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  • Why we love The Lonon Foundation & how it helps our daughter thrive through her dad’s cancer

    One of the biggest factors in preserving our daughter’s mental well-being through this experience with Butler’s cancer, is The Lonon Foundation. About a month or so after Butler came home from the hospital, I received a phone call from one of the child life specialists with the foundation. It was a lovely phone call and I was quickly relieved to have an outlet for Ella. The Lonon Foundation was created in 2016 after the founder, Anna Lonon, lost her husband to cancer. She had 2 children to raise after the loss of her husband, and she realized there was a need for children who have a parent battling cancer. Anna herself is also a breast cancer survivor! The Lonon Foundation has a wonderful program for children ages 5-17 called Uplift (Using play, love, inspiration, and friendship as therapy.) The program runs August – May, providing free in person and virtual events, allowing children and their families to connect with others also battling cancer. The program also gives children and their families the chance to “escape” the every day stresses that come with cancer.

    The first blessing we received from the Lonon Foundation was a family resource kit in the mail. It contained little fidget toys like pop its, mindfulness cards, and resource books for both the child and parent (both of which continue to be helpful for us and Ella.) Ella’s book provided her with stories from other kids and teens who have had a parent dealing with cancer, and my book gave me ideas and ways to discuss the situation at hand with her. We found so much value in those books! The books are listed here: 1) My Parent Has Cancer and it Really Sucks: A Guide for Teens by Marc and Maya Silver 2) How to Help Children Through a Parent’s Serious Illness By Kathleen McCue. Our first in person outing with Uplift was at a Riverdogs Game in the spring of 2024. We all went together as a family, and I really appreciated that our 1 year old son was able to go and experience everything as well. It provided us a wonderful opportunity to spend time together as a family, which we would not typically have been able to afford on our own. When we found out about Butler’s cancer, our business took a huge hit, ultimately closed, and we have been in a place of financial struggle ever since. I don’t know if other families experience the same financial hardships we have, but the family outings we have been able to experience through Uplift have been invaluable to us.

    Another wonderful resource The Lonon Foundation offers is their mini-grant program in which families within the foundation can apply for periodically. Families can receive up to $500 to go towards things like the children’s extracurriculars, schooling, counseling/grief services, gas, medical expenses, etc. Families who are members of the Uplift Program qualify for the mini grant. Our family has been awarded the grant in the past and it was so incredibly helpful during the financial stresses our family has endured.

    Before my family’s life was so deeply affected by cancer, I had never known anyone personally who battled it. It always felt like something that happened to other people, specifically older people. Never in my life did I think it would so badly affect my husband at such a young age. The reality is, cancer rates are rising, with now 1 in 2 people eventually being diagnosed. Cancer is also reaching people who are much younger now, and those people have young children, and families they are trying to raise. Those children and families need resources, and people to connect to. Butler’s father passed away from the same brain cancer he now battles in 1999, when Butler was just 8 years old. Even as an adult, I see how losing his father has affected him, and how it affects his daily life. Resources like The Lonon Foundation were not available when Butler was a little boy. I often find myself wishing he had that kind of outlet as a young boy, because I know the pain he endured. I have become so passionate about the Lonon Foundation for that very reason, and I am thankful everyday that my children have such an amazing outlet for themselves. You can have the most healthy environment for your children to grow up in, the most support you can offer in those trying times, but children are wildly perceptive and they feel everything.

    This month, on June 21st, our family is looking forward to a soccer game at the Charleston Battery as the Lonon Foundation is honored as the community hero of the match. A portion of each ticket sale will support the foundation’s mission to help children heal after a parent’s cancer diagnosis! You can click the link below to purchase your ticket, and help support the Lonon Foundation: https://pa.exchange/marketplace/9d48269a-e4d3-11ef-a441-6b5302fe402d/storefront/9d482884-e4d3-11ef-9baf-fde89e156854?fbclid=PAZXh0bgNhZW0CMTEAAafouYi_ANxJ00dXss4oJaOOIxgDAyQ5NKJ8ZMlI22xr3djeEf14gLwHh3mAAg_aem_-y5-sK1EpcEgvP8tso7DXA

    The Lonon Foundation and the Uplift program have been invaluable to our family. My children, myself, and my husband all benefit greatly from it and I am so thankful they found us! If you have been diagnosed with cancer, or know someone who has and they have children, I definitely recommend letting them know about the Lonon Foundation. You can donate to The Lonon Foundation and help support their mission by clicking the link here: https://www.thelononfoundation.org/get-involved/donate/

  • 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!

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