Rohan Bloom Story
The Rohan Bloom Foundation took a decision to partner up with Paedspal and together work towards setting up a much-needed children's hospice and palliative care unit in Cape Town…..
Dr Meiring is founder of Paedspal, a pediatric palliative outpatient care centre. Paedspal supports families trying to do the impossible and who are facing enormous struggles with children whom have chronic illnesses that may not be curable.They do this through their multi-disciplinary pediatric palliative care team that includes doctors, counsellors, social workers and therapists including aromatherapy, art and music therapy.
They see families at different points and in different places along their journey...in hospitals, in their out-patient clinic situated at Rondebosch Medical center and sometimes at home.
Paedspal mobilizes existing resources where possible to ensure that there is sustainable relief. This is hard though especially within our healthcare gaps and in the context of poverty experienced by so many.
They do not stop supporting families after the child has died.. and services are extended in to the bereavement stage. Paedspal is a Non-Profit Organisation and is privately funded but no child is turned away even if they cant afford treatment.
Paedspal is also meeting an import gap in the public healthcare sector that is not sufficiently covered by government services, due to a lack of skills and policy.
This facility would be able to provide relief for families whether in the form of respite care, pain and symptom control or terminal care, Most families don’t have resources at home to take care of their very ill and dying children and Hospitals are just not the right environment.
From the day he could walk he faced life's challenges head on, always wanting to be the best at everything he did.
Rohan was a well-rounded sportsman but his true love was cricket. He was a diligent student at Cape Town's Herzlia Primary School, a loving son to his parents Rodney and Kim and brother to Kieran and Carys. Rohan first felt a sharp pain in his rib cage after a trying cricket game in July. He dismissed it with his usual swagger. Six months later, when the pain was still there, Rohan and his family knew that something had to be done.
Rohan was diagnosed with an extremely rare case of Ewing's Sarcoma in January 2015, shortly after he was made captain of his provincial cricket team and gained entry into the prestigious Bishops School for Boys in Cape Town. The immediate prognosis was three months of intensive chemotherapy, the removal of the tumour and the affected rib and months of gruelling radiation treatment.
During the surgery, it was discovered that Rohan was born with only one kidney and the kidney was so close to the infected area that it was too dangerous to radiate. The setback only emboldened the family, who decided to have Rohan's kidney moved to his pelvis so the necessary treatment could continue.
"It was the start of a painful journey that would ultimately bring them much suffering but also bring their close-knit community closer than ever before."
He faced agonising bouts of pain and nausea, mood swings and appetite loss, and, even though his resolve was unbroken, the toll on his family and closest friends began to show. But still he fought and endured. When the treatment was done, he had beaten the last of the cancer cells into submission and walked away from the hospital a hero.
Soon thereafter, still frail from his ordeal, Rohan was picked for his new school's cricket team. It was both the happiest and saddest time of his life when, while on tour with his team in October that year, the pain returned. Tests would later show the cancer had spread throughout his body.
Undeterred, Rohan knew what had to be done. He had already been through so much, had come so far, but as always was ready when the call came.
Despite the intolerable pain and confusion of his last months and days, he never gave in. Only weeks before the end he was sitting up in bed, planning his college classes with his best friend and talking about untaken holidays with his family.
"It was his last and toughest fight. On the 15th of April 2016, Rohan finally lost."
It was during this traumatic time leading up to his untimely death that it was evident how not only Rohan but the entire family desperately needed support emotionally and psychologically and this was provided by an amazing organisation called Paedspal, which were there for the family in the end. They lent the best support they could to the family and Rohan in this unsuitable hospital environment. Without their expert assistance under the leadership of Dr Michelle Meiring, the experience would have been even more unbearable.
Rohan's fighting spirit and refusal to admit defeat till his last breath lives on. Today, his fight lives on in the Rohan Bloom Foundation so that no child and no family should ever have to endure the horrors of the disease that took away our champion.
And so the dream of a fully equipped paediatric hospice and palliative care in-patient facility was born from this tragedy.
Rohan House Story
THE DREAM OF ROHAN HOUSE IS BORNE
The World Health Organisation (WHO) defines Paediatric Palliative Care as the active total care of the child's body, mind and spirit that also involves giving support to the family.
The idea of opening the first Children's Hospice in the Cape was borne when Rod, Rohan's father, became determined that no child and no family should ever have to suffer the way they did. Rohan passed away in a hospital where his parents slept on couches in the reception area and his siblings were not allowed to visit him. The staff was not familiar with Palliative Care and were therefore unable to provide the much-needed expert pain relief, care and support which Rohan and his family desperately needed.
Rohan House will be the first Paediatric In-Patient Hospice offering specialised care to the patient as well as support for the entire family.
Mattie Stepanek, a child who died from a life-limiting neuron-muscular illness, had this to say about Paediatric Palliative Care:
"Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently".
In partnership with Paedspal, the Foundation is currently working to secure funding to build Rohan House and its on-going operations.
Paedspal is a Non-Profit Public Benefit Organisation run by a team of skilled palliative care trained professionals and overseen by a board of directors, under the expert guidance of Dr Michelle Meiring, the Founding Director.
They provide an integral service to paediatric patients suffering from incurable illnesses, offering palliative care to those patients in need. Currently, this service is provided through an outpatient unit and hospital consultation service. No In-Patient facility exists in the Cape where these services can be provided.
Rohan House will be built from ground up in accordance with all the hospice and hospital regulations. The Rohan Bloom Foundation is very privileged to have acquired a property where Rohan House will stand and operate just a few minutes' drive from the Red Cross War Memorial Children Hospital in Rondebosch.
Rohan House will be staffed by Paedspal's expertly trained team of nurses, and visited regularly by specialist doctors and experts from around the country. They will offer the highest level of palliative care and support needed by patient and family. This includes therapy rooms for music and art, a play area for siblings to visit and family suites for families who need to spend quality time when the end is near.
Rohan House will be dependent on private funding and support to meet the exceptionally high costs and complex requirements to ensure that the proper care and treatment of this dreaded disease could be made available.
The goal is to develop a home which would comprise of an 8-bed inpatient unit as well as an outpatient unit with prime function to offer child-friendly, family centred, culturally sensitive care and support to children living with life-threatening / life-limiting conditions and their families. The unit aims to offer expert symptom management, respite care as well as terminal care whilst upholding the holistic principles of palliative care. The palliative care environment considers the child's body, mind and spirit and provides opportunities for more play, human touch and family interaction. The overall design of the unit should be conducive to a feeling of peace and tranquillity.
THE CURRENT PALLIATIVE CARE SITUATION IN SOUTH AFRICA
A recent report by UNICEF and the International Children's Palliative Care Network (ICPCN) estimated that there are currently 801155 children in need of paediatric palliative care in South Africa and 304 441 of them in need of specialised palliative care.
PAEDSPAL HOSPICE HOME
Paedspal Cape Town is a public-private partnership programme that provides care and support for children.
ROHAN BLOOM FOUNDATION
Provide a resource to comfort, support and educate families in their fight against this monstrous disease.