SIX YEARS AGO, JUST DAYS AFTER HIS 13TH BIRTHDAY, CRAIG BROWN died of a brain tumour that was finally diagnosed after years of puzzling symptoms and behaviour. His mother, SUE BROWN (51), a physiotherapist from Newlands, Cape Town, describes the events that led to his death, what has kept her and the family going, and offers some advice on supporting others in similar agonising situations…
CRAIG WAS A RESTLESS, COLICKY BABY who became an intense and mercurial child, famous for spectacular tantrums. He could not have been more different from my first baby, Meg, who was peaceful and even tempered, and he humbled a mother who had been so smug the first time around!
But I soon settled into mothering both my children, practising as a part-time physiotherapist while my husband Neil worked full-time in the investment industry. Craig was known for his strong sense of right and wrong, and for not being afraid to share his opinions.
Enthusiast Craig Brown shortly before he was diagnosed with a terminal brain tumour. ‘I know he would be beaming to have people reading about him and his life’ says his mother Sue | Photo © Sue Brown
When he was 11 he started complaining of intermittent nausea. Our GP had known him since birth, and assessed him as being intensely competitive, referring him to a child psychologist for anxiety. Craig loved a captive audience so thoroughly enjoyed the sessions but, by the next year, the nausea was worse. He would sit at the bottom of the stairs in the morning, head in hands, not wanting to go to school. Even so, he was gaining weight and was constantly hungry.
I was dismayed to receive complaints from the mom of one of his friends that Craig was verbally bullying her son. He was not that kind of kid! We spoke at length with him about this, enlisted the help of the counsellor at his school, Bishops Prep, and took him back to the psychologist. Again I mentioned the nausea, which she ascribed to Craig being upset at being in trouble.
When Craig continued to malign his friend, behaviour-modifying medication was suggested. I was horrified that things had come to this, and was angry and frustrated with my now 12-year-old son. He just became tearful and distressed when I asked him what was wrong with him. One of his friends told the school counsellor this was not the Craig they knew. The counsellor said he seemed to be digging himself into a hole and couldn’t stop.
Craig mentioned that his teachers were angry with him about poor school work but I didn’t take it seriously. He was a high achiever and was allowed a little self-doubt. Looking at his books much later, the deterioration in his maths and English was dramatic. There were mistakes, messy deletions, pages pasted in askew, and he was pressing really hard with his pen. ‘What has happened?’ wrote one teacher. He had been given a dream role in the school play that year and the teachers said later that they thought he had just become big-headed.
Craig in full cry, Meg in the background: ‘This is how it was for Meg during Craig’s illness,’ says Sue. ‘Thank God for family and friends who took care of her when I couldn’t.’ | Photo © Sue Brown
It was as if we – his family, teachers, psychologist, GP and friends – were all looking at different parts of Craig during that year, and not putting them together to form the terrifying whole. His behavioural issues had distressed us terribly, but he was controlling himself much better since the ultimate humiliation of a social suspension at school, tough for a kid who was used to being part of a close-knit school community.
‘is craig okay?’
At the end of that year his nausea became vomiting. I took him to the GP yet again and he was given reflux medication which controlled it for most of December of 2010.
The week before Christmas he came in from the pool, white-faced and saying he had suddenly developed a really bad headache. He vomited, but seemed his usual self shortly afterwards. A week later he slept in until 11. ‘Is Craig okay?’ Meg asked. When he woke he mentioned a slight headache but rushed off with a friend. That afternoon, on their way home from the beach, he vomited in the car.
During that week I had noticed that the left side of his face had begun to droop, and when he got home that day it was much more obvious. Suddenly my brain put together the ongoing nausea, personality changes, poor school work, facial palsy and now the headaches and vomiting. The GP on call looked deeply concerned and confirmed that the optic discs in both Craig’s eyes were swollen, a sign of raised intracranial pressure. He was much sicker than his GP and psychologist had suspected.
An MRI at Vincent Pallotti Hospital the following day, the last day of 2010, showed a golf ball sized tumour in the middle of his brain. Despite the horror of the diagnosis there was also relief at finally understanding what was wrong with my child. For him it was a vindication! In the beginning I referred to it as ‘the tumour’ because I thought cancer was too scary a word to use. But Craig led the journey himself and introduced the word cancer. He said, ‘I’m a kid with cancer’, and got the word out there to have the conversations.
Neil took it upon himself to communicate the bad news of Craig’s diagnosis, something I myself found impossible to do.
When they were four: Sue, Neil, Craig and Meg | PHOTO © Sue Brown
Two neurosurgeons managed to remove 90% of the tumour. We were too euphoric that Craig had come through the lengthy brain surgery to fully assimilate the pathology results which cited a malignant tumour.
Twelve days later we woke to the sound of Craig vomiting yet again and feeling as if his head would burst. Emergency surgery that afternoon cleared the residual tumour and the accumulation of fluid it had caused. Recovery from the second surgery was slower and headaches and vomiting returned, as a result – perversely – of the now reduced intracranial pressures.
Craig had six weeks of daily radiation treatment. Life became very intense but it was, ironically, a life-affirming time. Despite increasing exhaustion, Craig managed to go on a school tour to KwaZulu-Natal in June, playing tennis and chess and getting back into his beloved marimba band. Two days after we returned from Durban, on Friday 17 June, he had his MRI scans. The date is seared into my memory because the scans showed multiple new tumours throughout his brain.
That hideous weekend Craig hugged me repeatedly, surprised his sister with a big kiss, and agonisingly insisted on buying his dad lunch for Father’s Day on the Sunday.
Early on the Monday morning Craig was vomiting and disorientated. On his way to Vincent Pallotti yet again, he told Neil that he thought he was dying, but told his dad not to worry. Then he lost consciousness and was rushed into surgery to relieve the pressure on his brain from a massive bleed caused by one of the rapidly-growing tumours. He was never to regain full consciousness and we made the heart breaking decision not to submit him to the rigours of chemotherapy in the vain hope of extending the last weeks of his semi-conscious life.
With his few words Craig asked to go home, but we needed help to manage his care, medication and tube feeding so for two weeks we went to a nearby hospice, St Luke’s, to prepare. It was deeply humbling for me to see the utter respect my son’s unique emotional and spiritual being was given there. It was an eye-opener for someone whose physio training back in the 80s had focused purely on the physical.
The Craig smile that Sue still sees in her dreams | Photos © Sue Brown
We were blessed in the wonderful friends and family who were able to walk alongside us in our pain. The teacher who brought sandwiches to Neil on the nights he stayed in ICU, and his squeamish colleague who hates hospitals, but still brought pizza to share with him in the waiting room. My friends who said, ‘What can I do?’, to whom I replied, ‘I have no idea’. When I’d call later, asking them to collect something from the pharmacy, or to come and sit with me when I suddenly felt I might fragment from fear, they were right there. My sister and all the moms who cared for my daughter when I couldn’t. My sister-in-law who organised all meals to be delivered to her house, from which she kept us stocked, saving me from having to answer the doorbell and be sociable.
There were also those who left simple notes in our postbox: I don’t know you well, but am thinking of you. Moms from the prayer group at Craig’s school who delivered an enormous box of treats: things to eat, that smelt nice, or were soothing to the touch, beautifully wrapped gifts which Meg and I relished like those starved of such comforts.
And Craig’s friends and teachers who came to sit at his bedside in the Hospice, and once he was back home. Who made a CD of his favourite music, and gave him a commentary of the soccer on TV even though they were unaware if he was hearing them or not. Every now and then he would surprise someone with a thumbs up or a knuckle punch, and make us all laugh.
Then there were all those, including our minister Chris, who understood that I would be paralysed with pain on Craig’s 13th birthday, and bravely came around uninvited with balloons, cake and cards to mark the day, and to pass the unbearable hours with us.
What was happening to Craig was beyond the worst case scenarios of the doctors, and way beyond our own worst nightmares. Yet I was struck by the glimmers of the transcendence of the human spirit: in Craig himself throughout his illness and in facing his death, and in the professionals and friends whose love and care surrounded us. The doctors taught me that although we were already grieving Craig’s condition, and his imminent death, these days while he was still with us were infinitely precious. Now I saw how the innate determination and persistence that had made him such a tough toddler to parent enabled him to cope with his cancer with such remarkable wit and grit: the paradox of experiencing an unquenchable light from a place of utter darkness.
Sue: ‘We call this the look, Craig with determination written all over his face. It made him a tough toddler to parent but this determination carried him through his illness and enabled him to face his own death with wit and grit’ | Photo © Sue Brown
The actual physical reality of his death was an experience that will forever be without words.
We have had to reconfigure ourselves as a family, to work out how to live meaningfully and rearrange ourselves around an enormous ‘Craig shaped hole’ as Meg puts it. We know that Craig, optimist and enthusiast, would want us to continue to find joy and celebrate him.
I think Meg has suffered the most. I knew I was emotionally unavailable to her at the most traumatic time in her life. My sister-in-law and Meg’s friends’ moms fetched and carried, fed and cared for my daughter when I couldn’t. She instinctively took on the added burden of protecting Neil and me from further pain, but I’m happy to say she is doing well now and is excited to have moved out and started the honours section of her degree.
I felt struck dumb before God once we knew that Craig was going to die. I felt self-pity and anger at God’s absolute ‘no’ to all my desperate prayers for my son’s healing. Six years later I am profoundly grateful to have been entrusted with the miracles of both my children, who I now understand always belonged to God, not me. The agonising experience of having to accept that Craig was going to die – the personal reality of yet not my will, but yours be done – has ultimately led me to a deeper faith.
my subconscious has stored him
These six years without Craig’s physical presence have felt like slowly climbing the first six levels of a spiral staircase. Each is thankfully a bit easier than the one before, yet takes me again through the events of 2011. Even when not consciously remembering the obvious anniversaries I dream more often of him then, and love that my subconscious has stored the feeling of his proximity, his voice and his huge smile.
I wrote a book about his life, The Twinkling of an Eye, and know he would be beaming to have so many people reading about him and his life, and would have expected no less of me. I also volunteer at St.Luke’s Hospice in Cape Town, believing passionately that all dealing with incurable illness should have the same impeccable and life-affirming care that Craig and we as his family had.
I have been blessed to have experienced the mystery that is described in Tolkien’s The Lord of the Rings: ‘There, peeping among the cloud-wrack above a dark tor high up in the mountains, Sam saw a white star twinkle for a while. The beauty of it smote his heart, as he looked up out of the forsaken land, and hope returned to him. For like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing: there was light and high beauty for ever beyond its reach.’