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Survivor Interview – Alejandro and Josephina M.

Alejandro is a medulloblastoma survivor. He and his mother Josephina, his caregiver, talk about hospice, finding spirituality in their experience, and family financial issues.

A teenage boy in a red shirt and a woman in a pink sweater are interviewed against a white background

Alejandro: I became a cancer survivor when I was diagnosed with medulloblastoma.

Josefina: We started the journey on July 6, 2001, and because it was metastasized to his spine, there was nothing they could do for him. It was terminal.

He had a resection of most of the tumor. After the first surgery, he was in a coma. The neurosurgeon suggested we take him to hospice for him to die there. Not bring him out of the house. It was going to be even more painful. So we agreed and took him to hospice. We lived there for 11 days, and he didn’t want to die. We were taken home again, and we were just waiting. It’s been three years after that, and he’s working so hard. He wants to live. He’s the one pushing us.

After that, we were in the hospital for three straight months. He started radiation treatment for six weeks. After that, in October 2001, he started chemotherapy, which was for one year. Every time we get his paperwork, it says, “Status compromised.” It’s because he’s considered terminal, but he’s still here, so they don’t know.

Alejandro: They told me I may go back to school, but I wanted to walk without my cane. So the tutor goes to my home. I was lying in a bed for a long time, so I lost my muscle strength. I’ve been doing physical therapy for two years. I started out with two therapies a week. But now I got really good at it. I only go once a week. I do the bike. I do laps. Every day I go, they give me new things to do. I walk a lot. We used to go out and walk along the block. I remember pushing my mom in the wheelchair and stuff. I’m doing way better now. My main goal is to walk again.

Josefina: His friends were from first grade, and then he had to stop seeing them, so they grew apart. Now, he comes to physical therapy and occupational therapy. He doesn’t want to share with them that he’s doing putty and strengthening his arms and legs, because they have other issues going on, like girlfriends, driving and stuff he has missed. He’s gonna get there sometime. Last year, he didn’t even want to talk to them on the phone, because he would say, “What am I gonna talk to them about?” The other friends would tell their moms the same thing, “What am I gonna ask them? What am I gonna talk to them about?” So they grew apart. Now his friends are from the hospital. They know him. They go to camp together every summer. They have their things going on, so they have many things in common. Many of them have leukemia. Some of them can still go to school, and they’re walking. Some of them are playing sports and stuff. But when the cancer is in the brain, it’s devastating, because you lose everything.

In the hospitals, there’s sometimes so many patients at the same time, you have to share rooms. The rooms are not very spacious, so you’re very crowded. You’re a big family there. Sometimes you learn that they’re not there anymore. People you slept with, that same room, are not there anymore, because they have gone. They’re not here anymore. So that is very hard. It’s part of your family now. This morning, we were in the hospital, and we feel like new ones, because we’re going to the hospital only once every two months. You see new faces. You wish that you didn’t see sick kids anymore, but you can’t help it. They’re there. Some of them, you see them, and they’re very sick. Now Alejandro was there. He’s sitting down and walking. His color and his hair and everything, he looks different now.

We started off at hospice, because that’s what the doctor suggested. He is going to pass away, so we decided to put him at hospice. It’s a beautiful place with beautiful gardens, but it’s a dying place. Especially at night, you could listen to the moans and the groans of dying people. So you’re just there waiting your turn. In the morning, you could see just how the gurney leaves with a nurse and the police officer. They just walk outside of the premises. That is very, very hard. But he didn’t want it. He didn’t sleep much, because that’s what he tells me, that he felt he was just sleeping and he was not going to be able to wake up again. That’s why he hardly slept. We hardly slept. My husband and I were staying with him at that time. It was on vacation, so we wouldn’t worry about school and kids and stuff. They were with my mom. So everything was taken care of. We were with Alejandro all the time. He would shout, “I don’t want to die. Dad, do something. I don’t want to die.” So what could we do? We are Catholics and we have faith in God, so we were asking for a miracle. We have our miracle here.

It affects the whole family. He’s not the one with the cancer…the whole family has cancer. Everyone has to mature. So now my daughter is like my age. We speak eye-to-eye level, and my husband and my other child, he’s only 12, and he’s so mature. What I tell my daughter is that, if you are living this as a daughter, as a sister, I don’t know what’s expected of you, so we have to be strong. Crying is not going to help anything. So you have to continue. You don’t know what’s coming next, so you have to give thanks for this day and continue.

We’re Catholics, and we’ve become even more closer to God. It is a miracle. We went to Mexico City to the basilica and gave thanks. He had a mass in his honor at that beautiful place, huge place. We had to come one day earlier, because he got sick over there. We thought it was a seizure or something, but it’s just healing process. That’s what the neurologist said. It’s just the elevation, because Mexico City is very high. So it could have been that he had lack of oxygen in his brain or something. But there was nothing wrong. So it was like a mini-vacation for us going over there. We’re ready. Some of us are gonna die before others, so we never know, so we’re ready.

Everything is so important, even the money issues. You don’t want to make them be important. They are important. Because if you don’t have insurance, not even working 24 hours a day you can pay all this. Everything is so expensive, even living in the hospital. Hospital food, everything is expensive. So at this point, Alejandro is going to start working as a junior volunteer in the hospital. I’m going to be a volunteer myself. While he’s in his area, I’m going to be in my area. I want to be working at feeding babies, bottle feeding babies, because many moms have to be working to continue having their insurance, and they can’t be with their kids. So I want to be a mom for them.

Alejandro: I feel like they helped me and I also want to pay back. I want to be thankful. Hang on really hard, because life’s really hard.

Josefina: Livestrong Give your fullest. Live life your fullest, day by day, and give it all you’ve got.

Alejandro: My name is Alejandro Martin Del Campo, and I am a three-year cancer survivor.

Josefina: My name is Josefina, and my son is a medulloblastoma survivor.

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