Talking about childhood cancer, on such a day as today International Childhood Cancer Day , and doing it with a mother who has seen a child suffer from this disease is doubly hard. But when you talk with women like Alicia, with such strength and serenity , she manages to infect you with optimism.
Of course, no matter how much she assures that “anyone does not discover how strong they are until they go through an extreme situation”, I still think that she is an incredible woman.
During the interview she has managed to move me on many occasions and her words have touched my heart so much that I have decided that she should be the one to tell the story of Pablo’s overcoming, who was diagnosed with Medulloblastoma or, in other words, a tumor cerebellum in the cerebellum in 2017, at the age of nine.
Also, let her own words express the pride she feels in being her mother and tell her about her experience to help other parents who are facing a brain tumor right now.
A happy ending
Pablo underwent emergency surgery and he left the operating room without being able to walk, without balance, with double vision because they had touched a nerve, nothing unusual in such a delicate operation.
A month later he began microchemotherapy treatment (a little chemo and then more radio) and after six months of alternating breaks with strong cycles of chemo. They were admitted for five days and even from home they had to go to the hospital because their platelets were low. On January 25, 2018 it ended. At first they were reviews every three months, now they are every six.
“It’s okay and we keep moving forward.”
Alicia explains that she did not even miss a grade when she was undergoing treatment because teachers went to the hospital and home to help her and she finished the entire course.
“He leads a normal life, he goes to school with the rest of his usual classmates and fortunately he has already left rehabilitation and as a consequence he has only had hearing loss in one ear, lack of balance and a certain delay at the time of running on the left leg that shows that something is wrong with it, but that it is not barely visible “.
“The only difference with other children his age: that he cannot jump, because he has no balance.”
But this is not a problem, according to Alicia: “He is a completely happy child, supported by his schoolmates , who even encourage him in Physical Education classes, perhaps the most complicated for him.”
But he recognizes that the road to get here was not only hard for Pablo, but also for his family. Alicia was 20 weeks pregnant when she was diagnosed with the tumor and sadly acknowledges that she missed the first eight months of her young child.
“I turned to Pablo, because he was the one who needed me the most, to the point that they scheduled the delivery during a break from chemo so that I could be by his side in the next cycle.”
She says that she and Pablo’s father are separated, “although we get along very well and even celebrate birthdays together, with our current families .” Pablo has a seven-year-old sister, on his father’s side, and a two-year-old brother, Samuel, my son and Rubén’s, my current partner.
Alicia recognizes that she feels very lucky to have the support of such a close family, especially during Pablo’s illness, where they made pineapple.
She also speaks excitedly of the strength and courage of her eldest son “very mature for his age” :
“He came back from the radio badly and even without hair, vomiting, he didn’t complain and told me he was happy because he felt loved .”
She affirms with pride as a mother that Pablo ” has given us an example of strength and courage. Even so the medical staff told us. When other older children protested during treatment, he defended them and encouraged them not to move because the more you move , the more it will hurt. “
“The truth is that he made it very easy and was an example of strength for us. It was as if she thought that since I looked pregnant I’m going to avoid her at least the drink she’s suffering from ”.
“Do you think I didn’t know there was something serious about him?”
It was the first thing Pablo let go of his father when the two of them spoke to him to tell him what was wrong with him.
His mother explains that when they received the news they preferred not to tell him the truth but that they had to talk to him, as the oncologist suggested, before starting the treatment, because it was going to be very hard and he had to understand what was happening to him:
“It is important that they trust you, that they listen to you say that you are in a hospital and you are going to be cured, without looking further or thinking about the fears. Let it relapse.”
Alicia assures that Pablo is so good that he tried to make things so easy for him, even while in the ICU.
“I discovered him when I woke up from a navel during my pregnancy, taking off a patch and he told me: ‘you sleep so little that I didn’t want to wake you up and like when I take something off the machine sounds and the nurses come, I wanted them to come to help me go to the hospital. bath without bothering you. ‘
One gets excited just remembering: “It is as if he had come to this world knowing what he was going to suffer and that is why he is so strong and he faces problems with the best of his smiles.”
In fact, he explains that every time they go to the hospital for a check-up, he vomits, and instead of saying that it is because he is nervous, so as not to worry his parents, he tells them “The hospital does not suit me.”
“The diagnosis, the worst day of my life”
Alicia assures that she has that moment and that day etched in her memory. She assures that she left the room and could only beg, touching her pregnant belly: “Please God, don’t take one away from me and give me another.”
She feels fortunate, since she was sheltered by her loved ones at that time and throughout the entire journey. At her side were Pablo’s father, her husband and her sister, who arrived immediately as soon as they heard the news.
He was not alone during Pablo’s harsh treatment: he did not leave his side: he requested maternity and work leave and later leave to care for a sick child. Because Alicia asked her husband Rubén to be by her side, because the three months were very hard and she did not feel capable of going without him. He was able to sacrifice his job position to be by his side.
It was Rubén who took care of the baby since he was a newborn and that has been engraved in his little head because his mother assures that, if he has a problem, he continues to call his father.
Alicia admits that she slept with her oldest son in the hospital, but also at home in case he got sick or needed something.
In addition, he affirms that you recover right away, because there is no time for regrets.
He points out that “from the door to the inside of the room, all parents wear a smile mask, we play, we joke with our little ones and when we can’t take it anymore, we go outside and vent to each other.”
“It is so important that your child is happy and feels good that you bite the bullet. Our children are going through hell and we have no right to decay in front of them ”.
And more in our case, that Pablo has fortunately been cured, like many other little ones that I have seen come forward thanks to the CRIS Foundation.
Explain that in childhood oncology everyone is a great family and they support each other, because whoever has not gone through something similar cannot understand you , no matter how much they love you. For example: “Just one detail: you go home to rest and ask people close to you not to call you, because if the phone rings, you think of the hospital, the worst.”
“It scares me a lot to lose Pablo, but it scares me a lot more that he suffers.” And I even feel bad for thinking these things, but I can’t help the fear and anguish despite being so lucky.
“You always live in fear”
The end of the treatment came and Pablo and his father made their little celebration party in the town, burning the chemo bag on a bonfire.
Alicia assures that her son leads his normal life and does not seem to think about a possible relapse (at least he does not verbalize it) although the doctor always speaks clearly in front of him. He is aware of everything.
“It is difficult to explain, because when it heals you have mixed feelings. On the one hand, you are happy, because it is cancer free, but on the other hand you think that with the chemo it was protected and if there were any bad cells it would kill it. But now the feeling of having thrown yourself into the abyss assails you ”.
In fact, he adds that of the five children who were admitted with Pablo for the same tumor, he is the only one who has not relapsed. “So for the first three months after finishing the treatment, I was terrified, although I was happy not to see him suffer with the cycles.”
“I fight fear by keeping my mind busy”
To try to handle that fear as well as possible and learn to live with it, Alicia has discovered that what works best for her is to keep her mind occupied, to help others.
So he collaborates with the CRIS Research Foundation against cancer and gives talks in schools and companies to raise awareness about childhood cancer, participates in solidarity markets and musicals …
“Everything that is necessary to help other children and obtain donations to continue researching. 170,000 euros have already been donated to investigate Pablo’s type of brain tumor and thanks to this the children who were admitted with him will be able to participate in a clinical trial that has very good expectations. “
In fact, the CRIS Foundation explains in 20 years with research this disease could end, which is the main cause of mortality in children and adolescents in our country.
Continuing with the # 2040YearOfWhenAlCancer campaign, supported by research scientists, CRIS considers it essential to invest in 4 challenges to defeat childhood cancer: central nervous system tumors, leukemia, (with Natural Killer cell therapies), metastases, ultra-rare diseases.
And that’s what Alicia has focused on, helping in everything in her power. She has even reduced her work as a freelancer part-time in order to be more involved.
He adds that it is curious that the worst thing that has happened to me in life, seeing his son suffer and thinking that he could lose him, has changed him: “I am no longer burdened by anything, except for Pablo, because we do not value what we have until we we are about to lose it. “
But if I had to talk to other parents, I would speak frankly to them: “It is a very difficult road, but you will learn to live with it.”
Photos | Courtesy of Alicia Gómez
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