Another battle to fight.
21
ROLL ON PARIS! WE HEARD THE NEWS THIS MORNING: WE’RE all going home together! After much discussion, the doctors shelved their reservations about Azylis’s leaving so soon. They let themselves be persuaded by the good results from her latest tests and a few mouthfuls of milk swallowed with a semblance of appetite. They’ve swiftly contacted a Paris hospital to ensure that the progress of her transplant continues to be monitored.
Our bags are packed and shut in the twinkling of an eye. The administrative formalities are dealt with. The final medical recommendations to help settle Azylis at home are taken on board. Our Marseille epic is coming to an end.
So here we are on our way home, feeling emotional about this turning point. We leave Marseille behind, along with so many dear people, family who are now closer than ever, nurses who have become friends, and “copaings.” No more trips to school lined with southern pines and palm trees, sunshine warming our bodies and souls, late night suppers by candlelight in the dew, nights shoehorned into a hospital armchair, days in face masks and coveralls, Gaspard’s expeditions in the garden, plus Ticola’s arrival, Azylis’s first gurgles, Thaïs’s last looks; in short we’re leaving behind a myriad of memories, bitter and sweet, times of tears and laughter. Not without shedding a tear.
Paris is opening its arms to us. We can’t wait to get back to our apartment, our normal bearings, our little ways, our daily life . . . the last packing boxes to empty, pictures and curtains to hang, and the huge amount of cleaning that’s waiting after four months away!
Home, sweet home, here we are. All five of us. At last. There’s a wonderful surprise waiting for us at the apartment: While we were covering the distance from Marseille to Paris, a battalion of good fairies infiltrated our home armed with brooms, brushes, floor mops, and sponges. They’ve polished, scrubbed, vacuumed, and tidied tirelessly for a whole day. The result is remarkable; there isn’t a single sign of a whole season of dust.
A bottle of champagne is waiting in an ice bucket with one word written in bold letters on an improvised sign: Welcome! It feels so good to be home . . . such a simple pleasure.
Gaspard can’t contain his delight. He takes out all his toys, marveling at each rediscovery as if seeing them for the first time. Thaïs lies on her specially adapted bed, joining in with a smile. She found the journey very tiring but seems happy. Azylis doesn’t see much of this wave of happiness washing over us. As soon as we arrived, we “cloistered” her in her room. It was one of the conditions on which she came home.
Her quarantine should last several months, giving her immune system time to develop and provide her with effective protection against the dangers of germs and viruses. For now, her only authorized outings are weekly trips to the hospital to monitor the transplant’s progress, chart her blood cell production, and ensure she hasn’t caught any infections.
Her room at home has been transformed into a protected area. It’s been scrubbed from top to bottom and now has a strong smell of bleach and antibacterial gel. A smell we find reassuring. We’re just as draconian as we were in the hospital: Before going into her room, we disinfect our hands, remove our shoes, and put on masks. It’s not as restricting as at UPIX, but we have to keep up our vigilance because these sorts of practices aren’t natural at home. We have to think through our every move. As an extra precaution, Gaspard and Thaïs aren’t allowed in her room. This evening, though, we agree to slightly bending the rules in honor of this great day. We sit them in the doorway to their baby sister’s room with masks over their noses. Thaïs is safely ensconced in her molded seat, and Gaspard is holding her hand, laughing nervously. Azylis sits in her cot, watching them with a hint of amazement. She doesn’t recognize them; she doesn’t actually know them. Not yet. For the first time in months, our three children are together in the same room. Or nearly.
The visit doesn’t go on forever. Gaspard, Thaïs, and Azylis are very tired after a day filled with emotion. The moment they’re in bed, sleep carries them off in its welcoming arms. Once the house is asleep, Loïc and I crack open the champagne and drink to our reunion as a family. Never guessing it will last no more than one evening. If we knew . . .
It’s a rude awakening. With the first light of dawn, Thaïs is vomiting, coughing, choking, and convulsing. Alerted by Gaspard’s screams, we run to her bedside. I take her temperature, and the thermometer climbs above 104°. We don’t waste a minute and drive her straight to the hospital department that monitors her. The doctors diagnose gastroenteritis complicated by a serious pulmonary infection. A veil has fallen over the future.
Our happiness as a family of five is over. Loïc is going back to work in two days’ time, Gaspard is embarking on two weeks of school holidays, and Thaïs is in the hospital in critical condition. Our family nucleus has only just been reformed, and it’s splintered once more.
I’d like to know one thing: Did Sisyphus rant and rage and drum the ground furiously when the rock he’d so laboriously rolled to the top of the slope crashed back to the ground? Or did he just return to his rock, unruffled, and resume his ascent as if nothing had happened? Indefatigably?
We don’t have time to find an answer or feel sorry for ourselves because our peace has been so summarily interrupted. We pick up the pieces and try to restore a makeshift balance. Gaspard will spend the holidays with his cousins. Thérèse and I will swap duties between the two girls, one at the hospital, the other at home. Loïc will replace one of us in the evening when he comes home from work. It can work like that, we’ve already tested it out, not that long ago. We should manage this time too. At least for a few days.
22
MONDAY, EARLY IN THE MORNING. AN AMBULANCE COMES to pick up Azylis to take her to the hospital. We’re both ready, safely protected behind our masks. This first contact with the outside world makes me secretly nervous. Please don’t let some malicious germ cheat its way into our trip. The ambulance crew are used to high-risk transfers; they’re extremely vigilant. Azylis has nothing to fear. She’s not worried about any of this anyway. She’s enjoying the outing. During the few minutes of the journey, she tries to catch glimpses of the world that’s denied to her. She cranes her neck to look out the window wide-eyed. When we arrive at the hospital, she’s taken straight to a sterilized room. She looks a little frustrated when the nurse closes the door, cutting her off yet again from the bustling colorful world outside.
We get to know the place and meet the medical team who will monitor the transplant’s progress. The consultant checks over Azylis and outlines the schedule for her visits, treatments, and assessments. The next few months are going to be very busy: Azylis has to come here every week, and these appointments will be opportunities to ensure that everything is going well. On top of that, every three weeks she’ll be put on a drip of concentrated antibodies to compensate for the deficiencies in her immune system. For all her other treatments, arrangements are made for her to have in-home care. A nurse will come over twice a week, mainly to change the dressing on the catheter.
The doctor points out that if she has the least sign of a fever, Azylis must be hospitalized. It’s not thrilling news. A five-month-old baby has endless opportunities, often harmless, to have a slight fever. And if we have to bring her to the hospital every time she cuts a tooth, I reckon she’ll be spending most of her time here. Still, we don’t take this instruction lightly; one fever can mask another, perhaps from a far more serious source, such as a systemic infection carried by the catheter.
After a day spent in the hospital, Azylis is happy to be back in the ambulance, a source of unexpected pleasures. I can breathe a little more easily: I’m pleased with this first contact. To be honest, I was slightly dreading it. We were used to the staff and routines at the hospital in Marseille; here we have to go back to square one. It’s not easy putting our faith in a new institution, however highly reputed it may be, and entrusting it with what we hold most dear. We’ll see. . . .
&n
bsp; We arrive home at the same time as Loïc. I take a few minutes to fill him in on our hospital visit but don’t go into much detail—I don’t have the time. I grab a bag, throw in some overnight clothes, a good book, and a photo of the children and rush off to be with Thaïs. It’s already dark outside, but the day is far from over.
A lioness’s strength in a damselfly’s slender body. That’s what I see as I watch over Thaïs lying in bed: thin, ashen, and breathless but clinging to life and determined to fight. Since she arrived in the hospital, she’s had a succession of complications. The gastroenteritis is persisting, and the pulmonary infection is taking hold. She’s physically very weak but not giving up. She’s fighting tooth and claw to get through this difficult pass. It’s going to take time, that’s for sure. Much more than for a normal child; her leukodystrophy is darkening the picture. In spite of everything, I feel confident. I’m sure she’ll pull through yet again. Because she wants to.
This evening, though, her symptoms don’t leave much room for optimism. Her condition is deteriorating, her breathing slowing down, her heart racing. The nurses stay in her room, doing more and more checks of her temperature, cardiac rhythm, and oxygen levels. They bring in more nebulizers and raise the oxygen output to supplement Thaïs’s chaotic breathing.
Shortly before midnight, when the doctor is about to request a transfer to intensive care, the nurse picks up some encouraging signs—the first for many long hours. Thaïs’s pulse is slowing, her breathing becoming slightly more regular. The storm is passing. Thaïs didn’t go under.
The next few days are critical, even with the barometer rising. My little lioness very slowly gets some of her strength back, but she’s still very vulnerable. This bout has had an impact on her physical state, an indelible effect.
Nothing will be the same as before. Thaïs has come home after two weeks in the hospital. The infections are under control, but Thaïs paid a high price. My Princess Courage expended a great deal of energy overcoming them, with heavy consequences. Her condition has deteriorated further, and she’s now subject to considerable spasticity (exaggerated contractions of muscles when they’re stretched). She can no longer cope with her molded chair, and she grimaces with pain when we carry her in our arms or move her, however carefully. The sentence is irreversible: She’ll never get out of bed again.
It’s strange having two daughters, each in her own bedroom, separated from each other by a corridor they cannot cross. It’s even more disorienting seeing their futures heading in such diametrically opposite directions. In a few weeks, Azylis will finally be able to cross the threshold and discover the world which has so far been hidden behind her bedroom door. She is signing up to a positive dynamic.
Thaïs, on the other hand, is gradually withdrawing. Over the course of her life, she has moved through every room in this apartment, first on foot, then crawling, and finally sitting in a special chair. She won’t anymore. She will see only the aspects of life we bring home to her from beyond these four walls, beyond the rectangle of her mattress. Her world is restricted to six feet six inches long by three feet wide. Shrunken so small, it breaks my heart.
It’s widely recognized that immobility causes all sorts of torments for body and mind. In terms of morale, Thaïs shows no signs of affliction. She lies peacefully in her bed, listening to stories, enjoying visits, and tussling with her brother. Physically, being bedridden raises concerns. Human beings aren’t designed to live lying down. Thaïs experiences all sorts of discomforts: Her pressure points become inflamed, her limbs stiff, her bronchi congested. The situation can go downhill very quickly without swift action. To remedy this, the doctor recommends a daily visit from a physical therapist to facilitate her breathing and maintain a semblance of mobility.
We scour the Yellow Pages for a practitioner prepared to tackle this sort of rare condition in the home. The task proves harder than we first anticipated. We’re on the verge of despair when we eventually find a precious gem: Jérôme accepts our request straightaway. When he introduces himself to Thaïs, she instantly takes to him although she can’t see him. It’s instinctive. I can feel her anticipating his visits every day. She sighs with delight when he comes into her room and lets him manipulate her with complete trust. It’s very touching for me as a mother because, despite the changes in many of her faculties, I can tell that my daughter’s heart still knows how to swell with affection.
23
AN INFERNAL DOWNWARD SPIRAL. ONLY A WEEK AFTER THAïS came home, when she finally has regained her bearings and some of her strength, there are new complications. She’s in pain again. Terrible pain.
The episodes are increasingly frequent and violent. Of course, we have a whole armada of drugs to give her relief, but the pain resists them, and the attacks are getting longer. They can happen at any time, with no warning, and end in the same way as they have started. They can be over in a flash or can go on and on for an hour. However long they last, they have one thing in common: They’re unbearable. These excesses of suffering leave Thaïs exhausted and propel any witnesses into a state of shock.
This afternoon everything is calm in Thaïs’s bedroom. She and I are huddled next to each other on the bed, listening to a story, when one of these attacks erupts—the most painful I’ve ever seen, the most traumatizing. I’ll never be able to describe the scene. There’s nothing worse than watching, powerless, as your child suffers. Nothing.
Never again. I never want her to suffer again. It’s unbearable. We need to use more drastic measures, move up a notch, put every wheel in motion to ensure this stops. Right now.
Once Thaïs is calmer, I call the hospital. I’m still in shock, my fingers shaking as I dial, and my eyesight blurred by tears. When I explain the situation to the doctor, he decides to have Thaïs hospitalized immediately.
I have time only to gather the minimum requirements for a hospital stay, not forgetting the indispensable lullaby CD, before the ambulance arrives outside our building. A few minutes later, it’s sweeping up to the hospital door, all sirens screaming. The journey has triggered another attack. I heard the driver commenting quietly, “Oh, my God, it’s not possible to be in that much pain,” before pressing his foot a little harder on the gas.
Zero tolerance. Confronted with pain, hospitals apply clear and precise instructions: On no grounds, under no circumstances, is a patient allowed to suffer. Even less so if it’s a child. The thinking has changed: I remember when I was a girl having to grit my teeth and hold back my tears while the doctor assured me, “It won’t hurt. Come, you’re a very brave little girl.” Well, yes it was painful getting all those stitches without anesthetic! He could at least have admitted it. In the past, they got rid of pain by denying it. That logic is now outdated. Thank goodness! Nowadays, not only is pain recognized but efforts are made to evaluate its intensity and suppress it, even in the very young.
The moment she arrives at the hospital, Thaïs is taken into the care of a female doctor who specializes in pain management. This is a new discipline in the medical profession. And oh, what a useful one! After a quick but thorough examination, she assesses our daughter’s degree of pain; it’s off the official scale. We already knew it was beyond intolerable. You only had to see her. . . . The doctor prescribes the necessary remedy to give her instant relief. Only moments later, Thaïs relaxes at last and gives in to restorative sleep.
Quietly, so as not to wake my sleeping princess, the doctor explains the pain relief system she intends to put in place. With the new approach to pain, medicine doesn’t just acknowledge and ease physical suffering, it also tries to anticipate it. Thaïs mustn’t have these episodes. Up till now, we were caught out by the rapid developments in the illness and the pain that went with them. From now on, we must be one step ahead.
The doctor reviews the whole array of analgesics that might be useful to Thaïs, from paracetamol to morphine, to nitrous oxide gas, the so-called laughing gas that blots out pain. There’s no doubt about how effective these trea
tments are, and yet the doctor wants us to think before giving our consent, because these drugs are not without side effects. They’re going to produce a marked sleepiness in Thaïs. That’s the other side of the coin: She won’t be in pain anymore, but she won’t be so “there.” We accept without a moment’s hesitation.
24
“NINE THIRTY TOMORROW EVENING. BLUE WARD ON THE third floor, first room on the right. You’re taking over from Caro. She’ll give you the instructions. Marie-Pascale will take over from you at eight o’clock the following morning. I’ll get there a little later in the morning.”
“Okay. Got that. If there’s a problem, may I call?”
“Yes, any time, day or night. Good luck and goodnight.”
Anyone would think we were in a spy film. Reality is even more compelling than fiction. This is Thaïs’s army in operation, an army that was assembled as soon as she entered the hospital. In fact, news of her hospitalization traveled more quickly through our circle of friends and family than a burning powder trail. Dismayed by this new separation, those close to us, and even those not so close, have offered their help and their time. A network is set up at lightning speed, taking turns to sit with Thaïs day and night. The principle is clear: We need to ensure there’s someone by her side the whole time, twenty-four hours a day, relaying each other as much as possible. Sometimes visits overlap, when the relief guard arrives a little early or the previous visitor stays on. The nurses are used to this constant ballet of new faces beside our princess. They call it “Thaïs’s solidarity.”
Two Small Footprints in Wet Sand Page 8