Origin Story

January 9, 2024

After feeling pain in her leg that didn't go away, Greta was taken for an X-ray on December 19, 2023. The X-ray revealed a shadow in Greta's left femur (thigh bone), just above her knee. The family immediately got her a wheelchair and put a bed in the ground floor home office so that Greta would not need to manage stairs, and could avoid breaking the already thin, fragile bone. She was in some pain, but during her first few days in the wheelchair, she could be heard wheeling through the house singing,

"They see me rollin', they hatin', patrollin' and tryna catch me ridin' dirty..."

Based on the X-ray, the doctor immediately suspected sarcoma and scheduled an MRI and biopsy. As expected, the hospital staff was effusive about how sweet and polite Greta is. After these procedures, they were more certain it would be sarcoma and advised Alex and Sarah to start getting information about virtual school. They also connected the family with a pediatric oncologist to try to get her in for more imaging, and schedule time for her to get her chemo port. Their expected treatment plan was for chemo to begin January 2, and continue for two months, then surgery, then two more months of chemo. At this point, they fully converted the home office into Greta's bedroom.

The family had not yet used the "c" word when talking to the girls, but during a visit with the pediatric oncologist, Greta asked, "Is sarcoma cancer?" The doctor confirmed that Greta likely had cancer, and Greta let everyone know that she would rather hear everything and be scared because, "It's happening to my body so I want to know." The oncologist told Greta that the chemo would cause her hair to fall out. Luckily, Greta was not concerned about shaving her head, loves a beanie, and is no stranger to wigs.

Everything moved very quickly thanks to a combination of the family mobilizing and doctors finding ways to squeeze her in for appointments. The treatment team at Beaumont has been wonderful, and is part of a network of children's hospitals to share data, best practice, so they can be sure she is getting top-notch care. (Also, during this time, the family still managed to keep a semi-normal schedule for Zoë, getting her to swim practice, and working on her lines for the play.)

By this time, Christmas was approaching and Greta's pain was the main concern. Alex and Sarah wrote a pain management plan to try to stay ahead, but that meant multiple nighttime administrations. Her pain seemed to be improving before Christmas, and when she received a mailed package handed to her by her father she responded, "Thank you, housekeeping."

Christmas day festivities were relocated to the Erskine house, but it was still too painful to move much, so Greta received family visitors paraded to her new bedroom to deliver gifts. After Christmas, the pain improved, and the chemo port placement went really well - the doctor noted it was one of the easiest placements he has done. More good news: the results of a PET scan did not indicate cancer anywhere but left femur! And the family had a break from appointments until the New Year.

The first day/night at the hospital seemed to go smoothly until her pain increased dramatically. They did an X-ray that evening found out the "new" pain was a result of her leg being broken! She remained in a lot of pain and was scheduled to be put under to get a cast the next morning, with chemo that night. After the cast was put on, the pain lessened somewhat, but was replaced with nausea, vomiting, and fear of being touched and re-injured. With discharge dependent on her ability to drink water, they stayed one extra night in the hospital. Alex or Sarah slept on a cot in Greta's room each night. Between the pain, nausea, and general care, Sarah and Alex operated on virtually no sleep. The doctors let them know to expect bad nausea for the first three days after chemo during this first round, so they are working on a nausea management plan. Before being discharged, we celebrated Greta eating a chicken finger! Everyone was a bit nervous with leaving the hospital, but happy to be together at home. After Greta was able to eat and drink a bit more, she was able to do an "art challenge" with Sarah, while Alex and Zoë returned to school and then went to Zoë's swim meet.

The twenty-nine weeks of treatment began, with surgery scheduled for week 11.

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