Liberty “Libbie” Ashworth’s story is one of astonishing resilience and determination. At just 14, she faced a health battle that many would find overwhelming, confronting persistent symptoms that led to a shocking diagnosis. Despite numerous setbacks and dismissals by medical professionals, Libbie and her family fought tirelessly for answers. Her journey is a compelling reminder of the importance of self-advocacy in healthcare and the incredible strength of the human spirit.
Early Symptoms and Misdiagnosis
Liberty “Libbie” Ashworth’s journey with colon cancer began when she was just in the sixth grade. Despite her persistent symptoms—frequent sickness, lack of appetite, severe constipation, and back pain—Libbie’s concerns were repeatedly dismissed by various doctors. The dismissive attitude towards her symptoms often attributed them to typical teenage issues, including her rigorous dance schedule, which was initially thought to be the cause of her back pain.
As Libbie’s symptoms worsened, including the alarming presence of blood in her stool, her parents’ frustration grew. The doctors reassured them that these symptoms were normal for teenage girls. This repeated dismissal led to a critical delay in her diagnosis and treatment. Despite visiting multiple doctors, Libbie and her family were often told they were being overly cautious or that her symptoms were psychosomatic. This dismissive approach even led to a recommendation that she see a psychiatrist.
“It almost broke me because it really hurt having a medical professional that I’m supposed to trust with my life tell me it was in my head,” Libbie recalled.
The Turning Point
Libbie Ashworth’s health took a significant turn in 2020, marking a pivotal moment in her battle with colon cancer. After years of experiencing persistent symptoms like abdominal pain, fever, and blood in her stool, which were frequently dismissed by doctors, the severity of her condition became undeniable. Despite numerous visits to medical professionals, her symptoms were often attributed to common teenage issues or her intensive dance schedule. However, the persistent nature of her symptoms led her mother to demand a more thorough examination.
In late 2020, Libbie was rushed to the hospital with excruciating abdominal pain. A CT scan was performed, revealing a large tumor in her abdomen. This discovery was further confirmed by an MRI, which identified the tumor as being the size of a grapefruit. The diagnosis was devastating—Libbie had stage 4 colon cancer.
Her case underscores the importance of recognizing early signs and advocating for thorough medical evaluations. According to the National Cancer Institute, early-onset colorectal cancer symptoms, such as abdominal pain, rectal bleeding, and anemia, are critical warning signs. Studies show that recognizing these signs can significantly reduce the time to diagnosis and improve treatment outcomes. For instance, individuals with rectal bleeding had a shorter delay in diagnosis compared to those with other symptoms, although the median delay was still about seven months. These findings highlight the need for timely and accurate medical intervention (National Cancer Institute).
Treatment and Complications
After the shocking diagnosis of stage 4 colon cancer, Liberty “Libbie” Ashworth’s treatment journey began with immediate and aggressive interventions. In December 2020, she underwent a major surgery where half of her colon and one ovary were removed in an effort to contain the cancer and preserve her fertility. This was followed by a rigorous chemotherapy regimen at UnityPoint Health — Blank Children’s Hospital in Des Moines, Iowa.
The chemotherapy treatments brought with them a host of severe side effects. Libbie suffered from intense hand and foot disease, which caused her extreme pain, hair loss, and sores that extended from her mouth to her ileostomy. These debilitating side effects were initially perplexing to her medical team until further testing revealed that Libbie had dihydropyridine dehydrogenase (DPD) deficiency. This rare genetic condition prevents the body from properly metabolizing certain chemotherapy drugs, leading to toxic build-up in the system.
Libbie’s mother, Jennifer Jensen, played a crucial role in advocating for her daughter. After extensive research and persistent requests, the doctors tested Libbie for DPD deficiency, which confirmed their suspicions. With this new understanding, her chemotherapy dosage was halved, which significantly reduced the severity of the side effects.
Life with Cancer and Ongoing Treatment
Libbie Ashworth’s battle with colon cancer has been fraught with both challenges and triumphs. After her initial surgery and chemotherapy, she faced a daunting recovery process that included adjusting to life with an ileostomy. Despite these hurdles, Libbie’s determination to maintain a sense of normalcy and continue her passion for dance was unwavering.
- Living with an Ileostomy: Following her surgery, Libbie had to adapt to having an ileostomy, a surgically created opening in the abdominal wall that allows waste to exit the body through an external pouch. This adjustment was significant, both physically and emotionally. However, Libbie’s resilience shone through. Just three weeks post-surgery, she was back in the dance studio, proving to herself and others that she could still pursue her passion despite her medical challenges.
- Immunotherapy Success: For a time, immunotherapy provided a ray of hope. Immunotherapy, which leverages the body’s immune system to combat cancer cells, is particularly effective for individuals with genetic conditions like Lynch syndrome. Libbie’s response to this treatment was positive, resulting in a period where she had no evidence of disease and felt significantly better. This phase allowed her to regain some normalcy in her life, including regrowth of her hair and an overall improvement in her quality of life.
- Recurrence and Continued Fight: Unfortunately, the respite was temporary. At 17, scans revealed that Libbie’s cancer had returned, necessitating another round of chemotherapy. This recurrence brought back the grueling side effects and highlighted the ongoing nature of her fight against cancer. Despite the setback, adjustments in her chemotherapy dosage, due to the discovery of her DPD deficiency, helped mitigate some of the severe side effects she initially experienced.
- Support System and Advocacy: Libbie’s journey has been bolstered by a robust support system comprising her family, friends, and community. Her mother, Jennifer, has been a tireless advocate, ensuring that Libbie received the necessary tests and treatments, often pushing back against initial medical dismissals. The support extended beyond her immediate family, with community initiatives like bedroom makeovers and dance studio fundraisers aimed at uplifting her spirits and providing practical assistance.
List of Tips for Patients and Families
Navigating a diagnosis of colorectal cancer, particularly at a young age, can be incredibly challenging. Here is a comprehensive list of tips for patients and their families to help manage the journey more effectively:
1. Advocate for Your Health
- Persistence is Key: If symptoms persist despite initial reassurances, continue seeking medical advice. Early detection is crucial for improving outcomes in colorectal cancer.
- Detailed Record-Keeping: Maintain detailed records of symptoms, medical visits, and treatments. This can help in communicating effectively with healthcare providers.
2. Understanding and Recognizing Symptoms
- Know the Warning Signs: Common symptoms of colorectal cancer include bloody stool, stomach cramping, abdominal pain, bowel changes, and unexpected weight loss.
- Educate Yourself and Loved Ones: Understanding these symptoms can prompt timely medical evaluations and reduce the risk of delayed diagnosis.
- Explore All Treatment Options: Colorectal cancer treatment can include surgery, chemotherapy, radiation, and immunotherapy. Each option has its benefits and side effects, so discuss these thoroughly with your healthcare team.
- Consider Clinical Trials: Investigate clinical trials as they may provide access to new therapies that could be beneficial.
4. Managing Side Effects
- Customized Care Plans: If side effects from treatments like chemotherapy are severe, genetic testing for conditions such as DPD deficiency can help tailor treatments to minimize adverse effects.
- Supportive Therapies: Utilize supportive therapies such as physical therapy, dietary adjustments, and pain management techniques to improve quality of life during treatment.
5. Importance of Genetic Testing
- Get Tested for Genetic Conditions: Genetic conditions like Lynch syndrome significantly increase the risk of colorectal cancer. Genetic testing can inform treatment plans and surveillance strategies.
- Family Screening: Encourage family members to get screened if there is a known genetic predisposition, as early detection can be lifesaving.
6. Mental Health and Emotional Support
- Seek Counseling: Psychological support from counselors or support groups can be invaluable in managing the emotional toll of cancer diagnosis and treatment.
- Join Support Groups: Online communities and local support groups offer a platform to share experiences, gain advice, and find emotional support from others who understand the journey.
7. Plan for Long-Term Care
- Ongoing Surveillance: Regular follow-ups and screenings are essential for monitoring any recurrence of cancer. Stay diligent with your healthcare appointments.
- Prepare for Contingencies: Have a plan in place for managing potential complications or side effects that might arise during long-term care.
Community Support and Inspiration
Libbie Ashworth’s journey through cancer has been profoundly influenced by the unwavering support from her family, friends, and community. This collective effort has played a critical role in her resilience and ongoing battle with the disease.
Libbie’s parents, especially her mother, Jennifer, have been relentless advocates for her health. From insisting on thorough medical evaluations to researching genetic conditions like Lynch syndrome and DPD deficiency, their dedication has been pivotal in ensuring that Libbie receives the best possible care. Her father, Tim, also provided significant emotional support, often serving as a source of strength and encouragement during her most challenging moments.
The Panora community has shown immense support for Libbie. Initiatives such as the bedroom makeover by the nonprofit organization “My Happy Place” brought joy and comfort to Libbie during her difficult times. Such acts of kindness and solidarity have reinforced the importance of a supportive community in the healing process. Local dance studios and community members have also rallied around her, offering both emotional and financial support to help with her treatment and recovery.
Despite her own battles, Libbie has made it a mission to inspire and support other children facing cancer. She has become a voice for young cancer patients, sharing her story to raise awareness and offer hope. Her involvement with initiatives like Dance Hope Cure highlights her commitment to helping others understand that they are not alone in their fight. Through her participation, she aims to provide encouragement and practical advice to other young patients navigating similar challenges.
Maintaining a positive outlook has been crucial for Libbie. Positive affirmations and the support of her community have helped her stay mentally strong. Affirmations such as “I’m not just surviving; I’m thriving with a warrior’s spirit” have been part of her daily routine, helping her to focus on her inner strength and resilience. This practice has not only uplifted her spirits but has also encouraged others around her to adopt a positive mindset.
Libbie’s story has reached a wider audience through various media outlets and online platforms. By sharing her journey, she has raised awareness about the challenges faced by young cancer patients and the importance of early detection and persistent advocacy. Her narrative has inspired many to become more proactive about their health and to support cancer research and patient advocacy initiatives .
Hope and Healing: Libbie’s Legacy
Libbie Ashworth’s journey with colon cancer is a powerful narrative of resilience, advocacy, and community support. Diagnosed at 14 with stage 4 colon cancer after years of misdiagnosed symptoms, her experience underscores the importance of persistence in seeking medical attention and early detection. Despite the challenges, Libbie’s strength and determination shone through her rigorous treatment journey, which included major surgeries, chemotherapy, and genetic testing revealing conditions like Lynch syndrome and DPD deficiency.
The unwavering support of her family, particularly her mother, played a pivotal role in advocating for her care and ensuring she received the necessary medical evaluations. Community support also provided significant emotional and financial aid, reinforcing that she was not alone in her fight.
Libbie’s outreach efforts to inspire other young cancer patients further highlight her resilience. Her involvement in programs like Dance Hope Cure and her positive affirmations, such as “I am more than my diagnosis—I am a force of nature,” exemplify her strength and commitment to turning her struggle into hope for others.
Libbie Ashworth’s story is a testament to the power of resilience, advocacy, and community support. Her journey continues to inspire many, proving that with determination and a positive outlook, it is possible to navigate even the most challenging health battles.