Taylor’s Journey
Taylor was born June 9, 2010 at 5:07am. She was born in Grand Island, Nebraska and moved to Fort Worth, Texas with her mom and brother when she was 5 years old.
Growing up she was rarely ever sick. So when her mom made her an appointment for a lump on her right hand, there was no cause for concern. The pediatrician told her mom that she likely had a ganglion cyst and referred them to a pediatric orthopedic surgeon. So 3 weeks later, they met with the new doctor and had an MRI right there. Dr S told them that ganglion cysts aren’t common in that area of the hand. She then informed them that it needed to be removed as soon as possible.
Four days later, on February 17, 2020, Taylor woke up early and was prepped for her first surgery. The surgery went great, she woke up to a purple cast, and was ready to go home. The next day, mom received a call from Dr S. Malignant. She knew what that meant. The rest of the call was spent in a fog getting more information. And then getting a referral to a pediatric oncologist.
Two days later, we met Dr H. He came in and had the official diagnosis- Alveolar Rhabdomyosarcoma. A rare and aggressive cancer. Surgery was scheduled for port placement, bone marrow aspiration, and to check for metastatic disease in the lymph nodes. More tests and scans were scheduled that next week, MRI, PET and CT scans.
March 6, 2020, Taylor began her first chemotherapy treatment. This is called frontline treatment. Week one of 43. Radiation was going to be scheduled in June.
Covid hit shortly after diagnosis, so things drastically changed again for Taylor. First cancer and then Covid which restricted visitors.
She continued to be NED (no evidence of disease) throughout frontline treatment. And December 5, 2020, she rang the bell!
Maintenance chemotherapy is standard protocol with Rhabdomyosarcoma and she was to start that in January of 2021. Maintenance chemo was a bit rougher on her and she had many chemo treatments canceled due to low blood counts.
They were counting the days until maintenance was to be done in July. They were both so happy to be almost done.
February 13, 2021, mom noticed that Taylor’s left eye looked swollen and puffy. And when she went to touch it, mom noticed it was hard. Mom instantly knew what that was. She took Taylor to the ER where ultrasound and MRI were done.
Moms suspicion was correct. Taylor’s cancer has come back. They had to wait for their oncologist to call and schedule new scans to determine if the cancer was anywhere else and if so, where and how much.
Scans showed metastatic disease now. Confirmed disease was in the left eye area, the chest bone area and her right shoulder. Taylor’s prognosis was now 10% survival.
But mom wasn’t going to let her daughter be a statistic. So they started a harsher chemotherapy treatment. 6 weeks later more scans to check for cancer. The left eye area tumor was both dying and growing. But the chest and shoulder tumors were gone.
Treatment change was given and a trial drug was chosen due to the tumors genetic markers. Taylor had to travel to Dallas for this treatment. 6 weeks later, the cancer progressed to spine, head, legs. So she was taken off the trial.
They went back to Fort Worth and tried another treatment until mom could get Taylor into a trial in Houston. 6 weeks after this treatment, scans were done November 1, 2021.
Progressive metastatic disease. The cancer had begun to spread faster than previously. It was everywhere. Lungs, bones, spine, both arms and legs. It was crushing vertebrae.
November 17, 2021, Taylor told her mom she no longer wanted treatment. So they began the process to enter into hospice.
December 7, 2021, at 9:11pm, Taylor took her final breath surrounded by her loved ones.
Every child’s cancer journey is unique. No two cases are exactly alike. There will be many similarities, but each child has their own story to tell.
This is Taylor’s story.
Her story hasn’t ended yet, we are now here to help other families of childhood cancer tell theirs.