Support for Children, Youth & Families Affected by Cancer

Support for Children, Youth & Families Affected by Cancer

CANSA’s Tough Living with Cancer (TLC) Programme focuses on:

  • raising awareness of cancers affecting children / teens and the importance of early detection
  • providing tangible loving supportto youth and families affected by cancer

Children and teens diagnosed with cancer or affected by cancer (a family member has cancer) are supported, as we believe no child or family should have to face cancer on their own.

Supporting Teen cancer Survivors

A particular focus for CANSA is that of the teenage cancer Survivors (patients). Based on the most recent statistics available, Hodgkin and Non-Hodgkin Lymphoma remain two of the leading cancers among teens (10 to 19 years). This accounts for nearly a quarter of all the cancers affecting teens with a five-year survival rate of 79% in South Africa.

Slideshow & PDF: English | Afrikaans

Currently, adolescents are under-represented in the National Cancer Registry and the South African Children’s Cancer Registry, so the true incidence in SA is not known. Only that it is certainly higher than represented by these statistics.

Factors relating to lower survival rates, amongst others include HIV infection and advanced stage disease due to lack of early detection. In South Africa the lack of adolescent specific wards also has an impact on oncology care.

Dr Jennifer Geel, CANSA funded researcher, says, “A diagnosis of cancer is devastating for anyone, but teens are also coming to terms with rapidly changing life circumstances (puberty, high school, post school education, entry into the workplace, relationships, individuating from their parents, becoming adult members of society, etc.) and a diagnosis of cancer puts everything on hold. They struggle to manage themselves while their lives are threatened. There are high rates of depression among teen patients, but it’s often undiagnosed.”

Some teen Survivors share their challenges of living with cancer:

“I wish that everyone around me would stop talking about my illness like its taboo and focus on helping me get back to school,” says 15 year old Msogwaba from Mpumalanga, diagnosed with Plasmoblastic Lymphoma.

A young 17 year old in KwaZulu-Natal living with Ewing’s Sarcoma says, “I want my friends to see me as normal, not disabled, that they would understand how being diagnosed with cancer has affected my emotions, and that they would stay in contact.”

A 17 year old with Ewing’s Sarcoma, from Mosselbay advises, “Teens with cancer often feel isolated, especially if they’re in the hospital or away from school for long stretches of time. Visit as often as you can. Fight the urge to stay away because you feel awkward. Just being there to show your support will mean so much or stay in touch by sending notes and cards and by emailing, phoning, or texting.”

Geel adds, “Hodgkin-Lymphoma is a highly treatable cancer that affects adolescents and young adults, however, the survival for HIV positive patients, drops to approximately 45%. Nutrition is a major factor in whether a patient survives or not. Patients who present earlier do better.”

Lymphoma – Know the Signs

In order for patients to be diagnosed early enough to benefit from treatment, it’s important to know the signs, which can vary widely depending on where the Lymphoma is found in the body: Look out for enlarged lymph nodes (seen or felt as lumps under the skin); swollen abdomen (belly); feeling full after only a small amount of food; shortness of breath or cough; fever; weight loss; night sweats and fatigue (feeling very tired).

“The best chance of surviving Hodgkin Lymphoma is to be a part of the study being conducted at paediatric oncology units across the country. Any doctor who is treating a patient up to the age of 22 years old is encouraged to contact me to contribute meaningfully to the research study to improve the lives of children, teens and young adults diagnosed with Hodgkin Lymphoma in South Africa,” Geel advises. Contact Dr Geel at jennifer.geel@wits.ac.za

Read more about other types of cancer affecting adolescents and children here…

Early Detection Vital in Child & Teen Cancer

International Childhood Cancer Awareness month is celebrated in September each year. Gold ribbons are worn to help raise awareness worldwide.

In South Africa it is estimated that at least half of all children / adolescents with cancer, are never diagnosed due to misdiagnosis or ignorance of the symptoms of childhood cancer. Read more about the types of cancer affecting South African children and teens…

CANSA TLC Support:

CANSA TLC strives to inform the public of the warning signs of childhood cancer to enable early diagnosis and to ensure that children are referred to Paediatric Oncology Specialists for treatment. #ChildhoodCancerAwareness #CANSAtlc

An incorrect diagnosis by someone less knowledgeable, can allow the cancer time to build up resistance to treatment.  The quicker a child is diagnosed correctly, the better his or her chance of survival.

Myths surrounding childhood cancer also need to be debunked to ensure that children are referred to specialists without delay.

A young cancer Survivor, Thandi* and her mom Jessica*, were being rejected by their community. Jessica said at the time: “The lack of knowledge and understanding in our village is extreme. The majority still believe that my child is contagious and can harm them.” CANSA’s TLC Staff in Kimberley stepped in to offer support and information to their community. (*Names changed to protect privacy)

CANSA TLC embraces a holistic approach to include all aspects of physical, spiritual, psychological and social well-being of parents (guardians) and children / teens, through:

Slide Show & PPT: Childhood Cancer Awareness | Symptoms | Myths | CANSA TLC Support

CANSA TLC Facilities:

Currently there are five CANSA TLC facilities for children / teens and parents and families affected by cancer:

Eastern Cape:

CANSA TLC Support Room in Port Elizabeth – tel:  041-373 5157 (counselling to children / teens and families)

Gauteng:

CANSA TLC Nicus Lodge on premises Steve Biko Academic Hospital in Pretoria (Dr Savage Rd, Gate 7) with 48 beds for parents / guardians. This includes the Brian Davey Step Down Unit which provides a sterile, but family friendly environment – tel: 082 073 2850

Watch video of when CANSA TLC Nicus Lodge was visited by SABC Real Talk with Anele on #MandelaDay 2017:

KZN:

CANSA TLC Family Lodge in Durban, has 3 bedrooms for families – tel: 031-205 9525 (food parcels, home / hospital visits / family bereavement counselling)

Limpopo:

CANSA TLC Paediatric Oncology Ward in Pietersburg Provincial Hospital, Polokwane, caters for 27 children and offers 20 lodging units for parents / guardians – tel: 015-297 1268

Northern Cape:

CANSA TLC Support Room in Kimberley – tel: 053-831 2968 (counselling to children / teens and families)

Do You or Your Child / Teen Need Support?

Parents in need of support are invited to join a TLC Support Group in their area (contact the nearest CANSA Care Centre), or help to establish one if one doesn’t exist, or contact Cara Noble, email: cnoble@cansa.org.za

Parents, families, and guardians can also join our Facebook Support Group: CANSA TLC – Childhood Cancer Support to connect with others in a similar position.

Says Portia Masango, whose son was diagnosed with cancer: “Today marks exactly one year since my then 5 year old was diagnosed with cancer. I can still see Dr Khoza’s face when she said, ‘I’m afraid I’m gonna have to admit Tshegofatso, I need a CT scan done on him tomorrow, cos I suspect he has cancer.’

We were in Mankweng, a strange place, with no one we know around. The reality of it all never really hit me until we got transfered to Steve biko Academic. Then I got to understand what having a child with cancer means. Chemo, the nausea, loss of appetite, losing weight, being weak, sometimes feeling so helpless, feeling like just screaming. Being anxious, asking yourself: is he going to make it? The hope I had after completing the chemo cycles, only to do the CT scan and learn that the tumor was still there! Yet somehow having the strength to still go on.

Today, a year later, I’m grateful for every thing thus far: being able to attend school without major problems, just the occasional bleeding here and there, his glowing face despite chemo, still being able to play, slowly gaining back the weight, and the support from the CANSA TLC Childhood Cancer Facebook Support Group. It’s much easier when you talk to people who really understand what your talking about!”

Meet some of the parents and children who have been assisted by CANSA TLC:

How Can You Support Your Friend with Cancer?

Slide Show & PPT: How to Support Your Friend who has Cancer

Beyond Cancer – Model a Balanced Lifestyle to Your Child:

Childhood cancer Survivors need to continue with regular check ups. The treating specialist will offer dates for follow up visits and it is of utmost importance not to miss these appointments. Any risk for relapse or long-term side effects needs immediate attention.

After completion of treatment children / teens are able to return to school, some may take up regular activities excluding contact sport, and they can effectively reintegrate with family, friends and communities. While some children / teens may experience learning challenges or need to learn to live with a prosthesis, with the right support from educators and loved ones, the aim is to help each one to reach their personal goals and to achieve success.

It is important that they understand what they have been through, and feel empowered to take charge of their own well-being into the future. Parents can help by teaching them to:

Children / teens who have had cancer, are able to live a full, successful life. Where they may experience discrimination against them due to being a Survivor, later in life, they need to challenge this and speak out about it. There will always be ignorant people who believe myths and need to be informed of the facts.

Be a Gift to a Child in Need:

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