tube in Butler. It was around this time the doctors decided to put a PICC line (Peripherally inserted central catheter) to deliver all of his medications to reduce the amount of times the nurses had to stick him with needles. I realized in that moment that as his wife, I was responsible for making these big decisions for him. I agreed to let the doctors put his chest tube in, and that started the process of days of waiting for his lungs to heal, so he could breathe on his own again. As long as he was intubated, he could not come out of his coma.

    Part 3 coming soon, stay tuned!

  • Butler’s Brain Cancer Story – Part one

    Go gray in may poster Royalty Free Vector Image

    Note: May is Brain Tumor Awareness month. This story is incredibly long so I will be posting this story as a series over the course of May to help bring awareness to brain cancer and its complexities.

    I’m starting this blog with the story of Butler’s brain cancer (Gliblastoma), because honestly, it is the catalyst that changed our lives forever. Even 18 months after his diagnosis, and post treatment, our daily lives are still affected.

    It is hard to pinpoint exactly when I started to notice symptoms of his brain cancer. He was diagnosed in November 2023, after I had to just about force him to go to the emergency room on Halloween. For about a year and a half I noticed behavioral and personality changes. He was more grumpy, withdrawn, had less patience, and the man I knew with tons of ambition and a “go getter” attitude was fading away. I remember about a month or so before he went to the emergency room he was taking his time getting to work one day; being slow, stopping the truck to look at stray cats, but WE WERE LATE to open our store!! Where was the man who insisted on being punctual everywhere we went? I did not understand what was happening to my husband, but all of these things could easily be explained away by very basic things.

    We moved from Florence, South Carolina back to my husband’s hometown of Moncks Corner, SC in June of 2022. This is around the time I was starting to notice his behavioral/ personality changes. I thought it was the stress of closing one store, and opening another in our hometown, moving, or maybe a new baby on the way. It is a lot of pressure being the sole provider for your family. By about April of 2023, Butler started to experience headaches, that soon evolved into full blown migraines. Every day, the headaches were there. I found out (after the fact) that he would open up our mattress store, and then go to sleep in his office because the pain was just too much to handle. He did not disclose the severity of his headaches for a very long time. The behavioral changes became more noticeable, and less easy to ignore.

    By October of 2023, I was homeschooling our daughter, taking care of our young baby, and running our mattress store the majority of the time. I didn’t realize it then, but my husband had quit smiling. He had quit enjoying the most basic things in life and had become a shell of his former self. Things like the closing of a car door would make him wince in pain. He was constantly wearing his sunglasses because the lights were too bright all of the time. He was in bed more than he wasn’t. We took him to an ENT doctor, who found nothing, even after taking a CT scan of his face. The ENT doctor sent in a referral to a neurologist, who never called me to schedule an appointment until my husband was in ICU in a come weeks later.

    On Halloween, as I prepped the kids costumes, I realized Butler had not left the bed in almost 48 hours. He slept constantly, did not eat, and did not even touch the bottle of water on his nightstand. I decided this couldn’t go on any longer. Even after repeatedly suggesting he needed to go to the emergency room, he repeatedly told me there was nothing they could do for him. Looking back, that made me realize how out of touch he had become. I called his mother crying, asking her to please come to our house and make him go to the emergency room. I was almost mean to him when I tried to get him out of bed to go. At the time, I felt it was the only way I could get this stubborn man to listen to me. Looking back, it is a moment that I regret.

    Within an hour of Butler’s mom taking him to the emergency room, a CT scan showed a tumor on Butler’s right frontal lobe roughly the size of a tennis ball. The midline of his brain had completely shifted. His migraines weren’t migraines at all, it was pressure from how large the tumor was. I packed up the kids, not knowing when I would be home again, and headed to the emergency room. He was transferred to Roper St. Francis Hospital in West Ashley that night. There wasn’t a single pain medication that could put him at ease. Morphine, Fentanyl, nothing touched it. Finally, the doctor gave him Dilaudid, which apparently is not handed to patients very freely. Immediately, Butler made the comment he did not feel right, and his heart rate dropped to 32 BPM. I told the nurse to note in his chart his body did not react well to the Dilaudid, and not to administer anymore to him. In between the time he was given the first dose, transferred, and me getting to the hospital the next morning, he was given 2 more doses. He was taken to CT 10 minutes after his 3rd dose, and when they wheeled him back to the room, I witnessed him code. He had a heart attack, and had a pulmonary embolism as a result. I thought I was watching the love of my life die right there, and I fought passing out as hard as I could. Our life was falling apart before my eyes.

    His doctors initially scheduled his craniotomy and tumor resection for November 3rd, but after his heart attack they decided to operate immediately. On November 1, at 3:22 pm, Butler’s neurosurgeon worked to remove the very large tumor that was pressing on his brain.

    This concludes part one of Butler’s Brain Cancer story. Follow along for part two.

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