The Story of Mum and Her Glioblastoma
In these days I received this story from Maria Grazia. Yesterday was Mother’s Day and even if as you can see it is not a story with a happy ending, I thought it useful to publish it because it is a true story and it is also a love story of a daughter for her mother. Long live the mothers who are always close to us … in one form or another and thanks to Maria Grazia for this beautiful testimony full of details.
“Once upon a time there was my sweet and joyful mother, with a great desire to live, always ready to face with a smile everything that life had in store for her. One beautiful day in August, mom began to lose this smile, she started crying, so, without a valid reason, but blaming her sadness on small problems that can occur with age. Her sadness soon turned into anxiety, such as to be incomprehensible to us, but the neurologist made her start a cure for depression. This treatment had no desired effects and so, while her mental state was more altered every day and while we were thinking where to take her to ascertain whether it was psychosis or the onset of dementia, on October 15 she found herself in the emergency department. In just 4 days she went from having slow movements to deflecting the buccal rim, falling and not being able to move her limbs. When the result of the CT scan was communicated to me, I thought I did not have time to hug my mother again, then with the result of the magnetic resonance they explained the whole treatment plan that, normally, GBM sufferers have to deal with. The joy of having time to do something beautiful with my mother again contrasted with the fear of how she dealt with everything that lay ahead. On 22 October my mother went under neurosurgery, unaware of her life, but with so much strength and desire to undergo the treatments in order to be able to take back her life. The surgery went well, 6 hours in the operating room to remove 70% of the tumor located in the right temporal lobe, 30% was positioned towards the basal nucleus and it would have been too dangerous to remove. After the surgery my mother was in perfect shape and ready to go home, suffering only from the loneliness in which, in this time of COVID-19, hospital patients are forced to live. However, after 3 days from the operation, my mother had a paralysis of the left side, a new CT scan showed, they told me, the triggering of a post-surgery edema reaction. On October 28, my mother was discharged and returned home, in a wheelchair and unable to move. We were ready to assist her and get her back on her feet during the 30 days that separate us from her first meeting with the radiotherapist, during which we decided we would have told her the truth about her illness. My mother never reached that day. The day scheduled for the appointment he was in a second degree coma, as that 30% of the tumor left in her brain had been busy, trapping her brainstem and bypassing her corpus callosum. Less than 20 days after the surgery, she had reduced her to lay in her bed, unable to move.
So my mother never knew the truth, she never knew that she not only had the ugliest tumor in the world, but even in one of the most aggressive forms. From the histology there was not a single marker that could dare us hope (unmethylated, idh1 negative, gap and positive atx, ki67 at 50%) and no one was able to scientifically explain to us why my mother had already reduced herself to this state and why I would not be able to take her out for at least a last walk. Someone visited us and we paid 200 euros just to be told to start the radio as soon as possible because she would be gone in a few weeks. My mother taught us the Faith, she went into a coma praying to the Holy Spirit, and we always prayed, knowing what her fate would be. On December 5th, after almost a week of coma, we had to give her oxygen, continuing the therapy with mannitol (500 per day) and cortisone (8mg per day). Respiratory crisis, rapid heartbeat and high fever… we thought the time had come, for what the doctors had told us. Instead, mom woke up from a coma, she talked to me too if in a whisper and went back to being awake during the day for another 2 weeks. She then fell asleep again and passed away on January 10th.
From this very bad experience that I have lived I have learned a lot about glioblastoma, and I have understood that two persons with the same diagnosis can have quite different prognosis. The mass has the same name, but in each individual the mass reproduces in a different way and each organism reacts to it in a different way.
Therefore, my mother’s story is a sad story, but that doesn’t mean it’s always the case. There are many who survive two years or more… maybe in the meantime, as I also hoped, science will be able to find the cure that we have all been waiting for for decades. And finally, integrated oncology should not be excluded just because it is not offered to you, as happened to me. It can’t do miracles, but at least it mitigates the side effects of standard therapies, for those who get there, or the symptoms caused by the disease. “