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Story of Lyla Nsouli

Written by Simone Nsouli

Lyla was never a fearful child and was always keen to try new things and do things on her own.

Lyla was born at 5pm on Christmas Eve, December 24th 2008. She had a natural delivery free of complications and was assessed as a totally healthy newborn baby. She immediately fulfilled all our hopes for our baby as new parents and our dreams for her future were set alight.

Lyla with Mamma and Dadda.

The first girl in a family with two generations of boys, she was doted on from the start by all of her family. As an infant, she spoiled us as parents by being a very easy, happy and relaxed baby. As soon as she could smile, she always had a friendly, engaging reaction to any new or familiar face that would peer down into her pram or cot. She grew big blue eyes, a huge toothy smile and a head of wild, curly hair her paediatrician once described as "spun gold". We would rarely walk down the street without having someone smile at her or comment on her hair.

She was a normal, healthy gregarious child, full of energy who talked very early and who has always loved to sing and dance. Lyla would entertain any visitor to our home with her exuberant singing and dancing to The Wiggles or her favourite Monkey Music or Barney songs, as well as her "yoga" somersaults and stretches on the kitchen floor. She loved to dance with her "Dadda", and anyone else she could pull onto their feet, when her music request was playing loudly at home in the kitchen.

She would often ask for "French music" and saunter and swing in the arms of her obliging father. As soon as she could speak, she demonstrated an amazing ability to remember the words and melodies of many songs and would often recite them as they popped into her head at any moment. We can recall being stunned to discover that at two years old she was singing along, word for word, to songs on the radio while driving in the car. At the age of 2 years and 3 months, she was able to spell her name and read most of the alphabet. By the age of 2 years and 9 months, Lyla was able to recite her mother's mobile phone number and her home address.

Lyla also showed an early love to interact with people and a particularly strong affection and fascination for other children. She would be gripped with curiosity when she saw another child and would linger nearby until she was able to strike up a conversation or hold a hand. Alongside this affinity for others developed a strong sense of independence.

Lyla was never a fearful child and was always keen to try new things and do things on her own. She had a huge desire to explore her surroundings and was never one to sit still and play in one spot. Even in her much loved group music classes and gym classes, Lyla was always the one child who wouldn't sit in the circle with the others when there were places to discover and new objects to play with.

Her constant desire to be on the move and get into anything and everything meant that we were always on our feet chasing after and making sure she didn't get herself into trouble. She never needed encouragement to try something new. Lyla was always known for her extremely strong determination to do everything herself. "I do it! I do it!" was one of her most used phrases. Lyla also had a strong sense of mischief and a great sense of humour and fun from an early age. She loved to tease and be teased, to be goofy and silly and to be chased and chastised for her naughty behaviour, shrieking with laughter while shaking her head of huge, wild, curly hair. She was always fearless and when she would fall or trip instead of crying she would just look at us, smile and say "BOING"!

One of the few things that she would slow down for was to admire and collect one of her favourite things - flowers. In fact, there is little debate that "flower" was her first word. She would see flowers everywhere and point them out to whomever she was with. And she wanted to pick them anywhere she could. In one of our favourite photos of her, she is 18 months old and sat alone in a field of daisies in Hyde Park, content in a world of her own.

When she mercifully did develop a greater desire to sit still, it was apparent that she also had a huge love of drawing and painting. In the course of her illness and her treatment, this became a huge source of comfort for her. She loved to sit and paint and draw and adored having her face painted. When she asked others to draw, or got her face painted, her request was always for flowers and butterflies, and always in pink.

In the months before her diagnosis there were some changes in Lyla. Looking back now, these changes may have been early indications that something was wrong, but she was in her "terrible two's" stage and becoming aware of the arrival of a new sibling, so it was difficult to relate them to a sinister illness. Even the experts in her disease agree that there is no way to distinguish this behaviour as something other than normal under those circumstances. Whatever the reason, these changes were a definite cloud over her usual self. She suddenly became more clingy and anxious around strangers and fearful in social settings.

In reality, we had no indication that something was wrong until the devastating diagnosis made on August 13th, 2011 in France, while on our summer holiday. We had just spent a wonderful holiday on the beach in Spain with her young cousins (whom she adores) and we woke up early on August 13th, 2011 to catch a flight to Nice. We remember how she came out of her bed with the biggest smile and in the best mood but we quickly noticed that she was dragging her left foot but did not complain of any pain or discomfort.

We decided we would look up a local doctor when we arrived in France later that day, but after a short flight, only hours later, we were alarmed to see it had worsened, and took her straight to the hospital emergency room. An MRI was done within an hour of doctors assessing her and determining that her entire left side was weak. After she returned from her scan, we waited in a room with a sedated Lyla, for more than a hour, after being told that a neurologist was coming to speak to us about "abnormalities" they had discovered. It was an excruciating wait full of panic and overwhelming fear and anxiety.

However, this was nothing compared to the horror of being taken away from Lyla, down a dark corridor, to a small doctor's office, and told by two strangers that Lyla had Diffuse Intrinsic Pontine Glioma (DIPG), an untreatable, incurable, inoperable, aggressive brain cancer. That she was expected to only live months. The words were like painful, physical blows, difficult for the mind to assimilate and causing such extreme anguish that our reactions range from numb disbelief to absolute hysteria. In that moment, our lives changed forever.

As parents, we did everything we could to hide the reality of the situation from Lyla. However, as her illness rapidly took hold of her, she clearly knew and felt something was very wrong. We brought her back to London within days of her diagnosis and a week later, commenced her six weeks of radiotherapy. In the week before commencing radiotherapy, it was shocking how quickly Lyla was being affected by her illness.

She became extremely lethargic and unable to walk or move much. She could not move her left arm and her right eye could no longer move beyond a certain point as the tumour damaged the nerve. Even the look in her eyes changed completely. She was also on a high dose of steroids medication which gave her manic mood swings. She would lie on the couch and stare, gloomily and glassy eyed or sleeping for hours.

The only thing rousing her would be the desire to eat, her appetite greatly over stimulated by the steroids. Her emotions ranged from depressed to angry to highly anxious and irritable. At night, she would wake almost hourly, distressed and often desperate for food. Once radiotherapy (RT) began, she needed to fast from the early hours of the morning to have her daily general anaesthesia for each RT session. So, not being able to eat, being manic from steroids, and suffering the symptoms of her tumour, and not understanding why, made her nights brutal.

Of course, over time, she began to understand, accept and dread her daily routine of the drive to the hospital, the nurses' checks, the General Anaesthetic room the unpleasant injections and gases and the canula I.V. needle bandaged to her hand each day. Lyla's intelligence and perceptiveness of the situation made her very sad, pensive and deeply distressed about the prospect of each day.

When we would try to make her laugh or smile, she would turn her head and say "I don't want to smile, I want to cry". The six weeks endured for her radiotherapy were absolute, heart-wrenching, agony. Each day brought fear, pleading, screaming and hysteria and rage from Lyla and total anguish and heartbreak for us. She gained 20% of her body weight in two weeks, grew excessive amounts of facial and body hair, lost almost half of her beautiful hair in a ring around the back of her head and ears, and the skin on her neck and ears burned, peeled, cracked and bled. She was bruised from having daily injections and blood taking, and bore scars on her breast and neck from a Hickman Line (a subcuteaneous IV catheter surgically inserted under the skin to direct injections into the vena cava) that had to be prematurely removed after ten days when she suffered a raging infection that forced her to stay in hospital for a week with a blood transfusion and daily antibiotics.

Lyla's eyes became dull, heavy and sad. It was as if their lights of joyful exuberance and childish innocence, were completely dimmed and darkened.

Despite the suffering she endured during radiotherapy, Lyla's tumor remained stable for only two months during which time we traveled with Lyla to her favourite beach holiday, swam with dolphins on her birthday and went to Disneyland Paris. Shortly after her third birthday, we were informed that her tumor started growing aggressively again. Lyla’s condition deteriorated very quickly and she experienced the awful symptoms experienced by DIPG children (loss of ability to stand, sit up, speak, etc).

Lyla passed away in the early hours of January 24, 2012 in the arms of her parents.

We miss her terribly. She was truly our pride and joy.

Letters to Lyla

My Dearest, Darling Lyla,

I want to say from my heart, some words to you.  But my heart is so broken, and my mind is so bereft that I worry that nothing I say will be good enough.  How can I bear to lose you?  To never again see your amazing, toothy, wide smile and pouty lips that seemed to stretch a mile.  And hear your sweet voice asking me to carry you or saying, "I want to sit on mamma's lap."  How can it be that I will never brush your beautiful hair again and help you choose the perfect hair clips to match the clothes you had chosen to wear.  How can it be that I will never see you in the car seat behind me asking me funny questions about the world, singing songs on the radio, telling me about your mornings at nursery.

Never again will I hear your voice shouting "Museeeeeuuuuum! Gymboreeeeee! Monkey Music!" when we drove past all the places you knew so well.  Never again hear you shout, "S for Simone!" every time you saw the letter S on a street sign, on a bus... how can I bear this?  How can I bear not having you there to pull my dresses out of my closet and say, "Mamma, you want to wear this one?" and play with my jewellery and always want to walk around in my shoes.  And then admire your reflection in the mirror and give it a kiss.  How can I bear walking down the street without you in the pushchair in front of me?  Pointing at things, telling me where to go, demanding that I buy you flowers every time we went past a flower stand, and always pink roses.  How I will miss looking at the flowers with you in the park, searching for ladybugs in the bushes.  Being so amazed every time you would say to me with so much excitement, "Look Mamma, mooooon!"  For some reason, even in the middle of the day, you would always look up to the sky and spot the moon if it was there.  I want to remember everything about your face.  You always looked so beautiful when you slept.  Your sweet little nose and the amazing contours of your face.  The gentle slope from your forehead down your nose that Dadda and I loved to kiss so much.  The beautiful expanse of your closed eyelids and your long, dark eye lashes flecked with blonde.  Your eyes and your hair made it hard to notice your exquisite mouth.  But what an amazing mouth!... I don't want to forget any detail.  I want to remember your lovely, long hands and feet.  People always commented on what long feet you had and your big, big toe.  I want to remember your hands and feet in my hands.  I loved how your little hands were always warm when I held them to walk with you.  Their warmth was always so reassuring to me, long before there was anything to be scared of.  What will poor, sweet, little Zeydie do without you to show him the way?  He was looking for you frantically after you left us.  Saying your name repeatedly as he always does.  Thank goodness he is too young to understand.  I know people are going to ask me where you are.  People I don't know but who always saw you because they always noticed you.  I got so used to strangers commenting to me about you.  If ever I dared to imagine the worst thing that could happen, this was it. This was it before it ever happened.  And the mere thought of it would move me so much.  I was always so grateful for you and your health.  And now this has happened.  How can this be?  Is it because I dared to dread such a thing?  I don't know what to do my Darling.  I suppose we will find a way to grow around the enormous gaping hole in our hearts and our life as a family.  But it will never be the same.  I'm always amazed that there was a time before you.  Our entire home is built around you.  You are everywhere.  Yours was always the loudest voice in the house. And your laughter resonates there still...How we will miss you so awfully, Lyla.  It will be so hard. But it will be bearable so long as you are much, much better off than us.

With so much love,

Your Mamma

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Layoul, you are my dream that came true.

I remember so vividly when I learned that I was having a girl, I was so excited.  My mind started racing and wondering what you would look like and what kind of person you would be.  You turned out to be everything I ever dreamt of.  You were beautiful.  Just so perfectly beautiful.  You had the biggest blue eyes, your wild gorgeous crazy hair and the most beautiful of smiles accented with the most amazing lips.  So often, I would stare at you and say to your Mama, "Look at this little girl we have, she is like a perfect little toy."  We couldn't go anywhere without having someone smile at you or try to touch your hair.  You were also so bright and so determined.  You always knew what you wanted.  Never any question about that.  Forget about ever buying a dress that you had not picked.  You just would never wear it.  You had to do everything your own way and it was impossible to convince you otherwise.  I keep hearing your words, "I do it! I do it!" again and again in my head whether it is climbing in the playground on some wall that is designed for a 10-year-old or drinking from a glass that you could barely hold.  You were just so much fun.  What a personality and spirit my Layoul.

You had everyone wrapped around your little finger but no one as much as me.  And you knew that as well and toyed with me... "Go away Dadda, leave me alone now."  I am going to miss so much hearing that.  And then I would pretend to cry and sometimes you would feel bad for me and come over and give me a hug and say "It's OK Dadda, it's OK..."  Layoul, you know how much Mama and I love you.  Our whole life revolved around you.  Your Mama and I would so many times sit and look at you and say to each other "Can you believe this little girl didn't even exist a year or 2 years ago and now she is our entire life and could not imagine life without her?"  I would sometimes go to bed early so there's less time to wait before seeing you in the morning.  I remember your Mama struggling to put you to bed and less than two hours later she would say that she couldn't wait until the next day to see you.  I would be so excited to run up and get you in the morning from your bed.  It was the same at night coming back from work.  I would do everything possible to be home to give you a bath and spend time with you before bedtime.  I want to look back at some of our fun memories together my Layoul.  You had such a great memory and would always say "Remember when…"  So Loulou, remember when you stood up in front of the toilet naked, looked at me and said, "This is how boys do pipi," and actually started peeing standing up trying to get it in the toilet?  Remember when you refused to take off your Peppa Pig sneakers before going to bed and insisted on sleeping in them?  Remember when you were not even 2 and we had Teta and Jeudo on Skype and you sat there singing non-stop for about 10 minutes jumping from one song to another like a jukebox?  Remember when this past summer in Spain you started arguing with your 7 year old cousin, Teymour, that you love so much, and you told him "Behave Teymour." and he replied "No, you behave Louli." and this went on back and forth until you then looked at him, pointed your finger at him and said, "Teymour you behave then I behave."  Remember when you would wake up very early every morning; and we had the monitor in our room so you would start by saying "Dadda," in a soft voice because you knew I would come and get you; and barely a couple of seconds would pass and if I was not yet in your room your voice would get very loud very quickly "Dadda, Dadda," and then I would run up and you would give me a big smile and twirl in your bed and say "Dadda, I was calling you." and then barely a second later you would say "Take me to Mama, I want Mama."; so I would take you to our bed hoping we could sleep a bit longer but to no avail because a couple of minutes of lying down and you would start screaming "Wake up Mama and Dadda it is time to wake up, the sunny is awake now, I want breakfast now." and you would not stop until we actually got up no matter what we tried!!  Remember when you would misbehave and I would try to be serious with you and tell you to look into my eyes so I can speak to you, you would look at me, squint your eyes tightly shut and smile at me?  Remember when you went out to the restaurant at night for dinner for the first time this summer.  It was the perfect day for me.  We had spent the day at sea together with your 3 cousins that you adore and adore you and then you put on your favourite dress having changed clothes 4 times that day and you had a big pizza and sat at the table with a handbag and reached into it and pulled a plastic pink mobile phone and said "I am going to send a text to Betty now."  Remember when in the Maldives in one spot it said "Do not Feed the Fish," and you insisted on doing it and I pointed to the sign and said the sign said you could not feed the fish; so you said "When the sign is gone I can feed the fish?"  I said, “Yes when the sign is gone you can feed the fish.”  So, you walked over to the sign and started pulling on it to take it off.  Remember when we were in the car together and we were waiting for Mama and I had gotten you a muffin that you were devouring, and I tried to take a piece and you refused.  Then you took the tiniest little crumb and extended your hand to me and said, "You want this one or this one?" teasing me with the muffin in the other hand.  This literally went on for about 10 minutes and we were both laughing so hard I honestly was over the moon just being with this funny, beautiful little girl full of personality that is my daughter.  I can go on forever as everything you did was special in my eyes.  But there are so many things I still wanted to do with you.  We were just starting out on our journey together.  You brought so much joy to our lives.  Whenever I was downbeat all I had to do was think of you to feel better.  And then I would see you and would just feel great.  You are the love of my life my Loulou.  I also know my Loulou that your Mama, or Simonii as you sometimes called her, was everything to you.  She brought you into this world and gave you all her love and adored you so much and never took you for granted and like me always felt so lucky to have a daughter like you.  And you returned that love so clearly my Loulou.  And then little Zeydie (as you nicknamed him) came along, and you showed what an amazing sister you would be.  You would not let us buy you a present when you were getting treatment without also getting one for Zeydie.  And little Zeydie's first word was Lyla, and now he goes around the house all day repeating your beautiful name.  I feel truly lucky to have had a daughter like you.  I don't know how I will go on without you, but I know that I have no choice.  If there is something after this life, then I so very much look forward to being with you there.  I don't want to think about the 5 months that you were ill so I would like us to watch this video together to remember the wonderful 2 years and 8 months that we have had together where in such a short time you were able to touch so many lives and have so many people fall head over heels in love with you.  My Layouli, I miss you so much and it hurts so badly to know that I cannot hold you and smother you with kisses. I love you so much, and Mama and Zeydie and Teta and Jeudo and Teymour and Sharif and Marwan and Uncle Samer and Uncle Karim and Grammy and Uncle Marcus and so many others love you so much my beautiful.  

Sleep well my love and I hope to see you again one day.

Your Dadda forever

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