Princess is very outgoing. She loves babies and dogs. Her special interests are Star Wars, Pandas and Unicorns. She also likes to dance and rock out to her “jams”.
In March of 2016, Princess started to experience weakness on her right side. Initially, the doctors at the ER told us that it was a side effect of a medication she was taking. A month later, when things got worse after stopping the medication, her pediatrician referred us to our local children’s hospital for an MRI. After the MRI, we were told that she had a mass in her brain (Ganglioganglioma).  Brain surgery was scheduled for the next morning. Subsequent MRIs, in the months and years following the resection were clear. That is until this past May when a new tumor was spotted. Princess is currently taking oral chemotherapy to help shrink the tumor.
Princess has dystonia due to the brain tumor and she has OT and PT weekly. Then every 3-6 months she receives Botox injections to help loosen her stiff muscles. The dystonia has also affected her jaw, swallowing and digestion. In November of 2017, she had surgery to have a G-tube placed after many procedures to determine why she was losing weight. At camp her G-tube fell out so we are currently going for weekly weigh ins to see if she can maintain weight on her own. She has had numerous blood draws and MRI’s for the past two years.
Cancer has changed many things about our life. Due to her diagnosis and treatment, she fatigues easily, has limited use of the limbs on her right side and cannot swim or ride a regular bike. She misses a lot of school due to her various therapies, doctors’ appointments and procedures. I, her mom, take her to these since I am her full time caregiver. In the summer, my husband joins us at these appointments since he’s off for the summer. We also seem to spend a lot of time at the ER.
On top of her cancer diagnosis, Princess also has autism and bipolar disorder. She is a warrior princess.
Hope Session by Simply Sara Jean Photography | Facebook | Instagram