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Skye's journey of fighting NC

June 2019, a few days after Skye had graduated middle school, Skye went to a graduation dinner with her family. She had been complaining of back pain for a few months but since she had been growing in height rapidly, her family assumed she was just dealing with growing pains. But finally, they decided to take Skye to the ER following the dinner, thinking that the doctors would just repeat that her pain was natural. Instead, an X-ray showed that she had a concerning abnormality in her lungs and she was transferred to Children’s Hospital Los Angeles the following morning. After a number of tests, she was diagnosed with the umbrella term of cancer before receiving a florescence in situ hybridization (FISH) that showed that she had NUT Carcinoma.

In Skye’s case, and the cases of many other NUT Carcinoma patients, her cancer had already metastasized --meaning that it had already spread to other areas from the lungs-- including the spine, which had been the cause of her back pain.

Treatment

Skye began her battle with NUT Carcinoma on July 1st with chemotherapy, the first of 6 rounds. In the original plan for treatment, Skye would have undergone three rounds of chemotherapy before removing the lung with the main tumor. The first two rounds were highly effective and greatly shrunk the tumors, but given the aggressive nature of NUT Carcinoma, all of the various chemo treatments and later radiation treatments failed and she was unable to receive surgery.

Towards the beginning, right as she was beginning to lose her hair, Skye shaved her hair off as a symbol of her commitment to her battle. During these treatments, all intended to be outpatient- meaning that she would not have to stay at the hospital, Skye began to experience high fevers and was admitted to CHLA where she finished all 15 round of radiation. During that time, Skye suffered from an infection that kept her in isolation which severely weakened her body but also lead to the birth of the #skyestrong bracelet campaign. 

Following another scan, the doctors discovered the reason behind the fever was another tumor meaning that while radiation did decrease some of her cancer, all the treatments were ultimately ineffective and Skye’s family was told that CHLA could no longer treat her. 

There was only one option left, a clinical trial at the Dana Farber Cancer Research Institute where Skye would be the third child to participate. And through generous donations and support from strangers and friends, Skye and her family were able to travel to Boston safely and participate in the clinical trial. After Skye regained some strength, and many postponements, Skye and her family were able to travel to New York for her wish through the Make-a-Wish Foundation. But during the trip, Skye began to feel excruciating pain once again which led doctors to take another scan after their return. There, it was discovered that the clinical trial medication had also become ineffective and Skye and her family were sent back home on January 2nd. 

After two weeks of nontraditional treatment, Skye became increasingly weak and in pain and she was put in 24 hr hospice care at home. Skye passed away on January 31st at 10:30 pm surrounded by her family, including her grandparents who had come from Japan, following worship songs, prayers, and communion. 

Her faith

Through the unpredictable ups and downs of Skye’s battle with NUT Carcinoma, one constant was her unwavering faith in  Christ. Skye and her family frequently sang worship songs together right before a big step in Skye’s battle and it truly was Skye’s faith that kept her #Skyestrong. 

Skye repeated the verse from Phillipians 4:13 daily. 

"I can do all things through Christ Jesus who strengthen me." 

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