The story of Jason and his glioblastoma
Below is Jason’s story told by Gloria, his sister. Jason’s story is a testimony of courage and determination in his battle against glioblastoma. Jason decided to face the disease with extraordinary strength, facing challenges that few could ever imagine. In this battle, Jason could count on the support of his family, friends, and the medical community of the Oncology Institute of Southern Switzerland, who offered him support and encouragement at every stage of the journey. Even though there were tough times and misunderstandings regarding the choice of therapies, he always had the strength to rise again and look forward. Thanks to his determination, Jason was able to face the most challenging treatments with courage. Jason’s story reminds us of the importance of not giving up, fighting with all our strength, and relying on the help of others when we need it.
“I would like to tell you our story: my brother passed away at just 24 years old, after fighting for almost two years against his glioblastoma. I hope that the path we have taken can be useful to someone. On September 9, 2020, my brother had a severe epileptic seizure while driving in a tunnel, in the car with his best friend. He always said that it was she who saved his life that late afternoon by calling the ambulance. She, on the other hand, says that he saved her life by having the clarity to stop the car and park before the peak of the crisis. Admitted to neurosurgery, we were contacted and informed. It was the period of the COVID-19 pandemic. The most atrocious thing was not being able to be close to him in those infernal waiting moments in the emergency room, him inside and us outside with no information except that he had to undergo an MRI. Hours and hours. Reached late at night by the neurosurgeon, we viewed the MRI, a mass compressing the entire right hemisphere. A monster, but totally removable. The morning after the surgery, 10 days later, the diagnosis: Glioblastoma Multiforme. The removed area had to be treated to prevent recurrence. We followed the path that you all know: tumor removal, in his case total, Temodal, and radiotherapy. Jason maintained a precision like an excellent university student, as if following an important task, following any indication to the letter and without ever making a mistake. One of his sentences that we remember best is this: it’s like being in school, I do what the doctors, the teachers, tell me to do.
At the end of the therapy in early December 2020, two options were proposed to us: to start a clinical study based on immunotherapy in Zurich and the Optune device. My brother preferred the first option because it allowed him to keep his beloved curls, which instead had to be shaved to use Optune. However, due to a bureaucratic problem related to the signing of the consent that had to take place before the start of the standard therapy, the therapy was denied to us by the ethics committee. Another reason was that my brother was not “sick” enough. We were so disappointed. We felt cheated, but Jason faced the negative news with incredible strength for his age, a brief cry, and then it’s okay, let’s move on. He was excluded from the study. At the end of traditional treatments, my brother began treatment with the Optune device, the famous TTF helmet, which had been strongly recommended by Professor Roger Stupp based on molecular analysis of the tumor, Non-methylated glioblastoma. The therapy was demanding but effective, and my brother had chosen to face it with courage and determination.
The TTF helmet is composed of ceramic electrodes connected to a portable device that generates a pulsing electromagnetic field that prevents glial cells from reproducing. It is a therapy that conditions the life of the patient and those close to him/her, as the skin on the head requires continuous care. The electrodes can cause small ulcers in some cases if not properly positioned due to the heat they emit. But even in this case, my brother proved to be the perfect patient, achieving milestones with the therapy beyond those set. But he was like that, for him, it was like a task at school. I do what they say. There is a target number of hours in which the device must be kept in operation to be effective, and as an excellent student, he always exceeded it. His Optune representative was always available, providing excellent service and a person with great humanity, which is not easy to find these days.
In mid-July 2021, the first symptoms of a recurrence appeared. We were in the mountains, as a family, we were laughing at the older brother’s holiday stories. Suddenly an absence of him, a fixed gaze. The usual COVID-19 procedure, but this time, nothing would stop us from being close to him. We knew this disease. The recurrence that had occurred was small and easily removable, hence the second surgery with total removal. One of the sufferings that I believe was most challenging to bear was hospitalization, both for Jason and for us. It was important for him to return home as soon as possible, to his family, in his environment. The hospital stay lasted four days.
He could have continued with TTF, but he chose to give it up because the electrode placement required him to shave his hair continuously, and for my brother, a boy with curly and thick hair, it was too great a sacrifice to shave continuously, and the device limited his quality of life as a boy who still wanted to have an “apparently normal” life despite his illness. In the future, I hope that more investment will be made in this effective therapy to facilitate its management.
Therefore, we were offered three alternatives: Second-line therapy with CCNU or strongly recommended experimental therapy. If the experimental therapy did not work, second-line therapy would be pursued.
As experimental therapy, there were two possibilities: Regorafenib in Padua and a therapy in Geneva with a T-cell-based vaccine, with possible associated immunotherapy. We tried to go to Padua for a visit despite the complications due to the fact that we were residents in another country, Switzerland. However, the attempt was unsuccessful due to a misunderstanding.
Upon our return to Switzerland after hours of travel, we were discouraged. However, my brother had already decided that his choice would be Geneva, even though we wanted to leave every door open and any possibility of choice.
We then went to Geneva in early September, but unfortunately, we were informed that the clinical trial could not be undertaken if there was no evidence of recurrence on the MRI. On the one hand, we were happy, on the other hand, the wait to start the new therapy was nerve-racking.
In early November, there was confirmation of recurrence, and so we could start the experimental therapy. The study had two branches: one with only T-cell-based vaccine and the other with T-cell-based vaccine and associated immunotherapy. The study involved a random choice for insertion into one of the two branches.
Jason was then placed in the branch that provided only the vaccine. For a month, every weekend we drove from Canton Ticino to Geneva for the vaccine administration and medical check-up. Followed by an impeccable medical team, unfortunately, after a month, the tumor had already increased, and some visual disturbances had also appeared.
In December 2021, in agreement with the medical team, we decided to start a second line of treatment with Avastin and CarboPlatinum, but unfortunately, with the addition of chemotherapy, the therapy for Jason became too heavy, until he was hospitalized for micro-cerebral bleeding. Here too, his strength of will allowed him to return home in a short time.
The hardest part for a family but also the strongest act of love was to accept Jason’s choice to suspend all therapies and opt for palliative home care, with the assistance of a specialized palliative care team. His greatest desire was to spend time with all of us and his dearest friends. It was a very difficult time for all of us, but my brother fought until his last breath.
He died in early July 2022 in his home, surrounded by the love of his family and loved ones. My brother’s illness was a real battle, his strength and courage a source of learning, even though his absence is an immense pain, we want to remember him with love and gratitude for his strength.
My mother always reminds me that my brother Jason was always a child full of joy, and it was beautiful to hear him laugh. He would laugh on the couch without any apparent reason, and everyone wanted to be close to him. Growing up, he became mature and determined, he had created his own identity. Pure at heart, open to any opportunity, it was an infinite pleasure to talk to him about anything. Even during the illness, many mature thoughts emerged from him, painful but true and profound discussions. Thoughts expressed during night walks looking at the stars, and even if I didn’t want to accept those words then, they now support me.
We hope that his experience can be useful to others who find themselves in the same situation, and it is with this spirit that I wanted to write his story. We all hope that therapies against this brain tumor continue to evolve to offer even greater possibilities for treatment to the patients and their caregivers.
Finally, thanks to the Frédéric Fellay association who supported us in the Geneva journey and to dear nurse Annalisa.”