My two-year old niece is ill. Very ill...
At the end of November 2018, a family doctor diagnosed Mary with a particularly vicious type of childhood leukemia. The youngest of three, she’s a little toughie, used to rough-housing with her older siblings so my sister, Jo had initially ignored the crop of bruises that appeared on her chubby legs. It was Mary’s nursery teacher who wisely advised her to get them checked out. Mary has Acute Lymphoblastic Leukemia (ALL), a type of blood cancer that starts from young white blood cells called lymphocytes in the bone marrow, most often diagnosed in younger people”. It’s a hideous word. Leukemia. It shouldn’t be sharing these pages with my bouncy vital niece. Leukemia is a cancer in one of its most explosive, violent incarnations. Poor, darling little mite.
“Mary has leukemia.”
While dropping off my own daughters at school, I’d missed countless calls from my sister Jo. At about one in the morning for her in the UK, I finally rang her back. Over seven thousand miles away I heard the tremor in Jo’s voice. I can never un-hear those words. Mary has leukemia.
Like most people recalling a moment in time when they receive bad news, I can picture with razor sharp clarity the pair of greasy mynah birds scrapping and screeching over a discarded chicken bone on the pavement that Thursday morning...
9am, Singapore daily life unfolding before me. Through my fly spattered windscreen, I watched a hunched old woman in a flowery nylon housecoat sweep leaves away from her front gate. The breakfast show DJs on the local radio station passionately discussed where to find the best chicken rice. My nails dug painful pink half-moons into my left palm. My phone pressed hard to my right ear. I felt it shake as my nerves jumped and pulsed.
“Tuls, please come back. I need you.” Her voice was small, broken, terrified. My sister, six years my junior. She was the baby of the family whom I’d taken under my own maternal wing as a child of twelve when our mother died of cancer. Jo had been a mother herself for seven years now, but I didn’t hear a mother speaking that morning, I heard my little sister and she needed me.
“Jo, I’ll be there. I’m on my way ok? Just leave it with me, I’ll make it happen.” I swallowed my own terror. She didn’t need to know that I was also mentally juggling how I was going to leave behind my three young girls on the other side of the world, as well as my husband, my two dogs, my job. Two looming kids’ birthday parties to prepare for, an upcoming school nativity play I’d miss… And yet, despite this mental maelstrom, a powerful sense of purpose took over. The seemingly impossible became possible. I made plans, I wrote endless lists, made tons of phone calls, I leant on friends, I filled the fridge, I threw warm clothes into a suitcase. I was doing it. Twenty-four hours later, I boarded my London-bound flight.
A week after Jo’s cross-planet phone call, I gazed through the white metal bars of Mary’s hospital cot in her isolated room in the Critical Care Unit, deep within the bowels of The John Radcliffe Hospital in Oxford...
Around me, machines continuously bleeped, flashed and chirruped. Her ridiculously dark thick eyelashes fluttered gently against her plump cheeks as she slept off the side effects of her recent general anaesthetic. It is both a horror and a miracle to see her. There is the bladder catheter, the nasal-gastric tube, and the Hickman, which, beneath the skin, is plugged into her jugular, then popped out her chest wall and capped with a long plastic cap. There is a large bandage taped over her abdomen. Mary had just undergone, what I only learned hours ago, was a sterile procedure called a lumbar puncture, in which a needle is placed into the cerebrospinal space in between vertebrae in your spine. The needle is used to withdraw and to administer the chemotherapy directly into the cerebrospinal fluid. The bravest baby girl.
Barely a week ago, I had scant knowledge of leukemia. It was one of those horrific and unspeakable words you secrete to the back of your mind, tucked away with its other vile cousins, cancer, tumour and road accident. Now leukemia, and all those dizzyingly complicated words and alien procedures associated with it form the vocabulary of our new reality.
The John Radcliffe Hospital is a sprawling white-tiled hulk that dominates the northern leafy outskirts of Oxford’s Headington. Built in the early 1970s, this major NHS trauma and centre of excellence, with its peeling linoleum and scruffy sense of purpose, is a far cry from the plethora of shiny, squeaky clean and heavily funded hospitals in Singapore. I had made my way through the labyrinths of green painted corridors, past frail old men in wheelchairs, tired doctors in surgical scrubs and a team of cheery volunteers hanging up Christmas decorations. Tinsel and jolly red-nosed reindeers seemed so out of place – the forced cheer, even more, gut-wrenching to witness in such a miserable place.
Jo met me outside a basement lift. Her pale face crumpling when she saw me. I held my baby sister as sobs wracked her entire body, her bony shoulders shaking against my chin, tears wetting my collar...
I just wanted to take her pain away. Hanging onto my arm, she led me to the entrance to the Critical Care Unit where we were buzzed in through heavy swing doors. Bright red hand sanitizer dispensers were everywhere. It was hushed. A place designed and decorated for your nightmares.
Mary sat separated from the rest of the ward. Her immuno-suppression meant isolation. She’s not in isolation because she has cancer, she is in isolation because she’s being treated for cancer. Her treatment imperils her health. Herein lies the paradox. My gorgeous little niece, a twenty-pound paradox of hope and despair was sitting upright in her cot, and despite the bruises on her legs and one staining her plump cheek – the warning flags of her illness – she looked kind of ok to me. Charlie, her father sat by her cot, grey, hollow-eyed, emasculated. She thrust out her pudgy hands to take the little unicorn night light I’d bought her as a gift. Entranced, she flicked the button on and off, shrieking with delight when it glowed, lighting up the depressing windowless room with its sickly overhead lights. Uneaten plates of congealed hospital food were piled up in one corner, hurriedly packed bags spilled over in another. She had been diagnosed barely 48 hours earlier, but Acute Lymphoblastic Leukaemia is so aggressive that chemotherapy treatment had to begin as soon as possible. The diagnosis turned my sister’s life upside down as she and Charlie were thrust headlong into the toxic world of chemotherapy, a world I knew little about. I frantically searched for more details on my phone. Experts define chemotherapy, as the use of drugs to treat cancer. Chemo drugs travel through the bloodstream which makes chemo useful for leukemia that has spread throughout the body. Chemo is the main treatment for people with ALL and uses a combination of anti-cancer drugs.
Jo saw me taking in Mary’s thickly bandaged wrists. “Her white blood cell count is so frighteningly high, Tula. It makes her blood unusually thick and sticky. There are so many white cells that they are squeezing out the red, which means there’s little oxygen in her blood. They can’t operate on her yet to insert her Hickman line – that’s how the chemo is administered. Strong steroids are being given through those cannulas to try and thin her blood.” She nods her head towards Mary’s hands, and I noticed the plastic valves peeping through the gauze.
“She won’t survive a general anaesthetic unless her white blood count is reduced. Until they manage to get the Hickman line in, they’re going to try and administer the chemo and take blood samples through the cannulas.” Those terrifying words spilt out as if she were discussing the weather. I was staggered by how knowledgeable she was already, while I had to google to find out that, an intravenous cannula is a very small, flexible tube placed into your veins, usually in the back of your hand or your arm… one end sits inside your vein and the other end has a small valve used to put medicines or fluids into your bloodstream. Jo stroked Mary’s hair, fussed and fiddled with the poppers on her baby-gro.
I hadn’t been there long enough to even take off my coat, when the bespectacled pediatric oncologist shuffled into the room, tying up the bows of his protective plastic apron behind his back and rubbing in hand sanitizer...
Two smiling nurses followed him. He was a kindly bear of a man and muttered while pulling up a chair. “Ah hello! Know what? I’m just going to sit. I seem to take up so much space and I think the little ones find that intimidating.” I liked him immediately. Little Mary started to cry, she had quickly learnt to associate doctors and nurses with pain. He explained that because of the syrupy nature of Mary’s blood, both cannulas needed to be replaced regularly. As this tugging and yanking was a distressing task, I suggested that Jo and Charlie leave the room and grab a coffee, that I’d stay instead. My heart actually hurt, and tears stung my cheeks as I held the struggling toddler tightly on my lap. “Mumma, mumma, mumma!” she wailed pitifully, lashing out as the medical team desperately tried to find a responsive vein.
Later that afternoon, the first of a terrible cocktail of chemotherapy drugs were administered into Mary’s little body. The chemo drug of choice that day was the evil sounding ‘Vincristine’. It was wheeled into her room by masked and gloved nurses, stored in a bright yellow box emblazoned with a radioactive warning sign. Each one of these drugs has hideous side effects, from nerve and heart damage to numbness and hair loss – it is both a poison and a cure. The road ahead for Mary and her family is a long one, and Singapore is so far away. I glanced at my watch. My own girls would be bathed, tucked up and long asleep, clean hair fanned out on pillows. Sumba, my biscuit-coloured rescue dog, would be lying sentinel at their bedroom door. Their little world is one I knew so intimately, yet so far removed from life at The John Radcliffe, I struggled to conjure it up.
The story of leukemia – the story of cancer is the story of patients who struggle and survive… Resilience, inventiveness and survivorship anaesthetic qualities emanating from those who struggle with illness. , is the word we all hold onto, hard.
An Update on Brave Mary...
As I write, Mary is undergoing the third and the most brutal round of chemotherapy yet, at the John Radcliffe Hospital. The high-dose drug being administered into that tiny, yet plucky toddler is called Methotrexate, at a level set to test her little body to capacity. Its side effects are horrific. Painful blisters and ulcers line her mouth and entire digestive tract. The skin on her hands and on the soles of her feet is cracked and raw. The drug is so strong that she has to be hooked to a continuous supply of IV fluids to flush out her kidneys and liver to minimize the damage it wrecks on those vital organs. The effects of this stage are accumulative as this treatment continues, leaving her neutropenic and susceptible to infection. Her is blood regularly monitored to check the requirement for necessary blood and platelet transfusions.
I continue to be in awe of my amazing niece, with her ready smile and infectious giggle – who has now lost all her lovely caramel-coloured hair. Her once squishy thighs are frail and thin. I feel the distance from my wonderful sister every day. Brave, darling Jo. They are weathering the most battering of storms with a stoicism that takes my breath away. While our lives continue, I have to remind myself that they are very much still in the thick of first-line treatment, and every day presents a new hurdle to overcome, whether it’s a potentially fatal chicken-pox scare or a sudden dash to the hospital for a blood transfusion. This living nightmare is their new normal.
But their friends have rallied amazingly. Their doorstep is rarely without a home-cooked meal left with a thoughtful note. Gifts still arrive in the post for Mary, all be it at a slower pace than when she was diagnosed, but still so gratefully received. Friends regularly send messages – an essential network of support which has undoubtedly helped carried Jo and Charlie to this point. Everyone is desperate to help in whatever way they can. The story of Brave Mary has affected many. My husband, Henry ran his first ever marathon at the tender age of forty-three in Tokyo this March to raise money for the wonderful charity CLIC Sargent and awareness of Brave Mary’s story. A group of Jo’s school and local friends ran five miles – with Charlie pushing dear Mary in her buggy – all the way through the hilly grounds of Blenheim Palace. Friends will be walking 100 kilometres along the rolling escarpments of Berkshire’s Ridgeway, and others, including Jo, have completed 108 Yoga Sun Salutations in Mary’s honour, and to raise further funds for CLIC Sargent.
This cancer charity provides much-needed support for families whose lives have been turned upside down by having a child diagnosed with cancer. Families like Jo and Mary. My own family.
Please visit www.clicsargent.org.uk
By Tula Goodwin