2023-12-21 06:14:21
Lucas remembers a secret passage that he loved, via this small garden which leads directly from the Gustave-Roussy Institute to the “parents’ house”. He also remembers the caring medical team. And this “noise machine” in which he learned to stay still when he was very young, at 6 years old. He liked this MRI less… He smiles, changes the subject, twirls around the tree he is about to decorate and hangs a few garlands around his neck before bursting out laughing. No more questions. Lucas is a 12-year-old boy, so bright that he takes his whole world with him.
A kid whirling with life, normal, with one exception: he is a unique case for the scientific community. Lucas is the first child in the world to have probably overcome a brain cancer deemed incurable: infiltrative brainstem glioma. An orphan disease, without treatment, the greatest challenge for pediatric oncological research, since it mainly affects very young children whose median life expectancy after diagnosis is very poor: around eleven months.
Surrounded by his parents, Lucas, 6 years old, begins his treatment at Gustave-Roussy. Villejuif, September 2017. © DR
His story is a miracle, but above all it offers incredible hope to research. On December 27, Lucas will celebrate a double birthday on the ski slopes. He was 13 years old and stopped taking everolimus for a year, his daily medication for five years. Lucas doesn’t want to think about this anymore either. “He knows well what is happening to him, he knows that he was lucky, but it’s not like a prize or a competition that he would have won. At school, teachers tried to talk to him about it, but he refused. A preteen doesn’t advertise himself with that! » says Cédric, his father.
“When the illness broke out, we had to cancel everything”
For the first time, Cédric and Olesja dared to book their Christmas vacation with Lucas and Tatiana, their two children, “a little” in advance. “When the illness broke out in July 2017, we had to cancel everything. From then on, it was over. Impossible to anticipate anything during these six years. We no longer made plans,” adds Olesja.
It was on vacation with his grandparents in the Netherlands that the little boy began to experience loss of balance. The MRI reveals the presence of a lump in his brain. At the Saint-Luc hospital center, in Brussels, where he was first treated, a neuropsychiatrist referred him to the Gustave-Roussy institute, in Villejuif, in Val-de-Marne, where an unprecedented clinical trial, led by Dr Jacques Grill, has been taking place since 2014.
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JACQUES GRILL AND HIS TEAM From left. to the right. : Marie Simbozel, early trials pediatrician, Laurence Tartier, clinical research assistant at Biomede 1.0, David Castel, Inserm researcher, Isabel Goncalves, clinical research nurse, Samuel Abbou, early trials pediatrician, Angèle Priso, clinical research associate at Biomede 2.0, Thomas Kergrohen, bioinformatician from Biomede, Marie-Anne Debily, teacher-researcher, professor at the University of Évry, and the doctor-researcher Jacques Grill. PARIS MATCH / © Benjamin Girette
Intended for children suffering from an infiltrating glioma of the brainstem, it offers targeted therapy according to the different anomalies detected in each tumor. “In Brussels, we were simply told that the diagnosis was complicated. They said the words infiltrative glioma, but it wasn’t very clear. They gave us cortisone to reduce the inflammation. At that time, no one told us about the low life expectancy. We understood it a little later. But as parents, it’s impossible to dwell on the terrible survival statistics anyway, otherwise we collapse,” explains Cédric.
Sleepless nights, internet searches…
For the family, that summer, it was as if time, while becoming denser, stretched indefinitely. There is Lucas, who must be looked after and reassured; the big sister, still very young, to whom we also have to explain the illness, the paperwork, the S2 form, which allows a person insured in a country of the European Union to receive medical treatment in another country because , Lucas being Belgian, it must be proven that no other therapy is possible anywhere other than Gustave-Roussy. Which takes some time.
In the meantime, there are sleepless nights for Cédric, who never stops doing research on the Internet. One evening, he came across the Facebook page of parents of children suffering from the same illness as Cédric. Some say a supposedly miraculous treatment exists at a clinic in Monterrey, Mexico. Each phase costs between $20,000 and $30,000, and cycles are repeated every four weeks. In the hope of saving their child, some put their house up for sale.
A thermoformed mask allows you to keep your head still during the radiotherapy session. ©DR
“We were hesitant. We managed to get someone on the phone, he introduced himself as a doctor. It didn’t fit into any framework. We understood that he was ready to try anything and everything. He supposedly had access to all the molecules without approval from the FDA, the Food and Drug Administration. Previous results were not published. We had to accept a “magic cocktail” without asking too many questions. It was messed up,” Cédric remembers, as if sorry for even having thought about it.
The said clinic would have closed down during the pandemic, but others continue to offer their alternative services to families in distress. Cédric and Olesja fortunately chose to take their son to the supervised experimental treatment of Gustave-Roussy.
So, head to “Biomede 1”, named after the trial, with a caring team. Lucas must pass the biopsy preamble. ” For two reasons. Firstly to prove the nature of the tumor, because with a simple x-ray we are wrong one time in ten. The goal is to only treat patients with this glioma. Second reason, to be able to carry out more precise analyses, therefore sequencing all the DNA of the tumor. Which, for this disease, had never been practiced before in the world,” explains medical researcher Jacques Grill, who will now follow the child as he follows nearly 250 children and a handful of young adults.
“Lucas had an unprecedented evolution in the history of science”
The treatment combines a series of thirty radiotherapies with daily intake, in Lucas’ case, of everolimus. With each MRI intended to monitor the progression of the tumor, Cédric and Olesja hold their breath. And, with each appointment, the result is a little more surprising… even spectacular. Not only does the child stabilize, but the tumor slowly disappears.
Everyone stay careful. The word “cure” does not exist when talking about the disease of infiltrative brainstem glioma. Because it has never happened before. “Lucas had an unprecedented evolution in the history of science,” explains Dr. Grill. Out of 250 patients followed in this protocol, only around ten did not die. It’s not much. There are eight “long survivors”. But Lucas is different: his illness has disappeared. What we call an extreme phenotype. I’ve never seen that. For this tumor, the median life expectancy is eleven months. Half of the children die before then. For us, it is the worst disease in cancerology. »
From now on, the check-up only takes place every six months. But everyone remains cautious: the word “cure” does not yet exist for this malignant glioma
Lucas’ tumor actually developed an extremely rare abnormality that would have allowed the good response to treatment. At the Gustave-Roussy lab, the team is working with the immense hope of reproducing this anomaly (mutation), testing it in vitro on the cells of another child and then verifying that the tumor no longer grows, and thus to develop in the future a drug capable of reproducing the same mechanism. “Lucas’ tumor is a “learning machine”. We realized that with the same disease the tumors were different. The idea is not to have one treatment, but several, depending on this or that type of glioma,” notes the pediatric neuro-oncologist.
His sister, Tatiana, 15, teaches him the recipe for muffins. Lucas (right) prefers photography to baking… Brussels, November 25. Paris Match / © Benjamin Girette
At the same time, analyzes were carried out on other small survivors, with drug leads already identified. But Lucas represents the most interesting case, insofar as his mutation is accompanied by a disappearance of the tumor.
Parents hope their son’s case will advance science
Today, in Gustave-Roussy, everyone is working hard with a second phase of testing called “Biomede 2”. For 360 small patients, everolimus is compared to a new drug, ONC201, developed by an American start-up. “Before and even now, when the diagnosis of malignant glioma occurs, some doctors tell parents: “Your child will die within the year, make the most of it, create memories. Go to Tahiti.” Thanks to this research, therapeutic choices will broaden and the discourse could change radically,” concludes Jacques Grill.
Cédric and Olesja don’t know what to answer to the few parents who ask them what diet their child follows, what is its particularity? They just hope his case will advance science. For Lucas, the exams have now become less frequent. The check-up only takes place every six months.
But, for Cédric and Olesja, it still causes the same stress. So, they decided not to look at any more imaging and rely on Dr. Grill. They can take an example from their “long survivor”, as science still tempers it, the one who could soon save thousands of other children: all they have to do is watch him clown in front of the Christmas tree. Carefree, finally.
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