Little Fighters Cancer Trust

Little fighters stories:

 

Please feel free to read all the stories of our little fighters. PLEASE NOTE: Not all the photographs in our Little Fighters Albums are nice to look at. Some of the photographs depict the horrid realities of Childhood Cancer. Sensitive viewers should be mindful.

Reef Carneson


Reef Carneson was diagnosed with Acute Lymphoblastic Leukemia at the age of 5 months. We thank God daily for the miracle that is Reef as well as for all his caregivers, doctors and the public who unfailingly have donated platelets to keep this brave little boy alive.

Reef Carneson was diagnosed with Acute Lymphoblastic Leukemia at the age of 5 months – this at a routine pediatric check up. He was sent by ambulance from the doctors rooms to Donald Gordon Medical Centre. We were met by a lady oncologist who did not mince her words and we were told the horrible news. She further stated that his chances were not good as he had an extremely high white cell count (200,000) and further was under the age of 6 months – all of which were against his chances of survival.

A month into the Chemotherapy treatment Reef went into renal failure and had to be rushed to Morningside I.C.U. and put on dialysis which he survived He then returned to D.G.M.C. and continued with an extremely aggressive protocol of chemotherapy.

Approximately 3 months into his treatment he started seizing and these seizures could not be brought under control for 3 hours. He was again rushed to I.C.U. at Garden City Clinic and treated for "epilepsy".

Back at Donald Gordon he completed his chemo but as he had not gone into remission after the induction period it was decided that a bone marrow transplant would have to be performed and the search began for a suitable donor. No match was found amongst on the S.A. Bone marrow registry and so the search continued overseas and 100% match was found in Germany.

He was transferred to Unitas Hospital under Dr. Reynders and his port removed and a triple Hickman line inserted. His bone marrow was killed off completely with aggressive therapy and he was placed in isolation.

It was after this that Reef’s problems escalated. His little body swelled up with fluid to the point where he could hardly see out of his eyes and was unable to sit. Fluid also began to fill his lungs. His appetite disappeared and it was a battle to feed him. He was on so many intravenous medications that his liver started to take strain. He also developed chronic graft versus host disease which had been explained could be fatal.

He spent his first birthday in isolation and was very ill indeed. Having previously thought that he had been through the worst and the actual bone marrow transplant would be a breeze, we were horrified at how ill he became.

One morning his blood pressure started to drop severely and he was rushed back to Garden City Clinic – It was discovered that he had gone into septic shock due to an infection in the very lines that were keeping him alive. The Hickman lines were removed from his chest and he was put onto a ventilator. He once again swelled up beyond recognition, developed a Klebsiella virus as well as a fungal infection in his blood. His graft versus host disease became so bad at this time that blisters formed all over his little body which opened into suppurating sores. Every time the tried to turn him, his little face would get stuck to the pillow and he would start to bleed all over again. A Professor Modi was called in to see him with regard to this and he diagnosed his skin condition as Steven Johnsons disease (which thank God proved to be wrong at a skin biopsy done later) He started seizing again for 3 hour spells and no amount of "epilepsy" medication brought this under control.

It was decided to take Reef to a Neurologist to check up on the seizures. It was then discovered that he did not in fact have epilepsy at all, but had bilateral sub"dural bleeds on the brain from allowing his platelets to get too low " another huge shock to all concerned. Reef for almost a year has needed platelets every three days to keep his platelets above 50 and to prevent further bleeds on the brain.

Reef at present shows no signs of cancer, but graft versus host disease, lack of appetite and weight loss as well as damage to his liver present a huge problem. It looks as though Reef’s platelets are now finally engrafting and he has not needed platelets for almost 6 weeks now. God knows what we would have done without the hundreds of caring people who donated platelets for him regularly.

Reef is the youngest baby to undergo bone marrow transplant in South Africa. Reef is unable to straighten his fingers or clench his fists due to skin thickening and tightening from the GVHD which is also affecting his feet and he has reduced mobility because of this. The itching is severe and he is unable to sleep at night. Just screams and scratches. Reef is still unable to say even one word and is still being fed through a syringe (pureed veggies and fruit). Due to naso–gastric tube feeding for so long, he seems to have forgotten how to chew and swallow solid food. As nothing is know about CGVHD disease in children in this country there seems to be no help for him.

We thank God daily for the miracle that is Reef as well as for all his caregivers, doctors and the public who unfailingly have donated platelets to keep this brave little boy alive.


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2017/04/29