The DiNatale family – mom Gisele, dad Mario and younger brothers Sebastian and Gabe – fought to keep Alicia’s life as normal and happy as possible. Gisele and Mario made the decision to not tell their children the prognosis. “I wanted her to be as happy as she could over the year, because I still believed to the very end there could be a miracle,” says Mario. “We didn’t tell the boys they told us from day one that it was terminal and there was no chance for survival.”
The DiNatale Family in 1991
For 13 months, Alicia was in and out of the hospital, fighting infections, undergoing tests and surgeries, and rarely feeling “normal.” But despite the battle, the teen insisted on being homeschooled, playing a part in her high school’s musical, attending homecoming and getting her driver’s permit.
In the hospital, she played with the younger patients and befriended kids her age.
“Once, she and a friend both ended up in emergency critical care,” Gisele says. “She was in one room, and he was in another. She said, ‘Tell Jordan to email me.’
I said, ‘He can’t. He’s got the IV around his hand.’ Alicia said, ‘Tell him to put the pencil in his mouth to hit the keys.’ She was just a trooper, believing, ‘Let’s just go and get things done.’”
Alicia passed away in 2002 at age 17. In her honor, the DiNatale family founded the Alicia Rose Victorious Foundation, which now has a long history of supporting hospitalized teens. In addition to packing and distributing art carts, teen kits and bandana pillows, the foundation has funded 68 teen rooms in hospitals across the country. The idea sprung from the many times Alicia was in the hospital and she noticed younger children had playrooms, but the teens had little to do and nowhere to hang out, so they often stayed in their rooms alone.
During her illness, Alicia recorded her experiences and thoughts in journals. The DiNatale family has graciously shared her journals with SJ readers.
My family and I made an attempt to go to the shore but I really couldn’t do much.
Alicia with brothers Sebastian and Gabe in 1995
One of my parents would stay home with me while the other one would take the boys to the beach or fishing. I did get a chance to experience Ocean City when one night my family and I went to the Boardwalk. Even though I had to be pushed in a wheelchair with oxygen still blowing into me I was glad that I got to do something with my whole family on our trip. Also, my mother, two brothers and I went to a movie theater on the Boardwalk, which wasn’t so bad because it was nice and cool in there. It was very frustrating to not be able to go out with my family and do the things we used to do on our vacations. Now that I’m homeI still can’t do much. Just moving from room to room is a struggle, so it’s hard for me to get anything done. I can’t go out at all unless I’m willing to go in a wheelchair attached to oxygen. It’s just too much work to get all ready and go out, which is making this a real lame summer. Hopefully my doctors will figure out how to fix my breathing so I can start having fun this summer.
***
I’m going in for surgery soon. I’m not 100 percent positive of exactly everything that’s going to happen (which is always a good thing). This is what I think is going to happen: I’m receiving some sort of sedation, so I can’t remember anything. That’s the easiest part. While I’m out, they’re gonna fix my right lung tube because apparently, it’s been pulled out a little bit, so I think they’re just gonna adjust it and push it in some more. Next, since my left side is filling with so much fluid, they’re going to stick a drain in that side, which is going to become really annoying because I’m gonna end up with tubes coming out both sides of me – how attractive. Oh, well. It’s better that they’re draining them out, I guess. Also, since my abdomen has gotten so big – and I hope it’s not from me eating so much, because I have been eating like such a pig lately – they’re just gonna stick a needle in my abdomen and suck out some of that fluid. Hopefully that fluid isn’t constantly building like the fluid in my lungs.
I’m not too worried about this surgery because it shouldn’t be that major. Hopefully, I can go home tonight. They said it depends on how I feel after the surgery. I’m thinking they probably want to keep me overnight just to make sure I’m okay. I don’t think they understand how tough I am! A little surgery isn’t gonna keep me in this hospital. They’re gonna need more than that to keep me here. It’s not that bad in here, but I would just rather be in my own house in my own bed. I feel like I’m not living my own life when I’m in the hospital.
***
I’ve been trying to get back my life since I’ve been home. I’ve tried to get my social life back. I went to the movies last Friday. I thought the movie was so funny. I went with just one of my friends, and we had such a good time. I also went to the mall. That was a little much for me, so I just sat down every once in awhile. I had $50 in gift certificates to this electronics store, so I bought a really good Discman, which I wear whenever I go to the hospital now. I also went to a shoe store, but they didn’t have the shoes that I liked, the ones that I lost in the hospital. Even though we didn’t stay long, me and my friend (a different one than I went to the movies with) had a good time. After, we went back to her house because she wanted to show me her new bed. It’s this foam form-fitting mattress that is so comfortable you could just lay in it forever. I didn’t want to leave but I had to. I can only be out and about for so long before I start to lose my energy.
***
Dear Evan,
When I read your heartfelt letter it reminded me of the good ol’ days when we were just little kids running and playing around the neighborhood. It meant so much to me when you told me how much you looked up to me. I had no idea I was that sort of role model to you. How you remembered all the times we played together, how you came to some of my soccer games, and how tough you thought I was when we played in the neighborhood and up at the Poconos when we played football. I can’t tell you how great it made me feel to know that someone else felt so highly. It truly touched my heart. I remember some of those days when we all would play outside with the other neighborhood kids. I would always feel kind of weird because I was the only girl in our little group. But you would always make me feel like I was part of the group…You should be as active as you can because you never know when something could happen and leave you incapable to do all the fun activities that you do now. Don’t take for granted your good health while you still have it. From what I heard from you though, you seem to be active enough. Keep up the hard work in marching band and all your other exciting activities.
***
Bad Hair Day
Today was perhaps one of the more depressing days of this whole time.
I’ve been to school about a dozen times since my absence, and I’ve never once had a problem with wearing a hat or bandana to school. It must be a full moon, because I wasn’t stopped by just one teacher but FOUR! It started when I went to the senior high office to ask them to page my teacher because I was supposedto meet her before class began. One of the secretaries said, “You need to take that hat off.”
Alicia with her mom, Gisele, in 2001
And I said, “I really can’t.”
She looked at me strangely before I quickly said, “I’ll just go check her room and see if she’s there,” and rushed out of the office holding back tears.
As I was walking down the hallway another teacher passed by me and said, “Miss, you need to take that hat off.” I retorted, “I really can’t right now.” I felt the tears starting to leak from my eyes.
“Well, why not,” he said, as he turned and looked at me.
“Because I have cancer, and I’m bald.”
I cried and burst out the doors, where I started crying more. I couldn’t help it. I don’t know where it came from but I couldn’t stop myself. I was feeling pain, shame, embarrassment, anger, and for what reasons, I wasn’t sure. Part of me cried, “Why do I have to have cancer?” and the other half of me stormed, “Why do they have to be so ignorant?”
I guess it was the confrontation that got to me. I was a mess of emotions, struggling to find calmness in a sea of tortured emotions.
When I sat outside and calmed down enough, I walked back inside and into my science teacher’s room. Then I realized I had brought the wrong binder. I called my dad and asked him to bring me the right one. He drove up, and I climbed into the car and started to cry again. My dad’s face was sick with worry. Immediately, he started to ask, “What happened? Did you throw up? Did you faint?”
“No,” I said in between sobs. “I,” sniff, sniff, “was walking through school,” sniff, sniff, “and two teachers asked me to take off my hat,” sniff, sniff, “and I had to tell them that I had cancer.”
As soon as I finished a wave came over me, and once again tears flowed like a bursting cloud. My dad’s face suddenly went soft, and he tried to console me. “Do you want me to go in there and tell them? Do you want me to walk you to your class so no one messes with you?”
“No, no, I’m fine now.”
I didn’t want my dad to have to worry about me anymore than he had already. “Classes are switching now, so I should be fine.”
“You sure you don’t want to go home?” he asked. And I could see in his eyes that he was absolutely crushed that his little baby was hurt. He wanted to take me home so I could lay in Daddy’s arms and he could make everything better for me. And I wanted to go home and stay with him and be with people I knew loved and understood me, where I was safe from the harassment I had felt at school. I looked back at the school where all the students were hurrying to get to class and I saw a place that was no longer safe to me. It was all ridiculing eyes and condescending stares. I looked at my dad again and saw the loving home I longed to be at, so safe and warm. Then I said to myself, “If you don’t go back in there, you’ll never want to again. You can’t let their ignorance defeat you. You’re stronger than that.”
I stepped out of my comforting dad’s watch and back in to face my torture. My dad slowly drove away but not without reassuring me that if I couldn’t handle it then I could call him and he would more than love to pick me up. I stayed through chemistry. I was sniffling still, which I could hide as just being from my weak lungs and it turned out that’s exactly what my science teacher thought it was. I walked to lunch with my friend and didn’t really say anything about the incident. I didn’t want to start a big scene. As I walked into the lunch room alone, I was confronted once again and the nightmare seemed to be never ending. “You’ll have to remove that hat,” stated one teacher.
“I really can’t.” I tried once again, but he wouldn’t let me go that easily.
“And why not?”
“I have cancer.” The words stung like a re-opened wound.
“Oh, I’m sorry,” he said apologetically.
I held in the tears because I didn’t want my friends to see me like that. I sat down and started to eat with my friends. Then I saw a teacher look at me and start to walk over.
“Oh, please, no,” I yelled in my head. When was this going to end?
“You have to take off your hat,” she said.
I did the only thing I could think of to keep me from crying. I smiled, jokingly, as I looked at my friends, “I can’t. I have cancer.”
My friends knew that it wasn’t a big deal for me to say it, but they had no idea what had happened preceding this. “Are you kidding?” the teacher said in half-disbelief, half-puzzlement.
I was shocked. “No, I’m not,” I said in disbelief myself. What kind of question was that?
“Well, because some kids have used that excuse before.”
What kind of person would say they have cancer as an excuse to wear a hat? I was speechless. So finally, my friends, who were upset that a teacher would be doing this, told her I was telling the truth. That did it, and the teacher retreated back with an embarrassed look on her face.
It really steamed me that my friends had to help validate that I had cancer. At the end of lunch, my guidance counselor came up to me and handed me a note. It read: “Please excuse Alicia DiNatale from wearing a hat. She is medically excused. If you have any questions, contact me.” But it wasn’t much help now; the damage had been done. As I was walking out of lunch, the teacher who confronted me at the beginning of lunch said he was truly sorry and he had no idea of my condition. It was some consolation, but still, it was the only sincere apology I had received. And I was still angry that the female teacher didn’t believe me.
Ed. Note: Alicia’s “bad hair day” inspired the Foundation’s Bandana Days, where schools allow teens to wear a bandana or hat to school in exchange for a $1 donation to the Alicia Rose “Victorious” Foundation. To find out more, visit arvf.org.
