Juliet's Spinal Cord Tumor Fund

It’s with a heavy heart that I write this and share the news of Juliet’s diagnosis with you all.

On Tuesday, December 19th, the Sevigne family’s beautiful 10-year-old daughter, Juliet, was scheduled for an MRI to look for the cause of increasingly painful and debilitating muscle spasms in her neck and back, and growing weakness in her right hand and arm. Several hours later, their world stopped when Michelle received an urgent late-night call from Shriners Children’s Hospital about the MRI results. A significant fluid collection was seen around Juliet’s spinal cord and a tumor was suspected. She was strongly advised to bring Juliet to Connecticut Children’s Hospital early the following morning to be admitted for further testing. By the following evening, Wednesday, December 20th, their sweet, witty, tenacious, creative Juliet was diagnosed with a central nervous system tumor growing in the tissue of her spinal cord, compressing and rotating her spinal cord and causing her excruciating muscle spasms and arm weakness. After an overnight stay, her family was told to bring her home for Christmas, but to return to Connecticut the morning after Christmas where she would be admitted and scheduled with the pediatric neurosurgeons for biopsy and resection of the tumor. She was in the operating room for 8 hours, but the surgery was not successful. The margins between her tumor and spinal cord tissue were not clear, and because her spinal cord had been moved and rotated by the growth of the tumor, surgeons were only able to safely remove about 20% of it.

After 10 days in the hospital, Juliet is home with her family, recovering from surgery, and beginning many months (maybe years) of physical therapy to try to regain as much of the sensation and function in her right arm and hand as possible (the surgery left her with complete loss of strength and sensation in her right arm and hand). She has been referred to the pain management team at the Children’s Hospital for more long-term pain management of her continued muscle spasms from the remaining tumor while they await lab results to determine which type of tumor she has and to look for what’s called a molecular target so the oncologists can make specific treatment recommendations. Although Juliet’s tumor has already been confirmed to be a low grade glioma, which is considered benign, that isn't as reassuring as it may sound. The conventional treatment options are the same as for cancer - chemotherapy and more surgery - since the line between low grade gliomas like Juliet’s and higher grade malignant gliomas is more of a gradual spectrum based on rate of cell growth, rather than a black and white boundary between cancer or not cancer. For now, the family will be focusing on Juliet’s surgery recovery and physical therapy, collaborating with the neurosurgical team and oncologists at Connecticut Children’s Medical Center, and considering all their options, including a second opinion in Boston.

Complicating the family’s need to seek treatment for Juliet and also care for her in her current condition, Juliet and Michelle were in a serious car accident on their way home from Juliet’s first hospital stay in Connecticut shortly before Christmas. They were unharmed, but their only vehicle was totaled.

Many friends, family members, and community members have asked how they can help. There are hospital visits, maybe future overnight stays, time away from work for Johnny, childcare expenses for Juliet’s 3 younger brothers so Michelle can care for Juliet, trips to Boston for a second opinion, and other yet unknown medical expenses ahead. There is also the immediate need for a replacement vehicle for the family to use to get Juliet to appointments and physical therapy. Relieving Juliet’s family of some of the financial pressure of this crisis would allow them to focus on Juliet’s treatment plan and her healing and recovery. So, it’s with humility and deep gratitude that we ask for your donations to support, to offer hope, and to care for Juliet and her family during this scary ordeal and this time of need. Every donation, regardless of the size, will make a meaningful difference for Juliet and her family.

Thank you in advance, from the bottom of our hearts, for your help, your generosity, and your compassion. Please, share this fundraiser with your friends and family members and help us spread the word.