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Survivor Interview – Sebastian P.

Eight-year-old Sebastian is an acute myelogenous leukemia survivor. He and his family share his cancer treatment story.

A father and his young son being interviewed on a white background

Sebastian: My name is Sebastian Perez, I am eight years old, and I am a cancer survivor.

Edgar (Sebastian’s father): Everything started in 1998. Sebastian started to get sick very often. We went through many doctors. It was infection behind infection and nobody could figure out why, until in November of 1998. We finally found out that he had leukemia. We were living in Guatemala, and things for us were very difficult, but we always had a hope that he could survive this. He started his treatment back there. And in November of 1999, we decided to try to come to the United States. We had to completely get rid of everything we had back home and come here to a new country and start all over. We were lucky to be able to come here. When it comes to the life of your child, you have to do whatever it takes. Right after that, he had a relapse. And we were thankful that he was here for that.

He relapsed with a different type of leukemia, which was AML (acute myelogenous leukemia). The chance of survival was really low with regular chemotherapy, survival probably zero. The first step was to have a bone marrow transplant. We all were tested for the bone marrow, and no one in our family was a match. And so the chances got even lower. We signed up for the bone marrow program. They have this new program going on that’s stem cell. They use the umbilical cord blood that comes with newborn babies. And that’s what they did for him.

We saw many of the other kids who lost their hair, and we didn’t want that to happen. So we decided that we’d shave his head before he lost it. I made a deal with him, and he let me shave his head only if I shaved my head, too. Then after one of the transplants, it happened, a positive thing. Hair grew all over his body. Now we enjoy every little thing that many people would take for granted, the kindergarten graduation, first cold, soccer, a goodnight kiss.

Sebastian: One time, I had to go to the doctor like in the middle of the night, and I brought my pillows and my blanket, and I slept in the car. My sister and my grandma stayed at our house. I never got scared.

Edgar: Most of the strength that we got through treatment we got from him. We could see his will. He always helped us with the medicines. He never complained about anything at all, about the medicines being yucky or disgusting, whatever. He always tried to eat his vegetables and do all these little things that I think at the end made a difference.

Lida (Sebastian’s mother): For us, it was really hard because all that kind of medicine made him really sick.

Alejandra (Sebastian’s sister): I didn’t really get to see him that often, because I didn’t get to go with him, because he was real sick. I felt sad for him.

Edgar: It was very hard for everybody. You have to put your things aside and concentrate on the wellbeing of him. My advice is to try to stay together. You have to pray not just for the wellbeing of your kid, but also for the doctors and all the people who are in charge of the care of your son or your daughter, because they are the ones who are in a position to make the decisions. And I think they have to be very special people to make those kinds of decisions.

When Sebastian was diagnosed in Guatemala, they were building the Children’s Hospital for kids with cancer. Meanwhile, they had to be in an adult hospital. And the security concerns over there were big, and they didn’t allow the families to be with their kids except for three hours a day. That’s what made us make the decision to come here to the United States, because we were not able to take care of him over there like we wanted.

Lida: Sebastian had to stay and spend almost all day in the hospital by himself. We were just allowed to stay with Sebastian for breakfast, lunch, and dinner, and not both of us, just either my husband or I, but not together. Sebastian was only three years old, so for Sebastian, it was really hard.

Edgar: One of the things that can get very confusing is all the medicines that they have to take and all the home care that you have to give. One of the things that helped us a lot was to make the schedules for all the medicines and find out about the side effects and all the things, what the medicines were for. Follow the doctor directions, because they are putting a lot of effort into taking care of your kid.

Discuss your things outside the room with your wife or with the people that you trust, but do not do it with your kid or with the patient. I think that helps them, because they don’t feel like they’re a weight, a burden. Instead, they feel like you appreciate them, even if they are sick or they’re going through all this. Just take the burden like it is and go through it. It’s gonna be much easier like that. If you start pointing fingers, it’s just not gonna help at all.

Now we’re concerned about many things. I think at a certain point we live afraid of making decisions that later on may affect us. All the decisions that we make right now are based upon him. He had total body radiation. He had very hard doses of chemo. And we’re always concerned that he may not have the same abilities as the other kids. But on the other hand, we see that we’ve been blessed that we’re able to do many things with him that many other people are not, who are almost in the same situation.

In the beginning, it was different. It was like lots of people were with you. And then along the way, it was just getting less and less. I think it made us stronger. We had some financial issues. But everything worked on a perfect timetable. When one door was almost too closed, the other one opened right away. I think that if you put yourself in good hands, and you’re doing the things that you’re supposed to do, all the other details will take care of themselves.

I think that most of the people here in the United States must feel blessed that they’re lucky enough to have state-of-the-art life-saving treatment for any disease, and the resources are there, the doctors are there, the technology is there. It’s just that you have to do your research. You have to follow all the leads and concentrate and have this disease killed or get rid of it. It’s just that you have to put your priorities in order and say what you want. And if what you want is to save the life of your child, the resources are there, and there’s nothing that can stop you from that.

When this happened, we had to put aside all these things and just concentrate on the basic stuff. Before he was diagnosed, I remember I used to go lay on his bed and he would talk to me about all those things that he wanted to do when he grew up. That’s probably my inspiration. So we’ll just make sure that he gets to do all the things that he wants to do and that’s where we’re gonna be. Support him. Not just him, but Alejandra, too. And support them all the way through. And then all the things that we want for us just came into second place.

Lida: We enjoy everything. We have pictures for every moment, and since that day, we are together every day, we play, we pray together.

Edgar: And I think it makes a difference at the end because it’s a time investment. You have to invest your time. The kids feel this when they are going through this in the hospital. They feel that your parents are with you or they are not there with you.

We became closer. I try not to worry much about what can happen tomorrow because that’s not gonna get me anywhere. I’m concerned about this moment. We went through this, we were living a day-by-day basis. We were not making any plans towards the future; it was shocking because before Sebastian was in, we had all these big plans: which school are they gonna go to, and how we’re gonna raise them, how we’re gonna do all these things.

Enjoy everything that comes to you and don’t take for granted all those little details that you may forget sometimes.

Lida: We are all survivors right now, because when your kids are sick, we all are sick. So right now, we feel pretty good. We feel better. And we feel we are all survivors.

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