--- - May 17, 2016
Julia was a happy little girl who loved anything that was considered girly. She had an older brother whom she adored very much as well. She liked dressing up as a princess and playing with her brother. Julia and her family spent Thanksgiving 2015 on the beach. She appeared completely healthy then, and she had never had any major medical issues at all. After Thanksgiving, however, Julia's parents began to notice that she had some issues with her balance and her facial movements seemed a bit off. They assumed that she had a simple ear infection.
On December 14, 2015, Julia's parents took her to the pediatrician. The pediatrician decided Julia should have a CAT scan. The CAT scan revealed that Julia had a brain tumor so an MRI was done. The next day, Julia's family went back to the hospital and waited for the results of the MRI. Then, they were told that Julia had a rare form of childhood cancer. This cancer is called diffuse intrinsic pontine glioma, often called "DIPG." DIPG is located in the brain stem, making it inoperable. There is no cure for DIPG, although there are treatments that will help reduce symptoms for a period of time so the child can have a more normal life, until the symptoms return, often worse than before, and claim the child's life. No child has ever lived long-term after being diagnosed with DIPG.
Julia's parents had two options: Take Julia home and watch her decline quickly, which doctors said would happen, as brain tumors progress very quickly, or begin radiation treatment with an experimental chemotherapy drug which would prolong Julia's life. Her parents decided to try and prolong Julia's life, hoping that she would live an extra nine months than she would if no treatment was given.
Julia began six weeks of radiation and chemotherapy. Julia was sedated five days a week to have radiation treatment. Some aspect of the treatment made Julia feel very nauseous, so she also began taking medication for that constantly. Julia lost the use of the right side of her body, so she could no longer walk and had issues swallowing. She was also put on steroids which made her gain a lot of weight. She was always hungry. The medication made her blood pressure rise and gave her insomnia.
Along with all these other symptoms, Julia's personality changed. Sometimes nothing could make her laugh or even smile. After six weeks of treatment, Julia got to return home. She was weaned off of steroids and it looked like radiation had shrunk her tumor. She regained the use of her right side, so she could walk by herself again. Test results showed that the chemotherapy drug she had been taking had no effect on the tumor, so she stopped taking it.
A few weeks after returning home, Make-A-Wish helped Julia and her family go visit other family members in Europe. Julia lost the ability to move the right side of her body again and experienced headaches and nausea. She had an MRI which revealed that she had hydrocephalus, which is extra fluid in her brain. She also had radiation necrosis, which is the destruction of her healthy brain cells due to radiation. Julia was admitted into the hospital again.
To relieve the pressure in Julia's brain, she had to have surgery. This surgery did not relieve the pressure as was hoped, so Julia had to have a second surgery involving a shunt placed in her brain. The top of the shunt was connected to a valve to control the flow of fluid in her brain. The shunt extended through Julia's body and down to her stomach. This surgery was successful, but came with many side effects. Julia's eyesight was impaired. She had a large incision on her scalp. She also had to take a heavy dose of steroids.
In April, Julia was taking two times the steroids she was initially prescribed. She did not regain the use of the right side of her body this time, although they did help with reducing radiation necrosis. In late April she began to be weaned off steroids again. On May 17, 2016, Julia was still taking a lower dose of steroids. Her mobility never improved. That morning, Julia's family woke up to discover that Julia had passed away in her sleep at the family home.