Desiree's Story: A Beautiful Soul Despite Overwhelming Obstacles
Desiree graduated from nursing school in 2005 and started working at Strong Hospital on the ENT unit. After about a year of working nights and paying her dues, she started working on High Risk Labor & Delivery, 3-1400. She loved everything about it! The variety on the unit, no more nights, and most importantly she met the most wonderful people who would end up touching her life more than she realized at the time.
This is also when she decided to focus on herself and get healthy. She lost a lot of weight, started working out, and started eating right. She accomplished this task all on her own with hard work and dedication. She looked good, felt good, and was so happy at what she accomplished. She also started school at the U of R and graduated with her Family Nurse Practitioner master’s degree in May of 2012.
Everything was perfect, and she had just accepted her first NP job with the Stroke Center in Neurology right at Strong. She was so excited to begin a new chapter of her life when the unthinkable happened. She had been experiencing some strange symptoms including tingling and numbness in her hands and lips, nausea and vomiting, and near-syncope episodes. This happened on and off for about a year and a half. No one could figure out what it was, and they never thought to do an MRI or a CT scan.
After horrible headaches, vomiting, vision changes, and syncope episodes that persisted for weeks, she finally went to the ED. They did every test imaginable, and thought it was everything from meningitis to pseudotumor cerebri. They finally did a CT scan, and it showed three tumors in her brain. There was a large tumor on her pineal gland, a small tumor on her pituitary gland, and lastly a tumor in the 4th ventricle. Desiree had cancer. Not just any cancer, but brain cancer that had already spread. If that isn’t scary enough, she was diagnosed with pineal parenchymal tumor with intermediate differentiation, Grade II. Essentially, this means that the tumor has both fast and slow growing cells, so you never how fast or slow the tumor will grow or spread. Oh, and yes, it is extremely rare.
Desiree endured two brain surgeries within 10 days; a biopsy and a VP shunt placement, and ended up with a rather large blood clot in her leg. She had 33 treatments of radiation, where she lost her hair, gained weight because of the steroids, and could not do too much without feeling like she was going to pass out. After a break from the radiation treatment, she went out to California to have a minimally invasive surgical procedure done to remove the tumor on her pineal gland. She did great and most of the tumor was removed, but she ended up with another blood clot in her other leg.
After some time to heal and recoup, everything was starting to look better and the tumors seemed to be disappearing. Then in October of 2013, she had a brain bleed. After a 5 day stay in the ICU and on the neurology floor, she was able to go home. Physical therapy started and she was regaining strength.
Within two weeks of the brain bleed, she started to have problems swallowing, she was passing out a lot, and even had a few seizures. They discovered three new tumors, one being in her brain stem. Chemotherapy started in December of 2013 and throughout about 6 months, she slowly lost her ability to get up, walk, sit-up without passing out, and being able to control her bladder or bowels. She had pneumonia, countless blood transfusions, hospital stays, and many horrible and uncomfortable side effects from the chemo. The tumors would disappear in one place and show up in two others. After the chemo put her back in the hospital and she got more than she was supposed to get in error, an MRI revealed the tumor in her brainstem had grown and nearly filled her brain stem. She had weeks to live, and no one had quite processed it.
After being released from the hospital, she lived two more days, and she was gone. She went peacefully at home surrounded by loved ones on November 21, 2014. It happened exactly how she had asked, and for that, we are thankful.
One thing we can say about Desiree is that she always had a positive attitude. She never complained, never treated anyone with disrespect, and smiled every day. EVERY DAY, including the day she passed away. She fought this thing until the bitter end and was ready to keep on fighting. She won her battle in our eyes because she fought through pain, fear, losing all modesty, and having a poor quality of life for so long. We do not know anyone who could do what she did. She is a true hero and a true inspiration.
Our family truly hopes she knew how many people she inspired and how many lives she touched. The world needs more people like Desiree; strong, positive, dedicated, and always caring for others before thinking of herself. We love you, Desiree, and we miss you more then words can describe.
The meaning behind this race is to carry on what Desiree loved to do: give back to others. Starting in 2018, we will be donating all of the proceeds to an individual with brain cancer, and their family, to help with the financial burden of this horrible disease. It truly helps and is one less thing the person and their family have to be concerned about. We are very excited about the third annual Beat Brain Cancer 5k on June 9, 2018. Please consider participating in this event to help raise awareness of brain cancer and to support a local family in need!