SURVIVING AMINA (a documentary by Barbara Celis)

 

LIST OF DIALOGUES IN ENGLISH- 65 MINUTES

 

 

Nurse:-You don’t feel that you are having contractions now?

Anne:-No

 

Doctor:-There’s probably, probably, probably a little cord around the baby’s neck, probably… not a big deal.

 

Card: Life is Great productions presents…

 

Card: With the participation of Television Suisse Romande TSR

-an enterprise of SRG, SSR, idée Suisse.

 

Nurse: we aren’t in labor yet?

Anne: No, I know the pain when it comes and this is not it yet.

Lower Third: Anne Lamuniere

 

Lower third: Tommaso Tastini

Tommaso: Amina c’amon, let’s do it. Come out! Let’s go away! She’s good inside she doesn’t want to go, doesn’t she, Anne?

 

Anne: Don’t rush me Tom.

 

Tommaso: I m joking c’mon!

 

Card on black: A film by Barbara Celis

 

 (Baby Scream over screen on black)- Nurse: Congratulations!

Lower third: May 28th, year 0, New York.

 

Anne: (singing to the baby…)

 

Tommaso: Amina is finally here. ‘Amina’ means ‘God’s will’. It’s my grandmother’s name. Nobody knows why her name is Amina but we liked it, and my grandmother is eighty so…

 

Card on black: Surviving Amina

 

Anne: This is Todi, this is my favorite place in the world, it’s a place I’ve been coming since I was basically born. Since I was a child I lied about where I came from. When people asked me where I came from I always said I was Italian. It just seemed much more me than saying that I was from Switzerland. So basically when I was 18 I just took my stuff, packed in the car and I moved here.

 

Tommaso: I met Anne in Todi while working with this American sculptor called Beverly Pepper. She used to work at the office, I used to work at the studio, we met and we fell in love.

 

Anne: And it was a lot of fun, we worked together and we had some of the best years of our life, I guess. And then at a certain point, I felt that I needed to go into bigger things and I moved to New York.

 

Tommaso: Then we started to work in New York, I found very interesting jobs. She did very important things. She set up a theater production company by herself; we put together theater shows, art shows… We had fun the first few years. Then we decided to have a child and we had Francesco. Then, after two years, Anne got pregnant again and after Amina was born we realized that life became more difficult. We realized that we were limited because two children are two children, in New York, being artists, we never had any money… Then we realized that Amina was ill and then came hospitals and everything else…

 

Anne: The first few minutes, the first day, I guess, when you find out your child has leukemia you don’t really think anything in particular, your whole world falls apart…

 

Lower third: Amina is seven months old

 

Anne: We have been here since Sept 12 so now it’s been almost four months… I took her to the pediatrician just for an exam because she seemed very fatigued, we had just come back from Italy, we had done a lot of traveling so I wasn’t surprised, but she had white poop. So the pediatrician said ‘not wait for the weekend, go to Bellevue and have some blood test’. So we went and that’s when the nightmare started.

 

Anne: The shock is so strong because you go from having a perfectly smiling normal baby with no major signs of discomfort to hear a few hours later that she might not survive the weekend. It’s completely absurd.

 

Tommaso: Of course you are scared, you cry, you can’t fucking digest it. You ask yourself if it is a dream or reality and then of course, even if the doctor gives you 1,5% of chance that she can make it, you don’t think anymore about the 98.5% that she can die.

 

 

Camera person: Where is Amina, Frankie?

Francesco: At the hospital.

 

Camera person:  and why is she at the hospital?

Francesco: Because she is sick.

 

Anne: I don’t know if he knows what ‘sick’ means. He definitely knows that Amina goes to the hospital and the clinic, we tell him she’s sick. I don’t know if he knows what that means though…

 

Anne: We normally wake up earlier than today. Then nurse A comes in, and she weights Amina, she washes Amina, then Amina has breakfast, and then the doctor comes in. We look at Amina’s numbers, her platelets, her white counts… to see if she can go out in the corridors today, to see if she needs any blood or any transfusions…

 

Nurse A: Pumpkin pie! Pumpkin pie!

Anne: Generally we always have the same nurses because they create a relationship.

 

Nurse A: Pumpkin pie!

Anne: Look!

Nurse A: No!

 

Anne: There are few that really love Amina and they love having Amina.

Nurse A: She’s special. She’s nice. She’s the only baby that is been here for so long.

 

Nurse B:  Tralala…Stretch, lots of stretch…. C’mon little one, don’t cry, it’s not the inside just the outside!!! You just want to be picked up, yes, yes! It doesn’t hurt!

 

Amina: mmm

Anne: mmm

 

Nurse C: She has certain strength and spirit that we all love her, and her family. We love her family.

 

Anne: show her your teeth!!!

Amina: ohhh

 

Music with Amina.

 

Lower third: Amina is nine months old

 

Anne: If I stay here for another month without spending a few days at home I’m gonna go crazy. My energy is not anymore the one I had five months ago. I need to not do this back and forth thing. I need to feel like a normal person.

 

Tommaso: My wish was to do more and I guess I could have done more. But the problem was that at the beginning of Amina’s hospitalization Anne was still breastfeeding so she had to be there all the time. There were also Anne’s fears… she can’t be far away from the problem. She wants to be closer to the problem. It makes her feel more in control. That’s why she wanted to be at the hospital all the time. I felt a bit excluded because always had more information than me. She always knew more than me about what doctors said or about Amina’s therapies. All that made the last five months very difficult for us. We had problems due to stress, exhaustion, fears… Each of us dumped our stress on the other. For me it wasn’t easy to be the one who spent less time at the hospital.

 

Anne: This week was the saddest week so far because Amina’s friend Joselyn, this beautiful 16 years old beautiful girl, full of life, who I had started really to love, is dying. There’s nothing it can be done: she’s been here for a year, there’s nothing… nothing works. She has felt so much pain, so much for nothing… It makes me feel so lucky that Amina is doing well. It makes me feel the first time I am very angry, really angry. I never felt angry for Amina but I feel very angry this time, for Joselyn.

On top of that doctors decided to send Amina home the same day they send Jocelyn home. So the two friends are going home. Amina is going home for a week because now from now on her chemo is not going to be so strong so we won’t have to stay here, hopefully, for long periods of time and although the news upset me a lot at the beginning because I was so scared, I am very happy now.

 

Amina: Papa

Anne: Papa we are arriving, we are coming home.

 

Tommaso: Fly!

Francesco: Fly, fly!

 

Anne: So the treatment is much softer at this point. Amina is reacting very well.

 

Anne: Finally my love is at home.

 

Anne: It’s a weird time to be at home because her white count is at zero, which means she can get sick for any little thing. She has not immune system, but I am trying not to think about it too much and I am trying to enjoy her at home and I am trying to look at the positive thing that nothing is going to happen and that she is going to be okay. 

 

Lower third: Grandmother Lorena (Tommaso’s mom

Grandmother Lorena: Do you want some milk? Let’s go with grandmother!

 

Tommaso: The arrival of my mom was very helpful. It was a very critical moment. Amina was still suffering chemotherapy side effects’ and I was working on a very important project that I only finished three days ago. I was feeling under a lot of pressure.

 

Tommaso: If I didn’t have insurance for Amina and help from my friends and family that really helped me a lot I don’t know if I could be here now.

 

Grandmother Lorena: Everyone is very attached to this little girl. From doctors to nurses, everybody loves her. It makes me feel very happy and relieved. I can leave now knowing that the baby is in good hands. The baby is not completely… but she is doing okay.

 

Anne: Thank you Lorena.

Granmother Lorena: You don’t have to thank me. I ‘ve only done what a grandmother should do. The painful part is that you are too far away, across the ocean.

 

Tommaso: Bye!

 

Francesco:  Do you want to sit next to me and let me eat it?

Amina: No

Francesco: Do you want to eat it?

Amina: No

Francesco: Amina, I have to teach you how to walk and dance!!

 

Anne: Because Amina is been at home for almost two months and because her counts are good and because she is reacting so well I am starting to relax to the point that I take her to the playground and let other kids touching her. Or I go to an indoor playground where there are toys and if she puts a toy in her mouth I try to avoid it but I also try to relax about it. Maybe I am taking too many risks but that’s the way I feel it should be. I think it’s time now, she is almost a year old and she needs to live a normal life.

 

Amina: oh, oh, oh.

Anne: Sometimes, since you lived inside this cancer for over seven months, it almost feels like normal, like everybody is going through the same thing than you. It’s very strange. That’s my life, my daughter has cancer so I cannot even imagine the day where I won’t be telling people, ‘oh my daughter has leukemia’. I mean, would it ever be a day where I won’t think about it for a day? I don’t know. All I can do is hope.

 

Anne: Tommaso, there is somebody here that is trying desperately to reach you…

Tommaso: We are celebrating Amina’s birthday. She just turned one year old. 

Voice: Unbelievable! look at all these balloons…

Clapping with birthday cake.

 

Anne: This morning doctor Livi called me at a quarter to eight. Of course if doctor Livi calls you at a Monday morning at a quarter to eight something is wrong.

 

This was no way as bad as when she first diagnosed, Leukemia is not even in the blood yet, it’s only in the bone marrow but of course is not good news, and they have to change the protocol and…

Tommaso: what about Francesco?

Anne: and the best thing to do is… at this point the situation calls for a transplant.

Anne: They want to get another bone marrow sample, to find how fast the leukemia is developing because they have that from last Thursday, and then we will go back into NYU and then we will go into a plan, a three high dosage chemo plan… Tommaso, can you stop it??? You are really driving me crazy right now!! And you should listen to this because you should really now what your daughter is going through! You can’t fucking escape all the time. You just sit down and listen and stop going $#@& because I live with it all day!! And this time you are going to be participating and you are going to now what’s happening okay? So you sit down and listen!

 

Tommaso: I stand up, it’s okay.

Anne: And this time I want you to know counts, I want you to know white cells, I want you to know what medicine is given, when, how, I don’t want you to say you are the genius, I want you to know everything as much… No, I want you to be part of it, okay!???!!!

Silence.

So it’s a three months plan and hopefully they get her in remission fast, hopefully Francesco is a compatible donor. If a transplant goes well, we are done.

Tommaso: if it goes wrong? She dies!

Anne: Who knows! If it goes wrong it goes wrong…We will have to find another solution…

 

Tommaso: Kiss.

 

Gaspard (Anne’s brother): you don’t like mushrooms, right?

Francesco: no

Gaspard: Do you want the carrots?

Francesco: no

Gaspard: Do you want the broccoli?

Francesco: No

Luna (francesco’s friend): I ‘ll eat the broccoli.

Gaspard: yeah, it’s good broccoli, right?

 

Lower third card: Amina is 14 months old.

Tommaso: What? Mom?

Amina: uauuu

Tommaso: okay, let’s go to mommy! Mommy, Amina wants you.

 

Tommaso: Amina is gonna  make it, man. Amina is gonna make it, I know it a 100%. A100%!!!

 

Tommaso: I don’t understand any more because she didn’t do anything, she is innocent, she didn’t do nothing, I don’t know why she have to die and make me feel like that. It ‘s too long, it’s not like an accident and boom! Someone goes out and suddenly dies. Oh, she’s dead! No, this is like.. you know that she could… it’s like… a fucking torture… I can’t accept it…

 

Tommaso: I don’t want to talk anymore to nobody, my father, my mother. I ‘ll just do what I have to do and…because I can’t do nothing to save Amina. If I could do something to save her I will but I can’t because leukemia. I can’t fight leukemia, but I have a big trust and a big hope. 

 

Francesco: Amina!

Anne: Do you know that Amina goes to the hospital today?

Francesco: Yes.

 

Francesco: Amina.

Tommaso: Amina doesn’t have any hair. She doesn’t need the brush.

 

Anne: Hi, we are getting admitted to Nine East.

Nurse: What’s the baby’s name?

Anne: Amina Tastini.

 

Anne: I think this is maybe the sixth time not counting the first time. The first time was… I don’t remember it.

 

Anne: I feel like I’ ve been through a lot of this alone. If you speak to him I am sure he will say it’s not fair but I think it’s true. Too much of this alone. I would feel much easier for me if he was here. Or may be harder because he would be complaining.

 

Anne: Did you hear the bad news?

Nurse C: nooo

Anne: She relapsed.

Nurse C: I know…

Anne: She doesn’t look like it! I like the curls!

Nurse C: Natural!

Anne: What’s the stone of the day? Diamonds!!

 

 

Tommaso: The family is split in 2 parts no? Hospital, home, two children… so you have to move yourself a little more. Come back, go back… even if you have a baby sitter is difficult. And also you have to work, you gotta do something. It’s difficult, it’s more difficult when she is in the hospital.

 

Francesco: Mom, are we going to have lunch?

Anne: Yes, we will go soon!

 

Tommaso: Be careful eh?

Anne: Francesco wanted chicken so before he eats that he needs to eat his chicken because we are not millionaires.

Francesco: No, I am not eating that chicken, no!!

Tommaso: It’s really bad….

Anne: One thing I can say maybe it’s a bad day today but to me it has become unbearable to be here…

 

Music scene.

 

Tommaso: I love her, I married her, we have been always together. We lived in New York for eight years and never had to rely on anyone else. I don’t want this relationship to fail just because we are too tired or apathetic. 

 

Anne: I don’t know how others deal with their couple life. For us it’s been kind of numbing. We don’t seem to be talking very much. Also you arrive at night and you are so exhausted that you don’t exactly feel like even watching television together.

 

Lower third: Light the night walk. A leukemia society fundraiser.

 

Anne: What is gonna be my life after this? Is it going to be back to normal or…? What happens after the transplant and when she starts getting better?

I’ ve spent so long just dealing with this that I don’t know where to stand.

There are moments when I have panic attacks, like… There is a fine line. I am not sure if I am doing very well of if I am not doing very well at all.

 

Card: Sloan Kettering memorial hospital. Amina is 19 months old

 

Anne: The landlord is trying to evict us, believe it or not. He is trying to take away our lease for one month we didn’t pay. We have been there for eight years, in 8 years we never missed the rent once. We have been late sometimes but I know people who didn’t pay rent for six months. He knows that Amina has leukemia, that she is in the hospital and he says: ‘if you guys cannot afford it anymore why you don’t find a cheaper apartment?’ That’s his line. It’s insane. It’s crazy… Fucking asshole!

Amina: Apum! Apum!

 

Moni: Good friends of us are a little bit in trouble and we want to give them a bit of support. I am amazed at their job to keep the family together, with all the stress, keeping a relationship going in a situation like that is terribly hard.

 

Tommaso: I love this people because they helped me to raise some money because the situation it’s very difficult and it’s not only about money, it’s also… see all these people around you that they like you, they love you, which is a good help because life with cancer and hospital is not like this. It’s different it’s completely different, very complicated…

 

Anne: Zoom zoom zoom! She likes it when we sing, right? Cucurrucuuu paloma….

Teresa (tommaso’s sister): ay ayayay cantaba…

Anne: cucurrucuuu paloma…

 

Anne: This is Amina after her second relapse and the worst possible round of chemo ever. This is Amina feeling better after being in intensive care for three weeks, and on Friday we will test her bone marrow to see if she is in remission and god willing she is and we are going to do the transplant!

 

Francesco: Mommy is kissing me all the day!

Anne: You know he woke up on his own and he snuggle with mommy, right? I didn’t need to wake him up because he had a timer, right? He knew the time had come.

Francesco: can I bring this?

Anne: yes.

 

Anne: Francesco is getting ready to go the the playroom for a very very long day. They are going to put an IV. It’s not gonna hurt at all and he is going to give a new life to his sister, right?

 

Francesco: Bye, I am going!

Tommaso: Where are you going? You need to… how do you say it?

Anne: Cum your hair?

Tommaso: Where do I have to go?

Anne:  Ninth floor, the playroom. You present yourself at the front desk, bone marrow harvest, doctor Bula.

Tommaso: Let’s go kekko.

Anne (to Francesco): You are a good man.

 

Anne: Francesco’s bone marrow is taking out. They will spin it, they will take everything out, t cells, platelets, everything but the bone marrow and tomorrow Amina will get a five minutes push of Francesco’s bone marrow.

 

Lower third: Amina is 20 months old.

 

Doctor: Here it is, good stuff from Francesco.

Anne: Amina, this is a brand new life.

Doctor: Okay so… old macdonald had a farm, hia hia ohhhhhhhhh (singing)

 

Anne: It’s all in?

Doctor: It’s all in!

Anne: Great minouche! Thank you kekko, thank you doctor, thank you God, thank you everybody!

 

 

Lower third: Two months after the transplant.

Lower third: Amina is 22 months old

 

Anne: Today we are going home. It’s the beginning of the end. She will hopefully never come back to sleep in a hospital but it’s very probably that she gets a fever or other things and we have to come back but from now we will go to the clinic 3 or 4 days a week.

Camera: For how long?

Anne: For a year. Always less and less.

 

Nurse X: Good bye!

Anne: Thank you so much!!

 

Anne: We painted the whole house, cleaned, bought new cushions, the dog had to go away, we redid the bathroom… Everything is new and ready for Amina.

Anne: We going home minouche! We are done! It’s all done!

Amina: All done!

Anne: Yeah! Champion, champion! You are my champion!

 

Anne: Here she is!

Tommaso: How you doing? Are you ok?

Francesco: Hi!!!

 

Anne: Give me a hug. I want a hug! Yes…

 

Tommaso: What do you want to see?

Amina: Open?

Tommaso: How many times? One more?

Amina: One more

Tommaso: One more?

Amina: One more.

 

Tommaso: I am very scared. She is really fragile. It’s not easy but it’s better than being at the hospital and split the family like we were for almost 2 years…

Anne: Minouche! You are skinny as a skimpy!

Tommaso: I don’t want to complain no more. The situation is really difficult. Now we have a nurse.

 

Nurse: Just put a bit of pressure on the bag.

Anne: Ok.

 

Tommaso: she’s got nausea, vomiting so she’s still eating through the IV. And that’s what Anne is learning from this nurse..

 

Nurse: I see you are an expert.

Anne: You know, my daughter is being sick for a very long time.

 

Amina: Muack!

Tommaso: Great my love! Great!

Amina: Bye bye!

 

 

Over Images of burning skyline

 

Tommaso’s voice over: Amina died suddenly. She was fine, the transplant had worked fine. We were hoping for the best, but there was a respiratory failure. Nobody thought it could happen.

 

 

Anne: I never thought she would die. Maybe I did but I always thought she would beat it. But I have accepted it, I accepted it the moment it happened because I knew it was her decision.

She died because her little body was tired and I think that once she realized that her lungs were tired and it might have been a problem for the rest of her life I think she preferred to go away now that she had her brothers blood and she had lived a life where she laugh and… I think partly she left me the freedom to live a life!

 

 

Tommaso: It’s the most horrible experience that a parent can go through. Nothing can be worst than that. In a way it’s impossible to overcome it. You have to accept the loss to overcome it. In a way though, the pain stays there. The sorrow, the absence… The remembrance… To accept doesn’t mean to overcome. It means to understand what happened and keep going no matter what.

 

Lower third: Todi, four months after Amina’s death.

 

Anne:  Any time you cross the Williamsburg Bridge and you see Manhattan, whatever weather it is, when you see those lights you feel very important. It is the same thing here. Every time, every single time, when I look at the beauty, at this time of the day especially, it gives me such energy to live.

I suddenly felt so alive after being in a hospital for two years… Just being in the nature and putting music loud, and thinking and looking at the landscape and looking at the sun going up and down, all that combination made me feel so good and alive and definitely allowed me to survive the first month.

 

 Lower third: Tommaso’s aunt family home.

 

Tommaso: This is aunt Assuntina.

Anne: Isn’t he pretty? He looks like a big Francesco, right?

Assuntina: He looks like you!

Anne: Like me?

 

Song on tv with Amina’s image.

 

Anne: Great Amina!!! We like to look at her from time to time, right Francesco? It is our way to introduce her to other people, right?

 

 

Tommaso: She talks too much… She needs to talk but I have already talked. For me it’s enough. I don’t have anything else to say. This isn’t good for me. It takes me back in time and what I need is to be going forward. It’s like a mournful ritual that repeats itself over and over, to make everybody understand how you feel, but I already know how I felt. I don’t need to see her again. My daughter is in my heart. I don’t need to watch the video every week.

 

Anne: Even if I have to explain it a thousand times and feel guilty because I make them cry I ‘ll show the images of my daughter because Assunta is happy to see her, am I right?

 

Assuntina: Yes, I am just sad because she’s not here anymore…

 

Anne: I went to the bank this morning to open a bank account and the lady asked me: ‘What’s your job?’ And I was like, what is my job? In two years the only thing I did was taking care of Amina. I guess I thought I was part of the medical stuff or something, which I am not so… I answered set designer. Because that’s the last real thing I’ ve done but that was three years ago…

 

Lower third: At Michele’s house (a family friend)

 

Tommaso: There’s anger, sadness, fear… There is no money, no home, no daughter.. After two days it’s a nightmare to be together. I already knew it in New York that coming here it was going to be difficult. Three months are not enough to be apart and try to enjoy being together again. It’s an old story for us. The reason is New York, the stress of the city, the stress of being broke all the time, of never making enough money. We could never rest, we were always in a rush. And also because we were never professionally fulfilled. I never achieved my dreams as a sculptor in New York. For Anne is the same. She went to New York to study, to do theater. She even built her own company. She tried to do her own shows. She did some at the Limelight club. I did some shows there too. We started very well but we didn’t make it.

 

Anne: I think I left my husband, or we left each other, well, I left him, because I cannot longer afford to not be happy. I owe Amina and myself to be happy now or at least to do everything that is possible for me to be happy. And Tommaso and I weren’t happy for years. And as much as I love him because he was Amina’s father and because he is Francesco’s father and because all the beautiful things that we lived together there is nothing positive right now that comes out of this relationship and I don’t want anything negative around me.

 

Tommaso: I had to come back to Italy because my son is here. My wife didn’t want to go back to New York after what happened. I can’t be apart from my son for too long. It’s not healthy for him or myself…

 

Tommaso (to Francesco): Those are the animals we saw before…

 

 

Anne: Francesco is a very strong little boy: he’s very sensitive. I am very worried about him later on, what’s gonna come out because it’s a lot. His father and I fighting, leaving each other, Amina’s hospitalization and death for a little boy. He understands but he doesn’t… but he talks a lot about it. He has terrible terrible dreams, doesn’t sleep well, but he is pretty happy. I thinks he is a happy little boy… he asks a lot about his sister and we talk about it. He wants to know if he can take a hellacopter and going to get her in heaven. He wants to put her in the dog’s cage and take her home… all sorts of things. He has memories of him and her playing together… He wants to know if I remember them…I think he misses her…

 

Tommaso: Now the only important thing is to have a dream, to have a project or idea to follow. It’s the only key to open the door that will take you from one emotional reality to another.

 

Anne: I came to Todi four months ago, about a week after Amina’s death. I’ve made a hundred million plans and dismantled them since Amina’s death.

 

I feel different from other people because I was Amina’s mom and I have to say the truth, I feel lucky that this happened to me. I don’t feel lucky that my daughter died but I feel lucky that she was born and I feel lucky that I was able to survive through her illness and through all the pain of seeing children and… I feel very proud of myself…

 

Anne: I am sure that once I find a professional stimulus things will get back together and I am convinced that even, even without Amina I can have a great life, where she will definitely miss and she will always be present in my heart but I can have a good life. I think I have deserved it. Everybody deserves it but I think I deserve it a little bit more…

 

Black Cards:

Anne Lamuniere now lives in Geneva with Francesco. She works as an art consultant.

 

Tommaso Tastini lives in  Roseto (Italy) and he works as a sculptor.

 

They still spend summers together in Todi.

 

Black Card: Epilogue:

 

Lower third :Amina Tastini (Amina’s great grandmother) :

 

Amina Tastini (Amina’s great grandmother): I’ ll show you who was Amina.

I was born in July and this woman passed away in June. My mom was pregnant with me and my sister. We were twins. She told my mom: “Please give my name to one of your daughters”. Since we were two my mom named me Amina.

 

Camera: And what does the name Amina mean?

Great grandmother: I don’t know. Tommaso, maybe you know it since you went to school… I think when a pig is born you don’t name it, but if a person is born you give them names like Francesca, Luisa…

 

Camera: But wasn’t it an Arab name?

Great grandmother: Yes, this is an Arab name.

 

Tommaso: It means wanted by God.

Great grandmother: Ah, wanted by God. I understand, it’s a name wanted by God.

Anne: It’s such a beautiful name, it’s the most beautiful name.

Great grandmother: Everybody used to tell me, ‘What a pretty name’. So I had to tell this story over and over again.

 

CREDITS