Everyone, my daughter Vivian needs your love and support right now. She is an amazing 7-year-old with so much to offer this world. She is one of the smartest, toughest and most loving little girls around and she means the world us and we want to give her every opportunity to live her life to the fullest.
Last week, Vivian's mother noticed her having difficulty with her eye movements. Vivian was also having blurred/double vision. She went to the pediatrician last Monday (6/6) and he referred Vivian to an ophthalmologist in Maitland, FL. On Tuesday (6/7), the ophthalmologist examined her and ordered an MRI of her brain. After some calling, her mother was able to make an appointment for her in the morning on Wednesday (6/8) to receive her MRI. Vivian went under anesthesia where the MRI scanned her brain and orbits, with and without contrast. Later that afternoon, we got a call saying that they found something, and it was urgent. Vivian was immediately scheduled for an appointment on Thursday (6/9) with a neurosurgeon.
On the way to the Neurosurgeons office, her mother got a call to switch her appointment to an oncologist. There we were told that Vivian has a rare terminal brain cancer. This cancer is known as DIPG, or Diffuse Intrinsic Pontine Glioma. It is a type of brain tumor found in an area of the brainstem known as the pons. The name diffuse intrinsic pontine glioma describes how the tumor grows, where it is found, and what kinds of cells give rise to the tumor.
-Diffuse means that the tumor is not well-contained – it grows out into other tissue so that cancer cells mix with healthy cells.
-Intrinsic simply means "in", referring to the point or origin.
-Pontine indicates that the tumor is found in a part of the brainstem called the pons. The pons is responsible for a number of important bodily functions, like breathing, sleeping, bladder control, and balance.
-Glioma is a general term for tumors originating from glial cells. Glial cells are found throughout the brain. They make up the white matter of the brain that surrounds and supports the neurons (neurons are cells that carry messages in the brain)
Symptoms usually develop rapidly in the majority of patients because of the fast growth of these tumors.
The most common symptoms related to DIPG include the following:
- Problems with balance and walking
- Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision)
- Problems with chewing and swallowing
- Nausea and vomiting
- Morning headache or headache that gets better after the child vomits
- Facial weakness or drooping (usually one side)
Unfortunately, due to the location of the tumor and its composition surgery is not an option for her. There is no known cure for this type of brain cancer and long-term survival rates are very low. We were told that even with the radiation treatment, she may have 2 years to live, if that.
Vivian begins her radiation treatment on June 20th. Her treatment will be Monday-Friday for 6 weeks. Each time Vivian will have to be sedated unless she is able to keep still during the entire process.
Vivian has a 9-year-old brother, Corbin. These two love each other very much and are inseparable. They have been through a lot of loss and heartbreak over the past 4 years. They lost both of their grandfathers within 24 hours of each other in 2018 and they just recently lost their grandmother (my mother) at the end of March this year, all from cancer.
Please consider donating to Vivian's cause and help give her the best life possible with the limited time she has left in this world. The money will go towards medical bills, gas, food, and housing while she is in treatment. Whatever is left over after treatment, will go to her quality of life and enable her to travel and experience whatever she wants. We want to make her life as carefree and enjoyable as possible and make memories that will last us forever.
Please keep Vivian in your thoughts and prayers. Miracles happen every day and this little girl deserves one of them. Thank you and God Bless!
