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.
Sam’s Story (UK)
“We were both active, working parents with an energetic two year old daughter, Freya, who had never been ill.
Rona’s pregnancy with our second child had been normal and we had just started decorating the attic which we had converted to make another bedroom for our expanding family. As soon as Sam was born we knew things were not right. It took another six months, including two stays in Intensive Care and many nights where we lived as a family in rooms above the hospital, for the doctors to discover just how ‘not right’ things were. Finally, Sam was diagnosed as having an incredibly rare metabolic disorder called ‘I Cell’ disease. It is a progressive condition that offers no hope of recovery. Sam will die, perhaps in a year or two or perhaps much sooner.
Somehow, Sam is a happy smiling baby but one that needs 24 hour care – which has left us exhausted. Freya, now three, has adapted to a house filled with oxygen pipes, masses of specialised medical equipment and nurses. She understands that her little brother is going to die; and that he has to be taken to hospital in an ambulance because his heart is poor and that he is often too tired to play with her. Freya understands her mummy can’t go to work because she needs to look after Sam and she understands we can’t go on holiday like her friends at nursery do.
Except now we can. Bluebell Wood has allowed us to come away together and all rest and play together.
Freya loves the toys, dresses, musical instruments, soft play and the attention. Sam is in safe hands and sees us whenever we want and we have lay-ins and our meals made for us! For the first time in over a year Rona has had enough sleep and I have remembered that we never finished painting the attic. It’s been so much more than a holiday and we can’t wait to come back!”
It is fantastic to walk around the building and hear children’s voices, drums and tambourines blasting out from the music room – directly beneath the Chief Executive’s Office and laughter from the Spa Pool and that’s just as often from the parents as the children. The building is full of life and fun, love and lots of exhausted but satisfied members of staff.
Bluebell Wood has benefited enormously from the advice and experience of other Children’s Hospices for which we are extremely grateful. Ensuring we can fun the hospice in the present climate is a worry, especially as almost all money is from voluntary donations. But we are hoping that the general public will be as warm and generous as in the past especially when they see how these amazing families are benefiting from some well deserved rest, reassurance and special care.
For more information visit www.bluebellwood.org
For the first 22 months of his life Ayanda Khumalo* had been a normal baby and toddler, living with his mother and grandmother near Durban in KwaZulu Natal, South Africa. Around this time his mother, Thandi*, noticed an unusual swelling in his abdomen, he had a poor appetite and became listless. From the local clinic Ayanda was referred to the district hospital where a rare cancer was diagnosed called Rhabdomyosarcoma. Thandi describes the next twelve months as “a tiring time of long taxi rides and hospital visits” in order for Ayanda to undergo surgery and then regular sessions of chemotherapy and radiotherapy.
Initially there was hope that the treatment would work but soon after Ayanda’s 3rd birthday the cancer reoccurred and he was readmitted to hospital where they found the cancer had spread to other parts of his body. Ayanda’s parents were given the sad news that there was little more that could be done and Ayanda was discharged from the hospital. No explanation was given of what might happen next and what to do in order to help their son in the last weeks or months of his life. Bewildered, they left the hospital with a bottle of paracetamol and a very sick child.
Dr Julia Ambler, a paediatric palliative care specialist with Bigshoes describes finding Ayanda “very symptomatic and in lots of pain that was uncontrolled.” She goes on to explain that they were able to get his pain under control and when he was feeling better they could start discussing what the family wanted for him. “They were aware that he was going to die at some stage.”But for us it is about where they wanted to have that care in those last days and about Ayanda’s quality of life,” she says.
For the first time since his diagnosis, Ayanda’s parents were involved in the decision making around his care and treatment. They chose to have Ayanda die at home rather than in the hospital and were empowered to give him his pain medication. They were helped to draw up a full plan of what to do in an emergency and in any unexpected eventuality.
Dr Ambler sums up by saying: “So how palliative care made a difference … is that they firstly got to understand what was going on. Then they got to be involved in the decision making and at the end of the day they had a child that was really comfortable and who died at their own home, which was their choice.”
* Names have been changed
Watch a YouTube video of Dr Julia Ambler telling Ayanda’s story.
Alec’s Story (Australia)
Hi my name is Theresa McEwan and I live on the Gold Coast of Australia. We have a local charity called Paradise Kids who support children and families experiencing grief or loss. In 2005 my 7 year old son Alec was diagnosed with an aggressive form of Multiple Sclerosis and went into Pallative care. My beautiful son went from a healthy 7 year to a very disabled child. During this time I gave up work to care for my son full time as his health continued to deteriorate. I am so grateful for this time with Alec. “We lived a life-time in a day” We lived a life-time in a day and captured many memories together. As a Mum facing the thought of losing my beautiful boy it was with gratitude that Paradise Kids was recommended to my family.
I was introduced to Lizzie Swatland who wrote a program called: “lllness Support Program”.
The program caters for children with a life limiting or terminal illness. Volunteers implement this program in either the hospital or at home over 7 sessions. The program takes an holistic approach with an emphasis on children understanding that they are more than their physical symptoms.
Since my son’s passing I have been very fortunate to volunteer with Paradise Kids and offer support to other families in a similar situation. I have found this very rewarding and it has also helped me in my journey through healing.
Losing a child is beyond comprehension but it is Alec’s memory that enables me to help others. Recently I have started working at Paradise Kids 3 days a week and it is a privilege to be able to contribute my experiences to help others. Paradise Kids conducts grief and loss courses throughout the year catering to children of all ages. We have a hospice that accommodates 8 adults on the premises. We are committed to educating the community and implement several courses including a Palliative Care Training Program. We are currently completing a new holiday house to accommodate children with a terminal illness and their families. During their stay the families will be offered support through counselling and the programs that Paradise Kids have to offer.
Paradise Kids is a local charity that relies on donations from the public to continue their vital work in the community.
Visit the website at : http://www.paradisekids.org.au
Andrea’s Story (Norway)
We live in a technological world where medical equipment will only get better and more advanced. Luckily, most people do not get to know anything about this as they do not have a child with an incurable illness. However, although the number of deaths have drastically reduced, every year there are 600 children who die in Norway from a serious illness. Nobody can be fully prepared for death, and especially not that of one’s own child. Following many of my own experiences as a parent, a previous health-worker and a priest, I have observed that there is a lack of assistance for that group of children and their families. The purpose of the organisation, Yes to Pallliative Care and Units for Children in Norway is first and foremost to bring our case and our needs to the fore.
We do not know what tomorrow brings, and being fortunate to have been a mother for 17 years to a child with multiple handicaps who has lived with one foot in the grave, I have experienced this fact with both mind, body and soul. I have experienced unnecessary suffering and stress simply due to a lack of knowledge. To provide a worthy and dignified end for a child’s life is very difficult as the fear of the unknown is always there! A child’s death will always be difficult, but without knowledge and support, it becomes far more difficult than it needs to be.
When one waits for death, sorrow is great and one suffers anticipatory grief. I may have the knowledge about death as a priest and a care-giver, but this has not helped me a great deal in the daily life of my family. One is first and foremost a mother, a relative, and a human being. It is hard when, after years of treatment and focusing on correcting and preventing conditions, suddenly you have to put all your energy into focusing just on the child and not so much on her treatment. It confronts us as adults, as parents and has health workers. That a child shall die is against nature, and it involves many strong feelings in us.
Andrea, who is my mentor and daughter, has now lived a long life with uncertainty hanging over her. In the spring of 2008, the decision was made not to put Andrea on life-support. Even though we have lived so long with a sick child, this was a very difficult process for us to go through, involving many meetings and much heart searching. Three doctors at the hospital and Andrea’s primary doctor prepared, together with ourselves, a plan to allow the rest of her life to be as easy as possible. The plan gave us reassurance about when things should happen, and the changes that would occur. Now, here we are, one year later, and Andrea is still with us with seven different diagnoses, two of which are fatal. The State Hospital told us this autumn 2009 that her life and her health are untreatable and getting worse. This touches us deeply and now we have arrived at the most difficult stage in Andrea’s life. We know that she is about to die, she has been close many times, and all the medical alarms are showing red. We feel so helpless and know that all we can do now is to fight to ensure that she receives a worthy and dignified end to her life.
MOTIVATION TO START THE ORGANISATION
While a great deal is known about adult palliative care, particularly for those suffering from cancer, there is not enough knowledge about how children who have untreatable illnesses feel in Norway. And the differences and variations in the diagnoses of these children are huge. Many children are unable to talk; some are blind or deaf and have enormous challenges communicating. These children require extra help from those around them, health workers, family, doctors and other professionals. They need help to see, listen and touch, and for someone to just BE there. We, who have worked with language, know that non-verbal language is amazingly strong.
Andrea now holds the last baton, and we are fighting to get a bureaucratic system to help us establish an organisation so that children who are dying are able to receive good quality palliative care from trained health care workers. The idea for such a group grew in me throughout this process over many years and many sleepless nights! To lose that which is the dearest to you, your own child, is heartbreaking. We have begun this group for our own benefit as well as for all the others who suffer as we do. It is most unlikely that we will get the help and support we need for our own child, but we know that it is still important for those who will come later. This will be Andrea’s legacy to the children in Norway.
Just a mother and founder of Yes to Palliative Care and Units for Children in Norway
Andrea, the child responsible for the founding of “Yes to Palliative Care and Units in Norway”, died in her mother and father’s bed, February 7th 2010, aged 17 years. Natasha and Jim, her parents will continue to work for palliative care for all the children of Norway. The funeral was beautiful, the church was packed full of friends and family and others who wanted to pay their last respects. Her very best friend, Winnie the Pooh (Andrea was his biggest fan) was the guard of honour and followed her to Heaven.
The very same day that Andrea was buried, our government finally talked about a “Plan to Help Living”, which will occur on 2 March 2010. Several times our organization has been mentioned in the Norwegian Parliament. In a very short time, we have accomplished a lot! We are working on translating books and literature, which we will sell to doctors and health workers as soon as possible. One of our goals is to raise enough money so that we can travel around the country and teach doctors, parents, sisters and brothers how to give the best possible care to the sick child. And last, but not least, start a support-group for everybody who is, and will be, in this situation.
Our work will continue in Andrea`s spirit.
Froeydis Vatne Graham
Member of the Board “Yes to Palliative Care and Units in Norway”
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. Although I would ultimately like to see a pediatric cancer treatment facility in Cambodia, I have realised that the greatest need right now is the establishment of a hospice program. After further research I have discovered that Theara’s suffering is commonplace in sick babies, especially the poor.
My hope is that this hospice can eventually assist in giving the end-of-life quality and dignity that every person deserves.
Theara’s Story was written by Rick Peterson who plans to open a hospice in Cambodia called “Theara’s Light” in Theara’s memory.
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.
Bayu’s Story (Indonesia)
A story from Indonesia of a brave young girl who was the very first patient at Rachel House’s inpatient facility.
Despite that, Bayu was a cheerful and playful girl. Being the first patient at Rachel House’s inpatient facility, she was doted on by the nurses and showered with attention by our faithful donors. Bayu’s every wish (most of it revolving around food) was fulfilled. Even a grand wish was granted by one of our generous donors! 2 weeks prior to her death, Bayu expressed the desire to return to her hometown to see her brothers and grandparents. The donor, who felt that the 15-hour journey would cause too much suffering for Bayu decided to fly her family to Jakarta instead! The reunion was truly moving for all, with Bayu lovingly wiping the tears on her brother’s face when they finally met.
Around Christmas, our team received a blood test order from Bayu’s oncologist. Followed by an instruction that Bayu was to be re-admitted to the hospital for blood and platelet transfusions. In the hospital, Bayu and her parents waited patiently for the blood to arrive, and transfusions to be carried out. When our nurses visited Bayu at the hospital, she begged to return to the hospice. But we had to tell her to be patient.
We were convinced that the end was near for Bayu. Heavy bleeding continued relentlessly from the tumour mass on her face, her appetite was waning fast, sleep and lethargy appeared to be winning over her cheerful spirits. However, we did not know if we, the palliative care team, could or should question the appropriateness of blood transfusion for an obviously terminal case such as Bayu.
We sought advice from the hospice community in Singapore and were told that we should discuss the matter with Bayu’s oncologist. Questions that we were told to ask ourselves and Bayu’s oncologist in order to determine if blood transfusion was appropriate included:
Whether transfusions would alleviate the symptoms of discomfort for Bayu?
And, questions should be posed on the purpose of the blood tests before they were ordered
From the discussions with Bayu’s oncologist, it was decided that Bayu should return to Rachel House as transfusions were not in fact alleviating the symptoms. We were fortunate to be working with a team of oncologists at the hospital who were willing to learn alongside our team what is the best possible care we can give to the patients, when their end is near.
Bayu returned to Rachel House on January 9th. Although weak and without much vision (as the tumour had begun to grow from the left eye), she demanded proof that she had indeed returned “home”. She ran her hand over the rail of the bed and asked her mom to peel her left eye open just enough to allow her to see for herself that she was indeed “home”. The little pumpkin was an intelligent girl!
Bayu’s relentless begging to “go home” made us realize that our role in palliative care goes beyond the nursing role we were administering, but that we needed to stand alongside Bayu’s oncologist and question if treatments being proposed were appropriate. It is a long journey, but we are blessed with an amazing group of oncologists who are willing to consider palliative care for the sake of the children.
Adi’s Story (Indonesia)
Adi was a 17-year old boy with a brain tumour. He was the fifth child of Cucu and Edik, from a family of 7. On 30th August, Rachel House was contacted for assistance by a family Edik is working for as a gardener. The family had paid for Adi’s medical expenses including treatment, surgery and hospitalization until such time the doctors announced that there was nothing else that could be done for Adi and that he should be taken home.
On Sunday, 31st August, a social worker and a nurse from Rachel House visited Adi’s home to conduct an initial assessment. We found Adi in a semi-comatose state, lying in the middle of the living room of a small and humble home, cared for solely by Yumi, Adi’s 20-year old sister.
We discovered that Adi had been blind since 10th August, a day before the surgery he had undergone to drain the fluid from the brain area at RSPAD. Post surgery, he spent 3 weeks in the hospital before being sent home on 29th August with little hope of living beyond 1 week. At home, Adi was being fed through a feeding tube (“NGT”), which by the time we arrived, had been blocked by food items which Yumi did not know how to flush out. During the first visit, we found other complications such as the high temperature (from possible infections), swollen legs and the need for adult-sized pampers.
The journey with Adi in the following few weeks taught us many valuable lessons, all of which have led us to closely review and re-evaluate the premises of our services.
Although we tried to equip Yumi with as much caregiver’s knowledge as possible, the fact that she was the sole caregiver made it difficult for her to execute the tasks in a way that would provide Adi with the level of care he needed in order not to suffer. For example, Yumi was not able to move Adi as often as he would have needed to be moved in order to avoid bedsores developing (by the time he died, Adi had open bedsores and wounds on his back and around the spine area, which led to other more serious complications such as infections, fever etc.) As fluid was building up in Adi’s chest in his final days, we brought an electrically powered suction tube to the house to drain the fluid. Unfortunately, due to the low voltage available in the house, we were not able to perform the procedure.
A factor that we never expected to witness was the absolute absence of assistance from the neighbours. In fact, Yumi and her family were shunned by them because of Adi’s illness. Was this due to fear borne out of a lack of understanding of the illness?
Adi’s home is 2 hours and 45 minutes away from central Jakarta. It is a huge distance to cover given our limited resources (manpower etc). We repeatedly found ourselves struggling with having to arrange for Adi to be taken to the nearest hospital in Bogor (on potholed roads) for the change of NGT and catheter, for suction of fluid from his chest and other complications that we could not manage, either due to the distance or due to operational license limitations.
Adi’s last days highlighted to us the serious need for an in-patient unit to cater for children like him who live too far away for our home care team to access, and those who live in too destitute a situation to allow for proper care to be administered in order that the process of death can be eased and made less horrifying for the patients, and for those around them.
*Names have been changed for reasons of privacy
Bayu and Adi’s stories written by Lynna Chandra of Absolute Partners
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 House 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.