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Jilly has been diagnosed with Chordoma, a rare cancer that occurs in the bones of the skull base and spine. To learn about Chordoma in greater detail, the Chordoma Foundation has a lot of very helpful information ( https://www.chordomafoundation.org/understanding-chordoma/
The first tumor was discovered on January 1st, 2017 as in incidental finding after Jilly, mom, dad, and big sister were in a rollover car accident. When the ER doctors did a full body scan on Jilly, they not only found fractures in her hip, spine, scapula, and a punctured lung, but also an unidentified mass in her brain. After recovering from her various injuries, Jilly was taken to a neurologist who decided that a biopsy needed to be done in order to identify the mass. In April 2017, Dr. Lissa Baird at Doernbecher Children's Hospital ( https://www.ohsu.edu/people/lissa-c-baird/1AA1A9E7961A42F48AF7DE4FD2978228
) performed the biopsy, the results of which told us that this was a cancerous Chordoma tumor that needed to be removed as soon as possible. The following May 2017 was the surgery to attempt to remove the entire tumor, which took around 13+ hours. The biopsy and tumor removal were both endoscopic, meaning the surgeon went through the nasal cavity to remove tissue from the skull base. Dr. Baird got the entire tumor out, barring any microscopic cells that she could not see.
Normal procedure would be to follow up the surgery with radiation. However, Jillian has a genetic disorder called Li-Fraumeni Syndrome.
"Li-Fraumeni syndrome (LFS) is an inherited familial predisposition to a wide range of certain, often rare, cancers. This is due to a change (mutation) in a tumor suppressor gene known as TP53. The resulting p53 protein produced by the gene is damaged (or otherwise rendered malfunctioning), and is unable to help prevent malignant tumors from developing. Children and young adults are susceptible to developing several multiple cancers, most notably soft-tissue and bone sarcomas, breast cancer, brain tumors, adrenocortical carcinoma and acute leukemia."
Jilly does not have a mutation of the TP53; she has a deletion. Given this information, we opted not to have radiation treatment following this first resection and moved forward with quarterly MRI scans.
To learn more about Li-Fraumeni syndrome, follow this link: ( https://www.cancer.net/cancer-types/li-fraumeni-syndrome
Following the tumor removal, Jilly had to get quarterly scans to monitor any tumor activity and make sure the cancer was not coming back. In April 2018, another tumor was found at the base of her skull near Jilly's carotid artery and optic nerve. The neurologists concluded that the best way to surgically remove this tumor would be by performing a craniotomy. In June 2018, the day after Jilly's graduation from Parkrose High School, she had her craniotomy, once again performed by Dr. Baird at Doernbecher. The craniotomy took 15-16 hours to complete. Dr. Baird got as much of the tumor out as she was comfortable with, but it was in an incredibly risky spot, so a small piece near the carotid artery remained. Since this tumor was so close to the optic nerve, Jilly had double vision, and her right eye was not tracking very well, so she had to wear eye patches and special glasses in the months following. After surgery, Dr. Baird recommended Proton Radiation therapy, a super specialized cancer treatment that is only offered in a few places in the U.S. Proton therapy is a highly focused form of radiation that uses ultra precision to target tumors and reduce radiation exposure to healthy tissues. Learn more about Proton Therapy Here: ( https://www.sccaprotontherapy.com/proton-therapy/what-is-it
). Luckily, there is a Proton center right here in the Pacific Northwest located at the Seattle Cancer Care Alliance ( https://www.seattlecca.org/
). Jilly was scheduled to begin her eighth-week Proton radiation treatment towards the end of August, until a recent scan showed a new tumor had grown since her last surgery, in addition to the small piece of the other tumor.
This is the story so far, and we will be posting updates on this site moving forward. Thank you, everyone, for your love and support.