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.
At 16 months, my granddaughter still can’t form many
words. Her motor skills are still developing and she has only just graduated
from crawling to navigating the world on two feet. She may be tentative in her
early attempts at balancing, but she doesn't give up. Often she moves
hesitatingly, stretching out to grasp someone’s hand or to lean on a piece of
furniture for reassurance. Even when she falls, she gets up and tries again.
Last week, she managed a zombie-like walk with hands outstretched. It made us laugh,
but she didn't let our laughter dampen her resolve. Toddlers get up no matter
how many times they fall down, unlike adults who often attempt something once. If it doesn't go our way, we decide never to try again. Toddlers don't do
that. If they can’t get at it one way, they find another. They look at things
from different angles, testing every practical strategy they can come up with.
They have inbuilt determination and persistence. Just ask any parent.
