The Most Special First Communion

On May 9, Jaime received his First Communion, which is quite common during the month of May. But in the case of Jaime and his family, it was much more special than usual, because in just 8 years of life, he has suffered from no less than two brain tumors—one of which has been cured, and the other has shrunk by 60 %.  This is what makes Jaime’s First Communion—which the whole family has experienced with great faith—so much more moving.

They say that behind every great man there is a great woman. Applying this to Jaime’s case, we can say that behind him there is a great father and a great mother, Antonio and Elena. They are a living testament to faith and hope, because they are raising their family—through moments of darkness and light—but always with enthusiasm and trust in God. Through this publication, we have been fortunate enough to interview this family and get to know them better.

Could each of you tell us a little bit about who you are and where you're from? 

– [Elena]: I’m a pharmacist and the mother of three children—two girls and our son Jaime. I work at a pharmaceutical company, but I’m currently on leave to care for my children who have cancer or another serious illness, so I’m devoting myself to caring for my children—especially Jaime—ever since he was diagnosed with a recurrence of his brain tumor.

– [Antonio]: My name is Antonio, and I'm an architect. I run my own interior design firm that specializes in residential spaces as well as sacred spaces such as parishes, monasteries, and chapels.

What was life like in your respective families? 

– We come from families that have been settled in Madrid for many years, where we have been showered with love and care and have received a solid Christian upbringing and education in human virtues, with a deep respect for freedom and a focus on fostering personal responsibility.

Have you received the gift of faith within your family? 

– Yes, our families taught us to pray and to have devotion to the Holy Family, as well as to think of others and be generous toward our siblings, friends, and neighbors. In addition, our parents sent us to Christian schools, where we reinforced the values we had learned at home.

How did you meet? How did your relationship begin? When did you decide to start a family? 

– [Elena]: You could say we met because some friends of ours set us up. A friend of mine told me she was going to introduce me to a friend of her boyfriend at the time. The four of us met up for dinner one night, and that very same day, love blossomed between the two of us. Later on, we started dating, and a year and a half later, we got married.

What were your first few years of marriage like? 

– Very happy. We had very few resources, but we hardly needed anything. We rented a small apartment in Paracuellos de Jarama—one of the most affordable rental areas in 2014—which was close to our jobs and seemed like a quiet, safe neighborhood to raise our children, at least during their early years.

How many children have you had? How old are they now? 

– We were looking forward to having 3 or 4 children, and soon our first child arrived: Celia. She is now 10 years old. Shortly after that, Jaime was born; he just turned 9, and later Miriam was born; she is now 5 years old.

But at some point in your lives, things started to take a “twist,” and life became more exciting. To start with… What was it like when you got that “cold shower” of a diagnosis—when they told you that Jaime had a brain tumor? What treatment did you receive? 

– Yes, up until that point, we could say we’d led a simple, uncomplicated life, and the news of Jaime’s illness changed everything. 

Jaime had been experiencing sporadic, severe headaches for a few months, along with occasional vomiting. We took him to the doctor—and even to the hospital closest to our home—on four separate occasions, but they always thought it was gastroenteritis or a headache of unknown origin. Since these were isolated episodes and they didn’t think much of it, we remained calm, though we kept a close eye on him in case his condition worsened.

After a few weeks, it became clear that it was something more serious. Another episode of severe headache led us to decide to take him directly to the emergency room at a hospital that specializes in children, so we went to the Baby Jesus. Even so, it took two visits and a sudden bout of vomiting before they detected it there, after deciding to perform a CT scan.

When they told us he had a brain tumor, we couldn't believe it. We thought illnesses like that only happened to other people. Our hearts sank, and then began a series of battles we had to face—the first of which was comforting our son so he could stay calm during this extremely stressful situation.

First, he underwent emergency surgery that very night when we went to the hospital to have a drain inserted. The headaches were ultimately caused by hydrocephalus resulting from the accumulation of cerebrospinal fluid, which was caused by the brain tumor. They performed an external shunt procedure, which went quite well.

A few days later, he underwent surgery to remove the tumor. Although the surgery succeeded in removing most of the tumor, it left him with serious complications that would completely change Jaime’s life: he had developed posterior fossa syndrome, a complication of surgery for this type of tumor that occurs in 25 % of cases. He came out of surgery unable to walk, eat, or speak, with no fine or gross motor skills, and in a state of great emotional instability. As if the news of the tumor weren’t enough, now this syndrome.

From that point on, we entered another world—one that was new and unfamiliar to us: the world of functional rehabilitation. We were very fortunate to be at this large hospital where, at the Brain Injury Unit—which had been established only a few years earlier—physical therapists, occupational therapists, speech-language pathologists, and neuropsychologists were able to treat us right in our hospital room.

A few days later, he underwent another surgery to remove the tumor completely. The surgery was a success, and they were able to remove it entirely. Afterward, they explained the treatment plan they would follow to prevent the malignant tumor from returning: proton therapy and chemotherapy.

We were very fortunate to be able to receive the proton therapy treatment offered by the University of Navarra Clinic in Madrid, under an agreement with Social Security for such cases, where he could receive radiation in a more controlled and less invasive manner than with conventional radiation therapy.

After 30 sessions at this clinic, he began a long course of chemotherapy that required monthly hospital stays and forced him to leave school due to a severe drop in his immune system. However, his rehabilitation has continued uninterrupted since he left the operating room after his first surgery, and today he continues with it daily, having made significant progress.

Time passed, and just as Jaime was starting to “recover” from the first treatment—and you were beginning to get over the initial shock—you received the news of a second tumor. How did you react to this news? 

– Honestly, we never imagined this would happen. We knew it was a possibility, but we were so confident in the success of the surgery—since they had managed to remove the entire tumor, which reduced his risk—as well as in the proton therapy and chemotherapy, that we thought the cancer wouldn’t come back.

It had been a while since his treatment had ended, and his MRI scans were coming back normal. We were focusing all our attention and efforts on his functional recovery, and he had managed to regain most of his abilities, except for fluent speech and, especially, his balance. At that time, our greatest hope was that he would be able to walk on his own again, without the help of his walker.

Then he began a new course of chemotherapy (oral, intravenous, and intrathecal). Everything we had placed so much trust in seemed not to have worked 100 %, and we had to try other options. Fortunately, we were at a major hospital. We researched possible treatments in other parts of the world and were reassured to learn that the treatment offered to us at El Niño Jesús was yielding good results.

What is your daily life like? 

– [Antonio]: We get up at 6:45 a.m. to get ready and take care of the kids. Jaime starts his day by taking several oral chemotherapy medications with breakfast—he takes them every day. Then Elena takes them to school, and I start working from home or go out to visit construction sites, clients, or suppliers. On days when Jaime doesn’t have intravenous or intrathecal chemotherapy at the hospital, he goes to school with his walker and his Care Assistant Level III, Dani, who is like his guardian angel. Dani helps him get around—whether it’s going to the bathroom, heading to the cafeteria, or during recess—and encourages him to join in with his friends and play with them just like everyone else. Jaime loves soccer and enjoys playing from his walker—his friends have to be careful if they want to keep their ankles safe, even though his walker has cushioned wheels.

At 5:00 p.m., Elena picks up the girls and I pick up Jaime. Right after that, we head to private clinics for therapy sessions: vision therapy, adapted sports, or physical and occupational therapy, depending on the day. On Tuesdays, he always has blood tests at Niño Jesús to monitor his levels. At the end of the afternoon, we head home, and Jaime plays with his sisters for a bit before we all take a bath. Then they have dinner and go to bed.

Do you think that everything that has happened is part of God's plan? Do you trust Him when what's happening doesn't make sense?  

– At the beginning of the illness, we wondered why this was happening to us; it felt like the hardest thing that could ever happen to us. As month after month went by—with us going to the hospital almost every day and learning about other cases—we gradually realized that there were many more families facing illnesses and situations that were far more complicated. That helped us pray for them, admire their strength and love for their children, and also give thanks for what we had and the progress we’d made.

There we discovered more clearly than ever that we all have our own cross to bear, and that no one’s cross is better than another’s; rather, the key is to embrace the one that has been given to us, because it is the one God wants for us.

Who would you especially like to thank for their help? 

– To our families for being so attentive to all our needs, and also to the many friends we asked to pray for us during the days of surgery and bad news—and who have continued to pray for us and check in on Jaime constantly ever since.

I suppose many people have told you that you're a great example. Do you feel that way? Do you feel like you're instruments of God? 

– Some people have told us that, but we always tell them that we’re just trying to do what any father or mother would do in our situation. We never thought we’d be able to handle something like this, but we’ve seen that, if God wills it, He doesn’t leave you alone in the face of danger—He gives you the strength to overcome it.

At first, we wondered, “Why” had this happened to us. Little by little, we began to ask ourselves, “What is the purpose” of what happened to us. We believe that, in some way, God will use all this suffering to accomplish great things.

Sometimes we think that just seeing Jaime in his walker, smiling as he runs down the hospital hallways or down the street, will touch many hearts.

Is there a saint—male or female—whom you have asked to heal you? 

– Yes, we’re praying to God every day for her healing through two intercessors: Sister Clare Crockett and Saint Charbel. We discovered the first, a 21st-century nun with the Servants of the Mother’s Home, through social media, and we were deeply moved by her life, as well as her charisma and joy. The second, Saint Charbel, was introduced to us by a friend who had been to Lebanon and told us about the amazing miracles he had performed for many people, especially those suffering from incurable diseases.

Elena and Antonio, how do you manage to balance taking care of Jaime with supporting the rest of the family and your jobs?  

– [Antonio]: It’s not easy, because Jaime—due to his dependence and fragile health—and the girls, who are still young, require a lot of attention. From the very beginning of his illness, we’ve requested the child care benefit for children affected by cancer or another serious illness, which has allowed us, first me and now Elena, to fully care for Jaime during his hospital treatments and therapies at clinics, as well as at home, where it’s very important to continue his rehabilitation—which we always try to make fun and enjoyable.

What is your family's life of faith and hope like? How do you share it with your friends and family? 

– We pray every day with the children before they go to bed and ask for everyone, especially for Jaime’s healing. Whenever we can, we try to listen to “10 Minutes with Jesus” with them in the car, because it really touches Celia’s heart—she’s especially sensitive. We make a special effort to attend Sunday Mass, where Jaime really enjoys participating and singing. Now that he’s just had his First Communion, he finds it even more meaningful.

What do you say to families who receive the news that their children are struggling or have an illness?

– May they have hope and courage. May they know that with faith, perseverance, and love, they can move forward. And above all, may they live each day as if it were their last with their child. We don’t know how long they’ll be with us, but what matters is enjoying them every day, trying to make them happy, and giving thanks before we go to sleep for the good times we’ve shared together that day. As the neurosurgeon told us before we began the whole process, “We’ll take it one step at a time, as Cholo says.”.