Type of Sarcoma: Rhabdomyosarcoma
Date of Diagnosis: 2021
Location: Arm
At 26 years of age and just a couple of months following her wedding, Emily was diagnosed with stage four Rhabdomyosarcoma. Emily had been working as an esthetician and was using her hands a great deal, especially to apply the very popular eyelash extensions. She noticed pain and tension in her right forearm but logically attributed it to repetitive use. Then she started to notice her fingers losing their mobility and again, thought it was a trigger finger from holding a pair of tweezers most of the day. Eventually she began to feel a hardened mass in her forearm. Emily went to get an ultrasound and all the bells and whistles went off.
From that moment things moved very swiftly. This was right after Thanksgiving 2021 and Emily was told no one in town would be equipped to treat sarcoma cancer and she should contact the Mayo Clinic immediately. We did, and were at the first appointment by early December. After a biopsy, and at the appointment with a surgical oncologist, we were still waiting for the results.
The surgeon had reviewed the ultrasound and to his eyes and expertise assumed the type of sarcoma to be an Epithelioid. He informed me, Emily’s mom, Emily, and her husband, the only way to save her life was to amputate her arm. Not only her arm, but also, remove her shoulder and shoulder blade. There was a lesion under her armpit as well. He further informed us he would do scans, and if the cancer had travelled to her lungs there was really no point in amputating. In other words, no hope.
To say we were in shock is to put it mildly. We somehow made it through that horrible day and finally left Mayo after 9 pm at night. Emily and Mike, her husband, had driven, I was riding in the back seat. Emily thankfully, fell asleep on the drive back to Minneapolis, and mom in the back seat began to pray. Hard. I set a very firm intention the surgeon had it wrong. That her sarcoma was not Epithelioid…but another type. They still did not have the biopsy back. Over the next couple of days of waiting I enlisted everyone I could, in every circle of faith, to pray for the same.
On the third day of waiting, the surgeon called to say it was not Epithelioid but Rhabdomyosarcoma. Still cancer, but we celebrated, she was not to lose her right arm. Never underestimate the power of prayer and heartfelt intention.
Since then, Emily has been treated steadily and aggressively by the pediatric sarcoma team at Mayo. She is one of eight in a first-round clinical trial. The trial is designed to reduce the recurrence of tumors. We are grateful to be part of it. Emily is with the pediatric team since Rhabdomyosarcoma is a pediatric cancer. She both loves and is sometimes annoyed by being the oldest person on the floor.
She has had weekly chemo since January. She has lost all her beautiful hair and eyelashes. She rocks a wig and false eyelashes when she goes out! She has completed her six weeks of daily radiation.
And the tumor is shrinking. A lot. It is barely detectable.
Throughout it all, Emily has maintained a state of grace. She has had her ups and downs, to be sure. But her attitude is one of positivity and hope. We all know it is not her time. We continue to pray and channel our energy toward that outcome.
It is simply not her time.
