15 year old Alexa was off to Yale – but not for classes. She had been having back pain and some trouble walking, but over the counter medication wasn’t helping. Then, while on a picnic, she suddenly couldn’t walk. Her entire right side, hip, and back were swollen. After a visit to her doctor and an MRI, they waited for the results.
“When the doctor called us, and mom got very scared and then started crying, I knew it was bad,” Alexa said. That’s when she was sent to Yale for a biopsy. The results showed an osteosarcoma on her pelvic bone, and sent her to get ready for treatment.
“They wanted me to lay down for an EKG, and it was unbearable, so the doctor thought maybe I also had a blood clot. They tried blood thinners, but they didn’t work,” Alexa explained. After more testing, they were surprised to learn her tumor was going through a vein all the way to her heart.
Alexa said this is where the options became scary. Because the tumor was also wrapped around nerves running down to her legs, one option was complicated surgery. They would need to open her up back to front and down to her waist, to remove the entire pelvic bone and replace it. If successful, she would need to be in bed for six months and be in physical therapy for up to a year after.
But before Alexa could even have the surgery, she would need to go through eight months of chemotherapy.
“The Yale doctors didn’t want to do this, and I didn’t want it either,” Alexa said. Her mom, Karen, also said no.
What they chose to do instead, is six weeks of proton therapy, plus chemotherapy, at Massachusetts General. All the doctors told her this would kill the tumor, but it would remain inside of her. The first week was really difficult, but after the first few rounds, she is mostly pain-free.
“Alexa walks with a limp, but when in pain or going long distances, she uses a wheelchair,” Karen, explains. Alexa’s goals? To walk better and go back to school. She is a junior this year and has a home tutor for now.
“Ever since I started this journey,” Alexa shared, “I lost out on a lot because of this. I’m a shy person – in my own bubble. Because of this experience, I have expanded my bubble and accept all this amazing help from all of these people. Thank you.”
During her treatment, Alexa stays five days at the hospital. Karen drives back and forth daily because the hospital won’t allow her 10 year old son to stay with them. Compass to Care has been helping with gas and toll fees so Karen could concentrate on Alexa’s care.
“A special thanks to everyone that helps Compass to Care with their needs, because that let’s Compass to Care help us. We are really grateful,” Karen said.
Side note: Alexa lost her father from bone cancer in 2015. Her mom, Karen, finished 8 months of treatment for breast cancer in 2017 and is currently in remission.