Sunday, 13 January 2013

Not just any birthday

This weekend is one of special celebration. A young man will turn 30. While it’s an everyday event, for me it’s a massive milestone; one that I was terrified might never be reached. The young man in question is my son Daniel, a childhood cancer survivor. His tale is one of the astonishing courage that children summon in the most extraordinary circumstances. I remain in awe of his attitude and clarity throughout his nine-year-old’s two year journey through chemotherapy and invasive interventions and at his capacity to keep smiling despite the pain and discomfort he was experiencing. 

This is a snapshot of that chapter of his life. 

Late January 1992. Dan has just turned nine, his brother seven. The summer holidays have lost their appeal for the children under the strain by my recent marriage breakdown. I’m shedding tears and weight; preoccupied by fear of what the future may hold. One morning, Dan tells me that his arm is sore. Distracted I ask a few questions and Dan reveals the pain is inside his left armpit. ‘I fell off my bike, mum.’ As I poke my fingers into his armpit, they press against a lump, about the size of a blood plum. Dan flinches slightly while my world grinds to a stop. I reach to the other armpit. No lump. An echo of a scrap of medical information comes to mind, something about infections being bilateral. I know something is seriously wrong. We go to the GP. He immediately makes a referral to a paediatric
surgeon who organises a biopsy at the Royal Children’s Hospital. It happens overnight.

I pace the waiting room while Dan recovers from the biopsy when I get word that my grandmother, his great grandmother is dying. I am torn between the two hospitals. Dan is sent home with antibiotics and in pain. The biopsy results will take a few days. I make the poor decision not to let him know about his great grandmother’s funeral. Afterwards, I don’t even have time to change from my funeral black when the call comes from the RCH. The test results indicate that Dan has Non-Hodgkin’s Lymphoma. He needs to start immediate staging tests and chemotherapy within the week. Someone takes the phone from me while I scream resistance. But Dan doesn’t flinch. He takes his fate in stride. But when he finds out about the missed funeral his anger is palpable. He only forgives me when I take him to the grave some months later. There, a little bald headed boy sobs for his great-grandmother and I am made small with shame. 

We spend six months in and out of the RCH. Dan’s hair falls out in clumps. His body balloons with steroid treatment. Dan wants all the details from the doctor; the names of the drugs, the amounts being administered, the sequence in which this will be done. Once all his questions are answered he is satisfied to go on. 

In between treatments his white cell count drops, infections set in and raging fever invariably sends us back to hospital, usually in the middle of the night. Admission is via the Emergency Department and depending on their workload we can wait for hours before making it to the ward. There Dan is put on a wide spectrum antibiotic drip, blood tests done to see if the particular infection can be determine. In one instance he presents with massive lumps all over his body. The oncologist explains that it is likely to be an infection originating from a common bacteria that in normal circumstances a healthy immune system would dispose of simply. It had not occurred to me that due to a compromised immune system, infection could be the killer rather than the cancer itself. On most of those days I sleep on the floor next to his bed or in a nearby chair, leaving early in the morning to go home, shower then to work.

On one such occasion I come back to the hospital to find him standing at the cot of another patient; a toddler of about 18-months of age. Dan is singing him a nursery rhyme. Dan explains that he at nine can cope with cancer but this little boy is too small to understand and ‘we need to help him feel better’. Just then the electric pump that is pumping chemo drugs into Dan’s veins sounds. ‘It’s time to change my bag,’ he says to the nurse when she responds. He wants her to hurry so he can get back to his young neighbour.

Every few months we get the Challenge Cancer Support Network magazine. The list of the kids who didn’t make it is printed on the back page. Some editions I can’t bear to pick up.

After six months Dan is in remission. It is around August and he looks forward to his hair returning. Little did we know that before the coming Christmas he would be in an even more aggressive protocol of treatment when the cancer returns; this time it grows in muscle tissue and has spread into other lymph cells.

Fortnightly he has chemotherapy and a lumbar puncture which requires Ketamin as the anesthetic. Each time he comes out of it hallucinating and tells me I'm a monster with several heads. I feel like one too; distraught that I can’t stop this horror in his life. Again his hair falls out; this time overnight while he is at a fishing camp with Challenge. ‘I left it all on the pillow,’ he says. ‘And I left a trout in Mathew’s (a volunteer) backpack.’ In spite of everything he hadn’t lost his sense of humour.

A ‘port-a-cath’ is inserted though an incision in his neck and sits just above his breast bone. It will make access to his blood stream easier than finding his veins which are already scarring. The drugs affect his balance. He can’t walk long distances and constantly suffers sprained ankles. After treatment sessions he is ill and exhausted for days. One day, Dan talks about his possible death, a conversation no parent wants to have with a nine year old. He is realistic and stoic and I can’t imagine from where his strength comes. I don't feel that I have any. I struggle to keep his distressed little brother buoyant as well as to care for Dan. My parents and close friends are there with practical support and attentive ears. Somehow we limp to the end of the treatment regime.

The doctors determine that Dan is in remission again but hope has taken a beating and I sob for hours, torn between joy and fear that this may be only a short respite like last time. Dan continues to have check-ups once a month then six-weekly, three-monthly until finally it extends out for year. Years later he has his last check up which I don’t attend as I await heart surgery and can’t walk for any distance. Shortly afterwards, Dan takes on a chef’s apprenticeship and looks after the family cooking while I have surgery and recover. At this stage, my mother has terminal cancer and Dan becomes her ally. The understanding between them did not need words.

Doctors tell Dan that the weight he gained as result of treatment is unlikely to be shifted. Dan’s stubborn streak comes to the fore. Quietly he begins a regime of exercise and manages his food intake, studying up on what works and what doesn’t. He drops thirty kilos on his own. Eventually he quits working in hospitality and becomes a fitness trainer. Yet, when I look at the tall, fit man he has become, I still see a brave little boy with no hair and a massive smile.

His cancer story is not something he shares with many but in secondary school his class is given an assignment: a short talk on a significant event in your life. Most of the boys have dramatic stories but when Dan speaks he shocks even the teacher. She tells me later that a hush fell over the class and most students dropped their chins to their desks. The ability to stun a group of Year 9 boys into silence can’t be underestimated. If ever he speaks of cancer these days he refers to it simply as ‘my treatment’ and jokes about the many related scars on his body. 

So when its time for the speeches at Dan’s 30th, he won’t say anything about his ‘treatment’ he won’t see the significance in the same way a mum fearing loss of a child does. For him, it’s just something that is the backdrop to a few years of his life. Dan is too modest recognise his bravery. But I do. I’ll be celebrating that he’s here with us. I’ll be celebrating all that he has taught about acceptance, courage and the capacity of a child's heart.

I’ll be celebrating my hero. Happy Birthday, son.