I smother her in my arms and cover her with kisses before having a proper look at her. Her cheeks are slightly fuller, although she’s still very thin. She’s pale and looks so tired. But she’s got her lovely smile again. And that little spark of life is back deep in her eyes. Even though there’s still a ways to go before she’s really well again, I know she’s on the right track. For now anyway.
Azylis stirs in her Moses basket. Soon she’ll be in her own room too, two floors higher up. But right now she’s visiting her big sister. Thaïs is really happy to see her again, and we’re deeply touched by her joy. I believe there’s a true solidarity between these two sick little girls. An instinctive complicity that goes far beyond mere blood ties. Gaspard is here too, standing proud between his sisters.
The setting is hardly auspicious for a reunion, but we don’t notice the cramped room’s impersonal walls or the nurses’ intrusions. We’re above all that. I wish time would stand still. Forever.
All good things come to an end. It’s time for Thaïs’s treatment. On top of the inevitable temperature and blood pressure checks that no hospital patient can escape, they need to change her nasal feeding tube. It’s an unpleasant procedure for her and might be frightening for Gaspard, so we part again. Gaspard goes home; Azylis is moved to her new hospital room; and Thaïs gets her bearings in hers. Each going our separate ways.
From now on, the hospital will be our meeting place. Until Azylis goes into the sterile room, we can all meet where Thaïs is. We can even treat ourselves to a little escapade outside, in the hospital’s playground. All five of us. Like a normal family.
13
ALL YOU CAN SEE ARE TWO BLACK EYES. TWO ASTONISHED EYES appearing from between an oversized cap and a disproportionately large mask. Azylis is bundled up in a sterile gown far too big for her. After a good clean-up with antiseptic, she’s now dressed in the complete panoply compulsory for anyone crossing the threshold to UPIX (Unité Pediatrique d’Isolement X), the hospital’s sterile unit. Dressed up like this, she looks smaller than ever. The unit isn’t equipped with newborn-size outfits; they rarely have such young patients. Azylis is just five weeks old. . . . So we’ve made do with the means at our disposal. We’ve coped with worse; surely we could manage this: We rolled up the sleeves, knotted various bits, turned up the bottom. The end result isn’t all that bad. Loïc appears in the same get-up, and I burst out laughing. It’s the first time I’ve seen him in this outfit, which will soon become our uniform. I regret not having my camera with me! We’re soon straight-faced again; the moment we’ve so dreaded has come. Loïc takes Azylis in his arms and carries her into the sterile room waiting for her. I go with them to the door of the unit.
When the door closes behind them, I realize I didn’t kiss Azylis before she left. And it occurs to me that I won’t be able to do so for several months . . . kisses aren’t allowed in the sterile unit. I already feel like an addict in withdrawal. The physical link connecting me to my baby is still very intense. I need to smell her, touch her, kiss her. The distance between us is so painful.
Access to UPIX is strictly regulated; you can’t just walk in. Each patient can be accompanied by only one person at a time. No more. Also, visits are overseen. First, you have to ring the entry phone and show your credentials. A door opens onto a patio reserved for authorized visitors. From there they can see the patients—through glass of course, not directly. There’s one window per room, and next to each window is a telephone for communicating with the patient inside.
Loïc will spend this first day with Azylis. I wait a while before appearing by the window. I peep my head up shyly. They’re both in there already. Loïc is fussing around his daughter, checking all the fittings. Azylis is sleeping peacefully in her bed, now relieved of her cap and mask. Loïc has put her into adorable pink pajamas. She looks fine. But I’m not. I can’t control my emotions. Now that she’s actually in her sterile room, I have a glimpse of what’s in store for her. And it terrifies me. My voice sounds strangulated through the intercom. I don’t want to communicate my terror to Loïc, so I decide I should leave. I blow a kiss to my little girl from far away, so very far, too far. And I walk away.
I go downstairs to see Thaïs. She’s sleeping too, and mom is watching over her. There’s nothing more I can do at the hospital for now, so I go home to welcome Gaspard when he comes in from his walk. On my way home, I suddenly have to pull over in the shoulder lane. I cry till I have no tears left. I feel alone and empty, unbearably empty.
Get undressed. Put your clothes into the wardrobe. Take off your shoes. Put on the pants and gown. Slip on blue shoe covers. Disinfect your hands. Go through the changing room door. Wash your hands. Then disinfect them. Go through the second door. Walk along the corridor. Go into the airlock. Disinfect your hands again. Put a mask over your nose and a cap over your hair. Put on white shoes. Get into a sterile over-gown. No, the other way around, the over-gown first. Disinfect your hands and start again in the right order. Disinfect your hands again. Push the door to the room without touching the handle with your hands. Enter the laminar flow zone by pushing aside the curtain of vertical plastic slats—with your elbows, not your hands. And there, stop breathing. Or almost.
We repeat this ritual every time we visit Azylis. I hardly need to point out that it’s better not to forget something outside—to prevent having to start all over again. Sadly, I have a terrible habit of leaving my car keys in my pocket in the changing room. How many times will Loïc come and ask me for them through the intercom when I’m comfortably settled in the room!
Despite these minor inconveniences, we willingly comply with the constraints of the procedure. These precautions are the price we have to pay to be in contact with our baby. And that’s actually one of the advantages of coming to Marseille. Here children aren’t isolated in a sterile bubble; they can live in a proper room. A small one, yes, but a room all the same, where they can have company. The room is cut into two separate areas by a curtain of plastic slats. The compartment where the sick person stays is equipped with a vertical laminar flow system: The ceiling comprises a stringent filter through which the air passes, and this decontaminated air sweeps vertically through the area. This is what ensures that the space remains sterile.
Where transplants are concerned, the enemy is microscopic. Every effort is made to flush out the tiniest bacterium, every last virus, the smallest microbe. Any contamination can have dramatic consequences, so the instructions are draconian: Every item introduced into the room must be sterile. The same goes for bottles, diapers, favorite blankets, toys, etc. Clothes are washed above boiling point and then delivered to the room in hermetically sealed plastic. Azylis’s pretty little dresses haven’t taken kindly to this treatment. . . . I quickly shelve any pride in her clothes and replace them with basic pajamas and bodysuits.
The germ wars would never be complete without a thorough daily cleaning routine. The maintenance team are seriously house-proud. They clean the room from top to bottom in record time. I take the opportunity to learn a few techniques that are as swift as they’re effective. Always useful.
All the rooms in UPIX have the names of characters from the famous Asterix the Gaul cartoons. An irony of fate or a nod to the future, Azylis’s room is called Obelix. It makes us laugh because Azylis is more the size of Dogmatix . . . but she still has a legitimate place in Obelix’s premises: She may not have his weight, but I’m sure she has the same strength as Asterix’s invincible companion. And she fell into a cauldron as a baby too. In her own way.
The space dedicated to Azylis is especially small. The furniture has been kept to an absolute minimum: a cot, a TV, a table, and a phone. And an impressive panoply of medical equipment. There isn’t room for an adult-sized bed under the laminar flow. But Loïc and I want to stay with our daughter day and night, so we’re given a special armchair, which can be opened out and serves as a bed with only rudimentary claims to comfort. I’m thankful I’m only five feet three inches because I can
shoehorn myself into the chair quite well without my feet sticking out. But it doesn’t really matter how uncomfortable the furnishings are. Even with an excellent mattress and the softest sleeping bag, we wouldn’t sleep well: perhaps because of the stress, certainly because of the confined atmosphere in there, and definitely because of the clothes. We’re often too hot with all those layers on our bodies. And we’ll never get used to sleeping wearing a mask.
We adopt the rhythm of three eight-hour shifts. Or nearly. Our days are carved into three blocks of time: one with Thaïs, another with Azylis, and the last at home to see something of Gaspard. The division is not very fair; the allocation is made according to how serious the situation is. Azylis takes a considerable share of our time because we alone are up to staying with her, and we don’t want to leave her on her own. She’s far too young. Thaïs also needs someone there all the time, but Mom can take turns with us. As for Gaspard, of course he needs attention, but he doesn’t actually ask for much. He has a very busy schedule too! What with his expeditions in the garden, his walks around the old port, his trips to explore the city, and his afternoons on the beach—he never stops. One evening when I come home from the hospital exhausted, he throws his arms around me and says with a smile: “I’m so happy I’m having my vacation in Marseille. We’re doing all kinds of new stuff. It was a good idea coming here.” He hasn’t yet realized we’re not here just for the summer vacation. If he knew . . .
14
I DIDN’T KNOW IT WOULD BE SO NERVE-WRACKING. IN ITSELF, it’s not such a big deal, just a small hole in her abdomen, closed off with a “button.” Direct access to her stomach so that it’s easier to feed Thaïs. It’s become vital to her. At first we opted for a nasal tube, and with that system Thaïs was getting the nourishment she needed, but it didn’t suit her. The tube bothered her, and she tore it out as soon as the nurses’ backs were turned. The doctors then mentioned a method that was more intrusive but far more effective: a gastrostomy. We tried to evade the issue until we were confronted with the bald fact: Thaïs can hardly swallow anymore. This obviously poses a problem with nutrition, but it’s not just that. It’s dangerous for her to be fed by mouth. With every mouthful, she risks a fatal wrong turn: The food might not follow the correct route and travel into the airways instead of the esophagus. So Thaïs will never be able to eat normally again. And that is what puts an end to our reservations.
The operation has gone well, and Thaïs is waking gradually. I lift the sheet; a small tube protrudes from her stomach, just above her navel. It’s clean and neat, it doesn’t seem to hurt her, it’s practical and easy to access. Yes, there are lots of advantages, I know that. But I’m deeply affected by this procedure: I’ll never be able to feed my daughter again. The frustration! It’s so instinctive, the urge to feed your child. From now on, I have to program Thaïs’s “meals” on a machine, determining when they should happen, how long they should go on, and how much she needs. I hate the thought of feeding her artificially on some far-from-appetizing-looking liquid. Never again will she experience the taste of good food, different flavors, something savory, something sweet. And she so loves her food. . . .
The nurse tears me away from my dark thoughts when she says, “I’m going to show you how to operate the force-feeder.” Oh no, not that! How appalling! You can’t talk about force-feeding when you’re giving a little girl the nourishment she needs. She’s not some goose in Périgord! The nurse used the term automatically; it’s the recognized expression in the medical world. I have trouble containing my reaction but manage to ask her in a relatively calm voice not to use that word. She apologizes, very embarrassed, and corrects herself, “Is feeding system okay?” That’s much better. From now on, Loïc and I scrupulously ensure that force-feeding remains exclusive to poultry. This isn’t just quibbling about a word, it’s to maintain Thaïs’s dignity. In all circumstances.
As to outward appearances, nothing’s happening. Azylis is sleeping peacefully in her cot, like all babies her age. She has good pink color, is breathing steadily, and has a regular pulse. Of course there are all these medical instruments around her, but aside from this equipment, everything seems normal. Only in terms of outward appearance . . . because on the inside, it’s Hiroshima—the chemotherapy has just started. The principle of a bone marrow transplant can be summarized like this: Everything is razed to the ground and then built up again on new, healthier foundations. Right now, the bulldozers have been sent in. The timing is very precise. Azylis’s entire blood cell production has to be wiped out in the space of a week, so the chemotherapy needs to be devastatingly effective and lightning fast. The dosage says it all. Azylis, at a tiny nine pounds, is given a dose equivalent to that meant for someone weighing 220 pounds! Obelix putting in another appearance . . .
We don’t leave our pretty little Gaul alone for a moment. We scrutinize her every reaction, attentive to any suspect signs. But she seems to be coping with the shock. Every day, the doctors tell us how the chemo is going. They faithfully report back her counts of “polynuclear neutrophils,” “erythrocytes,” etc. These medical terms don’t mean much to us, and the levels make little sense to us. Each time we have to decipher, understand, and then translate these very specific terms. Medicine struggles to succumb to accessibility. . . . The doctors explain in simpler terms that the blood cells are being rapidly depleted, so the treatment is working, and Azylis will soon reach the stage suitable for the transplant.
For now, we are doubly vigilant because, with her white blood cell count dropping, Azylis is stripped of immune defenses. She is entering a period of aplasia when any infection could be fatal. Right now, she has no defenses. Both literally and figuratively.
Azylis didn’t want her bottle this morning. And it’s the same again now, in the middle of the day; she’s grimacing and crying with every mouthful. I don’t understand what the matter is. We haven’t changed anything, neither the teat nor the milk. Something’s wrong. The doctor sheds some light on the problem: Azylis has buccal mucositis—in other words, the surfaces of her mouth and throat are ulcerated. It’s one of the downsides of chemotherapy. So far, she’s only lost her hair, which isn’t very noticeable in a six-week-old baby who has bird fluff on her head.
Mucositis is a particularly painful side effect of the treatment—as unpleasant as having colonies of ulcers all over your throat. So Azylis is refusing to drink because it hurts. This is a problem because, whatever happens, she must keep up her strength. She really needs it. The solution is simple: She will be fed through a drip.
The installation process is easy: The drip is connected to the central catheter. This catheter, which was inserted under Azylis’s skin before she was admitted to UPIX, is the compulsory route for every treatment she receives while in the sterile unit. It is through there that her medication is administered, her chemotherapy and, from now on, her food.
As of today, and for a period of more than two months, my baby won’t drink a drop of milk. She will even lose the swallowing reflex. I feel so helpless: I can’t feed either of my daughters. . . . That’s hard for a mom to accept.
Why do things never happen the way we want them to? Thaïs was finally scheduled to be coming out of hospital. We were so looking forward to welcoming her to the house, and she couldn’t wait to be home . . . but, as luck would have it, today, the day she’s been anticipating for over a month, she’s not well, she’s feverish and nauseous. The doctors are adamant: There’s no question of her leaving the hospital in this condition.
This piece of bad news is the final blow for us. We’re worn out; worn out from going backward and forward between one floor and the other, one room and the other, one daughter and the other; and worn out by constant concern for our daughters’ state of health. We don’t know where to find the energy to go further down this treacherous path. We wish we could have a moment’s respite before Azylis’s transplant starts.
Thaïs looks downcast. It’s not so much because she feels sick, I know that: Sh
e’s disappointed. Just like us, perhaps even more so. She’s been here a long time, and she’s grasped the fact that she now has to wait a few more days before she can leave. Patience isn’t generally a characteristic of young children. And yet . . . as she lies in bed sadly watching me unpacking her bags, she suddenly dries her tears, picks up a doll, and goes back to playing quietly, as if nothing has happened. She even gives a welcoming smile to the nurse who comes to take a blood sample. I sit down beside her and can’t take my eyes off her, this little girl who never stops surprising me. I want to know what her secret is.
How does she endure all this with a smile? Where does she get the inner peace and strength to cope with so many trials? Of course, you could say she’s just a child. You can believe that she’s not aware of everything, she can’t picture the future and quickly forgets unpleasant experiences, etc. Yes, of course. But it isn’t just that, I can tell. Thaïs isn’t tolerating her illness, she’s living her life. She fights for the things she can change and accepts those she can’t avoid. What wisdom! What a lesson! I can’t help but admire her. And I’m not alone in that.
As the nurse goes out, she says gently, “See you later, Princess Courage. . . .”
15
MY HANDS ARE SHAKING ALMOST AS HARD AS MY HEART IS thumping. For the first and last time, Loïc and I are together in Azylis’s room. UPIX’s regulations allow this in exceptional circumstances, and today is certainly that. This August 25 isn’t just another day: Azylis is going to have her transplant.
The bag of umbilical cord blood is here in front of us, more precious to us than gold. An oppressive atmosphere fills the already confined space in the room. We’re finding it just a little harder to breathe behind our masks; we’re feeling just a little hotter in our coveralls. The air has given way to a dense combination of nervous energy and excitement. I think this must be exactly what people call “palpable tension.” A nurse runs through a list of final checks. Everything is perfect, the connections are ready, and Azylis is peaceful. The procedure can begin.
Two Small Footprints in Wet Sand Page 5