Kelly L. - Quilt Finished in 2008
Born: September 22, 1992
Illness: Grade 4 Glioblastoma Multiforme Tumor
Kelly L.'s Story
Written by Kelly's mom in November 2007
Kelly was born on September 22, 1992. She was born at 36 weeks, which is pretty good since she is a twin. She had some fluid in her lungs when she was born and was in Neonatal Intensive Care for 4 days. She has a twin sister, Megan. They also have a 10 year old sister, Shannon. Since Kelly was born, she has always been a happy, easygoing child.
We noticed Kelly had some hair loss when she was 8 years old. This led us to discover that she had a positive ANA, or antibodies that fight against herself. That caused the hair loss. She also has antibodies in her thyroid and takes synthroid to protect her thyroid and to help the hypothyroidism she has developed. She is also gluten (wheat) intolerant, which we suspect is also related to her autoimmune disorders. But all of these things seemed insignificant when she was diagnosed with a brain tumor in 2007 when she was 14 years old.
In April, 2007, Kelly had a seizure. A CAT scan revealed a small mass in her brain. She was admitted to Children’s Hospital of Orange County (CHOC). An MRI showed the mass to be about 2 inches into her brain, and since it was round and clean, all the doctors that looked at her scans didn’t think it looked dangerous. They thought it would be best to watch it for growth instead of going into her brain if it wasn’t absolutely necessary. A follow up MRI was scheduled for 3 months later to watch it.
Two months later in June, she suddenly started having severe headaches and some vision problems. She was also having trouble with her balance. She was admitted to CHOC again for tests. This time her MRI did show growth in the mass, so her pediatric neurosurgeon decided it was time for a biopsy since it was growing. The pathology from the biopsy came back as a grade 2 glioma. Brain tumors are graded 1 through 4, with 4 being the most malignant, aggressive type of tumor. On July 16, her neurosurgeon perfomed a craniotomy to resect (remove) her tumor. The surgery was very successful and her MRI the next day showed no visible signs of tumor. However, the pathology came back as a grade 4 glioblastoma multiforme tumor, the most malignant kind of tumor she could have. The pathology report this time was more accurate than the biopsy because they could look at all of the the tumor tissue, not just the small samples they took for the biopsy. This news was very hard to take, and we spent the rest of the week meeting with oncologists and radiation oncologists planning her treatment while Kelly recovered from surgery.
She began a round of six weeks of radiation, along with an oral chemotherapy. She also had another surgery to have a port-a-cath placed. At the end of the six weeks, she had a four week rest period, and then her first post radiation MRI. Unfortunately, the MRI showed recurrent tumor growth near the site of her original tumor. Once again, she was scheduled for a craniotomy to resect the tumor. By now, Kelly felt very connected to her neurosurgeon, so she didn’t take the news too badly. She has such trust in him. On October 22, 2007, she had her second successful craniotomy and tumor resection. This time we didn’t feel as confident as we did after the first surgery, since it has recurred so fast and while she was receiving radiation and chemotherapy treatments. On November 16, 2007 she had gamma knife radiosurgery to try to create a boundary around the area where her tumors have been to keep cancer cells that are left from spreading to other parts of her brain. From November to present she receives Irinotecan (also known as CPT-11) and Avastin given every other week.
