The Story of Pino and his Glioblastoma
A few days ago I received an email from Federica who, after some time and many visits to this website, managed to find the inner force to write the story of her great dad. I report her story in full because it is very beautiful and ends with a very important and positive message.
“To tell my dad (Giuseppe, for all only Pino) maybe I should write an entire book, but I don’t think it would be enough.
A man with a brilliant mind (to say the least) who “made himself”. A modest family that of my grandparents, but of hard workers who sent him to work when he was only 16 years old. He goes from truck driver to owner of a company all his own.
He works hard all the time, grows two children with love and dedication and falls ill at the height of his happiness. My son Gabriele had just turned 3 months when my brother called to tell me that dad had felt bad at work, perhaps due to an aneurysm.
At the hospital they tell us they have to operate immediately or he will die. After a few hours we already know the diagnosis: malignant brain tumour.
It was June 5, 2020 and my world fell into a thousand pieces.
Against all odds, dad wakes up after the operation and recognizes my brother and me. He does not speak and the right side of his body is paralyzed. The tumor was removed, but part of his brain was also taken away with the tumor.
On the day of discharge, a tactless doctor and without a shred of humanity tells me to look for information about palliative cares, as for dad there is no more hope.
Meanwhile, dad is taken to a rehabilitation center and slowly manages to recover the capability to pronounce some words and manages to stay seated. Meanwhile, however, the complications are many: very high fever, wound infections, no short-term memory, fits of anger, loss of awareness in actions.
Of my dad, proud, daring, strong and courageous, a great speaker, there is little or nothing left.
In any case we do not give up, we all cling together (me, my mom, my brother, my aunts and my grandparents) to every single minimum improvement to keep hope and we move on. I inquire everywhere and I find a wonderful doctor, a neuroncologist who tells me: let’s try.
However, chemotherapy cannot be done as long as you continue to have a fever. So we decide to take dad home and treat the causes of the infection. Dad gets better, he talks to us, he also seems aware.
However, we do not even have time to start chemo that an epileptic seizure brings him back to a semi-vegetative state.
In September 2020 he was admitted to hospital where a worldwide luminary of brain tumours give us some hope. They put him back on track and decide to tell him about his tumour without us since we were in the middle of the COVID period and we couldn’t enter in the hospital. He collapses emotionally and refuses to have radiotherapy.
We bring him home to convince him but when he decides to be treated, the doctors decide to close the door on us. I persuade them to at least keep the chemo route, as it can be administered through pills that we can give hime also at home. In the meantime I interact with a medical doctor, I don’t know if it is possible to name his name but I think it would be really right to mention him giving others the opportunity to know him: Doctor Gramaglia who was the only one to treat dad as a person worthwhile. I found in him, as well as great competence, above all humanity, empathy, cordiality, sensitivity and great availability.
My very strong and determined dad reacts very well to chemo and, thanks to constant physiotherapy and speech therapy (obviously private, since we would not have gone anywhere waiting for the ASL), he manages to talk a little, stands up with the help of the walker and takes a few steps … he manages to enjoy a few moments of peace with us. With a clear mind, I can and must still admit that the situation was in general really complex … Dad often did not control his anger, he alternated outbursts of anger with moments of real depression, he ate with difficulty, his memories resurfaced in flashes and his memory a short term was next to nothing.
Meanwhile, the control resonances said that he, the glioblastoma was always there, it seemed to regress but it was there. Frankly, I have never been able to fully understand where the lesion was: the doctors told me that it is in the area of speech and movement and that, in any case, it would not be possible to defeat it. But, to be honest, it wasn’t the aspect that scared us the most. What destroyed us was seeing Dad suffer and die day after day. His clarity, even if minimal, allowed him to understand what had happened to him and to despair over what he did not have and would never have again. This is certainly the hardest consequence of glioblastoma.
However, as long as there is life there is hope and therefore we have tried, until the end. But the beast does so, it seems to give you hope and then suddenly comes back.
In spring 2021, dad starts to get worse, slowly at first, then really fast. His arm doesn’t move anymore, he struggles to sit up, he can’t communicate. The tumor has grown a lot.
They offer us surgery, we plan it for mid-May in Monza … but within a few days, Dad’s condition worsened dramatically. We give up the surgery, we start palliative care. The suffering and despair are so immensely strong that I don’t even know how to describe them.
We stand beside him, we reassure him, we kiss him, we hug him … they say it will take a month or so and instead dad flies away in a few days, on May 26, 2021. A week before I find out I’m expecting a baby, but the gynecologist tells me that it was a certain abortion. The day after my father’s death, the exams say instead that, against all expectations, a new life was growing inside me. On December 23, 2021 Ludovica was born (a name that my father liked so much), strong and courageous like her grandfather, she always smiles and her big blue eyes have given a sense to our lives.
As an atheist I can say with certainty that dad flew away to make way for Ludo, giving us a reason to go on and reminding us that life, even if hard, is always worth living.”