Children and their families all have a unique story to tell made up of their own particular circumstances and experiences and their responses to these.
These stories need to be told and the ICPCN wishes to build up a collection of such narratives from around the world. The hospice environment, services offered and access to resources may alter from country to country, but children are children wherever they are and the love, the anguish, the hope, the moments of joy and the depths of sorrow that a parent feels when a child is diagnosed with a life-limiting illness is a universal language.
Our wish is that these stories about real children and the hospices who care for them will not only put a “human face” to the work that is done by children’s palliative care services worldwide, but may also allay fears and bring some comfort and hope to families out there who feel they are alone.
We are most grateful to the parents and other loved ones who have so bravely shared their stories with us.
Victoria’s Story (Ireland)
Painting a picture
Life’s brush was swished across our canvas and a masterpiece was created – She was Victoria, beautiful and perfect. We were a family. The brush painted on and our lives were colourful and bright. Victoria went everywhere with me and our dogs and she was the whole of her daddy’s world. Slowly greyish tints appeared, Victoria had bad periods of time where she was hard to settle and where she fed strangely. Sometimes she was very peaceful, but other times, I was worried and I was not sure why.
Enough is enough
Three month checks came, Victoria cried constantly. Life was very dark grey, but no one saw it other than us – Victoria was still beautiful when she smiled. She reached for toys and was bright eyed. A dark brushstroke hit the canvas – Victoria took a turn for the worst and I had to admit I couldn’t cope. She was waking at night and seemed to be in pain somehow. We just had to hold her constantly in our arms. Then Victoria refused her bottle totally, as if to say, “enough is enough, help me!” Neither kind nurses nor consultants could ease her pain. A tube gave her feed and her symptoms got worse, rather than better. She was transferred to one of the national children’s hospitals and for Victoria every day was a battle to tell us, how to help her. She had a power over all and tested the best of medical minds and medicines.
A large hole was punched in the canvas, as we lost our Princess slowly. Doctors got the diagnosis Victoria knew was coming from when she was born. She had an incurable, untreatable condition that was degenerative. Her nerves were not covered, she was in pain like we told everyone for months.
We are told that our baby would die.
Knowing what it was, didn’t help her or us. A cocktail of drugs was needed now to keep her comfortable. We depended on her nurses and doctors constantly and she received the best possible care – we stayed with her all the time. Our canvas felt empty. We tried to patch it which was impossible as one hole appeared as soon as another was patched.
Then when we thought the picture couldn’t get any more twisted … we were encouraged to take Victoria home to Donegal. We needed to make memories? What? Memories of what?
We loved our home but we did not need it. Victoria needed medical help and her condition changed constantly. I knew in my heart nothing could help her at home. We tried and failed to take her home. Victoria made us return her to Dublin and from there, lead us to her haven and to the only place in the entire country that could help her and us – Laura Lynn, Ireland’s first and only children’s hospice.
When we drove her in the gates days later, we knew that our Victoria would die in this special place. We just didn’t know how special our time there would be. To keep our baby free from pain, was to keep her canvas as stable as possible. Days we managed it, times during the day we hope we added colour to it. Activities like Teddy bears picnics, stories, music and song patched the holes that appeared. We were not alone, we had professional guidance and help. We added to the whole tapestry of life with Victoria there. Her extended family visited. She was held, kissed and photographed and really lovely memories were made. Her special auntie Aishling visited every day. Her life canvas was cherished and although she was mostly unaware, she enriched the canvases of all those around her. We had time to acknowledge and share our journey and to accept its end, as best we could.
Victoria died at exactly nine months old after three short months in her special home. The hell of losing our world slowly did not seem as lonely a road. We felt supported. Our picture was as bright and pretty as possible and Victoria’s canvas can live on. We feel as Victoria lived and breathed in LauraLynn her heavy damaged canvas changed to wings slowly. Daily she lay in her protected chrysalis and her wings became large and colourful. Victoria broke free from her chrysalis. Victoria became our Special Butterfly.
LauraLynn helped our baby Victoria to be become a great colourful butterfly at peace that will never die. All fragile butterflies that need LauraLynn and children’s hospice, should be able to be there. They should be protected and safe there, until their wings are strong enough – until they are ready to fly, fly higher than us all.
We love and miss you always Victoria. Xx
Victoria’s story was shared with us by Victoria’s mother, Sharon Thompson
Sophie’s Story (China)
“In life you meet millions of people, and none of them really touch or affect you. Once in a lifetime you meet one person, and your life is changed forever.”
For me, Sophie is one of these people.
The birth of a child should be a joyous occasion, a memorable day where parents make wishes and create hopes for the future of their child. They hope that their child will grow up healthy, and they imagine feeling proud as they see their children take their first steps, celebrate their first birthday or hold their hand on their first day of school. Sadly, for our children in Butterfly Children’s Hospices, their parents do not get to celebrate all of these precious moments. The children who are admitted to the Butterfly Home have all been diagnosed with devastating illnesses, but underneath this ‘diagnosis’ they are suffering from something much worse. Their families have abandoned these children and their hearts are breaking; the newborn babies are crying and aching to be held by their mother and the older children wishing for a cuddle by their father. Some are abandoned because of their illness, others because of the expense of the medical treatment or the parents’ fear the unknown including death. Through the work of Butterfly Children’s Hospices, our dream is to help families in the community provide support and information and give paediatric palliative care to these children in their homes to prevent families’ abandoning their precious sick children.
Working in a palliative care setting, most people expect our Butterfly Homes to be full of children with cancer. The truth is we had never had a Butterfly suffering from cancer before. Most of these children die in hospital, others die at home having been told there is nothing more which can be done for them in hospital, and sadly some are abandoned. Sophie was one of these children, suffering from cancer, whose parents had made the heartbreaking decision to abandon her. Now she was left facing her final days all alone and scared in the orphanage.
Sophie arrives at BCH
Sophie was nine months old when she arrived at the Butterfly Home. She was gorgeous, perfect in every way from her 10 little fingers and her 10 little toes to her cute button nose. Behind her bright smile, she was hiding a malignant tumour in her oral cavity. Sadly, by the time Sophie had come to the Butterfly Home, all hope had vanished. Her tumour had spread from her mouth and she already had bone marrow metastatic tumours. Surgery was unsuccessful to remove the cancer and her tiny body could no longer cope with chemotherapy. Sophie needed loving palliative care, and she was in the right place. At the Butterfly Home we strive to put life and enjoyment into each day a child spends with us, irrespective of their diagnosis. Sophie was such a brave girl, full of light and strength. She fought until the very end, never giving up.
She spent six happy weeks in the Butterfly Home, smiling, laughing, playing, being cuddled, watching everything around her. Her pain was being well controlled, she was bright and active and particularly loved eating, always smiling during meal times. Most importantly, she was happy.
Early one afternoon, six weeks after she arrived, Sophie started to show signs of deterioration. Her tumour was swelling rapidly, taking up over half of her oral cavity, leaving her unable to eat, causing difficulty breathing and general discomfort. She just wanted to be held, comforted and loved. She had a tube inserted for feeding and to give medications. I tenderly stroked her face, held her close and sang to her, whilst increasing her pain medication. For the next two nights I cuddled her. She was unsettled at first, but slowly we increased her pain medication and to make her comfortable. She was unable to smile by this stage, but her sparkle remained in her eyes. Her nannies hearts’ were breaking that Sophie was not smiling anymore, but I reassured them she was smiling on the inside. We would spend our days holding Sophie close, singing to her, playing with her, watching her sleep and monitoring her condition. The visual appearance was getting worse with the tumour coming further and further out of her mouth, but to us she was still beautiful. The courage and bravery she showed is remarkable. Even though she was going through so much, she never lost her sunny disposition.
During this time, she wouldn’t settle in her cot, so instead spent the nights cuddled in the treatment room. As the sun set on Friday evening, again she snuggled in close to me. That night there was something different about her, she looked relaxed and comfortable. Her pain was well controlled, her right eye was open, the left one was swollen shut, her gaze fixed firmly on me and her little twinkle was still in her eyes. As I watched her settle for the night, my eyes were gently closing.
Shortly afterwards, I could feel her hand tangled in my hair, gently wanting me to wake up. Her big brown eyes were staring at me like a puppy dog; this girl was not tired, she did not want to sleep. So we played, and we listened to Westlife and Michael Buble music. All the time she was curled up on my chest. This little girl had wisdom beyond her years. I believe she knew what was going to happen. It seems fitting that in Greek her name means ‘wisdom’. She was truly peaceful, completely settled, calm and unafraid. Slowly she was drifting in and out of sleep. About an hour later, Sophie gently slipped away. Her nurses and nannies, people who had opened their hearts to her and genuinely loved her, each kissed her goodbye. There were tears of sadness for the loss of the Sophie, sadness that her parents did not get to spend Sophie’s last few special weeks with her, but also tears of happiness, that Sophie is no longer suffering, that her last few days were spent comfortably, happy and in a loving environment. Sophie has now found her wings and is free to fly like a butterfly. Sophie is a real inspiration for me, she is a true fighter, someone who overcame so much and fought right up until the end. She never let her disease get in the way of her enjoying life, she smiled, she cooed, she cried, just like any normal child. My only wish is that her parents could have had the support of our staff and been the ones holding her close in her last few hours. Then they could have seen what a truly inspirational little girl they have, and seen the true sparkle she had right up until the very end. Nevertheless, I felt privileged to have been there for her when she needed someone.
Sophie’s story was shared with us by Katie Hill, Head Nurse, BCH
Nontokozo’s story (Swaziland)
In April 2014, The Rocking Horse Project – a paediatric palliative care programme in Swaziland – was contacted by a local doctor and asked if we could assist with a very sick young girl and her bedridden mother who were living alone. The sister at the nearby clinic in a very rural area of the country had alerted the doctor to the situation and the doctor needed the patients to be brought closer to town so that their treatment could be closely monitored.
The Rocking Horse Project arranged that they be admitted to one of their units at Hope House – a hospice in Manzini – for respite care, and the doctor kindly paid for their transport
After Nontokozo had recovered, the director of The Rocking Horse Project, Denise Mortlock, asked her to write her story and this is what she had to say:
Me and my mom
During March 2012, when I was 13 years old, my mom got seriously sick. I was in Grade 5. There was a lady who looked after my mother for five months. Then she said that I should take over her work.
So I began to care for my mother. Then I started not doing well at school and my head teacher asked me to tell her if there is no food at home but this was not easy for me to do.
Every day after school I would come home and cook for my mom and change her disposable nappies. When there were no nappies, I would walk to the clinic or hospital and ask if there were more.
The pastor at the local church gave us food and transport money to go to the clinic and collect our medicine. When my mother got money, she asked me to buy vegetable seeds. After school I made a vegetable patch and we grew radishes, lettuce and spinach so I could make her salad.
A kind neighbour also told me to come to her house after school every day and she would give me lunch and fruit that she had grown to take home for my mom and me. My life became easier and I prayed and thanked God for all of this.
When I got too sick to look after my mom, the nurses from a local clinic came to our home and said that people from The Rocking Horse Project would like to offer us a place to stay in Manzini where there would be nurses to help my mom and me and the doctor would be able to see us every day.
My mom and I are so happy at Hope House and we are much, much better now. My mom also goes for physiotherapy twice a week and she is now able to sit in a wheelchair.
I am looking forward to going back home so that I can start school again. It is good to know that I have the telephone number of The Rocking Horse Project and they will help me if we get sick again.
Nontokozo’s story was shared with us by Denise Mortlock
Lexie’s Story (UK)
This is the story of my beautiful grand-daughter Lexie – nicknamed Loolie who is now an angel in heaven.
She was born on a very cold snowy morning – 4th December 2012 and she was a beautiful baby and was received into this world with much love and gratitude. Her mummy had had several miscarriages and so carrying this baby to full term was a miracle in itself.
Sadly things didn’t go to plan following Lexie’s birth. She had difficulties with feeding and eventually she came to live with myself and my husband Paul permanently when she was 3 months old. We cherished and adored her.
Health professionals had been concerned that Lexie was ‘failing to thrive.’ They told me she was a very ‘floppy’ baby and was probably severely developmentally delayed and they suspected she couldn’t see. We were devastated – on top of everything else that was happening this came as a huge shock to us.
Lots of tests were carried out to see if there was a reason for Lexie’s problems, and when she was nine months old, we received the awful news that Lexie had a very rare genetic illness known as a Zellweger Spectrum Disorder. There is no cure for this horrible disease and we were told she probably wouldn’t live past a year old.
Luckily we were referred to Bluebell Wood Children’s Hospice straight away and although we were initially worried about attending, we were grateful of the support on offer. The staff were amazing, helping to allay our fears and come to terms with the diagnosis. Lexie attended the hospice regularly for daycare sessions where she was able to make use of the fantastic array of sensory equipment and toys. She particularly enjoyed the music therapy sessions and took a real shine to daycare co-ordinator Jo.
We had taken Lexie to groups for children with disabilities within community venues such as Sure Start but her disabilities seemed so severe in contrast to the other children that we always felt excluded and unhappy. However at Bluebell Wood – Lexie fit in perfectly – there was no competition about who’s child could do what – just a lovely family atmosphere where we felt supported and that we were part of something special.
Lexie’s first birthday came and went and she was doing really well. She was feeding and gaining weight and making small developmental steps. Each day was a blessing, and as time went on she learned some sign language so she could communicate effectively and join in with activities.
We tried to make every day special – doing the things that Lexie liked, and she became a happy contented little girl who was full of fun and beautiful to look at with big blue eyes and blonde curly hair.
Lexie’s second birthday also came and went – we were overjoyed that she had proved everyone wrong and was still with us – however, shortly afterwards it became clear that her illness was progressing, and she started to experience complications.
She went into hospital for a routine procedure in May 2013, but sadly things didn’t go to plan. She suffered a major gastro-intestinal bleed, and we looked on with horror as hospital staff worked to resuscitate her. Once again – she pulled through, and following another endoscopy she was transferred to a different hospital for specialist care. We prayed and prayed that she would make it.
However after 3 long weeks, we were asked to start thinking about a limitation of treatment agreement, and were asked to consider how, when and where we wanted Lexie to die.
We had always believed that the right place for Lexie to die would be at home with us, and we desperately wanted this to be put into motion – but we needed the support of the hospice to implement our plan. They were brilliant. They sorted everything out so that we could bring our baby home to die.
It was a solemn journey in the ambulance home from hospital. Bluebell Wood arranged for Lexie to be placed in her cot so that friends and family could come and visit before she was extubated.
Then the time came for us to say our goodbyes alone. She was placed on my knee and all medical intervention removed. She continued to breathe independently for a further 18 hours, and sadly passed away at 10.30am on 18th June 2013 – just myself and her beloved Grumpa were with her.
The Bluebell Wood staff were brilliant afterwards. They came and verified Lexie’s death – then we all travelled to the hospice where we would stay with Lexie in the Forget me Not Suite until she was buried.
We still receive bereavement counselling from the Hospice which has helped us immensely. All the other professionals withdrew after Lexie’s death but Bluebell Wood have remained a constant in our lives.
Words cannot really express our thanks to the hospice, so we try to repay their kindness by raising funds on their behalf in Lexie’s name. We also volunteer – and we give our time freely to give talks
To volunteers and organisations who fund and support Bluebell Wood.
It has been a difficult journey – at times we have been scared and desperate. However we always knew that we were not alone at that with the help and support of the Hospice we would get through it all – and we are getting there, slowly but surely. We will never forget Lexie, and continuing to work with the hospice and raise funds in her name helps to keep her memory alive.
Lexie’s story was shared with ICPCN by her grandmother.
Osoro’s story (Kenya)
Osoro arrived at Living Room on the back of a motorcycle one Monday morning after his mother and he had travelled for seven hours in search of help. Osoro’s little face was grossly disfigured by a massive tumor, and after several failed attempts to get a proper diagnosis or treatment, they were instructed to go to Living Room: “a place where people are helped.” While under Living Room’s care, Osoro’s cancer was treated, and his pain and symptoms were relieved. His playful spirit came back to life as the tumour initially responded to chemotherapy. He was dearly loved by the staff and brought much joy and laughter to all in the Living Room. Osoro was a very articulate little boy—one never had to wonder what he wanted. Several months into his chemotherapy, the tumour resurfaced and, cancer spread throughout his body. The Living Room team had the painful privilege of standing with Osoro and his family until his death.
Enock’s story was shared with us with permission from Living Room International in Kenya
Theara’s Story (Cambodia)
While in Cambodia volunteering for Cambodian Children’s Fund (CCF), I became involved in a tragic situation around a 14 month old baby girl named Theara Sok. She was from Kompong Cham province and had been diagnosed with a kidney tumor at a free children’s hospital in Phnom Penh.
Upon diagnosis, Theara was referred to another hospital in Phnom Penh which was the only hospital in Cambodia that treats cancer. Her mother took her to this hospital which confirmed Wilms cancer but would not treat her because of her young age. They do not treat any child under the age of 3 years – a fact which I have since verified via several other sources.
After being turned away by the hospital, we took Theara to a private clinic to get a further medical opinion and we were asked to provide CT scans from yet another hospital to better evaluate her condition. These scans sadly confirmed that her cancer was advanced and nothing that could be done for her in Cambodia. We were told that although there would have been treatment options available in the West, in Cambodia, there was nothing more that could be done.
A friend at CCF who has personally endured the losses of babies from various causes, told me; “Rick, no matter how determined you are, there comes a time when you have to accept that there is nothing more you can do.” As painful as the decision was, I knew he was right. We took her home to her province to prepare for her inevitable passing, one of the most emotional experiences of my life. On our arrival, we were greeted by her entire family on the road and invited into their small wooden home. As we all sat around her on the floor, my Cambodian friend explained the sad news to the family. The adults were tearful but held their composure for the sake of the children in the room.
After the head of the family expressed gratitude for what we had done to help Theara, he took my hand and put it on hers. She grabbed my finger with her tiny hand and as we sat there around her on the floor holding back the tears, the “oneness” that I felt with this family I had just met was unlike anything I have felt before. We all seemed to be connected by the love for this little girl on a level that was not of this world.
With no experience in the medical profession, via email I enlisted the help of a friend and volunteer who is a pediatric oncologist in America. I asked her to provide me with assistance for pain management to make Theara as comfortable as possible as this vicious disease attacked her tiny body. She gave me a list of several pain medications and dosages, including morphine for the final stages to help ease her suffering. I also enlisted the help of a certified nurse who would be able to properly administer these medications.
In attempting to begin pain management, we were stunned and frustrated to learn that the only medication we could obtain was simple codeine syrup. We tried various pharmacies and even went back to the hospitals we first took Theara to, and were told that these items were not available in Cambodia….not even morphine.
For the next 4-5 weeks, I made regular trips to Theara’s family’s home in Kompong Cham to bring her the codeine syrup and other needs such as baby formula. With every trip, her condition worsened. On what turned out to be my last trip to her home to provide medication, she was a mere skeleton of the beautiful little girl I first met only several weeks earlier. She was having an extremely hard time breathing. I received a phone call about 3 days later from her family informing me of her death. While expected, it was still one of the most painful phone calls I ever received. Through my tears, the only comfort I found was that she was not longer suffering.
After Theara passed on, I vowed to do something in her name so that other Cambodian babies stricken with cancer or other terminal diseases do not die the same horrible and painful death as she did. Although sad, I am at peace in knowing that we did not walk away from Theara in her time of need and we exhausted all options. Still, I am haunted by the fact that we could not do more, especially in comforting her when her passing was imminent.
I do not know why, of all people, she was brought to me, but I will remember this little angel always as she has forever changed my life. I am a firm believer that everything that happens in a person’s life is for a reason and I am determined to do all I can to ensure that as many Cambodian children as possible never have to suffer as Theara did.
Theara’s Story was written for us by Rick Peterson
Felix’s Story (Germany)
This year I met a young couple struggling bravely with their fate. They are a happy family, who love their son dearly but who were feeling completely exhausted and isolated and who were struggling to make ends meet on their income as a result of having to pay for the necessary medicines for their son. Their two-year-old son, Felix, was born with a severe brain defect and has a life expectancy of only a few months. The parents are both in their early twenties and trying their best to manage on their own. They explained to me just how desperate they feel. The mother is alone with their child all day long and they cannot sleep through the night because of the care-needs of their disabled son. They also told me that they have enormous problems getting the correct medicine for their child. It is far too expensive to buy it legally, and so they attempted to import it from a cheaper source. Now, the young father has to deal with being accused of importing illegal drugs. Their story is symbolic of the situation faced by many such families. Families in similar situations become more and more socially isolated and lack the courage to get in touch with possible support systems
Their story is just one of many, which is why I want to plead for children’s hospices and children’s hospice organisations to become more visible. Children’s hospice and palliative care services need to let people know what is available to them and to offer counselling to people.
Written by Sabine Kraft, Executive Director of Bundesverband Kinderhospiz in Germany.
The story of a girl whose name meant “Unwanted” in South Sotho (South Africa)
A young girl of 14 years who had a name that meant “Unwanted” in South Sotho was admitted to Sunflower Children’s Hospice in Bloemfontein, South Africa. She was HIV infected and had advanced disease with severe malnutrition and depression. She did not make eye contact with the staff and sat outside on her own just gazing into space, unwilling to play with other children. Her family history showed she had been living with her grandmother after her mother died, and her father’s whereabouts were unknown. An occupational therapy student spent time with her trying to get her interested in games and activities, without success at first. Another girl of her age tried to interact with her, but without success. The psychologist reported that she suffered from a very poor self-image and felt worthless; and said she just was waiting to die.
The occupational therapist then brought along two dolls , dressed alike, and the child became interested in these dolls , enjoying dressing them in different clothing and playing with their hair. Eventually she started to make up a story – telling the OT that the one doll was called by her own name and identifying why she felt depressed, sad and lonely – and that she had never felt loved and wanted. The other doll she spoke of as the child she would like to be- happy, loved and with a dream for a future as a nurse. Over the course of two weeks, she gradually spent more time with the “happy” doll and eventually gave the other doll to another child. Her attitude changed to match that of the doll she played with – she responded to hugs and would sit on a staff member’s lap; she smiled and laughed with the other children; and she made friends with another young girl in the hospice . At the end she was very frail and could not keep any food down. Despite this, even on the day she died, she would insist on being amongst the other children in the garden, trying to eat whatever they ate, and she held her special doll in her hand, even when she lay dying.
Needless to say, the doll was buried with her.
This story was shared with us by Joan Marston, founder of Sunflower Children’s Hospice