Casper is only 33 weeks old and he and his mother are in great danger. He is not even born yet and he has already had chemo as his mother has two brain tumours. His older brother Victor was born at 28 weeks in October and only lived 3 hours.( https://pbase.com/tessajoughin/baby_victor__a_fleeting_moment_in_our_lives )

Casper is not even his real name, it is his nickname until he is born. Then his dad Dan and his mum Helen, (affectionately known as Melly to her family), will name him. When Melly was 22 weeks pregnant they discovered that she had the two brain tumours. She has had two bouts of chemotherapy to stop the tumours from growing and to give Casper time to mature enough to survive outside the womb.

The doctors have decided that from 33 weeks it should be possible for him to survive so he will be delivered tomorrow on Wednesday the 15 th of July by Cesarean section and then Helen will have brain surgery on Saturday. We don't know how this tale will end but this is Casper, Melly and Dan's story. I will be adding to it as events unfold. Casper is my grandson.

Carl Michael was born on the 15th of July 2009 at 13.15. The wonderful news is that an MRI done two days after Carl's birth showed that Melly's tumours have shrunk so dramatically with the chemo that she does not have to have immediate surgery. She is having a stronger dose of chemo in two rounds, three weeks apart and then they will re-assess her before deciding what radiation she will have.

Carl was discovered to have a genetic defect, so two days after his birth he had to have a colostomy done. Melly had more chemo on the 24th and her out-of-town siblings flew in from Cape Town and London to surprise her.

When he was 13 days old, tests revealed that he also has a genetic heart defect known as Tetrology of Fallot, so, at two weeks, he was rushed in a special ICU ambulance, up to a paediatric heart specialist in Sunninghill, a Johannesburg hospital. It was decided that he was too small and fragile for heart surgery so he is being kept under observation in the ICU. He developed an infection of the colon (NEC - Necrotizing Enterocolitis) at three weeks and was critical for a few days. But he is hanging on to life, our brave little boy. Carl's daddy is Swedish and his son is a real little Viking!

Since he has been in Johannesburg we attended a wonderful Cancer Benefit Concert with the Parlotones arranged by my nephew Jared Wilson at his parent's Wedding and Conference Centre, Pecanwood in Birnamwood, Howick. We thank them all.

Little Carl did not make it. He died on the morning of the 25th of August from NEC.

I went home to the Free State and then we travelled up to Johannesburg to visit Melly and Dan and to see little Carl when he was almost 6 weeks old. He seemed to be doing so well but he looked very gaunt when we saw him on the Sunday. When we came into the ward he looked right at us with wide open eyes and seemed to be very interested in his grandpa. Dan sang to him in Swedish when he became fretful and he calmed down.

On the Tuesday morning they phoned Melly and Dan and told them to come quickly as he was not doing well but he died before they could get there. The NEC had flared up in the night and spread very rapidly. He was such a brave little boy who put up a great fight against great odds. Rest in Peace, our little Viking.

Melly has started two more rounds of chemo and then she will have radiation.