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Rosie

On May 29, 2021, 18-year-old Rosie collapsed, unable to speak and move. At the ER, doctors misdiagnosed her with severe meningitis, ordered a spinal tap, placed a PICC line for antibiotics, and did not expect her to survive. She surprised everyone when she woke up a few days later as if nothing happened.

Over the next two weeks, she was back to her normal self. She walked at her high school graduation, attended her graduation party, and doctors pulled her PICC line. At the end of June 2021, an incredibly slight mouth droop sent Rosie back to the hospital. She was admitted for a week of tests which included a spinal tap that inadvertently saved her life by relieving high pressure on her brain.

After test results indicated nothing, Rosie looked to Boston Children's Hospital for help. They worked with her local hospital and scheduled more tests after discharge. It was during an MRI of her brain that doctors decided to expand imaging to her spine and saw the disease throughout the lining of both her brain and spine.

A surgical biopsy was scheduled and she was diagnosed with Diffuse Leptomeningeal Glioneuronal Tumour (DLGNT) in July 2021. She immediately started chemo (Carboplatin/Vincristine) for approximately 10 weeks. Side effects included major fatigue and constipation which landed her in the ICU. Doctors placed a shunt but she still had four additional high-pressure events and three shunt replacements. 

In October 2021, doctors started her on DAY101 (Tovorafenib). Rosie began to experience weakness in her toe that eventually spread to both her legs. Doctors performed two more shunt revision surgeries in January 2022. Complications from surgery led to a pneumonia infection leaving her in the ICU on a respirator unable to communicate. She was struggling and doctors stopped DAY101. During this time, a lack of repositioning, static pressure, and a massive rebound in disease growth caused Rosie to become paralyzed from the waist down.

 

She remained inpatient at Boston Children’s and started radiation at Brigham and Women's Hospital. The 28 craniospinal radiation treatments were incredibly effective. Rosie celebrated her final radiation treatment and 19th birthday in March 2022. 

After radiation, doctors treated Rosie with Trimetinib, a MEK Inhibitor. She began physical therapy inpatient at Spaulding Rehab learning how to live as a paraplegic. For the next 10 weeks, MRI results showed little to no growth which could be attributed to the residual effects of the radiation.

In July 2022, she was rushed back to Children’s Hospital due to massive blood clots running the length of both legs and malnutrition acquired while at Spaulding. Doctors stopped the Trimetinib, treated the malnourishment with blood transfusions, and attempted to minimize the blood clots with Lovenox.

In August 2022, doctors switched her chemo treatment to Selumetinib hoping for more rapid results against disease progression. In late November 2022, MRI results showed an unexpected but extraordinary decrease in the disease and so doctors continued her on Selumetinib.

In January 2023, MRI results showed significant growth. The tumour was now spreading to her dura mater. Rosemary celebrated her 20th birthday on March 9, 2023, and is continuing treatment at home with her family in Sterling, Massachusetts.

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