Katy Tootle's Cancer Fund 2018

Katy Tootle is my beloved daughter, age 16 1/2. On December 30, 2015, Katy underwent emergency surgery to remove what was thought to be a massive, right ovarian cyst. The mass contained almost one gallon of fluid and was the size of a bowling ball. The mass measured 20 cm x18 cm x 1 cm. This is considered huge by medical personnel. The final pathology report indicated that ovarian cancer cells were present in the fluid of the mass was actually a tumor. The type of tumor that produced the cancer cells is called, "Juvenile Granulosa Cell Tumor", and is a type of ovarian cancer (a solid stromal sex chord tumor) that is considered malignant and a rare orphan cancer in adolescents. It is now understood that this cancer is the result of a DICER1 gene mutation. The tumor grew in the right ovary and was so large that the right ovary was destroyed. The Chief of Pediatric Surgery, Dr. Robert Foglia, at Children's Medical Center (Dallas), performed Katy's initial surgery to remove the tumor. Dr. Foglia called me on the evening of January 19, 2016, to advise the pathology report had been lost in a "system glitch" for the past 20 days, but now had been found. He was calling with the results. What was initially thought to be a cyst was a tumor - cancer. The fluid in the encapsulated tumor contained stromal cancer cells.

Dr. Susan Sugerman is Katy's pediatrician and has been very supportive and very knowledgeable in caring for Katy with her learning disabilities and now with her cancer diagnosis.

Katy received chemotherapy at the Pauline Allen Gill Center for Cancer and Blood Disorders at Children's Health (Dallas) and is one of the nation’s premier programs for children with malignant cancer and blood disorders. The center offers a full array of the latest diagnostic capabilities and therapies available. Katy received 3 rounds of chemotherapy beginning in February 2016 with the last day on April 28, 2016. The chemotherapy agents they used for chemo were "BEP" - Bleomycin, Etoposide, CisPlatin (platinum). The goal of chemotherapy is to kill active cancer cells. This does not cure cancer. Most cancers are the result of gene mutations like Katy's is.  The treatments were deeply disturbing to watch as toxic chemicals drip into your child's body and then listen to her cry and begging to stop because she hurt so badly all over. She was vomiting a lot in the hospital and at home by the third round of chemotherapy. Katy also had a PICC line placed in her right upper arm that fed into her heart. This is where chemotherapy was administered. I flushed this line daily at home when she was not in the hospital. Katy hated the flushing saline solution as she could taste the salt as I flushed the lines. All of her hair fell out in March 2016 and by August 2016 it had begun to grow back in - curly! It is still short as of today and very curly.

Unfortunately, there is no cure for most cancers. And, this particular cancer is known to return as late as 10 to 20 years later after chemotherapy. It is our greatest hope that the chemotherapy killed the active cancer cells. We will just keep praying for cancer to remain inactive and not return. After 5 years of not having active cancer, Katy will be considered in remission. It is critical that cancer not return within the first two years after chemotherapy as it is statistically very aggressive and difficult to treat upon return. Our oncologist, Dr. Jonathan E. Wickiser, advised that when we reach year 5 without the return of cancer he will breathe much easier. We have a long way to go yet.

Donations are now needed to assist in paying for the 2018 annual health insurance deductible of $7,350. For the 2018 policy year, Scott & White EPO (a private policy through S&W that is not available thru the Market Place because this is the one private individual EPO policy that Children's will accept). Scott &White will pay 80/20 of everything after that. The monthly premium is $387 per month (last year it was $234). Katy will have CT scans/MRI scans every three months along with lab work during office visits to her oncologist and other doctor's she sees for her follow-up care. The policy information is found here: 


I am a single parent and am solely responsible for Katy's financial support and care. I do work as a house manager/personal assistant.

Thank you so very much for your donation towards Katy's continued medical treatment and care. We appreciate your time in reading our story and following Katy's journey. Please remember Katy in your thoughts and prayers. It is the strongest medicine of all!

Peace, Love, and Light,
Lindsey & Katy

Information on JGCT: https://www.glowm.com/section_view/heading/Pediatric%252520Ovarian%252520Malignancies/item/251

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Lindsey Breed Tootle 
Dallas, TX
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