Beatriz's Story: A Mother's Story, Medulloblastoma (English translation of Spanish language recording)

Recorded January 19, 2002

Listen With 17 minutes, 06 seconds. (Audio is in Spanish)

Username: mbeatriz

My name is Beatriz and I am going to tell the story of my son Andito. My son Andito is now 13 years old. He is a survivor of a medulloblastoma which is a type of malignant brain tumor. When he was four years old, he started with problems of vomiting and generally not feeling well. I took him to a general doctor, a pediatrician, and we didn't do analysis--blood tests--and nobody found out what the problem was with Andito. The doctors even began to think that my child wanted a little more attention. I was pregnant then; they thought he was playing sick so that I would pay attention to him. As his mother, I knew that something wasn't right.

The Day Our Lives Changed: Finding the Tumor

Finally, after three weeks and many conversations with the doctors, I decided to take my son to the hospital one night. After waiting all night long in the emergency room, they finally did a CAT scan on his head and they found a tumor the size of a golf ball. That happened the morning of May 2nd in 1992. It was the day that our lives began to change. I don't believe that it changed for better or for worse. It simply changed. It changed the way we woke up in the morning and thought. It changed the way we looked at life and planned the future. It changed everything. Basically the change is not bad. Once in a while it makes you scared.

My son Andito's brain tumor was operated on the day after he was diagnosed, the 3rd of May. The doctors told me there was an 80% chance that he would not survive the operation because of the location of the tumor in the brain. Thank God he survived the operation. We spent several days in the intensive care unit and afterwards in his hospital room.

While I was waiting for them to operate, I was scared- -thinking that he wouldn't survive or that he would survive. What is going to happen? How did this happen? I never thought that cancer itself is a sickness that isn't fixed in a day. As a matter of fact, when he left the intensive care unit, the doctors began to look for metastasis all over his body. They did many tests but they could not find any other metastasis.

Anyway, because the medulloblastoma is such an aggressive tumor and even though there wasn't any metastasis in his body, we had to do six weeks of radiation on his head and his spinal column and one year of chemotherapy. The doctors told us that things would be difficult for my son; that he would surely stop eating and he would lose weight. They also told us that every person reacts differently to the treatment. They never prepared us for what was to come afterwards.

The year following my son's operation was a year that I would never wish on anyone. Many times I thought when I woke up in the morning--and the boy was in the hospital and every day was worse because the chemotherapy had made him so sick, because he had to be given blood transfusions, two or three transfusions a day. I thought that this would end at any time, that there was a solution to all this and the truth is like they say, "there is a light at the end of the tunnel." The problem is that while you are in the tunnel it is difficult to realize that yes, yes there is light, there is an end to the tunnel.

Learning to Live with Cancer

Nine years have passed since his diagnosis. My son is healthy, happy and content. He is different from other boys because of the treatment. The treatment was so brutal that it caused a series of secondary effects, but he is alive. He is happy. He learns. He lives. He does most of the things that other little boys do and that is what is important.

During the months that Andy was sick, we learned to live with cancer like a family. There were many people who helped us. We found help from school, the church, our neighbors and many support groups for families with cancer; camps for children with cancer, social workers in the hospital, some nurses and other people who made our life easier.

We also learned to live with the idea that cancer was another thing that would pass and that life would move on. We could never make plans one day to the next because we never knew if Andy would be at home or if he would be in the hospital, if he would have strength to do anything or if he wouldn't have any. So in a way we learned to relax. Many times I see that people plan and they want everything to be perfect and they want to be in control of everything. The good thing about living in a family with cancer is that we wake up in the morning and we say, "Fantastic! The sun is out and the boy feels well. Let's go do something!" Other days we wake up and we are in the hospital and we do different things. We also learned to laugh at cancer. We learned to make jokes about the chemotherapy. We learned to make jokes about the fact that my son didn't have hair. We learned to live with cancer and this was basically good.

We met many other families in the hospital who had the same kinds of problems as we did and we made friends with these families. We realized that there were also people who feared us, fortunate people who did not know sickness, especially the sickness of a child. They were scared to get close to us and as a mother it made me a little mad sometimes. Later I thought, well fine, they were the ones who lost. They lost getting to know my son who was strong and marvelous; who even with sickness and everything, was a little boy who had the desire to live to do things. They lost out on getting to know my husband, me, my other children as we moved on with our lives.

Sharing Problems, Sharing Strength

After finishing the treatment, we entered into a different time of our lives because during the past year all of our energy had gone to the hospital, toward keeping Andy alive. Once we finished with that protocol our priorities changed. We learned that we now had to begin to live with the effects of the disease.

The first months, the first years, we went to the doctor many times because they had to do MRIs every three months. We were always a little scared that the tumor would return. We also began to see that because of the radiation and the chemotherapy--well, Andito had a series of medical problems and he would have them for the rest of his life.

We tried to escape from his problems. We moved to a different city and state. We lived in Maryland before and we came to live in Georgia. We thought that we would start a new life far away from what we had gone through. We did start a new life far away from what we went through but of course, we had to keep going to the hospital to see the doctors. Every time Andy had a headache, the fear always arose that the cancer had returned. So we had to go to the hospital, to do the MRI, to make sure that all was well.

Here in Georgia, we immediately realized that we didn't have the support we had in Washington. So we started going to camp for children with cancer. We became a part of the "Brain Tumor Foundation" of Georgia. Andy belongs to a support group called the "Little People Group" for boys who are smaller. They get together with their friends and they do manual activities or they go bowling, different things. His best friends are kids who belong to this group and the best friends of our family are the families of these boys. Once again, because we have so many things in common with them, we enjoy each other's company.

School Challenges and Successes

Where we have had the most problems has been education, in the school. The effects of the radiation-- they radiated Andito when he was so young. The fact that they started radiation the day he turned five years old has changed the way his brain works. With support, with a great deal of work from the school and a ton of work here at home and the spirit that he has of knowing that he can move on, that he can do things, he has moved on. Right now he is in seventh grade. He is not in special education. He is in the normal class. In class, there are a series of modifications that the teachers and he have to follow so that he can succeed in school. Andito cannot write, but he reads perfectly. He functions in mathematics and he has an amazing memory. So now, for example, in school they have given him a program for his computer. He has his own computer. The computer recognizes his voice and he talks to the computer and the computer writes what he says. It seems easy, but it has taken many months for him to learn to use the program and the computer to learn to understand him.

I am convinced that despite all of his problems and his learning difficulties he will be a person who will integrate himself into normal life, that he will be able to have a job. I even believe that he will be able to go to the university because there are many universities that have programs for people with learning disabilities.

Many times I think that yes, our life would have been different if he would not have gotten sick. This is not to say that our life and in particular his life, is worse than it would have been if he would not have gotten sick. It is simply different. It is also important because every day we have a challenge, something that we have to work to get over.

Taking Growth Hormones

Now Andito has to have a shot of growth hormones everyday because he cannot grow on his own. The treatment is phenomenal. He is growing a lot and it doesn't bother him to inject himself. When he travels, he takes a small suitcase because he has to take the hormones on ice. When we pass through airport security, he hasn't had a single problem or he isn't embarrassed to tell the security people what he has in the suitcase because he is not ashamed. He talks about having had cancer like it is something normal.

If you see him, apart from his being a handsome boy, you will notice that he doesn't have hair in the back of his head. That is where he received the highest dose of radiation. So you can clearly see the scar that he has in the back of his head. He is not embarrassed when other kids ask him, "What do you have there?" He says, "Well, this is my scar because I had a brain tumor and my hair grows differently."

One thing that has helped a great deal is that I have gone to the school and I have talked to his classmates and he has taken the MRI films and books about cancer to show and tell. We have never hidden anything about the treatment or the disease. Moreover, it has become a cause of pride in our family.

When Andito finished with the chemotherapy, he didn't eat anything; he only ate through his nose. He ate with a nasal gastric tube because he couldn't eat anything. Well now, many times when he doesn't like something or he doesn't want to eat he says, "Well Mama, you can survive without being fed by mouth." And sometimes I say, "Andito, I am going to put a tube in your nose and I am going to make you eat this." We laugh. We laugh about many things and many times Andito will say, "I don't know, this is almost like chemotherapy." when there is something he doesn't like. In general it is a part of our lives.

Giving Support to Others

One thing that has made me really proud of my son is that a little while ago a classmate of his was diagnosed with a disease--not cancer, another kind of disease--and the doctors told him that he was going to lose control of his hands. So my son said to this boy, "Look Robert, don't pay attention to what the doctors have said. It is you that has to know that if you want, you can get well and feel good." And he gave him an example. He told him, "Look, the doctors said that I would never be able to ride a bicycle because I would lose my sense of equilibrium and I can ride a bicycle well." So, I believe that what makes me so proud is knowing that I have this son who is so courageous, who isn't afraid of anything, knowing that not only has he survived cancer but he is willing to go on living.

We still belong to the support groups for cancer, even now that it is part of our past. Many times he goes to other kids who have just lost their hair, who are in treatment and he says, "I was also like that and look how good I am doing. Look how tall I am now. Look how strong I am. Look at all the things I can do. Everything passes. The treatment is bad but it passes."

I believe that it is necessary for the schools, for society, to learn to educate the people that cancer survivors, kids who have survived cancers, are normal people like the rest. That they have physical differences doesn't matter. That they have to keep going to the doctor doesn't matter. Society has to learn to treat them like normal kids because that is what they are. In reality, it is what they are and nobody has to feel sorry for them because they do not feel sorry for themselves. I see my son and he does not feel sorry at all about his situation. I remember that just the other day one of my other kids was saying, "Andito, you are really lucky because you had cancer you can go to all of these special camps, you get to go to Brain Tumor Foundation reunions and you get to do all of these special things. How lucky you are!" And I think this is the way that we are seeing it now, all of the treatment and it is fundamentally positive.

My son always tells the kids he knows that have cancer, "If you have a problem call me and talk to me." At heart, this has a lot of merit. One of the problems he has is a loss of a large portion of his hearing caused by one of the medicines of chemotherapy and he wears hearing aides. In other words, he doesn't hear very well and normally he doesn't like to talk on the phone. But if there is someone who wants to call him to ask him how to survive cancer and how to get better--he is willing to listen to people. Thank you very much.

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