LAILA
Her Life And Aplastic Anaemia
x-x-x-x-x
I listen for you….
For the sound of your voice
or touch of your hand
I miss our hugs
your breath on my check,
awake or asleep.
Your fingers used to touch
my face –
gentle and full of love,
caressing.
It all got taken away,
Slowly,
all that that was physical.
You lay in my arms
wounded
and I felt you leave –
My body aches for motherhood
my heart cries out with love
Yet, my soul is at peace
I know you are here,
with me always
Forever
x-x-x-x-x
I dedicate this to Aidan
Without whom I would never have had the courage to continue my walk.
He has been my reason.
My purpose.
His gentle smile, humour and soft soul have been my guiding light through the darkness.
I’ve been truly blessed to have birthed these glorious children
To Vaun, I can never thank you enough for sharing my journey. Words, they fail me at times but I wanted to honour you and our friendship by giving my daughter a part of you and calling her Laila Vaun. We never knew then that our path was going to be fraught with tempestuous waves but I’m truly grateful that you have been and are with me for the ride
Renee and Debbie, thank you for all the support, love, help, kindness, flasks of coffee, food baskets, books and companionship. I wouldn’t have survived those dark nights and long days. Having you in my life gives me strength.
David, who was a constant in my life without me having to ask. You moved in and took care of Aidan, woke me every morning at 5am with a cup of tea so that I could get to hospital before Lails woke, bought flowers, moved my home while I sat in an empty corridor while Laila underwent her first operation, took the only footage I have of her, all while you were trying to sort out your own life. Thank you.
Last but not least are a myriad of others, my brothers Geoff and Mike who phoned me constantly and were a source of comfort and an emotional outlet for me, the Cornells who accepted me into their lives so many years ago, our nanny Wendy who lost a daughter too, Christian, who will always be remembered as “Chicken”, Father Patrick for his soothing words and friendship, Neil for understanding and accepting Laila, to all the staff at Red Cross Children’s’ Hospital you are the unsung heroes, Karen for her hugs and healing touch and Heather for telling me to keep my sight down and only see and face each hurdle as it comes at me.
To Laila’s grandmother, Thelma, thank you for being a constant source of support to me since moving to Australia
If I haven’t mentioned you it’s not because I don’t remember or am not eternally grateful for you having been a part of Laila, Aidan and my life but there are too many to mention.
You will all know who you are and will remember those wonderful times we shared at HoutBay, Llundudno and Kirstenbosch. Bless you all.
The hardest thing I’ve had to do in my life has been to let my children go.
Making the decision to turn off my daughter’s machine that gently helped her to breathe and then to hold her in my arms until her body slowly came to rest, was the first
And now, it’s letting my son of 17 who has set foot on his path, go too.
I stand in front of the mirror and gaze at my pain through my tears and wonder how did my broken heart manage to shatter even more. My body hurts and trembles with a pounding head as I watch my invisible umbilical cord continue to unravel.
I pray to my angels to watch over and protect us as I cry silent tears to the belief that all is as it should be and that trust and faith in the circle of life will be my strength.
Laila Vaun Rip was born on Monday 9th January 1995 in Cape Town. The morning was crisp and still dark as we drove to the hospital. It was only when I’d settled into the hospital room that the sun rose and greeted the day of my daughter’s birth-day. Many months prior, after my amnio, I had been told that I was carrying a baby girl. I had been filled with joy and I knew then that she was Laila, after my mother, Leila.
Today, the memory of this tiny bundle, wrapped in a brown towel being laid upon my chest is as clear and emotion filled as if it was yesterday. I had gone into the hospital that morning to be induced for natural childbirth only to be told eight hours later that the baby was becoming distressed and an emergency Caesar was necessary. Vaun had to don on green surgery gear as I was whisked through the double doors into the awaiting arena of lights, medical staff and the big unknown.
I had managed to birth Aidan naturally and had so wanted to bring Laila into the world the same way. So, to be staring up at a green material screen and to only have Vaun in view was strange but I was filled with anticipation. The doctor asked Vaun if she was ready to take photos and then VV, who has always been so squeamish about blood, was wildly clicking away at her camera and telling me at the same time that she could see “her”
For a moment it was as if time and the world were still and quiet.
Then there she was, newly born, lying with me. My tiredness and anxiety ended when I gazed into Laila’s eyes and I felt my heart overflow with love as my physical body absorbed her and my soul connected with her newborn spirit.
She was so beautiful, so perfect, she was my gift from God.
Not long after, we were wheeled out into a nearby ward and Aidan was waiting to meet his sister. His huge smile and unbridled happiness made this journey all worthwhile.
I realise now looking back and examining my life that my journey has been filled with sadness. Losing my parents so young is sad, leaving Aidan’s dad is sad, bringing my child up in a “divorced” single parent home, is sad, Laila’s dad rejecting her at conception, is sad, Aidan losing his sister, is sad and Aplastic Anemia, the saddest.
We choose our life, our parents and our journey so, either we are incredibly strong, capable people or as I have been known to say “I must have been on drugs at the time of choice!” Why anyone would want to choose this life, I exclaim. Ah, for the experience I’m told.
Laila grew into a wonderful, happy child. Her warmth and delight at life was contagious and I often had to stop myself hugging her as I wanted to crush her into my body wishing she could be absorbed back into my body, so strong were my feelings of love for her at times.
Possibly my intuition had an inkling of what lay ahead and was trying to take as much from this experience as possible.
After the birth the three of us returned to Johannesburg and life found its balance. Aidan was a doting brother and Laila a delight to us. Days passed into months and suddenly Christmas was nearly upon us. I decided that we should go to Cape Town to enjoy a holiday at the sea. We piled into my car a few days before and headed south. As we drove towards Cape Town, Table Mountain rose majestically out of the morning mist and I realised that my roots were calling and it was time to move back home.
We found a cottage in NewlandsVillage, which was nestled under the shade of the mountain. Aidan started school at Rondebosch Boys and I was lucky enough for the universe to send me Wendy who cared for Laila whilst I was at work.
Once again days rolled into each other and time passed. Life was wonderful and full of the good things that one experiences living close to the sea. It’s a lifestyle that is difficult to beat.
Being able to meet friends at the beach after work for sundowners and a game of cricket, eating fish and chips out of newspaper on the wharf, sitting at the local pub watching the children building sandcastles whilst you sip a beer and witness a glorious sunset, enjoying the surfers catching their last wave in the twilight or seeing the harbour lights twinkle as the boats leave for their sunset cruises. Many a good glass of wine or champagne was drunk at a shared sunset picnic on the dunes.
It fills ones soul with hope of glorious days ahead.
Thursday the 9th May 1997 dawned bright and cheerful for Laila’s first day at St Joseph’s play school. I dropped her off on my way to work and left her playing quite happily with the other children. As she was now two I had decided that it would be good for her to spend a few mornings a week interacting with kids her age.
That evening after work we had dinner and then it was bath time before bed. I ran her bath and she played tireously with her bath toys. When I washed her hair I noticed a bruise behind her ear. On further inspection I found a few others, one on the back of her knee and on her forearm. My first thought was that I had to check with Wendy whether she was hitting her or if she was falling at school.
It was difficult confronting Wendy the next morning as she was horrified at the idea that I would think such a thing. She loved Laila as her own daughter and she felt that it was something on the” inside.”
When I dropped Lails at school later that morning I asked her teacher to keep an eye on her to see if she was hurting herself. Upon fetching her, her teacher told me that nothing untoward had happened. I called my paediatrician, Dr Feldman, that afternoon but he was too booked up to fit us in and I was told I’d have to wait till the end of the following week for a consultation.
An unknown always causes concern but at this point there was nothing I could do except wait.
Sunday the 12th May was Mother’s Day and we had been invited to celebrate it with Vaun’s family at her brother’s house. Her brother, Jonathan is a doctor and Vaun had suggested that I ask him to have a look at her bruising while we were all together. He examined her and made a call to my paediatrician that afternoon who told Jonathan to send us to have blood tests done early the following morning. The paediatrician gave Jonathan a list of tests I was to request that get done and I was to wait for the results and to take them to him straight away, as he would fit us in.
I’ll never forget sitting in the chair in Dr Feldman’s room, Laila playing happily at my feet. The sun was shining outside and life was normal. In front of me sat a man with a sad look in his eye and I saw uncertainty. It’s the look that people get when they don’t know what to say. So, he said little and made a call. After putting the phone down he turned to me, battling to find the right words, and said that he was not able to determine what was wrong with Laila but that there appeared to be a serious problem and that he had made an appointment for us to see an Oncologist at Red Cross Children’s Hospital the following morning at 9am.
The following morning Vaun came to fetch us for our appointment. On the way there with Laila playing happily in the back safely strapped into Nica’s car seat, VV and I talked at length about what we would find and how we were both feeling as we were heading for the Cancer Unit – G1 – at the Red Cross Children’s Hospital.
Sitting here writing is like stepping through time. I can feel the anxiety again that I felt as we walked through the swing doors into G1 to be greeted by a sea of faces in the waiting area, as it was Clinic day. Here we stood with a beautiful blonde two year old surrounded by so many sick children with a range of “blood” illnesses. My heart was sore but there was little reality as Laila was still to be diagnosed.
I think most mothers confronted with this situation feel apprehension but the hope we live with carries us forward and give us undefined strength. It’s also having to remain calm and composed so that the children don’t feel threatened by the fear and emotion that silently waits to engulf us, should we allow it.
I look back now and realise that throughout Laila’s illness I maintained steadfast in my belief that nothing else mattered but Laila, her health and happiness.
Dr Hartley called us in and introduced herself to us, she was head of G1 and would be looking after Lails. At this point the results weren’t conclusive. Her blood cell levels were low and the Doctor would have to do a lumbar puncture. This meant inserting a sturdy needle into the spine, to remove a small sample of bone marrow to test under a microscope. As with Cancer and Aplastic Anemia the bone marrow biopsy shows a great reduction in the number of cells in the bone marrow.
A fundamental difference between the two illnesses is that with Aplastic Anemia the bone marrow fails to produce blood cells.
We had to take Laila to another building where the first of many thumb pricks was done so that her blood could be tested and her blood counts given while we waited. She was pale and full of bruising and she needed to have a transfusion, both of blood and platelets, before they could do the test.
Vaun and I sat with her in the outpatients ward as she was given her pre-med and transfusion. I then carried Lails into Nurse Helen’s “room”, she was still partly awake and would have to stay this way whilst they did the procedure plus lie very still ! Helen is a fabulous person.
My hurdles were starting to appear rapidly. This new one was to leave Lails in the room with the doctor and Helen, then to have to stand outside and listen to her talking and crying with pain as they removed her marrow even though sedated. My heart ached, as this was Lails’ introduction to her life at G1. The staff would soon get to know – her courage and chatter, her questions and tears, her laughter and wisdom.
The next was sitting beside her for the afternoon waiting for her to awaken from the effects of the anaesthetic in an unknown environment. She slept all afternoon and VV and I were so happy to see Debbie arrive laden with coffee and food. We were famished having spent all day there.
What I thought was a huge hurdle was receiving the results but this turned out to be another in a long line. Dr Hartley said that the good news was that Laila didn’t have cancer but they still were not sure what the problem was and that Laila would have to undergo the procedure again. I wanted to cry for my beautiful child who was having to endure so much pain.
But now it was late and we all needed to go home. This was the start of a long journey that would test my faith, courage and love.
Nearly a week had passed before we went back to G1. It was clinic day again but by now I had got used to seeing kids without hair, walking around carrying their drips, some idly playing with toys or being pushed in wheelchairs and somehow it wasn’t so shocking anymore. Laila had to have another finger prick and we met with Dr Hartley to check the results and to book her second lumbar puncture for Monday 26th
In the middle of the night of Friday 23rd Laila woke me to say that her mouth was “poofy”. She had started bleeding through her gums and as the blood clots formed Lails would pull them out. I felt so helpless, lying there next to her, not understanding her problem, her pain and unsure of what to do.
I had been warned that as her blood levels were so bad that after a blood transfusion she would be well for awhile, maybe as long as three weeks, then as her levels drop, bleeding can occur, usually through sensitive areas such as her gums. Laila was anaemic and would get very pale but she couldn’t take iron as the transfusions create an imbalance and excess iron in her system could kill her.
So, there I lay next to my bleeding daughter who stared at me with huge blue eyes asking me to help her.
I had also been told that if her temperature rose above 38’ I was to take her to hospital. G1 operated on a 24-hour basis. I called in and spoke to the Intern who said I was to bring her in and have her paged when we got there.
Going to hospital took patience. First I had to wake Aidan and while he was struggling to open his eyes I’d have to pack a bag. Clothes, toothbrush, bottle, dummies and towards the end disposables too. Laila had been out of nappies for a while but after spending time in a hospital bed it became easier for her to go back into nappies. Then with my heart racing due to frustration, terrified at what I was dealing with and lonely as I lived on my own and had no partner support, I’d bundle the kids into the car and strap them in. Have a quick check to make sure that A had packed a bag too and had his duvet and then head off to the hospital as fast as possible through the empty, dark and quiet streets of Cape Town at 3am.
The nursing staff at G1 paged the Doctor on duty and we waited. A and Lails found some toys to amuse themselves and time passed.
I always prayed that Helen would be on duty to take blood or to give a transfusion as she and Lails had bonded easily. Laila always behaved well for Helen, most probably because Helen always managed to find a vein first time without too much probing, and while Helen was taking blood she would ask Helen if she’d “finished.” We needed blood and because of her high temperature Lails was admitted. It was our first stay in hospital. There were two cots in the ward so I pushed the two together and slept in the one next to her. Aidan took his duvet and went to lie down in the outpatients’ ward.
Laila and I spent the weekend in hospital. Each ward has its own TV which was a blessing. We bought videos from home and all the kids in G1 could tune in and enjoy the movies. I spent all my time with her that weekend. Vaun bought me clothes and the gang popped in and out bringing food and coffee. Monday morning dawned and it was time to get the next bone marrow sample. Fortunately I was able to take us home on Monday night. It was fabulous to be at home and to feel normal.
On Thursday 29th May Vaun drove Laila and I back to the hospital for our diagnosis. We sat together facing Dr Hartley and listened to her telling us that Laila had contracted an illness that only affects about one in a million people as it is a rare but extremely serious disorder. Aplastic Anemia. That with children it only has a success rate of 50% but in adults and teenagers the success rate is 75% and no-one is clear why or how it happens as there are not enough cases of it each year with which to carry out ongoing studies.
The central portion of our bones is filled with a spongy red tissue that we call bone marrow. It is believed that the bone marrow is our cell-producing factory.
Red cells carry oxygen from our lungs to other areas of the body, white cells fight infection and platelets control bleeding by forming blood clots in areas of injury.
Our bodies need a continuous supply of blood cells throughout our lives as each cell has a finite life span once it leaves the marrow and enters the blood.
Red cells approximately 120 days, platelets 6 to 21 days and white cells about 1 day.
It is believed that failure of the bone marrow cell production can result from damage to the stem cells or to the environment.
Aplastic Anemia has been “linked” to radiation, environmental toxins, insecticides, benzene based compounds, airplane glue and drugs such as chloramphenicol.
A book I read called “Spontaneous Healing “refers to an incident on an island where crop spraying was carried out and directly after a few cases of Aplastic were reported. It’s been suggested that it could be caused from eating an apple that has been crop sprayed and that due to the individual’s gene make up the body rejects it and the body shuts down.
To date the exact cause of the disease in over half the cases is unknown, one can only surmise.
Dr Hartley continued to explain to us that as Laila’s body wasn’t producing blood she would have to have regular blood transfusions to keep her alive while we tried various dugs to “ kick start “ her body. Unfortunately with blood transfusions only red cells and platelets get transfused. As white cells only live for a day they cannot be transfused and this is a concern for infection and as the transfused platelet level drops, due to their short lifespan, bleeding occurs.
She suggested that Laila start on drug therapy as one of the theories about Aplastic Anemia is that the immune system is fighting itself which in turn is interfering with the production of blood cells. By suppressing the immune system it might allow the bone marrow to start producing again.
Similar to a transplant patient who needs the body to accept a new organ and allow it to function in place of the removed one
A last resort would be a bone marrow transplant but that would mean having to go to Sydney, Australia and search for a donor match. In the meantime it was to be blood and platelet transfusions, drugs, faith and to try to continue living as normally as possible. Laila was to be kept away from large crowds such as shopping malls as her immune system was nil and we couldn’t risk exposing her to unnecessary germs.
And so began her treatment on Saturday 31st May, a daily dose of horrible, thick, foul tasting Cyclosporin. Some days Laila would swallow easily, others she had to be coaxed to take it and on a few days swallowing it made her vomit.
The next thing I did was to surf the internet to try and find out as much as I could on the disease, as I hadn’t absorbed all the information that Dr Hartley had tried to tell me. Also, that information had been edited and I needed to understand more fully. Ignorance may be bliss but when confronted with a 50% recovery option I desperately wanted to know what lay before me.
I found the website of the Aplastic Anemia Foundation of America and immediately joined and became the contact person for the disease in Africa. It is a fabulous organisation and they send out newsletters keeping you up to date on Medical news, research studies, conferences and sharing information. Should you wish to visit their website go to www.aamds.org , all their newsletters from 1997 onward are on this site.
Laila looked well and few people believed she was extremely ill. We went to the beach, played in the sand, visited friends and allowed each day to just happen.
On June 4th Laila’s left ear began to bleed. I felt scared as this was another obstacle I hadn’t realised that I would have to face. We went off to the RedCrossHospital but the E&T specialist wouldn’t look at her until she had a platelet transfusion as he could damage her ear whilst examining her. The hospital had platelets available so we took her for her transfusion. Then it was back to the E&T Doctor who examined her and found that she had a middle ear infection. As he couldn’t risk causing bleeding he suggested that the best fix would be to wash her ear. This is done by injecting water into the ear. I had to hold Laila down as this procedure nearly drove her dilly with the pain. It’s an awful thing to witness your child writhing and crying with pain and all I could do was to hold her down until it was over and then to take her in my arms and comfort her. She would just put her arms around my neck and hold me. Holding her was a comfort to me and helped release some of my pain.
We had to attend clinic once a week, usually on a Thursday so that Laila could have a thumb prick, collect her sucker and have an examination with Dr Hartley. These weekly thumb pricks gave us an indication of where her blood levels were and also gave me warning of how much time we had before bleeding, bruising and another blood transfusion.
Monday 21st June her gums began to bleed. Laila’s thumb prick showed that she was short of platelets. Bleeding due to low platelets is treated as an acute medical emergency and is treated with a platelet transfusion to prevent a fatal hemorrhage. Anemia on the other hand is treated with red cell transfusions, which also helps combat fatigue and shortness of breath. Platelets are collected from donors and usually takes about three hours. This is done by taking blood from a vein in the donor’s arm, passing it through a blood-separating machine and then the separated blood is returned to the donor. The platelets that are removed are then given to the patient. The donor’s body replaces the platelets within a day or two.
Apparently platelets carry “tissue type markers” that are unique for each person. The body can learn to recognise foreign platelets and in turn start producing antibodies that then destroy the transfused platelets. Aplastic Anemia patients develop a need for matched platelets. Meaning that the “tissue type markers” of the donor needs to resemble the patient’s markers. To support a small child in matched platelets over a year may require twenty matched donors.
Sheelagh, her husband Marco and daughter Nadia came to visit us in Cape Town for a holiday. I was really pleased to see them, as Sheelagh is Tim’s sister and Laila’s aunt. Although I had informed everyone of Laila’s diagnosis I never believed that Tim accepted the seriousness of his daughter’s illness or understood it. . So, for Sheelagh to come all that way to visit was a blessing. Her mom had knitted Lails the most fabulous jerseys and they spoilt her rotten. It was so good to have some family close by again even if only for such a short time.
By Tuesday 19 July we were back in hospital, this time for a full transfusion.
Days fell into each other and I was consumed with work, school for Aidan and happy days for Laila, playing in the park with her friend, Georgina, or at her house. Their nannies were happily spending time together while the children played. Georgina and Laila became best friends and as we lived in the same street it was fantastic as they saw each other almost daily.
It was so divine to come home from work and find Lails waiting for me on the pavement with Wendy or hanging on the security gate shouting at me that I’d come home. Laughing and running around.
Wendy spoilt her as she would put Laila on her back when she was tired, wrapped in place with a towel, and lull her to sleep. If I dropped in during the day I could find the two of them doing housework as I had bought Lails a bright pink kid’s feather duster and mop, which she used enthusiastically.
We attended a Monday morning clinic on Monday 7th July that seemed fine but by 7o’clock that evening I had to take her back to hospital as she was running a high temperature. Dr Paddy Hartley examined her and said that she would have to stay in until they got her temperature back to normal. She felt it best that I slept at home as she said that his was the beginning of a long haul and I had to keep some semblance of normality for my son
Actually I think that the third hardest thing I’ve had to do was to put Laila to sleep knowing that I was leaving and then to physically walk out of my daughter’s hospital room. My heart felt ripped to shreds and I can remember that terrified feeling that I wouldn’t be there if something happened. Also, that she might wake
in the night in a strange environment, not in my bed, and want me and find herself alone.
I couldn’t go home. Aidan was with his dad so Vaun had invited me to sleep at her house so that I wouldn’t be alone. It was a blessing. I hardly slept that evening and was up before the dawn so that I could be there when she woke up. I took with me her crocheted blanket, her doll and a pillow with a bright pillowcase. Walking through the swing doors so early was quite surreal. Night shift were doing final checks before going home. The nurse at reception smiled at me and said that Laila had been fine. They had woken her during the night to have her temperature taken and to check her drip. She had asked for a bottle and dummy and had gone back to sleep
Because white cells can’t be transfused the control of infection is very important and prompt, appropriate intravenous antibiotic therapy is required as soon as a fever or other signs of infection appear.
I sat down in the chair next to the bed and after a few moments she turned to me and smiled and said “mommy you’re here “My heart dissolved and all I could do was to wrap my arms around her and hold her, smothering her face with kisses. I put her blanket on the bed and she put her “baby” under the blankets with her. The kitchen was next to her room and I bought some Milo and Rooibos tea with me so that I could make bottles for Lails.
The day shift were starting to arrive and the quietness of the night was shattered with the sound of trolleys, cups of tea being made and the chatter of the nurses as they discussed the nights events. I am in awe of nurses. They come to work every day surrounded by sickness and yet they smile, are caring and give of themselves so easily. My god where would we be without them. The TV went on and the kids were enthralled with early morning children’s programmes.
The breakfast trolleys came around and after them followed the Doctors doing their morning rounds. I had arranged with Wendy that she come straight to the hospital at 8am so that I could go to work. It was divine having Wendy at G1. There were a huge amount of kids who didn’t understand English and as their parents couldn’t afford to be there with them they were all alone. In a strange place, sick, having chemotherapy, losing their hair and not understanding what was happening to them, as Wendy spoke Xhosa she was able to translate for some of the children and she became a wonderful asset to G1. Laila adored Wendy so she didn’t mind too much when I had to go.
I tried to get back to the hospital about 4pm to let Wendy go and also so that I could spend some time with Lails. Hospitals eat early as the nursing staff want to be finished their chores before shift change at 7pm. G1 is a separate block to the rest of the hospital and entirely self funded. Visitors were allowed in mostly anytime and there were no restrictions as to how many. Laila had to stay in until her temperature stabilised and blood had been ordered for another transfusion the following morning, Wednesday. Tucked Laila up with her doll, bottle and dummy and dimmed the lights. I sat with her until she dropped off to sleep before creeping out.
Back at G1 at 5.30am to kiss her good morning, sat in on the Doctors’ rounds and got Wendy settled before racing off to work. Laila was given her bloods and her temperature started to stabilise. Paddy said that they were going to keep Laila in for another night so that they could be sure before sending her home. Debbie had invited me to sleep over at their house, which I did.
My mornings had settled into a hospital pattern and my working hours although altered due to the nature of Laila’s illness were not affected, as so much of my work could be done by mobile phone. I became a walking office with my phone permanently stuck to my ear ! The support I received from my work colleagues and friends was fantastic and overwhelming
Thursday after work I walked excitedly into the ward to be told that we could go home. That was the best gift, taking my baby home. We bathed at home and snuggled on the couch with A before bed. Having Laila back in my bed with her head on my pillow, her arm holding me around my neck was the nicest feeling.
In the mornings I’d creep out of bed so that I wouldn’t wake her and run my bath. No sooner had I lain down beneath the water that she would be standing there gazing down at me. Cloth in hand, ready to wash and play. I’d push up her sleeves and she would happily keep me company whilst I bathed. Other times she would want to get in and bath with me. Then I’d dress Lails and I’d get the kids breakfast, moan at Aidan to get up and get ready for school, then sit with Laila while we waited for Wendy before dashing off to work, dropping A at school on my way.
Renee’s twins, Storm and Megan and Vaun’s daughter Nica & Georgina became the nucleus of Laila’s playgroup. Because we had to be careful about where I took her we spent most of our time at each others houses or meeting at Kirstenbosch Botanical gardens for picnics on the lawn or lying on the hill on a Sunday evening listening to the sunset concerts. Otherwise it was off to HoutBay for a romp on the dunes or fish and chips at the edge of the harbour.
Monday the 14th Laila started vomiting so we went into hospital for a check up but it was nothing untoward. A few weeks followed with our regular weekly check-ups and as the weeks passed about three in total, one is lulled into a false sense of security that every thing is all right. Then slowly, Laila’s lip picking intensified, her lips began to go red from intermittent bleeding, her pallor changed and became very pale, tiny purple pin prick spots appeared on her skin, bruising and finally bleeding from the gums.
And so on Friday the 25th we found ourselves back at G1 for another full blood transfusion at outpatients.
In the midst of all of this Aidan had had school holidays and had just resumed the third term. He was having to deal with so much and yet he took it in his stride and lavished Laila with his attention. He adored her and treated her with such patience, love and understanding. It was magical to watch the two of them. She was also very patient with him and when he used to dress her up she would go along with it and laugh at him and herself.
Laila would dance around the lounge holding Guinness, our cat, in her arms or cover him in her blanket and wrap him up. Silly cat would just lie there and succumb. Or she and A would watch videos, Laila had her favourite wingback chair that she would sit in and share it with Guinness while A took the couch with Snuffles, our other cat, perched on the armrest.
On Sunday 4th August Laila began to bleed through her nose and gums at 4am and so the three of us packed our bags and we went straight into G1. The nurse on duty paged the Doctor who checked Lails into hospital. Blood and platelets were ordered but they wouldn’t be available until later that morning. Aidan went to lie down in outpatients and I sat with her in the ward while she dozed.
The Doctors did their early morning round, by now they were all getting to know Laila and she was far more at ease in hospital. The nursing staff always tried to put Laila into the same room so that she would feel familiar. Unfortunately it wasn’t always possible. Helen put her drip in for her and arranged her blood transfusion as soon as the bloods were delivered, checking on her to make sure that the transfusion was going well.
I felt sick in my stomach, as suddenly I was having to leave Laila in hospital, again. All I wanted was to have her at home. So, it was back to early mornings and late nights, arranging for Wendy to be at the hospital during the day while I went to work, organising Aidan and school, getting him lifts to and from hospital and making sure he was eating and doing homework. Renee’s twin David, who was recently separated, would move in to my house and help me run my life and Aidan. Alternatively A’s dad would also collect him and have him for a few days at a time and they would drop in at the hospital on their way home.
When I got to hospital on Wednesday evening after work I was told that Laila was well enough to come home. God that was a wonderful sound. Wendy had her all dressed and ready and Laila was so excited that she was “going home” She looked so gorgeous in her own clothes instead of her blue hospital gown with her dirty blonde hair piled on top of her head in a ponytail. Home and a bath.
I had decided to try alternative health therapies for Laila as it was exceeding difficult trying to get her to eat immune boosting foods. She definitely wasn’t a fan of beetroot and fresh paw-paw but what was great was that I was able to buy paw-paw juice, which she would happily drink in her bottle. Off we went for Body Stress Release. This had to be done with Lails lying on my stomach but she was patient and allowed us to do what was necessary.
7.00am on Friday 15th saw us back in hospital for a blood transfusion. Fortunately that was all she needed and we were out of hospital at 11am. It was such a pleasure walking in and out on the same day let alone the same morning. The sun was shining on a glorious day. If only all her blood transfusions could be so easy and so quick.
It felt as though life was easing into a regular pattern, check ups, bloods, check ups etc when suddenly the bubble of complacency burst, as it does.
Laila started running a high temperature on Wednesday the 27th and had to be admitted to hospital. Back on the drip and monitored to ensure that what we were dealing with was nothing more than a high temp. Finally on Saturday morning, 30th August the Doctor on duty said I could take Lails home.
Home, what bliss.
Putting Laila to sleep in my bed I would lie down next to her with our faces on the pillow facing each other, I would hold her one hand and she would fling her other arm across the back of my neck and gaze into my eyes. We would whisper to each other, sometimes I’d sing her a song whilst she drifted off to sleep. Then I’d quietly move off the bed. Looking down at her I thought back to when she was sixteen months and was giving me endless grief because she would not go to sleep on her own. She liked me to stay with her until she fell asleep.
The pediatrician suggested at the time that I put a big latch on Aidan’s door when he was away, one that was spaced far enough so that she could see out of the room but couldn’t get out. Then, I was to put her to bed in Aidan’s bed, kiss her goodnight, put out the light and put the latch on and remove myself to the lounge. This I did.
The first night she did exactly as predicted. Got out of bed and stood at the door calling me. I had been instructed to go back in, put her back in bed, give her a dummy and a kiss and leave again. This time when she got out of bed she was angry with me and started calling, then shouting and finally crying. Only this time she also removed her clothes and night nappy in her rage.
So, back I went and picked her up, hugged and kissed her. Put on a new nappy and babygrow and gave her a dummy. Tucked her up in bed and said goodnight and left the room again latching the door. Not a peep, all was quiet.
It took two nights of this and voila it was done.
Now more than a year later I’m wondering why I had bothered as we were back to where we had started and I wouldn’t have it any other way. Going to bed at night I would say a prayer thanking God and the angels for Laila and Aidan and for being able to have Lails at home. I never thought to ask for a miracle as I truly believed that we would recover from this and move from strength to strength.
Laila and I are fighters and I felt that together we would get through it.
September began the same way as August, Friday 5th was a check up, so was the 12th and then it was Wednesday the 17th and we were back in hospital with a temp until Friday afternoon.
Friday 26th a check up, 2nd Oct another one then Wednesday 8th had us admitted until 11am on the 13th. This was a long haul. I had begun to feel a sense of desperation in that I couldn’t make anything “right”. We had to rely on the Doctors and nurses around us and even they were scrambling in the dark.
It was necessary to allow the Cyclosporine time to start working and the longer that Laila had to swallow it, the harder it was getting to coax her to take it. I hated getting cross with her when she shook her blonde mop and said no or, when after begging her to swallow she would projectile it back out, and just cry.
Getting her to eat was also becoming difficult. She loved her bottle and consumed vast amounts of tea, juice and milo.
TO BE CONTINUED….
My life is a mere echo of a journey many others have traveled and experienced. To me, it’s been an acceptance and a coming to terms of my path as it unfolds
Lying in bed when I was sixteen, enveloped in sadness and racked with the pain of my father’s sudden death, I experienced an incredible sight. I opened my eyes and saw my father standing before me, slightly above the edge of the bed. He smiled and told me that all was as it should be and he wanted me to know that he was fine and at peace
Looking back, I know that seeing my father the night of his passing has enriched my life by giving me the foundation of my faith, which has remained with me and given me the strength to face adversity and loss through my life
A road of a lifetime
I talk so easily of you, of us –
of the battle to live through each day.
The words roll off my tongue, smooth
but deep
The pain lies beneath, lurking.
Quietly waiting for its moment
to let loose, unabated
all encompassing.
The sadness consumes my being
Its edges tainted with longing and grief
A hollow echo to the pain.
So, tears fall
coursing down my cheeks,
tiny rivulets of salty drops
meandering along a path of their own.
Welling up in my ears,
collecting in my collar
under my nose,
forgotten –
Whilst my body is racked with sobs
heart wrenching
all consuming.
My head has been immersed
In the cradle of my hands
heavy and tired.
Why – silently reverberates in my head
humming softly within.
My soul despairs
My head understands
My heart aches dully
My inner self calms
My consciousness connects
I lift my eyes over my hands
sight regains sanity
The body slows and settles
The tears dry
The only evidence of sorrow
lies wet in my hands
In the redness of my eyes
and in the heaviness of my breath
And so I stand
straight and weary
taking another firm step
along the road of life.