Red Cross Children's Hospital supports Sunflower Day

Today is acknowledged as Sunflower Day – which is all about rallying support for individuals diagnosed with life-threatening blood diseases and cancers such as leukaemia. Many such children are treated at the Haematology-Oncology unit at the Red Cross War Memorial Children’s Hospital in Cape Town. 

This world renowned, operates 16 clinics a month, with more than 4800 clinic visits and 1200 admissions a year and offers various services to these brave young patients and their families.  The unit, like the rest of the hospital, is strongly focused on placing patient and family care at the forefront.

There are two main services in this unit, namely haematology – which sees rare and complex diseases such as congenital bleeding disorders, different anaemias and haematologic conditions associated with systemic diseases – and oncology which sees all childhood cancers including leukaemias, brain tumours, other solid tumours and lymphomas.

Every year, hundreds of South Africans with blood diseases such as leukaemia and bone marrow failure reach a stage where their only chance of survival is receiving a bone marrow stem cell transplant from a healthy donor. 

The Sunflower Fund aims at growing a healthy, effective, ethnically diverse bone-marrow registry for the benefit of these patients.

Prof Alan Davidson, Head of Haematology and Oncology at the Red Cross War Memorial Children’s Hospital, is adamant that we need to expand the diversity of bone-marrow donors.  “We would like to see a more ethnically diverse donor group to increase the chances of finding donors for our patients.  If you are able to register on the national bone marrow registry, please do so. You could be saving one of our young patients’ lives.”

For more information on Sunflower Day, or to become a donor, please visit the Sunflower Fund website at www.sunflowerfund.org.za

ADDITIONAL INFORMATION:

Common abbreviations:

RCWMCH        The Red Cross War Memorial Children’s Hospital

CHT                 The Children’s Hospital Trust

FOCHA            Friends of the Children’s Hospital Association

Additional information:

What are the common childhood cancers?

Paediatric cancers are different to adult cancers in the following ways:

[1] They are much less common

[2] There’s a different spectrum of cancers consisting mainly of:

•          Brain tumours (25%),

•          Acute leukaemia (30%),

•          Tumours arising from primitive cells in deep-seated organs such as liver, kidney and adrenal gland which are hard to detect when small.

[3] They are fast-growing – which does mean that they are usually more sensitive to chemotherapy.

How is paediatric cancer different to adult cancer?

[1] It’s less common

[2] There’s a quite different spectrum of cancers consisting mainly of: Brain tumours (25%), Acute leukaemia (30%), Deep-seated tumours arising from primitive cells in deep-seated organs such as liver, kidney and adrenal gland. This makes them hard to detect. 

[3] Fast-growing – luckily this means that they are usually more sensitive to chemotherapy.

What are the symptoms parents should look out for?

The following symptoms, if persistent, could be danger signs for childhood cancer:

•          White spot in the eye, new squint, blindness or a bulging eyeball.

•          Lumps in the abdomen/pelvis, head and neck, in limbs, testes or lymph glands.

•          Pallor and easy bruising or bleeding.

•          Aching bones, joint pains, backache, and easy fractures.

•          Neurological signs: Change or deterioration in walk, balance, or speech; Regression of Developmental Milestones

•          Headache for more than two weeks with or without vomiting; Enlarging head.

•          Unexplained prolonged fever over 2 weeks, loss of weight and fatigue can also be signs of cancer but there are other diseases like TB and HIV that need to be excluded first.

The warning signs of cancer can be mistaken for common childhood ailments. We would advise parents to take their child to a physician or a qualified healthcare provider for further consultation if any of these symptoms persist, and we try hard to educate doctors and nurses about these warning signs to improve early detection.
 

Is the number of childhood cancer cases increasing?

The exact number of new cases is not known because in many countries not all children with cancer are registered. We estimate that about 100 children under the age of 15 years are diagnosed with cancer in the Cape Town Metro each year. Although increases have been observed in certain types of cancer such as Acute Lymphoblastic Leukaemia in urbanising populations, and lymphomas and Kaposi sarcoma in HIV-positive children, the number of childhood cancers is not increasing dramatically overall.

What are the chances of children winning the battle against cancer? Does it depend on when it is detected?

While 70-80% of children with cancer survive in wealthier countries where cancer is the second leading cause of death, the reality is vastly different for those living in poor countries.  A combination of lack of knowledge about cancer which delays diagnosis, limited access to appropriate treatment and the need to focus on other child health priorities means that only 2 to 3 out of 10 children in these countries are cured.

Early detection makes a big difference because less advanced tumours are easier to cure and often need less intensive treatments. With treatment available at two paediatric oncology units (at the Red Cross War Memorial Children’s Hospital and Tygerberg Children’s Hospital) outcomes in the Western Cape are in line with other middle and high income countries.

How important is it for parents with young children to educate themselves about cancer even though they may not be affected by it, but just so that they can be aware of the symptoms?

Is there enough awareness about childhood cancer?

The most important obstacle to detection is that childhood cancer is very rare. For every 1 million children under 15 only 100-150 will get cancer each year. That’s less than any common adult cancer on its own (e.g. breast Ca = 500-1000 per million per year). Most parents don’t ignore the symptoms, they just don’t think of cancer as a possibility. Most people know one or more adults in their social circle with cancer, but don’t know any children with cancer. The childhood cancer charity, CHOC, publicizes the St Siluan warning signs of childhood cancer in an attempt to increase parental awareness.

At the same time there is a need for continuing medical education at all levels. Studies have shown that diagnostic delay is just as often due to the condition not being recognized by primary carers … one paediatrician usually sees no more than one case of childhood cancer per year, and GP probably sees no more than one case every 10 years. Raising awareness among doctors and nurses is a big part of our focus as cancer specialists. We start at medical school and nurse training courses and then try to follow up with update for GPs and refresher courses for paediatricians.

Where can parents get more information?

For more information about activities in your region, please find the contact details of your local unit on the following websites: http://www.choc.org.za/ or http://www.saccsg.co.za 

The childhood cancer charity CHOC (an acronym for Children’s Haematology Clinics) was established in 1979 by a parent group in Johannesburg. By the end of the century parent groups had been set up in most main centres and CHOC became a national organisation which today has branches in The Eastern Cape, the Free State, Gauteng, Kwa-Zulu Natal and the Western Cape. CHOC has an excellent Handbook which it makes available to parents of children diagnosed with cancer.

In the age of the Web 2.0 there is excellent information available but there are also a lot of quite misleading resources. The best and most comprehensive sites for parents are those belonging to the National Cancer Institute (US) and Cancer Backup (UK). There is some on the South African Children’s Cancer Study Group (SACCSG) site, and of course also on the CHOC site (as I mentioned above). Parents should always check any material with their doctors, especially if it seems to be at odds with what their children are receiving. Reliable resources are to found at:

http://www.cancer.gov/cancertopics/types/childhoodcancers

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Childrenscancers/Childrenscancers.aspx

http://www.saccsg.co.za/

http://www.choc.org.za/ 

There are also international organizations such as the International Society of Paediatric Oncology (SIOP) and the International Confederation of Childhood Cancer Parent Organizations (ICCCPO). For more information go to: www.siop.nl and www.icccpo.org 

Early Detection?
The most important obstacle to detection is that childhood cancer is very rare. For every 1 million children under 15 only 100-150 will get cancer each year. That’s less than any common adult cancer on its own (e.g. breast Ca = in excess of 1000 per million per year). Most parents don’t deny; they just don’t think of cancer as a possibility. Most people know one or more adults in their social circle with cancer, but don’t know any children with cancer. The childhood cancer charity, CHOC, publicises the St Siluan warning signs of childhood cancer (attached) in an attempt to increase parental awareness.

At the same time there is a need for continuing medical education at all levels. Studies have shown that diagnostic delay is just as often due to the condition not being recognized by primary carers … one paediatrician usually sees no more than one case of childhood cancer per year, and GP probably sees no more than one case every 10 years. Raising awareness among doctors and nurses is a big part of our focus as cancer specialists. We start at medical school and nurse training courses and then try to follow up with update for GPs and refresher courses for paediatricians.

Why, in spite of decades of research and public exposure, does cancer still maintain its power over us?

This is a very difficult question. There is a scientific answer which doesn’t simplify easily, having to do with the disturbance of the natural processes of tissue development and programmed cell death that come into play to cause cancer. There is an existential answer … our bodies betray us in the absence of any obvious external trigger … this is acutely so in childhood cancer where the usual suspects (nicotine, diet, sun exposure) are off stage. Since there is in most cases no easy answer, nothing or no one to blame (and that’s something I emphasize to parents) it’s very hard to accept.

Should parents always get a second opinion?
It isn’t often necessary but it is the right of any parent. In almost all instances where the clinical problem is rare or complex paediatric oncologists take it upon themselves to ask advice from recognized experts, all of whom are known to us in what is quite a small international community. Since the facts of each case are seldom in dispute, most second opinions can be obtained with the help of a clinical vignette and the relevant scans and so the patient seldom needs to travel for such an opinion. Self-referral is to be discouraged. The primary physician needs to know the family’s concerns and provide essential medical information … I certainly don’t see patients for second opinions without a formal referral.

The role of diet?
Diet is important, though I would never advise substituting it for proven, evidence-based treatments. Broad strokes would be: nothing fancy, nothing expensive … fresh food, low residue, high fibre and always discuss with the oncologist because there are disease-specific recommendations such as avoiding any folate supplementation if the diagnosis is leukaemia. One of the important riders is that these dietary changes need to be permanent and for the whole family. No point being cured of childhood cancer and then returning to a high residue, low fibre diet that may predispose to adult cancer.

How important is the mind part in the “battle” against cancer?
Wellness is certainly more than the absence of disease. The placebo is powerful but it varies from patient to patient, and it’s impossible to quantify. I communicate it parents like this … “Your child’s cancer gives him or her a 7 out of 10 chance of surviving but that doesn’t matter if you only have one child … your job from day 1 is to make sure he/she is one of the 7 and not to worry that he/she may be one of three.” So I invoke positive thought at the outset.

Is there a foreseeable future where gene therapy could eradicate cancer?
Gene therapy is certainly an idea whose time has come. The problem we face in clinical medicine is to translate the advances made in the lab into the clinic. This is best understood with a concrete example … it’s quite easy for us to put cells into a diabetic patient which make insulin. The problem is to put in an off switch at the same time so that those cells stop producing insulin when blood sugar levels are normal.

Why have we not gone beyond the punishing forms of treatment we currently have?
Targeted therapies which attack very specific molecules or binding sites and have very few side effects have been introduced for a few diseases where the mechanisms lend themselves to these treatments. Unfortunately, in most cases we are still a long way off being able to get rid of the mainstays of surgery, chemotherapy and radiotherapy.