Craig had his second surgery when he was four and this was when his tonsils and adenoids were removed without any complications.
Then I noticed that he was developing more and more of these brown marks. We were referred to a professor of dermatology at the Groote Schuur academic hospital in Cape Town where they did a biopsy on the marks. I remember Craig screaming when they did it.
Craig developed a huge café au lait mark on his neck and then I noticed this lump on the left front of his head that just seemed to be getting bigger. I was petrified. We went to a general surgeon who told us that he would not personally remove what we thought was a plexi-fibroma engrained in the scalp. He felt the surgery was more suited to the work of a plastic surgeon should it become necessary. I started to get very concerned, wondering where this would all be going if that lump kept on growing. And then it started to become real to me that Craig was not a normal child and that things could go terribly wrong.
And then they did.
Craig would often complain that his head was sore. I used to put a wet cloth on his forehead and give him a painkiller. On these occasions, I’d put him down and he would suddenly projectile vomit. He’d want to lie down in his bedroom with the curtains drawn. He was clearly sensitive to light. I thought at the time: “This can’t be right, there must be something wrong.”
Craig was attending a pre-primary school in Sunridge Park at that stage. He was never really happy going there on his own but we had to do it.
One day the principal called us and said that Craig was not reaching the developmental milestones and that we should have him tested. We were later advised to enrol him at Cape Recife School, which catered for children with normal intelligence but with special needs.
Craig’s speech was very nasal, and the kids used to tease him about it. Our first visit to the Red Cross Children’s Hospital in Cape Town was to have his nasal speech examined and although a plastic surgeon spoke about likely surgery, more serious medical problems overtook this impediment, which was to receive no further attention.
We spoke to a general practitioner about Craig’s health who told us that he thought Craig was just “performing” because he didn’t want to go to school. But I instinctively knew something was very wrong.
Then one morning Craig said that his bedroom light was spinning and later in the day the school called to say that Craig had developed a squint and that I should come and fetch him and take him to a doctor as soon as possible. There was a new paediatrician, Dr John Wickens, in Port Elizabeth who we had already been referred to but not yet seen. Neville was away on business in Johannesburg at the time and the next morning the three of us saw Dr Wickens.
Dr Wickens must have spent two hours examining Craig. He asked him to walk on a straight line but he couldn’t. He phoned a professor at the Red Cross Hospital in Cape Town and told us that we had to get ready to go there immediately.
I can remember leaving the building with Craig and feeling utterly terrified.
And that was when it started.
They did this scan at the hospital and I can remember someone coming out and asking Neville if Craig ever had a discharge from his ear. I remember thinking that something was seriously wrong here. Then someone else came out and told us that they found a brain tumour, a cerebellar astrocytoma, and that it would have to be removed.
It explained a lot of things to me: the headaches, the sensitivity to light, the projectile vomiting. But I just couldn’t think then when they told me that they would have to remove it. I knew that they would have to cut into my son’s head. We had to wait a while before the operation and Neville’s mom flew up from PE to be with us but had to return the next day. I just felt my whole world shattering.
Neville has always been good with this sort of thing, very practical, and he talked to Craig. Explained to him that there was something in his head that needed to be taken out. Craig just accepted it.
I tried not to show how frightened I was. I had to be strong for him. Craig was allowed to spend a day in Cape Town and we took him to a few places, like the World of Birds in Hout Bay, before he was admitted. But he didn’t enjoy it. He was too sick.
We saw the neurosurgeon and he told us that he was going to operate, that it would be a delicate procedure and that it was not without substantial risk. If things went really wrong, Craig could even be paralysed or worse. I just remember saying to him, “I don’t care if Craig is paralysed or whatever, just see to it that he comes out alive because he is our only child.” You see, I had my tubes tied some time after we were advised by a geneticist that it was best for us to have no more children. Either one of us carried the gene responsible for NF1 or it was a mutation but there was no certainty.
The surgeons reassured us that they would do their best. It was emotionally excruciating for me when we had to leave Craig at the hospital. He had never been separated from us. And when they had to take him through to surgery, Neville had to go with him. I just couldn’t do it.
They told us it was going to be a very long operation. I was an emotional wreck. They
