Mara tells the Story of Alice and her Glioblastoma
It’s Christmas and I’m ok even if the holiday season for those who have lost a loved one, right in this period even if it was four years ago, it’s always a bit strange, it’s difficult to enjoy, you always have so many memories in mind. I go back home. I open the email and find this letter from Mara telling me about Alice. I remember Alice who had written to me in July of last year, she had spoken about her and Emanuele’s illness. I don’t know what to do, I feel discouraged but due to the words I read and Alice’s awareness that had deeply affected me, I decide to share this profound story with all of you. It’s as if people like Alice and Emanuele have access to an awareness that doesn’t even seem of this world. It’s something that goes beyond and makes you shiver. I reproduce the full text of Mara’s letter without commenting further.
“I am Mara, Alice’s mother and I have decided to share her story, of endless waiting, of tears, but at the same time of shared love and hopes.
Alice has always been a more mature child of her age, since she was a child; it was a joy to hear her speak, reason, a small talk of a very determined character. Serene childhood, peaceful family, brother three years older, always mischievous, school, then volleyball, in short, everything was normal.
In 2015 Alice is 15 years old, she has been suffering from migraine for months, unfortunately underestimated by doctors, because despite the countless checks she does not have any neurological disorder, therefore no CT scans or MRIs; moreover Ali is not the type to complain that much … it will be the growth, the age and simply the typical psychological problems that teenagers have, perhaps the choice of the wrong school …
But the migraines get worse and from an emergency CT scan on March 17 everything becomes clear. Positive … the world is upon us, but we still don’t know exactly what it is. Alice is hospitalized and operated on March 24, all is fine, completely eradicated and we wait for histology after which we are catapulted into the infernal round of protocol treatments: 30 cycles of radiation and 24 long months of Temozolomide, fortunately well tolerated, weekly visits and exams and all that psychologically follows, including a wig, swelling due to drugs and constant tension.
Needless to say, we had never heard of glioblastoma, and here it is that has come to destroy our lives. For Alice’s sake, everything must be taken calmly and positively… “You’ll see that everything will pass”… I often repeated. But she, while discovering everything “thanks” to the internet, never gave up, she lived by accepting everything, luckily her young age helped her to move forward with adequate awareness.
In the devastation we too manage to continue this hard journey, suffering and then rejoicing at every negative RM. Ali continues to go to school, even if not very willingly (he has never particularly loved the school environment, a free spirit who didn’t like too many constraints!, plus the constant comparison with “normal” peers is not easy).
Meanwhile, time passes and we are almost convinced, without deluding ourselves too much, that perhaps Alice is among the few lucky people who will make it. She leads her life quite normal, splendid … no one would say what she went through, nothing about her reveals what happened. Between the ages of 16/17 she also manages to do the silly things that many teenagers do just to prove themselves… drink something, try to smoke… naturally compared to others, she pays dearly for these mistakes: epileptic seizure and hospitalization for a week; but the resonances continue to be negative.
Meanwhile, Alice matures, becomes “little woman” as she defines herself. At 18 she finds a special boy, to whom she tells everything about her and despite what he decides to stay with her, her love for her is greater than all the difficulties. It’s Alice’s best moment, she finishes school, she graduates, she gets a job, in short, she finally starts thinking about her future; after years of insecurities, she seems to have some inner serenity.
And then she and I always together, not only in the routine of checks and visits, but in everything else, from shopping to walks in nature, from chats to confidences. A very special mother-daughter relationship, a priceless shared feeling; but it was so easy with her …
Here we are in 2021. Alice’s boyfriend buys a farmhouse, to be fixed up for their future together; she loves that house, she strongly desired it. But in May, the news came from a routine checkup: a recurrence very small and slowly growing. Our world collapses again and this time it’s heavier for everyone. In Novara they decide not to operate and propose therapies, so we ask for a second opinion in Milan, where Alice will be operated on October 15. In a week she comes home, she is very well, she follows 5 sessions of stereotactic radiotherapy without any particular problem. We spend Christmas serenely and in January 2022 we begin the planned therapy with intravenous Bevacizumab sessions every three weeks. All bearable even if Alice is now psychologically more fragile (she requires psychological support herself); she, for our part, has all the delicacy and calmness we are capable of; It’s not easy for anyone, but Alice knows how to be a lioness and she’s always the one who makes everything more acceptable.
We think we’ve made it this time too, we say to ourselves “well … if another 6 years pass … the research continues … let’s hope … we can bear it.
But it wasn’t like that unfortunately, the root of the evil was still there and didn’t spare our little Ali.
In August 2022 Alice begins to have major visual field problems and is quite weak. Something is going wrong. The MRI highlights something that could be a recurrence, but has a strong blood component, perhaps due to the therapy, which we are suspending in the meantime. It is not yet clear and a 45-day check is established. In the meantime, however, on August 26, due to a severe migraine, we took her to the emergency department, a CT scan which showed, in addition to the “known left lesion”, an edema also on her right side. We no longer understand anything, even the doctors seem confused, something else is wrong. After two days of tests of all kinds, they understand that she has a serious listeria infection in progress, she contracted who knows how and who knows where, that she has reached the brain causing meningoencephalitis. Another hard blow. Alice remains intubated in intensive care for several days, during which the insertion of a brain shunt is also necessary. She will stay in the hospital for seven long weeks, during which time she is being treated for the infection. Honestly, we still have the hope that everything is due to that bacterium, but in reality it is not. There is a recurrence, the surgeon would like to operate her as soon as possible, but we have to wait for her to recover from the infection. Finally the antibiotic treatments end, the bacterium is defeated and Alice recovers quite well, even from the meningitis and with the favorable opinion of her oncologist we are able to take her home, even if the surgeon was proposing to intervene immediately, to remove part of the tumor. We, on the other hand, would like to make her recover from this debilitation, waiting to start the therapies again. The surgery at this moment seems like torture to us (moreover useless as we would later understand).
However the little Ali is at home, we are able to enjoy beautiful walks again, she is particularly calm, never a crisis of anger or desperation as I would have expected, apparent serenity in accepting everything again, like seven years before.
Now it makes me think that although she seemed to have returned to Alice as before, the meningitis had left some aftermath, and I feel like saying “fortunately”, because perhaps she never regained that total awareness that would have made her suffer even more.
We are at the end of October and we are waiting to start the therapies again, I too think that if another surgery is necessary we will face it later, with more strength. But quickly day by day Alice gets worse, on the 31st the control resonance denotes a spread of the disease, Alice begins in a few days to no longer be able to walk and speak. Her last visit now faces her in a wheelchair, she now sleeps almost all day. That’s enough, we don’t want to torture her anymore. She decides to rely on home assistance for palliative care, until Alice flies away peacefully on November 25th.
We have tried to make her last days always serene and peaceful, we parents, her brother and her boyfriend.
What I have written does not want to be just the history of a sad and terrible disease, on the contrary Alice’s story is one of great strength, tenderness, love and sweetness.
The story of her wonderful smile despite everything, of her determination not to give up, because one must never give up and never lose hope of being able to make it. Those who knew Alice loved her, she is with us and in us.
Thanks for listening, Mara”
Merry Christmas and a Peaceful 2023 to all those fighting glioblastoma and their loved ones. May this story give you further strength to carry on. A hug to all of you.
Thank you for a most beautiful and heartfelt telling of your daughter’s Journey. I am 56 and just got diagnosed in May, MRI and surgery that same month. 99% resection and of course I did the same SOC care with Temodar. I started Avastin a little earlier than you daughter due to an MRI that showed “potential for disaease progression” I think they said. My latest MRI was clear but I’m keeping my “optomism cards” close to my chest.
Reading between the lines, it looks like Ali made it a little more that 7 years. That in itself gives me tremendous hope. When I first started poking around on the internet, I saw the dreaded 5 to 14 months. Then I came here and saw the people that had made 5 years, just saw someone was 8+ years and dancing.
I get an official prognosis from my Oncologist on Wednesay (I asked for it) and I feel it will give me a goal to beat. Your story just adds to my ammo to make that a reality. Thank you so much for sharing.
Ciao Jim, ti auguro davvero di farcela, perché dovrete essere sempre di più, Alice ha dimostrato in questi 7 lunghi anni che si può stare bene e sono felice che il messaggio che vogliamo dare ti sia arrivato. Ogni storia è unica e noi non abbiamo mai creduto ciecamente alle statistiche. Non arrenderti mai.