Abbe Pannucci was diagnosed with stage 4 embryonal rhabdomyosarcoma, aged 10, in November 2010. The tumour was located on the abdominal wall with metastatic lesions on the pelvic bones and sacrum. Abbe was treated at Children’s National Hospital, Washington DC.
She received 54 weeks of vincristine, irinotecan, cyclophosphamide, doxorubicin, ifosfamide, etoposide and dactinomycin. After round 19 of chemotherapy, the shrunk tumour was surgical removed. Abbe was then given five weeks of radiation therapy to each of the metastatic locations, at the University of Maryland Medical Center.
Abbe is now 23 years old and has been cancer free for over a decade. She lives with the side-effects of the treatment she received.
On November 1st, 2010, the day after Halloween, I woke up in the middle of the night with severe stomach pain. Initially, my parents and I thought my discomfort was due to the large amount of candy I ate during trick or treating. However, when I woke up the next night feeling like I had knives stabbing into my back we knew something was wrong. We went to the pediatrician on November 2nd, now thinking my stomach and back pain were either a UTI or a pulled muscle. Upon examination, the Dr ordered an immediate ultrasound, which showed an irregular mass in my pelvic region. We then went to the emergency room at our local hospital in Frederick, Maryland where they performed a CT scan. The results confirmed the presence of a large mass, which they presumed was on my uterus.
The ER doctor, not suspecting that a healthily and athletic 10-year-old girl could have cancer, referred me to a gynecologist. The appointment was a week away. After looking at the CT scan from the ER – without even needing to examine me – the gynecologist felt that we should head straight to Children’s National Medical Center in Washington DC. A day later, I was in surgery for a biopsy of the mass. On November 20th, the biopsy results came back showing that I had stage one embryonal rhabdomyosarcoma. The tumor was now the size of a softball and I was constantly in pain. Immediately following this news, I was scheduled for more CT scans, PET scans, MRIs, a bone marrow biopsy, a lymph node biopsy, and a central line placement surgery. The results of these scans showed three more metastatic lesions on my pelvic bones and sacrum. The final diagnosis on December 3rd was stage four embryonal rhabdomyosarcoma.
I began a rigorous chemotherapy regimen which included 54 rounds of vincristine, irinotecan, cyclophosphamide, doxorubicin, ifosfamide, etoposide, and dactinomycin. The tumor responded so well to this treatment protocol that my oncologist scheduled me for a removal surgery after round 19 of chemo. Due to the initial thought that the tumor was on my uterus, I was also scheduled for a full hysterectomy. On May 3rd 2011, the tumor, which had shrunk to the size of a grape, was removed. During this surgery, the doctors determined that the tumor was not at all connected to my uterus and was actually attached to my abdominal wall, therefore, they would not have to perform the hysterectomy.
Following this procedure, I began five weeks of radiation therapy at the University of Maryland Medical Center to each of the metastatic sights in my pelvis. During this time, I continued the chemotherapy regimen at UMD.
The next few months of treatment included more scans, many blood transfusions, hospitalizations for fevers, cardiac evaluations, and countless other side effects. However, this did not stop me from attending school when I wasn’t in the hospital, seeing my friends, going to the beach, and advancing to a second-degree black belt in karate.
On September 12th 2011, a routine MRI revealed that my cancer had completely gone away. The metastatic lesions were no longer detected, and the original tumor had not come back since my surgery in May. I would still have to endure three more months of chemotherapy, but our hopes were high. December 12th, 2011 was my last day of chemotherapy. I walked out of the hospital with a smile on my face.
By Valentine’s Day of 2012 my central line was removed and my stomach truly only hurt from heart shaped candy.
Now, I am 23 years old and have been cancer free for over a decade. During the last 10 years I have competed in varsity cross country, won a title kickboxing fight, graduated high school with a 4.0 GPA, and graduated college with a bachelor’s degree in biotechnology. However, I still live with the side effects of the treatment I received. Although I didn’t have to get a hysterectomy, the intense radiation exposure to my ovaries and uterus has caused me to be on hormone replacement for the rest of my life and am unable to get pregnant. The amount of chemotherapy I received also puts me at high risk for cardiac issues for the rest of my life.
My experience with cancer and my continued life with the resulting effects has inspired many of my actions moving forward. Now that I am in remission, I have made it my goal to do whatever I can to lessen the severity of a cancer diagnosis for others. Since obtaining my degree, I have been working as a researcher in a laboratory at UPMC Hillman Cancer Center. In doing so, I have learned the skills required to investigate cancer and create novel treatments. I plan to continue to work in oncology research for the foreseeable future. Alongside my work in the lab, I enjoy volunteering for the child life department at the UPMC Children’s Hospital. As a volunteer, I spend time visiting and playing with children staying inpatient and help maintain the art rooms and playrooms. The child life team at CNMC had a hugely positive impact on me when I stayed at the hospital for extended periods. I hope I can pay this forward while volunteering.
I also dedicate much of my time to patient advocacy for a team of scientists and doctors that are developing next general CAR T-cell therapy for childhood solid tumors. Our team, called NexTGen, is part of a Grand Cancer Challenge initiative that hopes to change the paradigm of treatment for childhood solid tumors using CAR T cells. As an advocate, I provide a perspective that allows for a patient-focused development of NexTGen’s science and clinical trials.
I am thrilled to be able to create Abbe’s Arc together with my family. I plan to use my story along with the wonderful platform and amazing resources that Alice’s Arc has built to bring a greater awareness to childhood cancer. Soon, Abbe’s Arc will be holding fundraisers to support the creation of newer and better treatment options for children diagnosed with rhabdomyosarcoma.
Read all the latest fundraising news, charity news and commentary on childhood cancer.
A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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