Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  A bone marrow transplant is no more dramatic to watch than a blood transfusion. And transfusions don’t impress me anymore; Azylis has already had several over the last week. I keep my eyes pinned on the drip system that carries on at a regular rhythm like a metronome. It will take nearly two hours to transfer the contents of the bag into Azylis’s venous system. Two hours to change the course of things, of a life perhaps.

  “Stop! Stop everything! It’s not the right blood group.” I leap up, gripped by uncontrollable panic, and scream across the room to make them stop the procedure right away. I’ve just read the letters AB+ on the bag of cord blood, but Azylis is blood group A+, I’m sure of it. They must have made a mistake! This is a nightmare! The doctor restrains me and reassures me: “Please, don’t worry, there’s no mistake. The two groups are mutually compatible. An A+ patient can quite happily be given an AB+ transfusion. It’s even likely that, with time, Azylis will change her blood group and become AB+.” I’m speechless with fear and shock. I would never have guessed that you could change blood groups. I have to admit that until I was confronted with the situation, I didn’t know you could change your bone marrow either. . . .

  I’m disconcerted now. Although I know she needs it, and it may even be vital to her, I can’t get used to this intervention. Blood is one of those primordial things that we transmit to our children, but soon Azylis will be producing cells that are foreign to us. She will have a different blood heritage. No, our daughter’s future is no longer in our hands. Nor in our blood either.

  That’s it, it’s done, Azylis has had her transplant. She didn’t notice a thing. We, though, are reeling from the storm of emotions. From this point on, we have no control over anything. By intervening in the hopes of curing our baby, we have unquestionably changed the course of things. But how? To what extent? What direction will her life take? So many unknowns freighted with hopes and fears.

  We’re not there yet, though. Before we start picturing potential improvements, we have to be sure the transplant takes well. The troops are in position; we now have to watch how they colonize Azylis’s bone marrow. They need to be sufficiently effective to take over producing blood cells, generating their own red and white corpuscles, and platelets. But they mustn’t be over-zealous. What can happen is that the transplant identifies the host’s cells as foreign and attacks them. It’s what’s known as GVHD, graft versus host disease. It usually presents as skin eruptions.

  I want a magnifying glass to discern the tiniest spot, the least trace of red. And God knows there are enough little outbreaks in newborns. Every day, there’s some rash or patch or mark, something you wouldn’t usually dwell on. I never worried about these harmless signs when Gaspard and Thaïs were babies. But I’m haunted by them now. Them and germs. Because Azylis is still in a state of aplasia.

  Again, we increase our vigilance to avoid any sort of contamination. The antiseptic burns our hands, but we’d rather wash them twice than once. Every cough, every sneeze, every throat-clearing becomes suspect. To think that most mothers eagerly await their baby’s first smiles, first teeth, and first utterances, and here am I, waiting impatiently for the first white corpuscles produced by Azylis’s new marrow.

  The next important stage is chimerism. Chimerism . . . a wonderful-sounding word, almost poetic. It sounds like an invitation to take a trip through Greek mythology. But that’s way off the mark! At UPIX, chimerism refers to the presence in one individual of cells from another. So, at regular intervals, Azylis’s blood will be analyzed so that the number of cells from the transplant present in her bloodstream can be expressed as a percentage. It’s one way of keeping up to date with the battle—like reports informing headquarters of the troops’ progress. And the headquarters staff in room Obelix are waiting impatiently for the information. The first chimerism check is due in two weeks. A bit more patience.

  16

  ZABETH COMES THROUGH THE FRONT DOOR AND STOPS dumbstruck in the doorway: A singing human caterpillar is coiling gleefully around the living room, led by Gaspard brandishing a CD player, trophy-like, as it bellows out the decibels. Behind him is Loïc, following the tune in his powerful voice and squeezing Thaïs in his arms. I bring up the rear, struggling to keep up with the hectic rhythm of this improvised dance. We don’t even see Loïc’s sister come in. We’re fully focused on our happiness: This afternoon, after an extra week in the hospital, Thaïs came home.

  Zabeth puts down her bags and lets us drag her into the dance. She’s come to spend a few days with us and was expecting to find us devastated and fraught. Yesterday, maybe. But not today. Today there’s a party atmosphere. We’ve waited so long for this that we’ve even secretly feared it might never happen. But it has now; Thaïs is here with us. Our joy carries us along, and it carries us away in our dance. Gaspard has decorated the house, putting flowers in his sister’s bedroom, leaving drawings on her bedside table, hiding candy under her pillow. I didn’t tell him she couldn’t eat candy. It wasn’t the time.

  Thaïs doesn’t have a moment to catch her breath. She’s hardly through the door before her brother grabs the stroller and shows her around the whole house, sharing with her his secret corners and his treasures and telling her about his life in Marseille. He takes her off into the garden, shows her his explorations and games, and points out the green budgerigars that nest in the park next door. He’s introducing her to his new world, a world they’re now going to share. At last!

  Thaïs is completely dazed by so many novelties. It’s an abrupt change for her when all she’s known of Marseille was a hospital room. Her recovery is still shaky; we have instructions to be careful with her. That can be enforced tomorrow; today she and Gaspard are enjoying their reunion.

  Zabeth, Loïc, and I also make the most of this happy interlude by celebrating: Ensconced in deck chairs, we sip a glass of chilled rosé wine. It’s warm and pleasant, we can hear cicadas chirping and the muffled cries of supporters from the nearby cycling track. The sun is turning red as it goes down. Yes, this is definitely a good day.

  It can’t be helped. I can put flowers in a vase, scatter cuddly toys on the bed, and cover the walls with illustrations to my heart’s content, but Thaïs’s bedroom still looks like an adjunct to the hospital with the specialized bed, her stock of “food,” the pouches for her meals, the compresses, bandaging, and tubing, and all the other equipment needed for her gastrostomy. Hospital life doesn’t stop at the layout of her bedroom, it insinuates itself into our routine and sets its own rhythm. Thaïs is still going downhill. Her bouts of pain are becoming more frequent and intense, and the treatment to counter them is rising proportionately, to the point of becoming a real constraint. From dawn till dusk, not an hour goes by when we don’t have to administer some medication or other form of care. Loïc and I are a little busier every day; we’re simultaneously coping with the schedules of parents, nurses, and nurse’s aides. I admit that it frightens me; I’m worried we’re not cut out to cope. But it’s the price we have to pay for the pleasure of watching Thaïs flourish at home.

  During those weeks at the hospital when Thaïs was fighting to stay alive, the illness attacked her on other fronts. It cruelly tested her motivation. Thaïs can now hardly use her arms, she can’t keep her head straight, and she can’t sit up. But she still wants to sit, particularly at mealtimes; even though she’s not eating, she always shows that she likes being at the table with us. We’ve tried our best to keep her upright in a highchair, but she found it very uncomfortable. To get around this problem, we’ve given her a specially molded chair, made to her measure. She’s terribly proud of this new piece of equipment, especially as Gaspard says it looks like a princess’s throne.

  I’m finding it difficult to deal with the strain. September’s looming, and we’ve now been living in Marseille for more than a month. A month of stress, fear, waiting, and exhaustion. A month of monitoring, constant attention, and endless trips between the house and the hospital. A month of quickly making the sign of th
e cross every day in the changing room at UPIX. A month of desperate struggle. A harrowing month, both physically and psychologically. And yet, our suffering is far from over. Will it ever be? My morale is failing, my convictions crumbling. I can’t go on. I’d like to let myself go, be lighthearted again, and go back to a normal life. I wish I’d never heard the name of this damned illness. I wish I could rewind, change the settings, and start everything over. Only better . . .

  Why doesn’t that work? Why can’t you press “reset” and erase the things that are wrong? I can’t move forward anymore. I need a rock, a stick to lean on. Of course Loïc is here, always, irreplaceable. But he’s too involved, he’s right in the middle of the storm, buffeted and rattled like me. I beg Heaven to send us one of its lucky stars. Just one. If I knew . . . She will knock at our door on September 1, with no roll of drums or fanfare, and change our lives.

  I’ve always believed in guardian angels. And in this topsy-turvy month, when we should be getting back to work or school, I find that our very own guardian angel is a Senegalese woman of forty who answers to the name of Thérèse.

  Thérèse came into our lives as if by magic. Back in May, a cousin of Loïc’s recommended her to us to look after the children. She spoke very highly of Thérèse’s countless good qualities, both professional and personal. She thought Thérèse could be an invaluable help to our family, but we hesitated a long time before making up our minds. The situation was very different in May, and taking on a nanny didn’t seem like a priority. At the time, we still thought we had the future ahead of us and time to tackle the developments in Thaïs’s illness. We didn’t know then that Azylis was also affected. We didn’t know our lives would be blown apart.

  Before meeting Thérèse, we anticipated carrying on with our arrangements without changing anything, keeping the children at school and the nursery, respectively. In the end, we allowed ourselves to be seduced by this opportunity, more for comfort than out of necessity. We made the decision barely three months ago. Soon it wasn’t a luxury having Thérèse: She was absolutely indispensible.

  In her work contract we wrote, “Take care of the children in the home.” We might as well have put “be our cornerstone.” Thérèse soon became a major part of our lives, the rock we used to keep our footing when everything was falling apart. She knew this would happen before we did. When I asked her whether she would mind cleaning and cooking for the children, she didn’t take offence.

  “I’m here to help keep the balance in your family,” she replied generously. “So tell me what you need most, and it’ll be my pleasure to do it.”

  When I called her in a panic to see whether she could come down to Marseille, she didn’t have a moment’s hesitation. She altered her plans, packed her bags, and came to join us without batting an eyelid.

  Yes, Thérèse is an angel, a beautiful angel straight from heaven. She doesn’t settle for just making our days easier, she makes them more beautiful. Simply by being who she is and doing what she does. Always with a smile. She has many more good points than Mary Poppins and that inexhaustible carpetbag! But Thérèse isn’t a magician. So what’s her secret? The love she invests in her every day-to-day action; she seasons food with it, sprinkles the washing with it, damps the ironing with it, covers the children in it, and perfumes the whole house with it. Her arrival marks a turning point in our story. With her, we discover a new way of perceiving our existence. She may not be aware of that, and will probably never know, because she isn’t after honor or glory.

  I have a strong conviction that our meeting Thérèse was not a chance occurrence. A kindly hand placed her in our path. And the children certainly need no persuading; they adopt her straightaway. Particularly Thaïs, who grants her complete trust. Instinctively. She must sense in Thérèse all the qualities of a good soul: the inimitable gentleness, the infallible patience, the constant good humor. And all those things that can’t be described or written.

  A little night music. The never ending litany of lullabies disrupting the nocturnal silence. Thaïs’s nights follow the same unwavering pattern: Every evening, after the ritual of medication and prolonged goodnights, she falls asleep peacefully. But her rest always proves short-lived. Soon after midnight, forlorn chanting comes from her room. This long monotonous lament is barely audible but has the same effect on me as a piercing scream. It carries with it so much contained suffering and anguish. As if the ever-smiling, ever-positive Thaïs keeps her pain to herself all through the day, but by night the burden of it becomes too heavy to bear. Every evening, then, she calls out and asks for someone to keep her company and calm her fears that are amplified by darkness and silence. So we take turns to go to her, without fail.

  With a flick of her eyes, she invites her visitor to sit down beside her, take her hand, and squeeze it gently. With an almost imperceptible gesture, she asks for her CD, a compilation of lullabies, always the same ones. During the day she likes listening to stories or songs. But not at night, never: Nighttime is the preserve of her music. With the very first notes, she relaxes. “Sleep, baby, sleep . . .” The words transform the air into soft, enveloping, soothing cotton. Thaïs goes back to sleep, but if the hand loosens its grip or the music stops, she immediately reprises her plaintive litany. This can go on for several hours. We organize ourselves to spend the night by her side, drawing a comfortable armchair up to the bed and pressing a button so the machine plays the music on a loop. We snooze with her, until her breathing grows deeper and her hand heavier. Then, without switching off the lullaby, we can get up carefully and tiptoe out to savor some well-earned rest.

  The first few evenings, I feel my strength abandoning me. I can’t afford the luxury of repeated sleepless nights, the days are too demanding. I don’t have the necessary resources to carry on at this pace for long. Once again, I’ve forgotten to take into account our faithful helpers. My parents and Loïc’s take over these shifts, sparing us this responsibility. They take it in turns to spend a night with their granddaughter.

  Her moaning is an efficient alarm system. At the first sound, the “night watchman” leaps up and goes to her, hoping she hasn’t woken us. In vain. A parent’s instincts can detect a child’s call even through the deepest sleep. But we go straight back to sleep, knowing that our daughter is being pampered by one of her grandparents. These hours on watch are to produce a special bond between them. I thought they rather dreaded their watch and the prospect of a broken night. Far from it: I realize they look forward to it with barely disguised impatience. In the secrecy of the night, she and they are getting to know each other better. They each relish these precious moments of complicity between a little girl and her grandparents. Because they know these times won’t go on forever.

  17

  WE CAN BREATHE—THE TRANSPLANT SEEMS TO BE TAKING. Less than three weeks after the treatment, Azylis’s white blood cell count is rising. They are being produced efficiently, and the risk of infection is gradually receding. Phew! The doctors seem pleasantly surprised by this relatively premature end to aplasia. It’s an encouraging sign for further events; we’re beginning to see the end of the tunnel. . . . And the first chimerism test reinforces our optimism: Ninety-one percent of cells present in our little girl’s body are from the transplant. Azylis is a welcoming host!

  These good results act on me like a soothing balm. They release the tension painfully locking my shoulders. They smooth the frown that forms a harsh furrow between my eyes. I let myself go. And I enjoy my baby with a carefree pleasure that has so far been prohibited.

  Azylis is adorable. She’s smiling, gurgling, flourishing. Almost all the side effects of chemotherapy have worn off. She no longer has any physical problems and isn’t in any pain. She’s doing well. Even though she still isn’t eating, she seems in good shape. And literally in good shape . . . well, okay, she’s cheating a bit: Cortisone is giving her chubby hamster cheeks.

  At UPIX there’s always a psychologist available for parents who would like to see one. S
he regularly comes to visit me, and over the weeks we form a strong bond. I appreciate our conversations a little more each time and even catch myself looking forward to them. Her professional insight and the good sense in her ideas are useful to me in getting through this difficult period as best I can.

  During one of our conversations, we discuss Azylis’s wellbeing. We both agree that she displays a surprising joie de vivre given the circumstances. But if you really think about it, there’s nothing surprising about this. The context isn’t unusual for her, though it is for us. We’re the ones who feel disorientated in this room, not her. This is her world; she knows little else because she’s spent two-thirds of her existence between these walls. . . . All her bearings are in room Obelix. She’s used to seeing us dressed in our masks, caps, coveralls, and shoe covers. She isn’t frightened by the beeps from machines, the sound alerts of syringe pumps, or voices booming through the intercom. She’s at home here. The nurses, touched by her, cosset and coddle her, and make the most of any opportunity to give her a little “spoiling,” a hug that’s typical of southern France. Azylis revels in the pleasure of having her mommy or daddy by her side the whole time—a privilege that plenty of children might envy her. Because that is a primordial need for a newborn: the parents’ presence. So long as we’re there, everything’s fine.

  “Mommy, when are we going home?”

  Gaspard is sad. Now that the vacation is over, our time in Marseille is becoming difficult for him. He’s realizing what he left behind in Paris, and missing it. He left his school, his home, his whole world. Of course he likes Marseille for the warm climate, being close to the beach, and the steady pace of life. But it isn’t his world, he feels like a stranger here, and his life is getting a little tougher every day. He doesn’t have any friends here; he feels too different. Yet he tries everything to adapt and be accepted.