| This has been a challenging visit. How can it not be? I have held little children in my arms today, and wiped away their tears. These children who will die from a disease I survived as a child, nearly thirty years ago. Children whose diagnosis was delayed by a lack of awareness among their own doctors. Children whose chance of life balances on the availability of a few shillings for transport. Children who languish in tiny rooms devoid of colour and entertainment. Children who smile broadly and giggle merrily when I show them their pictures on my camera. Children who are so deserving of compassion and needing love. The world must know about these children, know that they exist, that they ned help, that they are worth fighting for. |
| I will be returning to Kisumu in February and, thanks to the generosity of many people, I will be taking essential bedding, toys and medical supplies to Nyanza Provincial Hospital. This Christmas, I asked friends and family to donate bedding to the hospital, rather than buying me Christmas gifts. Thanks so much to everyone who has contributed - the response has been fantastic, with donations coming from as far away as the USA, Canada, Australia, Bahrain, South Africa, Ghana and China - and many places in between. 120 sheets, 50 pillows and 100 pillow cases have been donated through the gift list I set up at John Lewis - enough for two complete sets of linens for the 30 beds allocated to oncology in the new Water Aid children's ward. There are more pillows than beds as children are daily required to share beds due to lack of space. This donation will make hospitalisation significantly more comfortable for the children with cancer. A number of people across the Oxford area have also very kindly donated toys for the children at Russia, and other donations have come from Colchester and even New Jersey. I must particularly mention Esther, Libby, Hannah, Ruth and Peter, deeply considerate and generous siblings who turned up on my doorstep with their parents, offering the £10 each had been given on Christmas Day "to buy toys for the children in Kenya, because we already have plenty". Some much needed medical supplies have also been generously donated from the USA through the International Rb Daisy Fund - essential items such as nutrition packs, dressings and IV and catherterisation kits. I will be taking all of this out with me next month, and I know they will be enthusiastically received. Thank you so much to everyone who has made this possible. I will take lots of photos and post another report when I return. Best wishes. Abby. |
| Fighting for life: a visit to a children's cancer unit in Kenya. By Abby White (July 2005). |
| "Keeper of the Stars" Tracy Byrd |
| ORPHANS OF THE CANCER STORM |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
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| Ward 5 is the children’s unit. Here, more than 200 youngsters upto age 14 are treated as inpatients at any given time. I immediately see several wearing white trousers and t-shirts stamped with the logo “ward 5” - clothing for those little inmates who posess none to call their own. |
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| This is no laundarette though. This is the main corridor along Ward 5 of the New Nyanza Provincial Hospital in Kisumu, Kenya. Kisumu is a hot, dusty, rundown town, stradling the Equator on the shores of lake Victoria. Built in the 1960s with Russian funds, it’s main referral hospital is an unwelcomimg concrete barrocks style building, still referred to as “Russia” by the locals. |
| Walking along the blandly painted corridor, open on one side to a large grassy courtyard, you would be forgiven for thinking you were visiting a municipal laundarette. Women go about their business of washing clothes and sheets, whilst all manner of freshly cleaned garments dance on a spider’s web of lines in the light breeze. |
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| One of several hospitals in Kisumu, Nyanza Provincial is the main referral hospital for Western Kenya and neighbouring countries. The most seriously ill children, and those with difficult cases, are sent here, including children diagnosed with cancer. As many as 40 children with cancer may be found admitted to Ward 5, the 26 beds allocated to them, crammed into just two pitifully small rooms near the very end of the main corridor. There are no toys to speak of, no brightly coloured murals adorning the walls, just a few artistic offerings near the ceiling, donated by a well-wisher. This is a paediatric oncology unit at its most basic and functional. |
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| Just one nurse cares for the children with cancer here, a cheerful practical lady who has made improvisation an art-form. Roseline is an anatomical miracle - carrying a ten ton heart in ten stone body. She has no oncology training, but applies her palliative care knowledge to care for the youngsters. She shows me |
| pictures of her previous patients, recalling each name and history with deep love and affection. The energy and soul she invests in their care goes well beyond her job description. She tells me of the traumas faced by these children and their families as they drag themselves along the road to healing. The facilities are so inadequate for their needs, but these children here are the lucky ones - they have finally reached a diagnosis and some form of treatment. A child in Kenya may be better off with AIDS than cancer. Russia stands in the shadow of the new Centre for Disease Control, a $6.4million bastion of modern American paediatric medicine which opened in 2004. That state of the art facility tackles the scourge of conditions such as HIV, tuberculosis and malaria, which affect many children in the region. Millions of overseas aid dollars has been poured into AIDS programs across Africa, but no such investment has materialised for children with cancer, and they continue to die in their thousands each year, from treatable, curable cancers. There are 32 patients admitted today as inpatients. Some are sharing beds, an entirely unsuitable state of affairs for children with compromised imunity. Infection control is an ongoing concern - earlier this year, two children were lost to an outbreak of chicken pox, and three more to other infections. |
| Many of the beds do not even have sheets to cover the waterproof matresses, and in this sweaty equatorial heat, pealing oneself from such inhospitable plastic surfaces is no fun at all. Temperatures sometimes drop significantly when the sun has set, yet there are no sheets or blankets to cover these children at night, to comfort and keep them warm. |
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| side of the stand, making each work for 6 children at once. IV tubes fan out like streamers around some grotesque May Pole, and the children must sit still to avoid tangles. There are virtually no toys avaialble for the children to play with. This will be a long, uncomfortable day for such sick little children. |
| No separate place exists for outpatient chemo treatments, necessitating removal of virtually all 26 beds to the lawn outside on clinic days. Emptied of most furniture, the two small rooms can accommodate all children returning for treatment, as well as the inpatient children. Some lie on mattresses, whilst others are arranged on chairs and the hard, concrete ground around the only two stands allocated to the oncology patients (there are only seven stands to be shared between more than 200 children). Roseline expertly arranges the IV bags on each |
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| only wonder at the number of young lives saved as a result of that last wish. |
| Chemotherapy for Alice, and children like her, is made possible by generous donations from a local couple, Mr and Mrs Somaia, who import the drugs from India. The Somaia's daughter died when aged just 30, after fighting breast cancer for 3 years. Her dying wish was that her parents help the children of Nyanza who have cancer. One can |
| No paediatric oncologist directs the care of these youngsters. Dr Onyango is the only oncologist at Russia. His interest lies in radiotherapy, but the ancient radiotherapy facility here is currently malfunctioning, and no one has the knowledge to repair it. None of the children's cancers are treated with External Beam Radiation in Kisumu - they would be referred to Nairobi, but few ever make it that far through lack of finances. The hospital’s Deputy Medical Superintendent, Dr Julianna Otieno, follows the children herself as she is a paediatrician. She has no specific oncology training, though she is greatly concerned about the children’s welfare. “The state of children’s cancer care in Kenya is very worrying” she tells me. “We are so under resourced and under-trained. Diagnoses are missed and referrals are not made in time. When children come here, many are still dying because no one can pay for the treatments available to cure them.” Dr Otieno tells me about Alice, a pretty five-year-old diagnosed with retinoblastoma, the second most comman childhood cancer in this region. At one year, Alice presented with unilateral Rb and received successful treatment. Unfortunately, poverty resulted in no consistant follow up as the mother was blind and could rarely afford the costs of a 150km journey to Kisumu. Aged 5, Alice finally returned - with tumours in the other eye. Only on learning about the heredity of Rb, did the Grandmother make a connection with her daughter's eye removal in infancy, many years before. No doctor had questioned why Alice's mother did not have an eye. Alice is now receiving chemotherapy, but her chances of survival are slim. |
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| Chemo protocols for most childhood cancers are detailed in a shockingly thin spiral-bound file, a document produced from experiences at Kenyatta National Hospital in Nairobi. The pages have been photocopied so many times, that the copy held by Russia is completely illegible in places. Retinoblastoma, the second most common childhood cancer in Nyanza, receives just half a page of attention. The document lists VEP (vincristine, etoposide and carboplatin) in a modified protocol for treatment of Rb, but neither Carboplatin nor Etoposide are available, so these children receive chemo using the Burkits Lyphoma protocol (adriamycin, vincristine, cyclophosphomide and prednisone). Treatment of primary brain tumours is detailed on just one side of one page, in a one-protocol-fits-all approach (methatrexate, vincristine, procarbasine and CCNU). Many children are diagnosed depresssingly late through lack of awareness in health care centres and district hospitals. Nearly every family has a story to tell of incorrect diagnisis and treatment, leading to delayed referral and advanced stages of the disease, One of the most shocking tales is that of Ashid from Tanzania. He was eight years old, and close to death when he was finally referred to Nyanza Provincial Hospital by his local health centre. Doctors there had been treating his eye condition as a burns injury. In Kisumu, Ashid was diagnosed with advanced bilateral Rb - extensive tumours in both eyes, and metastaces throughout his body. Roseline described him as “a beautiful little boy”. He recently died at home in Tanzania. Fortunately, many children do arrive in time for effective treatment, and most of them respond well to the initial phase of treatment, when they remain in-patient in the hospital for two months or more. However, successful treatment is dependant on consistant mainenance chemo over several years, presenting a major problem for a large number of families. |
| Jen’s story is typical of the children who come through Ward 5. In 2003, this shy, pretty nine year old was diagnosed with Burkitts lymphoma involving her right eye. She skipped into remission during the initial chemotherapy treatment, but her family could not find the money needed to cover transport |
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| costs of bringing her back for mainenance chemo. On Dec 31 she was re-admitted with relapse to the central nervous system. Unable to hold her eye open as we talked, she is still fighting on. Her family prays for a miracle. Like Alice and Jen, most families cannot afford the costs of transport into Kisumu. Roseline has tried giving moeny during one visit to cover transport costs for the next, but the shillings are rarely saved. In the face of desperate poverty, they are used for food or kerosene, and the child does not return tor treatment. Roseline dreams of a vehicle which could collect the children from different regional points on different days and bring them in for treatment, then return them to their district. Even better would be a vehicle equipped to administer treatment in the different regions, eliminating the need for children to make long journeys to and from Kisumu. Of the 32 children inpatient during my visit, 20 are receiving palliative care. Something so simple as transport can make the difference between a child surviving cancer, or dying from it. Many children arrive too late for effective treatment and return home to die, reinforcing the opinion that conventional medicine does not work, and adding fuel to the belief that cancer is always fatal. Most families hear the diagnosis and lose all hope for their child‘s survival. |
| Some children have been abandoned on the ward, either through fear of the cancer or bills, or belief that the child will die. 8 year old Lamek’s treatment for burkitts lymphoma was successful, and he has been stable for nearly two years. However, when his chemo was completed, no one came to claim him. |
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| The hospital cannot trace his family and social services cannot find him a home. So he lives on the ward, among the very sick and dying children. He cannot go to school as there is no one to take or collect him. "What can we do?" asks Roseline in frustration. "He is taking the bed needed by another child, but we can't turn a child out onto the street either". Families do not receive the support they so desperately need from people around them. Some of the stories are shocking in their misunderstandings. One family was ostracised by their community after their child lost an eye to Rb. The village members believed the child was cursed, and referred to her as "the child with the evil eye". Eventually, the ill-feeling grew so intense that the family was forced to move away from the area. Another family was accused of child abuse when their son’s low platelet count caused bruising. A village tribunal decided to punish the father with a public whipping. Such parents are in need of great compassion, yet a chronic lack of awareness leads to terrible distress and rejection. |
| Parents wish to be able to stay with their children, but most families cannot afford to stay close to their child at Russia. Money needs to be earned to pay for antibiotics, bed occupancy charges, and other costs incurred in the process of saving their child‘s life. Crops need to be grown to keep the remaining family fed, and there are usually other children to care for too. Most parents return home after two or three days, leaving their beloved child utterly alone in the hospital. No toys to amuse, no teddy bears to hug, no sheets to provide warmth through the cool equatorial night, no one to advocate or give love and reassurance. |
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| Six year old Dorothy weeps as her IV is adjusted. Roseline gives her a quick squeeze, but she has 31 other patients to look after. I sit beside her on the bare matress laid on the floor by the door, and wipe the tears from her cheeks. She looks up at me with big sad eyes as I wrap my arms |
| Most of these children can be cured. We know of treatments available to restore their health, but too many of them will be lost in the cavernous divide between rich and poor, poverty having stripped them of their basic human right to effective health care. The comfort levels of all children here can be inceased with just a few simple items such as sheets, blankets, soft toys, an imaginative lick of paint and big hugs. Yet the aid dollars will not buy these things. |
| gently around her. She buries her face in my t-shirt and sighs deeply, this precious little girl who has no family to love and comfort her today, or tomorrow, or the next day, this frightened child who is fighting so desperately to live, to survive a cancer which is entirely treatable. |
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| Water Aid has built a new children’s ward for Russia. With a little more space, the oncology rooms will accommodate thirty beds when it opens some time in early 2006. Roseline and her colleagues wait with interest for the move, but it is unlikely the new ward will vastly change things for her young patients. They need far more than a new building, but no domestic or overseas funding is allocated to meet their needs. |
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| The International Retinoblastoma Daisy Fund (UK registered Charity # 111-11-33 and special fund within Toronto's Sick Kids Hospital Foundation) is dedicated to improving access to essential life and sight saving treatment for children around the world. The IRDF is entirely funded by donations, so every penny we receive is deeply valued in the fight to save and improve young lives. It is possible to make donations online to both the UK and Canadian branch of the Fund. Please consider making a donation, and help create miracles for the many thousands of children with Rb who face death because they do not have access to the care they need. |