Parents of daughter with rare cancer share their insights on marriage, suffering, and prayer

I’ve known Otello and Daniela Sangiorgi since I was a child, when my mother found the embrace of God in a group of families in the Fraternity of Communion and Liberation. Since then, the presence of these friends has been the backdrop of our lives.

As I grew, so did the Sangiorgi family. I remember when they told us that after four boys, they were expecting a girl -- Anna. For me—an only child—it was like imagining an alien planet. And I remember Christmas four years ago just as well. We were in the town square to attend the Christmas performance of our children's school, and we heard the terrible news that young Anna had been diagnosed with cancer. I met her father, Otello, in the crowd. Two facts fiercely collided: the unspeakable pain of the disease and the festive joy of Christmas. What could I say to him? Nothing. I listened to his fatherly concern that already sensed the path of pain, but not of despair, that awaited them.

Anna is now 18 years old and continues her battle with this terrible enemy. I’ve asked her parents to tell me what has happened during these years of close confrontation with fragility, fear, faith, and the precariousness of life they have experienced while imploring God's merciful hand to support them.

Dear Othello and Daniela, I would like to begin this conversation talking about marriage. When we get married we say a convinced "yes," but it is a "yes" in the dark. How long have you been married? What has become of that "yes" today?

Otello: We've been married since 1987, and this is the easy part of the answer.

Daniela: It's true, it's a step in the dark. Nothing can be taken for granted. You have expectations, but what happens is something else. Even the husband you chose turns out to be different than you thought. The same goes for the wife. This means it's an ongoing challenge, an ever-continuing game.

Othello, what do you say about this?

Othello: First of all, I should say that you touched a nerve. When hardships happen, reality reveals itself for what it is. A serious situation, whether we want it to or not, forces us to take stock of who we are. And this is our case. Marriage is a great adventure and we don't know how it will end up. I say this neither with boasting nor with resignation, but as an observation: Daniela and I have not yet managed to get used to each other. For better or for worse. Some couples show a strong mutual synergy; they understand each other on the fly.

For us it's not like that, we are more like that joke: "How do porcupines make love? Very carefully." Daniela said that it's an ongoing game, and I would add that we still want to play it. When I was young I dreamed of a life that wasn't routine; I was afraid of that. I dreamed of an adventure, and I think I got what I asked for. It's true regarding my marriage with Daniela, and the 5 children that we’ve brought into the world. And it’s true—I say this with all due care and quotation marks—for what is happening to my daughter.

Adventure is not a romantic word at all, because it has the same etymology as adversary.

Othello: It's not romantic at all. It's a struggle with the other person who “scandalizes” us. This is not just a seven year itch; we struggle as much as the first year, the seventh, the twentieth, and the thirtieth. For work, I also deal with military history, so I use this image: marriage means burning bridges behind you. When armies were advancing for a conquest, they burned the bridges after crossing them to make sure they didn’t fall into the temptation of retreating. Marriage is like that; you leave a land you know and go forward. There's no going back. What happens after that? The Lord knows, respecting our freedom.

You have five children. Anna is the youngest and she has four brothers. Four years ago, she was diagnosed with a tumor, right?

Daniela: Anna has Ewing's sarcoma. It's a rare cancer that affects bones and soft tissue. Unfortunately, it affects the 10- to 20-year-old age group. It’s a terrible killer because it’s very aggressive. It's fast and it's difficult because it manifests itself in a thousand different ways. Bone tumors are rare; this case is a rarity within the rarity, so even research goes forward with more difficulty.

What’s the situation like now?

Daniela: This is a “quiet” time, so to speak. She's on a therapy that keeps the disease pretty much at bay. There are a lot of side effects. Every day is different; some are better and some are worse. She’s always aware and fighting. There is an ongoing situation regarding oxygen. For about a year, Anna has been on oxygen 24/7 and it’s a big limitation.

Othello: I’d add that she has very limited mobility. She moves around in a wheelchair because she struggles so much. Two days ago, in the course of the day, she went twice up and down the corridor and it was the first time this had happened since Christmas. It was a success for us.

Daniela: Yes, because in this season a cold, or even less, becomes a major challenge.

How do your other children see her? And how has your family changed?

Daniela: Everyone has changed -- Anna first of all. Illness makes you mature very quickly. Everyone was dismayed; some of the siblings had a real crisis when they heard the news. After that they all rallied around her. Her brothers look on her very lovingly.

Othello: As the saying goes, when the wind blows hard, the tree must have strong roots. Our family, along with our friends, has clung to these roots. We’ve seen over the years that our house has become the focal point of relationships, even of parties, for all the siblings and the wide circle of the family. I realize it sounds exaggerated to say it has been “the center of happiness,” but that has been the experience we’ve had.

You used the word happiness. I imagine that even during a time of protracted illness, not everything has been suffering. There must also have been small moments of daily joy. Can we use that word? What kind of joy is it when the horizon is bleak?

Othello: There are happy moments all the time. This past year, which to be clear was the year Anna started needing oxygen and a wheelchair, I saw in my daughter an explosion of maturity, of a willingness to help us, even attention to my needs as a father that moved me many times. I experienced all this as a great gift.

A few days ago, Anna went all the way up and down the hallway and we were happy; we celebrated. When she was able to resume taking remote classes in school we celebrated. When she resumed eating after a difficult time, we were happy. We’re enjoying every moment and discovering everything as a gift. Complications are the order of the day. Three times already, we've promised ourselves we'd take Anna to eat at the beach at a place she likes, and three times we've had to give up. But we look each other and say: we'll try again.

It's not an idyllic picture, let's be clear. When you see your daughter suffering, everything about you rebels against it. But it is also true that every day we’re in a position that forces us to touch two truths with our own hands: first, that our days are numbered, and second, that every day is a gift. We hang on an unpredictable mystery, and that's not just a figure of speech.

It's true for everyone, but in your case you can’t help being aware of it.

Othello: And it doesn't just apply to us. I sense, I have the impression, that our situation has a social function. I have a colleague who takes on shifts and work to allow me to be with Anna and this solidarity is already a great thing. But there’s more. I’d like to call it “the social function of misfortune”; it’s an opportunity for many people to grow in wisdom. My work colleagues, each with their own freedom and their own way of being, coming to terms with me are forced to be wiser.

I realize that in the office, when they look at me, they’re suddenly moved to reevaluate even the things they think are stratospherically important. This isn’t a philosophy I have developed; I’ve simply realized this within the reality of relationships I live. Of course, I'm not praising misfortune. I never wanted something like this to happen to my daughter.

Speaking of relationships, one place you have had to learn about and frequent is the hospital. What happens along the way?

Daniela: Anna is being treated at the Sant'Orsola Hospital in Bologna. Anna's ward is protected because it houses children and young people with very low immune defenses. The relationship with the doctors and nurses is one of full involvement. The hospital staff choses to live the story of the patients together with their families. Living the hospital journey with them is a grace. And all sorts of things have happened. Last year Anna had very long hospitalizations. She ended up next to a girl who was already her friend and had a relapse of leukemia.

They lived together for months on end. The bond of these two girls, both living the experience of faith, made it so that, metaphorically, the doors of the ward opened. Everyone was curious about where the energy they had was coming from. Even the doctors and nurses were stopping by, curious to see them and talk to them.

Othello: The girls made a song and a video for the doctors, involving other patients as well. And the fact remains that they are kids who are physically very sick. They designed and produced a ward sweatshirt, with the contribution of the Parents' Association of the Pediatric Oncohematology Ward.

Daniela: In previous years, Anna had pursued the initiative to create a “Teen Room” in the ward. There was already a playroom for kids, but there was no space for teens. Now they find themselves in this room and each has their own burden. Another significant episode happened when a doctor entrusted Anna with some medical students and told them, "Ask Anna questions and she’ll answer them. From her, you’ll learn how to be a doctor." This is the level of participation and involvement in the doctor-patient relationship.

Othello: Other times we've been asked to talk to and help new parents who come to the ward and are disoriented in the face of the ordeal that is beginning for them.

You also mentioned meeting other families who care for children in the hospital. What is that like?

Daniela: I often find myself in the hallway with other moms who are leaning their heads against the wall because they don't know what to do. However, because of the faith testimony of the friends I have around me, I have a road ahead made up of hope. I see the disorientation in those corridors and it’s there that deep relationships were born and continue to grow even with families who have lost their children. There’s an awareness that a lot of people are lost along the way.

Othello: This is a great sorrow, because the bonds that are created are deep. And unfortunately in that department it happens all the time that children and young kids don't make it.

How do you come to terms with God? What’s your prayer life like?

Daniela: You treat the Father like a father. You can freely tell him that you’re angry, when you are. And I am. But then you realize that along the road you travel He always welcomes you, He opens doors. Little by little you see things that you didn't see at first, and so you trust Him. You trust and rely on him, but for me, as a mother, it's very hard.

Otello: From the very beginning I came to terms with the idea that Fr. Giussani expressed as follows: "Reality has never betrayed me." What does that mean? And above all, what does it mean that the Lord is the victor within this terrible circumstance? The continual petition of our daily life is for Him to reveal Himself, and show Himself as the victor. There has been no period that, no matter how dark, has not contained signs, sometimes very tenuous and sometimes obvious, of His merciful presence. I say this as a man full of limitations: today I’m more certain of His company.

I think about the fact that in 2021 my friends committed to a daily online Rosary for Anna. And to this day they’re still going. For me it had always been a bit problematic in my experience to accept that God would make himself present in a community of people. Because with regard to fellow travelers, one tends to see their limitations much more than their merits. This past year, once again, I was blessedly forced to form stronger bonds with the group of people who accompany me, which God has given me and in which He is present.

Obviously, the time I devote to prayer has also increased greatly and the need for Him to be there to sustain me throughout the day is much stronger. It’s not me who has become stronger; I’ve become more aware that I need Him. “I'm like dust kicked up by the wind if you, Lord, are not with me,” sang Claudio Chieffo, and it's very true. “Let me see you, let me see you,” I ask Him every day.