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.

Joel and family

In October 2003, my life took an unexpected turn when I received life-altering news about my 23-year-old son, Joel. He was diagnosed with Acute Lymphoblastic Leukemia, and as a father, my world was shattered. Balancing emotions with the challenges we faced became crucial for Joel’s wellbeing.

My wife, Dashnee, our older child, Rhea, and I had to readjust our lives to accommodate the new normal. This included chemotherapy, lumbar punctures, hospital stays, and frequent visits to day clinics. Throughout it all, I strived to create a comfortable environment for our family. Though the pain was evident, we remained resilient, united by our unwavering focus on Joel’s treatment.

Joel, at the tender age of 4, underwent the treatment without any complications. We stayed strong, knowing that our primary goal was his recovery. After three years, he successfully completed his treatment. Fast forward to the present, Joel, now 23 years old, proudly graduated with a business science degree and completed his internship with Edward Snell in 2021.

Joel’s journey granted him a second chance at life, and he carries that gratitude with him always.

Eugene, CHOC Board Member

Lorenzo

In July 2020, we arrived at the CHOC Tygerberg Lodge when my child was diagnosed with Aplastic Anemia. Over the course of two years, as my child underwent treatment and regular check-ups, we relied on CHOC’s services. Unfortunately, in 2023, the cancer resurfaced. Extensive tests, including bone marrow extraction, were conducted, confirming the presence of bone marrow leukemia. This news devastated my family and me. In May 2023, my child began the first round of chemotherapy but fell ill during the hospital stay, leading to an extended hospitalisation. This experience broke my heart, but I had to summon inner strength for my child, seeking solace and resilience through prayer.
 
As my son required ongoing treatment at Tygerberg Hospital, we were directed to the CHOC Childhood Cancer Foundation SA for accommodation. Upon arrival, we were warmly welcomed and instantly felt at home. Aunty Marilyn’s kindness provided a comforting presence, and the dedicated staff further eased our worries. At CHOC, I momentarily forgot my own challenges as they embraced us like family. The well-appointed bedrooms and communal lounge allowed for relaxation, TV watching, conversations, and laughter. The connections forged at CHOC are truly invaluable. My son, Lorenzo, felt secure, welcomed, and had the opportunity to enjoy the company of other children.
 
I extend my deepest gratitude to the CHOC Childhood Cancer Foundation for their unwavering support to families impacted by childhood cancer. The lodges genuinely replicate the feeling of a “home away from home.” It’s a place where individuals facing similar challenges can unite, navigating the journey as one united family. I want to express my heartfelt thanks to Aunty Marilyn and the entire staff at CHOC Tygerberg Lodge for their remarkable care and compassion.
 
 

Franklyn and Ronell

I am Ronell, and I am the mother of Franklyn.
Franklyn experienced two weeks of persistent headaches and vomiting. We initially sought help at the local clinic and then consulted a doctor who suspected it might be either an ear or stomach infection. On July 9, 2023, as I tried to wake him up, it became evident that he couldn’t respond, prompting us to rush him to Paarl Hospital. All initial tests yielded negative results, but we had to wait until Monday for hospital scans. On July 11, 2023, the scan results unveiled a brain tumor in Franklyn. In a hurry, we were transferred to Tygerberg Hospital, arriving at 09:00 a.m. Further tests were conducted, and after a surgical procedure, he was diagnosed with a malignant tumor.
Franklyn commenced treatment on August 17, 2023. Around the 7th of August, we were relocated to the CHOC Tygerberg Lodge, where we were warmly welcomed. Despite the heartbreak and constant worry about the future, staying here feels like a respite, akin to being on vacation. I extend my heartfelt gratitude to the CHOC Childhood Cancer Foundation for their invaluable support during this challenging period.

Nolita Ndletye – Nutrition / Food Parcel Story

My name is Nolita Ndletye or maiden name Nosiphelo Langa; my child’s name Masibulele Langa.  We are from Ngqesheni (village) near Mount Frere Town. Masibulele was diagnosed with cancer in 2020. He had a big lump on the left side of his cheek. It looked so bad that people thought he was bewitched. It took 2 years for Masibulele to receive treatment; we were at our local hospital for a very long time without any help. We have been coming to Frere hospital regularly for check-ups and there hasn’t been any bad news. Masibulele is going to a remedial school because he is a slow learner; but we are thankful for his life. Life is slowly getting back to normality because I am working as a home-based career at an old age home. We have received great support and guidance from the Frere Medical team and most importantly CHOC staff members.

I will forever be grateful for everyone done for my family. I thank CHOC for the great initiative of giving the families the food parcels. I was shocked when I was handed the very heavy food parcel; I wasn’t expecting anything. Life is very hard in our villages; people are suffering with no jobs, no water, no food, and no government support. CHOC shows that they care for the vulnerable and poor. This food parcels means I must worry about meat for this week. I thank the Frere medical team. I am forever grateful to CHOC staff for the support and care but most importantly for loving our children. We really feel at home; our troubles are less.