Julia Barbara Foundation

FIGHTING TO CURE DIPG - BRAIN STEM TUMORS

JULIA'S FIGHT

Thanksgiving at the beach (2015) Julia

appeared to be a healthy little girl

Prior to the diagnosis, we had no idea that Julia was suffering from a brain stem tumor. Medically, her life had been uneventful until December. She never complained of headaches or nausea. After Thanksgiving, we began to notice that Julia was slightly imbalanced on the right side and her facial movements were a little abnormal. We assumed it was an inner ear infection.

December 14, 2015

A brain stem tumor found via CAT Scan

On December 14, 2015, we took Julia to her pediatrician for examination. Luckily, the pediatrician was very astute and fought our insurance company for a CAT Scan. On that same evening, we were told that she had a brain tumor and that Julia needed to undergo an MRI Scan. The following day we checked into the hospital and waited for results. We were stricken with shock and grief when the physicians explained our hopeless situation. Our choices were to undergo radiation with a combination experimental/chemo therapy drug or to take her home and wait for a surely quick death. Since brain stem tumors progress very rapidly, the physicians did not expect her to live much longer without any treatment.

We were never given the option of neurosurgery. The neurosurgeons explained that it was impossible to safely operate on Julia since the tumor was located in the brain stem.

Julia's Battle Begins

Six weeks radiation combined with an experimental drug/chemotherapy and steroids

After consideration, we obviously chose to fight in order to prolong her life as much as possible. It was our hope, that we could gain an additional 9 months of time. (Sometimes radiation can improve symptoms, however the brain tumor normally recurs after 6 to 9 months). We traveled to Memphis and Julia began radiation combined with an experimental drug/chemotherapy treatment. Five days a week Julia was sedated and underwent radiation treatment. Either the drugs, radiation or sedation caused her be nauseated, so she continuously took anti nausea medication.

During this time, Julia lost use of the right side of her body. She could no longer walk and had difficulty swallowing. We were warned that she may choke to death if we did not closely monitor her intake of liquids and food. We were also told that children diagnosed with DIPG often pass away as a result of failing to breathe.

Julia was also prescribed steroids. The steroids caused her to gain weight and she was always hungry. The medication caused her to have high blood pressure and insomnia. Her personality also changed. At times, it seemed that she no longer remembered how to laugh or smile, and she appeared to become an adult overnight. As a family, we tried to make it up to her by spoiling her with Princess items. She liked to wear a crown and jewelry on the days she had radiation treatment.

Julia Returned Home

After radiation and no longer on steroids or experimental drug/chemotherapy

After roughly 6 weeks we returned home. Julia was weaned off the steroids and it appeared radiation treatment reduced the tumor. (It is often very difficult to wean people off of steroids since the body becomes extremely depend upon the drug). Further, Julia had regained use of the right side of her body including the ability to walk alone. Julia no longer took the experimental drug combined with chemotherapy, even though at the onset of radiation she was scheduled to continue treatment after radiation. We were told that test results had shown that the experimental drug/chemo therapy had no effect on the brain stem tumor, so we chose to no longer proceed with drug therapy.

Within a few weeks and after a trip to Europe to see family (which was graciously funded by Make-A-Wish Foundation), Julia, once again, lost mobility in the right side of her body. She then complained of headaches and nausea. After a scheduled MRI, the physicians determined that she had hydrocephalus (excess cerebrospinal fluid in the brain) and radiation necrosis (destruction of healthy brain cells resulting from radiation exposure). So a few days before Easter, we immediately admitted Julia into a hospital in Memphis.

Endoscopic third ventriculostomy (ETV)

surgery and shunt surgery

After the hydrocephalus diagnosis our only option to relieve the pressure from Julia's brain was neurosurgery. The neurosurgeon presented us with two procedures, we chose the least evasive option endoscopic third ventriculostomy (ETV) surgery. During this operation, the surgeon cut an opening in the floor of the ventricle at the base of her brain. We had hoped that this surgery would cause the pressure to release from Julia's brain, unfortunately this was not the case. Julia had to undergo a second surgery, this time a shunt (a flexible tube) was placed in her brain. The top of the shunt attached to a value to control the flow of fluid through her brain. The end of the shunt exited into her abdominal cavity. So essentially, she had a tube placed in her brain, through her body, and out of her stomach.

The shunt surgery was successful in that it released the fluid from Julia's brain. The side effects on Julia were substantial. Julia's vision was impaired and she had a large incision on her scalp and stomach. Further, the radiation necrosis did not subside after surgery, so her physician prescribed a heavy dose of steroids to combat the spreading cell destruction.

Julia died on May 17, 2016

While asleep at home

In April, Julia began taking a substantial dose of steroids (two times the previous dosage). This time, she did not regain use of her right arm or obtain the ability to walk. However, after a CT Scan, it appeared that the steroids reduced the radiation necrosis. Once again, in late April, Julia started the arduous task of weaning off of steroids.

A few days before her death, Julia was still taking steroids, but a lower dose. Her mobility had not improved. On the morning of May 17, 2016, we awoke to find that Julia had passed away in her sleep.

From Our Family

If your child is diagnosed with DIPG please contact us if you any questions

We hope that this website has been helpful. We tried to detail the path that we traveled with Julia. Throughout the process, we often questioned what was going to happen next, since information was limited. We would not wish this experience on any family, but if your child is diagnosed with DIPG please contact the Foundation via email or telephone. We are not medical professionals but we have lived through the situation. It is our wish that something beneficial can come from our painful experience.