Butler was able to come home about a week before Thanksgiving – his favorite holiday! The day he came home from the hospital was an exciting, yet scary day. I have taken care of my mother in the past after 2 broken hips, and I was more afraid of Butler falling and hitting his head than I was of my mom falling. Everything seemed so fragile and heavy at the same time. He was a fall risk the entire time he was in the hospital, so wasn’t he a fall risk at home? Butler was never a breakfast person, but he worked up quite the appetite in the hospital, and became used to eating breakfast. The first morning he was home, he woke up, and asked me for pancakes, hash browns, eggs, and bacon!! I was amazed, excited (I always told him he needed to eat breakfast), and overwhelmed! Could I make a breakfast that size, every day? What I didn’t know at the time, was he was still in a period of deep healing, which required lots of nutrients, and rest. I was happy to do everything I could to help the healing process along, no matter how overwhelming. We made it through that period just fine.
I was never prepared for the amount of sleep he would be sleeping. He slept all the time, which considering everything he had gone through, made sense. Almost immediately, we had occupational therapy, physical therapy, speech therapy, and a home nurse set up and coming to our home fairly often. There was so much going on when he first got home. Everything was overwhelming for me, for him, for the kids. Too many people in the house, too many sounds, too much going on overwhelmed Butler greatly. On Thanksgiving day, my family and his family came together at his moms house to eat. He spent the majority of that time sleeping in his moms room. It was a different Thanksgiving than what we usually experience, but we were just happy to have him under the same roof as us. If he wasn’t doing some kind of therapy or eating, he was sleeping. This went on for a few months after he came home, and it honestly got to a point where it greatly concerned me. I wondered if it was normal for him to be sleeping like he was months after his surgery. I wondered, if this was our new normal.
Butler’s treatment consisted of one month of daily radiation (45 minutes daily, Monday through Friday) alongside one month of daily Temozolomide (Chemotherapy – this was a daily pill, not an infusion.) The radiation treatment was incredibly uncomfortable for Butler. You cannot move during your radiation treatment, and the location where the radiation hits has to be exact every single time. To ensure this, Butler was fitted with a plastic mask that was molded to his head. It covered his entire head, part of his neck, and would be strapped down to the table while he was in it so he could not move. It was imperative that the treatment be precise. I remember his beard was so long and thick when he was fitted for his mask, that he couldn’t trim it the entire month he did radiation to ensure it fit exactly as it needed to. The goal of the radiation was to kill any Glial cells that were left behind from the tumor. While the entire tumor was removed, microscopic Glial cells can be left behind, and grow new tumors. Glial cells are cells already in your brain, they serve a purpose, but they have these tentacle like arms all around it that grab onto brain tissue and can cause new growth, so we wanted to eliminate any possibility of Glial cells left.
Butler started his treatment towards the end of December. Every day, we drove to Roper Berkeley, (thankfully we did not have to drive to the Cancer Center in West Ashley every day) for Butler to do his treatment. We did Christmas as usual – mostly- we had family come to our house this time so as to not wear Butler out. We celebrated our daughter’s 10th birthday, a day I was so thankful he was able to be with us for. Things *almost* felt normal. Most of the time, I think people assume chemo makes the patient’s hair fall out. While that is mostly true, it depends on the type of chemo. Butler’s hair fell out from his radiation, and it only fell out where the radiation hit his head. He head a line about 2 inches thick around his head where his hair fell out. He did wind up shaving it more towards the end of his treatment. His scalp became red, flaky, and inflamed from the radiation. I used my homemade Calendula Salve to help soothe it.
On January 19th, 2024, Butler completed his radiation treatment, and first month of chemotherapy. He rang the bell at Roper Berkeley, and when we went home that evening, he burned his radiation mask. He took the month of February off to give his body some time to recoup. March 2024 started the long and grueling process of 5 days of chemo every 28 days. We learned, thanks to our Neuro-Oncologist at MUSC, the best time for Butler to take his chemo was at night on an empty stomach. That gave his body a chance to better absorb the chemo. He would take Zofran for nausea about 30 minutes prior to his chemo. We had a great system down. During the weeks he was on chemo, I would try to make dinner earlier so he could eat and give his stomach a chance to digest. I tried to give him the space and grace he needed to get the extra rest he needed during those weeks. The dosage of chemo on his 5/28 rounds was higher than his month of chemo, and around month 6 or 7, his oncologist upped the dosage again. His body seemed to handle the chemo decently well, with exhaustion being the only main symptom. There were a couple of times where he would get pretty sick, and by month 8 he hit a wall where he didn’t know if he could keep going. I told him I would support him no matter what he chose to do. If he chose to end his treatment, I would stay right by his side. This was his treatment, his decision. But the man is strong willed, and he kept pushing through, finishing his treatment in March of 2025. The long, drawn out process was finally over, and on April 21st, he had his first clean MRI post treatment.
Butler will continue to have routine MRI’s every 2 months or so to monitor his brain.
I would like to take this opportunity to thank everyone who has prayed for my husband and our family, to everyone who has given to our family. When Butler first went into the hospital, I truly did not know how my family would make it through. There was so much uncertainty and fear, and I have seen firsthand the work of God through this entire situation. I learned we have the most amazing village around us, and it warms my heart like you wouldn’t believe to see the support for our family. We love all of you, and “thank you” will never feel like enough. We are still traveling this road, and will for the rest of Butler’s life; but having the support system we have makes it all the more better.
