Jordan’s Journey

Our story began in 2015 when in one moment our lives completely fell apart. Jordan was diagnosed with a very rare form of thyroid cancer, and added to that, a type of cancer with no available treatment options in South Africa. Your child has cancer is one of the worst things any mom or parent can hear. So, there I was, I had to become a narrator of a story I didn’t want to be part of, let alone write. This had to be someone else’s story, surely not mine, not what I had planned out for myself and my children. A story facing many struggles mentally and physically.

So, what do you do? You fight like you have never fought for anything in your life. You fight so hard that in the process you don’t even realise that you lose a part of yourself, you lose relationships, friends, family and not to mention the enormous pressure and feeling of neglect your other children feel. But this was our story and I had to write it. I refused to believe and accept that there was nothing more to do and so I started doing research begging and pleading with doctors from all around the world to give my son a chance to live because there was no way my or his story was going to end this way. Hours and hours I sat and read medical journals, searched the internet and became accustomed to a word I could only pronounce in syllables. It is also during this time that I realised that google is not your friend but in fact a very nasty person that uses words like no options, life expectancy etc.

And boy, not even to mention when you talk to doctors and you mention some of those syllable words, they think you are from the same country because the conversations that follow are the ones in my head thinking, Doctor….. please talk slower, nope not French please, South African. You are now even more confused and anxiety attacks are becoming regular. I felt like running away. I was tired of hearing that I must be strong and must keep believing, it’s very difficult to believe when you are constantly being given bad news.

And when I thought all hope was lost after hours of e-mails to foreign countries, Jordan was accepted into a trial programme in Washington for children with this rare form of cancer. And so started my fundraisers and countless trips to the United States.  Each trip gave me hope.  Going back and forth seeing doctors and bringing back 6 months supply of chemotherapy. Months turned into a year then two then three the chemo was working, it was not a cure, but it was working he was stable. And then Covid hit, suddenly there were no more trips which meant no more chemo and my life fell apart all over again. How could I look my child in the face and tell him…? I failed him, I wanted to die.

What followed was many fights, e-mails to pharmaceutical companies because now we had to beg and plead for this drug to be supplied on a compassionate basis. At 6000 dollars a month this was a death sentence in itself, my child needed this drug to stay alive, time was slowly ticking away. One month became two, three, four. All that kept me going was a doctor saying the drug would stay in his system for some time… I had literally nothing more to give, I had nothing left. I pleaded to God for another miracle. Sometimes I thought God must be saying please close the doors and windows because the crazy lady is at it again.

But they did it, not me, them. We secured another 3 years’ worth of chemo. All because of my team of unsung heroes the handful of people that stood by me when I thought the world was failing my child. My unsung heroes are among you all. Some of my heroes took in my children, fed them, helped with countless fundraisers and sometimes they just listened. They kept me going. I would not be standing here today if it wasn’t for them. They might be the person sitting next to you. They don’t want to be noticed; they don’t want any awards they are just there, silently waiting to pick you up when you fall. I have witnessed and experienced the dire need of parents that had to give up everything. Those that have had to face huge financial burdens, those with no support system, those lost and alone.

And although our journey still continues with many obstacles along the way and our fight is not over, I have become a narrator of a story filled with gratitude, faith and determination, one with a different outlook on life. I value and treasure each and every moment because I know someone somewhere has my back. I lift my head up high and hope in someway to be the voice for parents and children facing the same struggles knowing that hope is not lost. I gather strength from a little boy, no sorry teenager, that wakes me up at night saying thank you for looking after me, there is no one I love more than Jordan, and those unsung heroes in every form and shape around me.

I want to end off by saying, be the change you want to see in the world. Be that unsung hero for us, for these children, for this organization and let’s keep hope alive.

A Mother’s Journey: Finding Hope in Challenging Times

As we continue to support children, teenagers and their families facing childhood cancer, we are reminded of their incredible resilience and strength. This month, we share the powerful story of Jabu’s mom, Luleka, and her experience with CHOC Childhood Cancer Foundation in the Western Cape

Luleka’s world was turned upside down when her young son, Jabu, was diagnosed with leukaemia at just 1 year and 10 months old. The news was devastating, and she struggled to come to terms with the reality of her child’s illness. “At first, I couldn’t believe it. I was in denial,” she recalls. “I couldn’t accept that my child had cancer.”

As Luleka navigated the complexities of Jabu’s diagnosis and treatment, a nurse introduced her to CHOC Childhood Cancer Foundation Western Cape. “I worried about finances, finding a place to stay, and having enough food, as we were coming from far,” Luleka explains. “But CHOC came to our rescue, providing us with much-needed support.”

As Jabu underwent treatment, Luleka found comfort and solace in the CHOC community. “At first, I felt alone and overwhelmed, but as time went on, CHOC became like a home to us,” she says. “The staff, the volunteers, and the other families—everyone was so supportive and caring. It gave us a sense of belonging and connection that helped us through the tough times.”

Even in difficult circumstances, CHOC helped Luleka and Jabu celebrate life’s precious moments. When Jabu’s birthday approached, Luleka worried it would be a difficult day since he would be receiving treatment. But CHOC had other plans. “They made Jabu’s birthday so special,” Luleka remembers. “They brought cake, balloons, and gifts. It was a wonderful celebration, and it made us feel we were not  alone.” The highlight of Jabu’s birthday was the singing and dancing at the CHOC Plumstead House.

Luleka’s story is a testament to CHOC’s unwavering support. “CHOC is there to give a hand and hope to those facing this journey,” she says. “They provide more than just support—they offer a sense of community, belonging, and hope. I am so grateful for everything they have done for us.” Her journey is a powerful reminder that no family should face childhood cancer alone—there is always hope and a community ready to help.

Glory Nanungu’s Story

A Journey of Courage and Resilience

Blantyre, Malawi—a city steeped in tradition, bustling with life, and known for its vibrant industries. Among the hustle and bustle, a remarkable young woman named Glory Nanungu has emerged, defying the odds and inspiring those around her.

Born and raised in this vibrant city, Glory’s childhood was marked by curiosity and determination. As she recalls, “I have always been an intelligent, healthy, and extroverted child who enjoys meeting new people.” Her zest for life and love for learning set her apart from an early age.

Family First: Family is at the core of Glory’s world. Her father, strict but supportive, guides her through schoolwork, while her fun-loving mother engages in playful moments with Glory and her siblings. Their bond is unbreakable—a source of strength during both ordinary days and unforeseen challenges.

A Painful Discovery: In January 2022, Glory’s life took an unexpected turn. Excruciating stomach pain led her to the hospital, where scans revealed a lump in her kidneys. Surgery became inevitable. The tumor grew rapidly, causing discomfort akin to pregnancy. But Glory’s resilience shone through.

A Battle Begins: June 2022 brought both relief and heartache. Successful surgery removed the tumor, yet the doctor delivered bad news: traces of cancer cells were found in Glory’s kidney, lungs, and liver. The path ahead was daunting—chemotherapy and radiation awaited her.

“My mother cried every day,” recalls Glory. “But I had faith in the doctors. They worked tirelessly to restore my health.” Her unwavering spirit became a beacon of hope for her family.

A Safe Haven: Glory’s journey led her to the CHOC House, a sanctuary for children battling cancer and blood-related disorders. Here, she found solace—a place that felt like home. Welcoming staff, a comfortable bed, nourishing meals, and camaraderie with fellow families eased her burden.

“My arrival at the CHOC House was very pleasant,” says Glory. “I knew I wasn’t alone in this fight.”

A Dream Unfolds: Despite her trials, Glory remains steadfast. As a library prefect in school, she immerses herself in books, dreaming of a future where she can make a difference. Her aspiration? To become a doctor—one who heals, comforts, and brings hope to others.

Glory Nanungu’s story reminds us that courage knows no bounds. In the face of adversity, she stands tall, a testament to resilience and the power of community. Let us rally behind her, celebrating her journey and believing in brighter tomorrows.

Glory’s journey continues, and we are honored to share it with you.

If you’d like to support children like Glory, consider donating to the CHOC House or spreading awareness about childhood cancer. Together, we can make a difference.

Jana “The Brave”

STORY WRITTEN BY PETRU HUMAN

Jana is a ten-year-old from George. According to her mother Petru, she has always been a quiet child. She is youngest of three siblings, aged 6, 10 and 11, often kept herself busy with her dolls, watching TV or picnicking in the garden. When Jana started having symptoms her symptoms were like any “normal” child, and we treated them as any other parent would. Or the cycling at the school, or the running with friends… Feeling nauseous honey? It’s all the cake and sweets you ate baby. Go and rest, be calm, you will feel better soon. We also went to chat with Jana’s teacher, we raised our concerns about her not wanting to go to school as she is very tired.

After six months the leg pains persisted, and the nausea returned. We went to numerous doctors, three general practitioners and two paediatricians over the next three months. The leg pains were getting unbearable, nausea and vomiting daily, she started getting pale and tired. She was then sent for blood tests.

On the 22nd of September 2024, the blood tests came back from the lab. Jana has cancer. She had tested positive for Leukaemia.  

The following day Jana was admitted at Bayview hospital, stabilised, and received her first blood transfusion. We arrived at Red Cross War Memorial Children’s  Hospital the next day, where we met Doctor Helder de Quintal and Professor Alan Davidson. It all felt like such a blur, still reeling, trying to process what is going on and what is happening to our child.

Her treatment started immediately after being admitted at Red Cross War Memorial Children’s Hospital for many months.

During this period, we ran numerous awareness and fundraising campaigns for CHOC Childhood Cancer Foundation. Jana through mobilising friends, family, senior citizens homes and bikers Clubs in George ran a very successful Santa Shoebox project in December 2022 which reached children who are treated in both Tygerberg and Red Cross.  In December 2023, Jana’s family and the Oewer street neighbours in George hosted a festival of lights fundraiser in aid of CHOC and the CANSA Association of South Africa. The event was a huge success.  People from all over the country supported and contributed to our plight and cause.

Jana and myself returned home just before her 9th birthday on the 15th of April 2023 for the last time where she completed her maintenance locally and pursued her integration into “normal” life. She rang the bell, cured from her illness on the 20th of May 2024. We were so happy and relieved. Although she survived her big C onslaught, the scars of her battle are still deep but we are extremely proud of our young warrior,  Jana the Brave.

Candice Weber

In 1995 at the age of 4 I knew I wanted to be an actress. I would sing and dance through the hallways of our house in Witbank and I probably drove my parents crazy. In May 1995 my sister, Nicole, was born and I was delighted to have a bubbly new friend. I slowly started getting ill that year with terrible stomach pain and my parents took me to every local doctor only to come home with no true cause of the problem. On my fifth birthday in October that year I was still too ill to play with my friends and celebrate with my family and at that point, my aunt recommended that I should go to a paediatrician in Johannesburg. Blood tests and sonars were done and my parents received a call that soon changed their life.

I had a tumour the size of 12cm x 4cm growing out of my right adrenal gland and was diagnosed by Professor Richard Cohn with stage 3 Neuroblastoma. My parents were shocked. They just found out that their eldest had a life threatening disease with only a 10% chance of survival and had a 6 month old baby to take care of too.

I remember a long time of having no hair, feeling very weak and being tired of having to take “another” needle, “another” drip, “another” round of a word called “chemo” and watching “Lion King” for the millionth time but looking back, I don’t remember the pain or the hurt at all. That is one of the biggest blessings for me and something I admire about children. To me I was just feeling quite sick for a very long time, but it never once crossed my mind that I was actually busy dying. I now understand the saying: ‘have faith like a child’.

Ward 294 at the (then) Johannesburg General Hospital became our home for the next two years. The doctors and staff members were remarkable to say the least. I remember the loving presence of Sister Sadie, Dr. Bernard, Dr. Rosie and the exceptional nursing staff working around the clock to help us get through this. My treatment started with extensive chemo therapy for 3 months to reduce the tumour at 3 week intervals. During this time my family and I stayed in different hospitals for 3 nights to get treated then went back home for 21 days. During this time, I also received a lumber puncture to determine if the tumour had infiltrated my bone marrow but by the grace of God, it did not.

After the tumour had shrunk to a more manageable size, the Paediatric Oncology Physician Specialist, Prof Peter Beale successfully removed the tumour after hours of surgery. He had said to my father that it was a miracle that I made it and I had lost so much blood that an emergency helicopter had to bring blood to the hospital for me. I remember waking up from this operation feeling incredibly weak but being surrounded by love when my eyes opened. My parents were so hopeful and thought that my battle was over, but it wasn’t. After my operation, Professor Cohn decided that the next best step would be a bone-marrow transplant. My bone-marrow was extracted and sent through to Cape Town to be used again after my next treatments were finished. For an entire week I was without  bone marrow and received aggressive chemo therapy in the hope of killing off any remaining cancer cells. I don’t remember much from this time other than feeling very cold and not being able to stomach food.

After my bone-marrow was re-introduced, I stayed in isolation in the hospital for 8 weeks. This was the darkest time. I remember playing with ‘My Little Pony’ dolls with a girl next door who’s complexion was a light purple and whose beautiful full lips were dried and cracked. Soon after I went back to my room to eat something my mom had made, I remember trying to take a bite out of a soft cold mielie (corn on the cob) and saw blood everywhere because my teeth and gums had become so weak. Straight after this, I heard a scream from next door that I somehow knew was a mother’s cry. My friend next door had just passed away. This was not the only brave mother who lost her child. I was the only one in that time of isolation to have survived.

Once my blood counts and platelets were acceptable, my parents took me home and I isolated for a few more months. l continued going for regular blood tests and check ups for years to come and by the grace of God, through the incredible specialists, the relentless love from my family, the staff, CHOC, Reach for a Dream and above all prayers, I made it and am 24 years clean. I am an actress and I truly believe that if you are alive, you still have a purpose.

I can’t imagine how hard it must have been for my parents and loved ones, but I never once felt unsafe or unloved and it’s because of this that I want to help encourage any child or parent going through the same that they are not alone.

Against All Odds: Kiana’s Battle with Stage 4 Neuroblastoma

My name is Elisma, and my daughter Kiana is 12 months old. We are from George and arrived at CHOC on December 23, 2022. Kiana is a stage 4 neuroblastoma cancer patient.

Kiana’s journey began on December 20, 2022. She was a very active little girl, but on December 16th, she suddenly stopped walking and couldn’t pull herself up. She had been unusually fussy the week before and refused to sleep alone. Concerned, we took her to the hospital on December 20th. Initially, she was diagnosed with arthritis, but when the doctor noticed something unusual in her ultrasound, he ordered more tests. An MRI revealed a large tumour growing in her lower back, pressing against her spinal cord. The doctors quickly arranged for us to be flown to Red Cross War Memorial Children’s Hospital.

Upon arrival, Kiana was re-examined, and on December 24th, doctors formally diagnosed her with cancer, though they couldn’t specify the type. This uncertainty added to my anxiety. On December 26th, we received the devastating news: Kiana was in stage 4 neuroblastoma. I was shattered. I associated stage 4 cancer with untreatable conditions and felt as if someone had declared my baby already lost. The doctor explained that there was little they could do beyond hoping for her recovery. I felt numb and desperate, but looking into Kiana’s trusting eyes, I knew I had to stay strong for her.

Kiana began the first of seven chemotherapy sessions on December 27th. The MRI at Red Cross also showed that the tumour was affecting her nerves, which explained her difficulty in walking. Miraculously, after her first chemotherapy session, Kiana began pulling herself up against the cot railings. She was evaluated by several doctors over the next week, and their expressions told me they doubted she would walk again. We became outpatients on January 3rd and were introduced to the CHOC Foundation, which we gratefully accepted. Initially, I was terrified to leave the hospital, fearing for Kiana’s safety without immediate medical help. However, the CHOC House staff was incredibly supportive, and within weeks, Kiana was walking on her own again. I thank God for His mercy.

In April, another MRI showed slight tumour shrinkage, but not as much as the doctors had hoped. The cancer had spread to other parts of her body. Prof Davids explained that if the tumour shrank further, surgery would be necessary. An operation was scheduled for April 19, 2023, but further MRI studies deemed it too risky, dashing our hopes once more.

Desperate, I begged the doctors to let us go home. They allowed us to leave for three weeks, during which I urged everyone to pray for Kiana. We returned to Red Cross Hospital on May 10th for the sixth round of chemotherapy. Despite the prognosis remaining unchanged, Kiana was happy, running around, playing, and being a baby. She never seemed ill, aside from losing her hair.

On June 1st, another MRI revealed significant improvement. As a result, Kiana was cleared to begin radiation treatment on July 31, 2023. She is currently in week three of treatment and doing extremely well.

Celebrating our Fathers

Here is Mzwandile’s story in his own words:   My name is Mzwandile. I am a 58-year-old single father from Fani Village in Queenstown, Eastern Cape. My one and only son, Asanele Matume, who is 8 years old, was left with my sister when I went to town to look for a job. Asanele was only about 2 weeks old, and from then on, I had to raise him on my own with the assistance of my sister and my brother.

Asanele grew up very well until the beginning of April 2024, when he experienced a loss of appetite, high temperatures, and just not feeling himself. I took him to the clinic every time he was not well, but he was not getting any better. He was then transferred to Frontier Hospital in Queenstown where tests were done.

My world was shattered when I was told that my son has cancer of the blood (leukaemia). He is my only hope, and I only want what is best for him. We were transferred to Frere Hospital in East London for further management.

Upon arrival at Frere, we met with the amazing doctors, social worker, and nurses. Just a day after we were admitted, I was given some items by CHOC, such as toiletries, shoes, and a few items of clothing, as we traveled in haste from home. When I first arrived here, I was wearing heavy-duty boots and work overalls. The doctor immediately gave my child treatment for his cancer, and I am so proud to say my son can get up from his bed again already and join the other kids to play – all within two weeks of starting his treatment.

I am happy I followed my heart and put my child first by coming to this unit. The doctors have lots of hope for my son, and while I am taking things one day at a time, I am looking forward to the day (whether it’s years later) when I am able to go home with my child and say that he is cancer-free.

Thank you, Frere Hospital and CHOC, for everything.

Young Leonaldo Crouch from Kimberley

In November 2023, young Leonaldo Crouch from Kimberley received a life-changing diagnosis: a soft tissue sarcoma. At just 14 years old, he faced a challenging road ahead. But he wasn’t alone, Leonardo was one of three siblings, and his family rallied around him.

After consulting with the medical team, the decision was made, Leonaldo would undergo radiation and chemotherapy. However, there was a catch. The specialised radiation treatment for children from the Northern Cape was only available in Bloemfontein. So, for a long and emotional 7 weeks, Leonaldo and his family had to relocate to Bloemfontein.

Leonaldo’s little brother, just 10 months old, needed constant care. His mother, Abbenesia, was breastfeeding him, making it impossible for her to leave him behind. Thankfully, CHOC stepped in. CHOC allows children who are breastfeeding to stay with their mothers. Leonaldo, his mother, and his baby brother found refuge at CHOC House Bloemfontein. For those 7 weeks, they became part of a supportive community. Leonaldo bravely endured his chemo and radiation treatments, with his mom and baby brother by his side. Abbenesia shared her relief at being able to care for her baby during this critical time.

“At CHOC House Bloemfontein, we felt the love,” Abbenesia said. “Interacting with other parents, sharing our stories—we knew we weren’t alone. It gave us hope. The staff became like family to us.”

Leonaldo’s journey isn’t over yet. He faces surgery to remove the growth in the coming weeks. We send him our best wishes and hope for a full recovery.

Kungentando Khathi

My name is Kungentando Khathi, I am 13 years of age from a small town called Berlin (Lingelistha) township. Berlin is about 21kms from East London. In 2023, my world was turned upside down when I was diagnosed with brain cancer in March 2023. The symptoms started with severe headaches which started during the night and would last 2 hours and then disappear. I would also experience seizures. These episodes were happening almost daily. After 2 weeks my grandmother and aunt decided to take me to Cecelia Makiwane Hospital, they took the blood and afterwards a scan was done. They quickly discovered that I had something unusual in my brain. I was then taken to the Frere Hospital.  In September, I started treatment but unfortunately as I was getting better; I also lost my eyesight. I was a very active child, love soccer and rugby. I loved playing with my siblings and going to school. I cried for days because I could see anything, the clothes that I was wearing, my friends, my family. I was depending on people to take me everywhere.  I hated that and I still do.

I eventually had to get used to this new life. At the hospital the nurses are so friendly and continue to show support. I then came to the CHOC house in February where I really experienced so much joy. I made new friends. I could move freely on my own and enjoy the daily trips to the hospital in the CHOC cow vehicle. Saturday the 22nd of April 2023 was the best day of my life. I was told by sisi Portia that I was going to Aquarium to see all sorts of sea animals and the different kinds of fish. I had never been to this type of place before. We arrived at 11am and were welcomed by the staff, who had prepared a fun tour for us. I was able to touch the penguins and feed the pelicans. We were informed about the sea life, the different fish and what they eat. We were also told about the impact of litter on sea life.  I really enjoyed listening to the seals make noise while being fed. I was also able to touch the shell of a sea turtle.

I would like to thank the CHOC staff members for this outing. I have memories that I will never forget. I have a positive outlook on life and look forward to the next outing.

Importance of identifying Early Warning Signs for Children and Teens who may have cancer

A five-month and 22-day-old child was brought in by his parents due to a rapidly growing mass on the right side of his stomach. The child had a history of being on antibiotics before admission. Doctors performed a biopsy and other tests to check for possible causes, confirming a Malignant Rhabdoid Tumour in his abdomen. The parents were informed that chemotherapy was not feasible due to the rarity of the tumour, and the child was transitioned to palliative care. His parents had strong beliefs in traditional medication and felt that it would help him to get treated using it, so they pleaded with surgeons to only remove the tumour and stabilise their child.They were made aware of the risks of this procedure, but the parents committed that they would take responsibility and heal the cancer post the operation. The mother, a traditional healer of cancer and father, a pharmacist believed they were bewitched, and their child’s tumour is a result of witchcraft. 

After his successful tumour removal surgery, it was discovered that the child not only had the tumour but also a severe infection affecting multiple organs, including the brain, liver, kidneys, and heart. His condition deteriorated rapidly with sepsis in the lungs and blood, leading to cardiac arrest. Despite resuscitation efforts, the child’s organs failed to recover fully, and the critical care team conveyed that further interventions were futile.

Sadly, the child passed away in the critical care ward. His family was devasted as he was still young, and they had hopes that their traditional methods would help him recover. The family was offered psychosocial support, and bereavement counselling. The father expressed gratitude for the support provided by CHOC throughout their journey, particularly from the Psychosocial Team. He pledged to stay connected with other families affected by childhood cancer to navigate life after loss, expressing thanks to the entire medical team for their compassionate care and support.

This devastating case underscores the critical importance of recognising the Early Warning Signs of Childhood Cancer. Prompt identification and diagnosis can significantly improve outcomes and potentially save lives. CHOC provides valuable resources and information on recognising these signs, empowering parents, and caregivers to seek timely medical attention for suspicious symptoms.

To learn more about the Childhood Cancer Early Warning Signs and how they can make a difference, visit CHOC’s website: Childhood Cancer Early Warning Signs. 

Early detection can be the first step towards effective treatment and better outcomes for children and teenagers facing cancer.