Aurora

Aurora was born on January 2, 2014.

Her life runs smoothly, she loves nature and animals.

In November 2019 she began to have headaches, which we believed was due to the weather, the low temperatures, or the stuffy air in the classroom … sometimes we thought that it was “just” a whim because she didn’t want to go to school and wanted to stay with her mom…

A headache that appeared about 1 to 2 times a week and disappeared with paracetamol/acetaminophen.

In mid-November, the frequency of her headaches increased to about 2 times a week, sometimes 3 times, but always disappeared after a dose of paracetamol in the right amount for her weight and age.

All this did not give us peace of mind and that is why we began to visit doctors, first we saw an otolaryngologist. As nothing strange was found we decided to take Aurora to an ophthalmologist.

The ophthalmologist recommended going to the hospital immediately, because she had found something abnormal that she called “bilateral papilledema” due to intracranial pressure.

On December 3, 2019 we immediately went to the Bambino Gesù Hospital in Rome.

The hospital gave us the utmost urgency. They immediately did a CT scan and based on the result, they ordered immediate hospitalization and an urgent MRI for the morning of December 4, 2019.

The resonance and the tomography showed there was something, but to fully understand what it was, a biopsy was needed.

Meanwhile, Aurora did not understand exactly what was happening, but she was always a calm girl and she always had us close to her as well as the affection of all the people close to us.

On December 17, 2019, the doctor in charge informed us that after examining the extracted tissue, we found ourselves facing a case of Gliomatosis Cerebri, located in the left hemisphere of the brain that was typified as grade III. It was classified as Anaplastic astrocytoma (because gliomatosis cerebri is no longer considered a disease worldwide).

Therefore, we immediately started a course of 30 radiotherapy treatments along with the drug Temodal, cortisone and an antiepileptic drug to control the headaches and seizures.

After the radiation therapy ended in February 2020, a new MRI was performed in March 2020 to verify the situation: unfortunately, the disease appeared to be more extensive.

Temodal treatment was started immediately every 28 days, and in April a third MRI was performed, which nonetheless confirmed a progression of the disease.

The same day the doctors requested authorization to start treatment with Bevacizumab.

Unfortunately, this entire path got complicated due to Italy’s COVID-19 national lockdown.

Always locked up at home, without the possibility of having any support: not even the school (also closed due to the COVID-19 pandemic) provided support or help.

Nevertheless, the life of Aurora and our family managed to stay balanced and flowed quite normally.

Aurora started with her mother preparing homemade desserts and taking care of the plants. She loved to sing and dance with her mother, who was always close to her. She enjoyed preparing food and playing with her new puppy.

In May 2020 we performed a fourth MRI scan which showed that the disease was in slight regression. The doctors told us that this is a good result, but they believed that unfortunately it would not last long.

In fact, in July, Aurora’s headache was always present, nothing had changed and this led us to perform a new MRI that showed the appearance of the disease also in the right hemisphere of the brain.

In August we were able to take a little vacation on the beach, in a tourist town near Rome. There even with a headache that was always present and full of cortisone, Aurora wanted to go on stage to sing a song: this filled us with joy.

Unfortunately on September 23, 2020, we had to arrange homecare medical assistance. Aurora couldn’t take it anymore and on October 7, 2020 she left us.

Medical information

Rome – Bambino Gesù Pediatric Hospital

• 04/12/2019: MRI
• 12/17/2019 histological test + methylation

Therapy

• 30 radiotherapy treatments + temodal 40mg / day (January + February 2020)
• temodal 120 mg 5 days / 28 days (from March 2020 to the end)
• bevacizumab every 2 weeks from 04/17/2020 to 09/09/2020
• Home health care from 09/23/2020 to 10/07/2020 (last day)