Many fathers and mothers are unable to read this kind of reports in which it is talked about diseases and other problems that affect children.
They think that they could pass them to their children and they do not support it, but precisely why it is important that they know the testimonies, they know that nobody is safe from going through such a situation, but there are solutions, there is hope, and for the stories
They end up like this that we are going to tell them, with happy ending, the research is key.
Especially in childhood cancer, whose international day is celebrated today, to remember and emphasize that although cancer in children is considered rare and that survival has increased considerably in recent decades (80% is cured), follows
being the first cause of disease death in children from the first year of life.
“In general in pediatric oncology after the first line, when patients fall, there are no standard treatments, it is necessary to enter clinical trials,” says Alba Rubio San Simón, Chief of the Unit of Precocious Children’s Children’s Hospital Children Jesus.
from Madrid.
It is what happened to Jairo, 6,.
He was barely 3 and a half years ago when he was detected, in April 2019, a neuroblastoma, “the most frequent extracranial solid tumor,” says Dr. Rubio.
It is formed in immature nerve cells (young), most of the sympathetic nervous system (the one that controls, for example, blood pressure, heartbeats or digestion of food, among other things).
In the case of Jairo, it was also diagnosed at a high-risk stage, “in metastatic advanced stage, something that occurs approximately in half of children with neuroblastoma,” aims blond.
It is potentially curable, but half of the children with this diagnosis dies.
Standard treatment is quite intense and has several steps: initial chemotherapy, surgery, autologous marrow transplantation (self-closet), radiotherapy and immunotherapy.
Jairo put the first chemium in May 2019 in Tenerife, where he resides and detected the disease, and he completed radiation therapy in December of that year, in full remission, that is, at that time he was cured.
But in October 2020 he presented the first relapse in the form of metastasis in the bones.
“At his hospital in Tenerife, they put a second-line chemotherapy, which is what is usually done with patients who fall, a rescue chemotherapy we call, and with that, it decreases the disease burden, but it does not reach the full answer,
Disease persists and there is when they talk about the clinical trial that we had open in the Child Jesus and contact us to include it, “says Rubio.
Pediatric trials are restricted to very few hospitals since they are very specific and for very specific patients, the specialist adds.
At that time, June 2021, the entire family takes its suitcases, full of uncertainties and new ones, to be planted in Madrid.
Jairo, the father of his Francisco Javier Pérez González, the mother of him Yurena Pérez Rivero, and his little brother Julen, from now 3 years old.
Yurena worked in Administration and since Jairo got sick she caught her down to take care of him.
“I dedicated myself to staying united because it is one thing that affects the four members of the family. We were going to Madrid? Well, we were all four together. We came back for Tenerife? Well, we came across the four. There are dads who face sickness.
It is very difficult”.
Corrobora Javier, her husband: “That has been fundamental, being the four united. It’s many hours and many days in the hospital, and it is important to stay strong and support, when one is a bit triston the other strip up”.
Javier worked in a family workshop and after a few months he also ended up catching the downside.
“Everyone asks you and that I’ll give you, I did not want to get home so they would not see me wrong, I was going to cry and download and returned with a good face, so that they will not notice anything. With the diagnosis you know when you start, but
There is no departure date. Our work has been him because nor take care of us, nor do sports, or eat well … “, says Javier and recalls, for example, the 25 days locked in a room with Jairo when they did the
Marrow autotransplant (isolated completely since the little one had no defenses).
“My wife brought me the clothes in a bag and showering me there but without getting out of the room or seeing the hall.”
“Everything is affected, also our relationship, because family moments focus on talking about Jairo, who recovers, that it is well,” Apostille Yurena.
The clinical trial in which Jairo was included is with Naxitamab, a monoclonal antibody (immunotherapy) that works basically locating and attacking molecules, GD2, which are on the surface of neuroblastoma cells.
It is a product that has been developing some years from which there is some information regarding effectiveness and is known to be useful in a percentage of patients, but it is within clinical trial.
Today he does not have the approval to be administered, he wants to get through the results of this essay.
The treatment is infused to patients a week every four, on Mondays, Wednesdays and Fridays.
“The first reevaluation we do according to the Protocol is two months, that is, two entire treatment cycles, six infusions. At the six infusions it was already seen Jairo had improved the metastatic injury he had, had decreased. Then he
We administer two other cycles, another six doses, and we saw that the injury had disappeared and already entered into full response. Now what we are already giving is a consolidation, another five cycles to consolidate that response and with that ends the treatment, “details the
Blonde doctor.
Naxitamab in general has less toxicity than standard chemotherapy, explains the blond doctor, although it is not exempt from side effects like all drugs and treatment.
“There are other cells of the body that may also have expression of GD2 and depending on where they are located, it is justifying the toxicity that this drug can have. For example, the cells of the nervous system, which is where neuroblastoma is generated, can be generated.
to express it, that is why one of the toxicities may be the pain. Part of our nervous system is involved in how our tension is regulated, so it can also alter the tension (hypotension or hypertension). And then also, like almost any drug of this
Type of antibodies, it can give allergic reactions during your infusion and that costs a little breath, which leave spots … “, says Rubio.
Are the symptoms that Jairo manifests, “some hives on his skin, especially in the first cycles, and now above all is that at 10-15 minutes of applying the treatment he is lowered oxygen and tension, and you have to put it
Oxygen, but then recovers and in two hours is already running around here without problem, “explains Javier.
“The advantage is that children tolerate better than adults these treatments so intense, an adult would leave it dust and children in infusion can have complications, in fact, we manage it very sedanalegesiaded that is called, not anesthetized at all
But with a sedation so they do not feel pain, but when the infusion is stopped and in the afternoon they begin to be better and having activity, many children even go to school on alternate days to treatment and are perfect, “explains Dr. Rubio.
The first time they stayed in Madrid a month and a half, since the first cycles are tolerated worse.
Now they come for the week that lasts the treatment and someday more “so that it does not only stay with the bad memory of the hospital, but always have the last one a good memory that we went to a park, an amusement park and
Go otherwise, that is not just being locked in the hospital, and also Julen, which although it is very small has also been also deprived of going to many sites and doing many things for the situation. Now that Jairo is better and we lend him
More attention to Julen We realize how big it is already because we had overturned more in Jairo, “says Javier.
Now that there are no traces of cancer, they think about celebrating it with the family, “A family meal, with friends when the pandemic passes, and take a while to adapt to normal life again, a few months to be calm and enjoy, before
Return to work and lead a normal life, “says Javier, who accompanies Jairo in the hospital.
Yurena, on the phone from the apartment in which she waits for them with Julen, stands out: “Something for them to live a different experience, a trip maybe, now in the summer season.”
And how has Jairus himself lived?
“We have always told the truth, although adapted to his age, and he does not ask a lot. When he fell his hair he asked why he did not have and I said: ‘Treatment sometimes burns bad things and good things.
And he looked at the mirror and for him he had hair and told me to throw him Gomina, “says Yurena.
“Since 3 years old, he began to see doctors, so he sees him as a normal thing, and he is superb, he behaves superbien. There are times she has next to a child who is clicking and gets to cry and he does not, ha
It was very adult. He is a child who makes it very easy, and us too, because of the way he has taken us a lesson of life, “adds Javier, and asks” Have you heard it now complain?
“.
While we speak, nurses have been entering and leaving the room where Jairo is in the Child Jesus – “on the bed, Bichito”, asks him for a- to prepare him before receiving an infusion of immunotherapy.
For this, he has been placed a way and Jairo has not been immutated, while playing with a tablet and smiles at the comments of the nurses: “He is a very collaborating child, he does everything right, everything perfect! It is also the only child
who has entered and has come out of the UCI on a skateboard “.
And it is that Jairo does not stop being a child, he says that what he likes most about the hospital is to play when the cole ends (the school that is in the Child Jesus for children entered).
He is now learning to read, he has to strive a little more, but little by little.
“We have been so focused on recovery and treatment that what has been less concerned about is the school, it cared that he played, who was excited, that he was happy,” says his father.
Yurena emphasizes that this experience has changed her life.
“It makes you develop that part that lives with you but you do not finish developing it because it does not happen to this guy. Once it happens to you, you have another expectation of things, anything simple you live intensely, it’s like a one before
and one later.
For Javier, “you spend more person and more aware of the problems that people have. We have shared moments with other families, some of those children have stayed on the road and it affects you because you take love and because you think it could be
Your son “, although he highlights that they have always been positive and thanks the whole team of the Child Jesus.
“Nurses have helped us a lot, psychologists have been a fundamental part, the social assistant with all the paperwork and telling us the help we could welcome, has carefree of many things because you do not have a head in those moments to attend all that
… “.
“I hope there were more treatments like these, experimental, for me they are the future, I have it very clear,” he incides Yurena.
“Thanks to what we have had this possibility, if not Jairo would not be now, the research is fundamental, people do not realize until you are in a problem and you need it,” adds Javier.
Clinical trials are fundamental in pediatric oncology, where it is the only output for children who fall if the first line of treatment does not work.
By not having a history of research in children, there are many drugs that are used out of indication, explains the blond doctor, for example, applying an adult drug at a smaller dose.
“Chemotherapies that are used all over the world have not been investigated in children, now it does not really make sense because for the time they have been used, they have demonstrated their effectiveness, there is a clinical evidence, but there has been a risk.”
Although trials are not always useful – “not only in pediatrics or in this hospital, in general of every molecules that enter clinical trial one has approval,” Rubio details – the specialist points out that at least a different medication will have been tested.
to which it can be offered at its hospital of origin “and those data, if unfortunately they do not serve for that patient, they are information with which we stay in science that can help other patients and families feel that they leave a granite of sand
It is something that many times I have been transmitted to me as something that comforts them: ‘Without research these children do not go ahead, with which if for us it has not valid, that at least let’s leave this. ”
The chief of the unity of early clinical trials of the Child Jesus, created in 2013, emphasizes that we have an obligation as a society to try to offer innovative treatments to these patients to improve their survival and reduce toxicities. “Children are much less favor, much less well away from the investigation. In the case of childhood cancer, children die of carcinogenic diseases and not only die, those who live doing it with very serious sequelae by the treatments they receive, So children have the same rights to access innovative treatments that save their lives and leave less sequels. Setting out of research is to discriminate them, it is marginalized. Of course it will have to be done with legal requirements and with all precautions , of course, but not that idea of protecting children from research, not, protecting them with research because if they do not investigate in children, treatments do not exist, some also for diseases that are only given in pediatric population, such as neuroblastoma. What do we do? Do children kill and it’s already? They can not be a second population. ”
Pediatric clinical research is a slow process and in our country it is also relatively recent.
The unity of early clinical trials of the Child Jesus was created in 2013, for example.
There are some drugs that have obtained approval, but there are many who are still under study (or have not demonstrated efficacy and have been closed) since since it begins an essay until the treatment is approved we speak of 7-10 years.
In the child, Jesus is currently between 80 and 90 oncological essays, the most numerous.
“There is digestive, endocrine, dermatology … but what is more agglutin is a reflection of the specialization of the hospital in this area, in the Child Jesus oncology is very powerful,” says Dr. Rubio.
The specialist points out that each year the number of investigations has been increasing.
“Last year were about 50, the previous one with the Covid maybe less, around 40. But every year the number of trials increases exponentially because there is more and more awareness of its importance and need, and more and more children are derived
from other hospitals in Spain and more trials are opened. In a ‘Paper’ published by this hospital together with La Paz, the Vall d’Hebron, Sant Joan de Deu and the faith of Valencia, we collect this evolution of oncology essays
Pediatric in Spain. In 13 years, from 2007 to May 2020, a total of 565 children have been included and each year has been exponential, “says Rubio.
“Another claim for this ‘Paper’ is that leukemia is the most frequent tumor in pediatric population and on the other hand there are fewer clinical trials than in other tumors, should increase those of hematology. On the other hand, increases have occurred above all by
Part of the pharmaceutical industry, investigate more than the hospitals themselves and universities and it is something that we should improve, at least seek what the difficulties of academic research that, in reality, we already know: lack of funding and personnel,
Not capacity “, emphasizes the doctor.
In this regard, the specialist adds that the increase in the industry was propitiated by the European regulation of 2006. “Prior to that year there was no regulation in this regard. EMA requires that when a drug is investigated, for example, before
Doing so in adults have to have begun the clinical trials in children, unless they have an exception: that there is no disease in children, which is foreseen with toxicity, etc. The fundamental exception is that the disease does not exist in a pediatric population.
But this that has favored child research, in pediatric cancer has been torn by a little, “says Rubio.
“For example, breast cancer? No, it does not exist in children, so when studies of some molecules are initiated, child research is not done, but it is that some molecules are directed to a cellular peculiarity that in addition to cancer Breast exists in other pediatric tumors, it could have relevance. It is something that we have been fighting time from the academy: we do not take away the exception by type of disease, but by molecular alteration to which it is directed. It happened 10 years ago when crizotinib was approved when Lung cancer, was not investigated in children because they do not have that cancer, but the ALK mutation present in this tumor for which this medication is directed is present in some pediatric tumors. It had to be since academic research where trials were done in children and last year the drug was approved for a child tumor, a type of lymphoma, “explains Rubio, who adds:” It seems to me that the regulation that goes to the mechanism of action M is currently valid Olecular and now when European law is renewed, at the end of this year or principles of which it comes, it is also going on that way. ”
In Spain, except for some exception (it puts the blinatumomab as an example blinatumomab, a monoclonal antibody for acute leukemia, which has the approval of the regulatory authorities of some countries in Europe but in Spain it has to be asked for compassionate use), the main stubborn It is not in the approval of treatments by the AEMPS, but in the initial phase: access to these clinical trials. “First that they are believed, that they are increasingly more. In the child Jesus right now there are about 80-90 of oncological type. Second, which are available for patients, who are more easily to be included. Many times patients or Even the local doctors own do not know the trials and do not know if they have to derive a patient or not, that is something that in recent years is changing a little mentality in Spain. In some cases too, and this is another stumbling block, It is not to get away from home because the health system does not finance the cost of patients moving to be within clinical trials. If they go to an approved treatment some communities have aid, but if it is a clinical trial there is nothing, “he explains Blond.
