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Lacie Olix was born April 1,1999 at St. James Mercy Hospital in Hornell New York. Shortly after her birth, Lacie began having complications. She was unable to eat and her blood levels were erratic. She was rushed to Strong Memorial Hospital in Rochester, New York. An Endocrinologist at Strong found that Lacie was born with Congenital Adrenal Hyperplasia (CAH). CAH is a genetic defect of the adrenal glands and a rare endocrine disorder that if not monitored properly can cause death. A person with CAH is not able to produce several vital hormones known as corticosteroids. Living with CAH requires extra attention to common illnesses and stress inducing situations (injury, exercise, etc.)
Both Lacie and her brother suffer from CAH and will have to deal with the many new side effects of this disease now that they are both in their teens and CAH changes when entering puberty. Lacie and her bother have had to have steroid replacement therapy in order to survive and make the CAH more manageable. Lacie was stable and doing great, playing sports, spending time with friends and doing things that every other kid does on a daily basis, until early last year when her symptoms changed dramatically.
In January 2013 Lacie started getting migraine headaches and having problems managing her CAH. After numerous trips to the ER and to checkups with multiple doctors, nothing wrong was found and she was sent home. In February 2013 her condition worsened, she lost her appetite yet was gaining weight and feeling constantly exhausted. Lacie started having back pain, muscle spasms, stomach aches, frequent headaches, and was feeling sick to her stomach all the time. Because of these new symptoms, her doctors in Rochester recommended that Lacie go see an endocrine specialist in New York City at Mount Sinai Hospital.
The specialist examined her and did numerous scans of her abdomen and pelvic area. A few days after returning home to Hornell, Lacie’s mom Tera and dad Mike got a phone call from NYC that they had to return right away. The scans found a large tumor on her right ovary that was about the size of a tennis ball.
Lacie underwent three surgeries in three months. The first was on April 29, 2013 and doctors removed the tumor on her right ovary that had grown to the size of a basketball. They also removed her appendix, right ovary, and fallopian tube. After the pathology reports returned, Lacie was diagnosed with Stage 3C Ovarian cancer on May 2, 2013. Her second surgery on June 12, 2013 was a staging laparotomy, in which they found the cancer spread to her lymph nodes. On July 7th Lacie was admitted to Golisano Children’s Hospital for severe nausea and vomiting and to start chemotherapy, when they found the cancer had spread to the other ovary. On July 16, 2013 at just 14 yrs old Lacie underwent a full hysterectomy.
Lacie started chemotherapy for her ovarian cancer on August 4, 2013 which damaged her kidneys. She also developed Type 2 diabetes.
Today Lacie is still in remission and was finally able to start her new oral chemotherapy, Pazapanb on April 7, 2014.
To keep her healthy and in remission, Lacie needs to see her Endocrine specialist in NYC 3 times a year. Her parents had to switch insurance companies recently and has new deductibles and co-pays for her treatment.
Lacie has had to give up so much of what I means to be a teenager and her only real wish is to have a porch built on to their house. She loves to sit outside, relax and would like to be protected from the rain and sun. This is important for Lacie because she feels that she has already missed out on so much and a small porch would allow her to be a part of the happenings outdoors without it being too stressful.
Also, her family travels to and from Rochester NY, about 1½ hrs away every other week, for 3-7 days for testing and treatment. Their family is struggling financially as Lacie’s dad was recently laid off and is now a substitute teacher. Her mom is a substitute teacher’s aide which makes it possible for her to be with Lacie for appointments and stays in Rochester.
Here's where the Ride to Give ARMY steps in:
We want to give Lacie a comfortable place to enjoy the outdoors and ease her family's financial medical travel burden. Let's help Lacie fight these horrible diseases that have ravaged her body but not dampened her spirit. Please donate here and follow her progress on Facebook at Lacie's Legion.
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