Save baby Reef
Reef Carneson was diagnosed with Acute Lymphoblastic Leukemia at the age of 5 months - this at a routine pediatric check up (our first miracle). 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 and further was under the age of 6 month - all of which were against his survival.
Lydia and Ryan (his mom and dad) never went home again to their dream home. Arrangements were made to pack up everything and put it into storage. Reef's personal items were collected and brought to the hospital where Mom and Dad stayed with him. The whole family gathered on the roof top until the early hours of the morning and faces of shock and sadness surrounded us.
A month into his Chemotherapy treatment Reef went into renal failure and had to be rushed to Morningside I.C.U. and put on dialysis, which, thankfully he survived (our second miracle). 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 D.G.M.C. 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. When it was discovered that there were no suitable matches for him in South Africa we were told that R360,000 had to be raised in a matter of 3 months to cover the cost of testing, harvesting and delivering an oversees donor's bone marrow. Within two month the money was raised (our third miracle) by an awesome community via Facebook, newspaper articles and the 702 birthday wish list together with Dischem and on top of this a 100% match was found in Germany (our fourth miracle).
Now the race was on to get all this organised and get Reef into remission in time for the transplant. He was transferred to Unitas Hospital 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 graft versus host disease, which had been explained to us could be fatal. Reef 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 ‚?? we prayed as we have never prayed during that ambulance ride that he would make it to the I.C.U. unit to get help. 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 they tried to turn him, his little face would get stuck to the pillow and he would start to bleed all over again. He started seizing again for 3 hour spells and no amount of "epilepsy" medication brought this under control.
We have tried very hard to keep our faith strong during this horrible journey, but am ashamed to say that we really did not think he would make it out of I.C.U., but God provided our fifth miracle and this strong, brave little baby went back to Unitas Paediatric Oncology in Pretoria. It was then decided to take Reef to a Neurologist to check up on the seizures. It was 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 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 and platelets, which have as yet not engrafted, present a huge problem. He has to report to Unitas Hospital every 3 - 4 days to receive platelets to prevent further bleeding on the brain.
After being directed to be transferred to Unitas Hospital, as this was the only place to undergo bone marrow transplant, the medical aid have, since January, changed their top plan and have refused to pay Reef‚??s bills in full and a 25% co-payment by his parents is mandatory. This bill at present is around R70,000 and it is making it impossible to continue his treatment under his oncologist, whom we have learnt to respect and know and feel safe with. This is really upsetting for his parents and is making the whole situation worse. His Ampath bill is at present around R10,000. Reef will shortly be on a new medical aid which hopefully will pay in full for the future Unitas Hospital visits, but these existing bills need to be addressed before Unitas Hospital will allow him to return there.
Reef, at the age of 20 months, is not yet able to crawl, stand, walk or speak as his muscles have wasted due to heavy steroid treatment for G.V.H.D. He will also require long term speech, occupational and physiotherapy which the medical aid will not cover. He is such a happy little guy that it is heartbreaking, but at the same time awe inspiring to see him smiling and laughing through this all.
PLEASE SMS ‚??REEF‚?Ě TO 42539 @ R30.00 per sms
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