The Battleground
Photo by Stijn Swinnen on Unsplash
What do you think of when you imagine a battleground? Some might think of a boardroom or a courtroom whirling in strategy. Or, in a pre-Covid world, perhaps a sporting field alive with cheering crowds, grass stains and sweat. For some it is a tight grip on their invincible controller as they conquer a virtual and violent landscape from their cosy loungeroom. These battlegrounds are about competition, winning, crowning a champion.
Traditionally, when I think of a battleground I think of Europe. I think of brown mud, the numbing cold, the explosions and gunshots echoing across a cratered field. Others might think of Asia. Dense green jungle, the sticky heat, explosions and gunshots this time coming from hidden pockets under their feet. The enemy is far from sight or secretly watching from above but either way there is always an enemy. And it does not negotiate. No call for humanity or truce. These battlegrounds are about life and death and suffering. About
fear and courage and holding back the dark.
There is another battleground I’ve seen and it feels nothing like these. It is clean, white, quiet. The silence punctuated with clinical bleeps from a fluids machine and the soft requests from nurses. The sheets are cold and starched covering the bed which holds a prisoner of war. This is a children’s oncology ward, yet still a battleground. It is a battleground that is also about life and death and suffering. The enemy is still hidden from sight and still …there is no voice of reason willing to bargain with me even, though I offer myself in exchange.
September is Childhood Cancer Awareness Month and so I am confronted by the memories of Tom’s time in treatment as he took on the enemy of the ‘egg in his head’. The malignant cancerous mass that threatened to take him from me for so many months. Many know Tom’s story in a general sense but not the day-to-day war he forged. In the interest of awareness for those might not know what happens to a child with cancer, brain cancer in Tom’s case, I feel the need to share this particular battle ground.
I found a small certificate from the clinic who drew Tom’s blood for his first blood test when I became concerned about his energy levels. He was so brave that day. Holding that certificate and sucking on that lolly, he was a proud as I was that he’d managed to get through this big challenge. Months later we would find ourselves in the Emergency room at the QLD Children’s Hospital awaiting an MRI that would change our lives. That small blood test would eventually be dwarfed by what was to come.
We had a declared enemy called cancer: medulloblastoma. The most commonly diagnosed paediatric brain tumour and it had come for my son. The battleground was in Tom’s head and spine – the territory favoured by this particular adversary. Tom would spend eight months firmly encamped in that hospital. The first strategy in our battle plan was ‘extraction’. Thomas endured three neurosurgeries in the space of two weeks just before Christmas in 2017. An EVD was introduced first, then a resection procedure to remove his tumour and finally the permanent insertion of a shunt.
His holiday plans of sunshine and swimming were gone without notice. Thomas awoke from his second surgery unable to move his muscles, to speak, to swallow - to do anything. Still today I can’t imagine his fear. December brought with it a bombshell of diagnosis and a devastating physical assault that he would need years to fully recover from. December brought weeks of extreme agitation and distress as Tom screamed and writhed in his bed most of the time he was awake. Whether it was pain or fear or frustration, it was soul crushing to see.
There was little time to rest following this setback. Nuclear warfare was next in the arsenal with 30 rounds of radiation prescribed which would begin days after his 7th birthday. No party to celebrate, no candles for 2018. His facial muscles were still uncontrollable and no chance at eating or speaking. No cake. No smiles for the camera. He had a PIC line inserted into his arm to assist with the anaesthetic he would require as well as a more permanent option to a cannula. I wasn’t sure what he understood at that time, or how intense his pain was. It was like he wasn’t even there some of the time.
February and March saw some improvement in our days. Tom had found some ways to communicate and the MRI showed no new evidence of disease. Nausea and vomiting were his constant companions though as he underwent full general anaesthetic each day.
In the afternoon, groggy and tired, Tom was asked to try new therapies to work on regaining his motor control. With a new wheelchair, he worked hard in the afternoons. Just holding his head up was a massive achievement. Moving his hand mere centimetres took immense concentration as his brain struggled to find where each pathway led to each little muscle. At the end of each day he’d be wrecked.
MRI scans, lumbar punctures and blood tests all showed all was quiet on the front. No movement from the enemy. It would not be enough – to be sure, the enemy had to be sought out in any possible foxhole and destroyed and so April brought with it the new weapon in the fight.
Chemical warfare was our final play. Chemotherapy – 4 rounds, each lasting 28 days. Drugs such as Vincristine, Cyclophosphomide, Cisplatin were lined up to leave no trace of this medulloblastoma. The ‘support’ drugs Amifostine and Mesna were also on board to hopefully provide some armour to his organs along the way.
The side effects of Tom’s treatment hit him harder than some other kids on the same protocol. Tom suffered severe neutropenia which meant that his immunity was heavily impacted in each round. This led to infections and on a number of occasions Tom was sent to the PICU (Paediatric Intensive Care Unit). He was given countless blood and platelet transfusions to improve his recovery and through it all, Tom was so sick. Vomiting was constant and he complained of a burning throat and stomach throughout those months. All the while working on his rehabilitation therapy, school work and managing his fatigue.
The hardest working soldier you’ve seen. The bravest. The kindest. Through it all Tom forgave my impatience. He endured every order the doctors issued and still found a smile to brighten my day. There were some things that broke my heart more than others. Every time he vomited up his nasogastric tube and had to suffer its reinsertion. He screamed and I held him down.
Every time they changed the dressing on his PIC line and then his Central line (access point through his chest) his skin would be raw with the sting of removing the adhesives. Tom would cry through so many of those dressing changes regardless of how careful the nurses were in their work. His skin was so sensitive to the pain and those times have scarred my soul. Still I held him down.
Just as in war, there are times of reprieve. Cease-fire or receiving a furlough for R & R. Our days adventuring out of the hospital to the park, brief visits home and even just recovery time when Tom wouldn’t feel as sick. How fortunate that I could stay with Tom. Moving into his room, playing games and reading with him, getting to know my son better than I ever had. I treasure his cheeky jokes, listening and dancing to music and especially our cuddles in his bed. The visits from pet therapy, costumed larrikins and family made for some really special days.
An MRI scan follows the final chemo round to judge the winner of the war. The battleground was assessed and in early August of 2018 and Tom was declared triumphant. He rang the victory bell surrounded by his comrades and supporters.
Little did we know the enemy was merely regrouping. Within three months of ringing that bell, the enemy had returned with greater vigour and aggression than ever before and with little left in our arsenal, Tom was overcome less than two months later.
Soldiers are revered in their country for bravery, sacrifice and heroism in life and in death. Tom’s war ran for 13 months and he gave it everything. What feats he achieved! What an inspirational hero to have! His persistence, his grit, his endurance was valiant. He embodied the courage and power of the superhero shirts he wore so proudly and although the battleground was taken, to me his efforts of bravery and determination remain.
So, as I finish with this tale of my mighty soldier, I want to remind you that this is just one story. There are thousands of these little soldiers across the world deep in their fight against cancer. Their stories are important and should be shared, even if it hurts. They are our babies and it’s not good enough that we lose so many every year (see some Australian statistics and funding information listed below). So in the interest of the ‘squeaky wheel getting the grease’ – it’s important to educate, advocate and promote awareness of the oncology battles our children are fighting.
Go Gold for Childhood Cancer Awareness!
Here are some statistics specific to Australian childhood cancer.
It is estimated that, on average, about 750 children aged 0-14 are diagnosed with cancer each year in Australia.
Leukemias are the most common type of cancer diagnosed among Australian children,
accounting for about one third (33%) of all cases, followed by tumours of the central nervous system (mainly brain tumours) which were responsible for 25% of all diagnoses and lymphomas which accounted for a further 10%.Almost half (48%) of all children diagnosed with cancer in Australia were aged 0-4 at diagnosis, with a median age of 5 years.
After adjusting for changes in the population, the incidence rate of all childhood cancers combined in Australia has increased significantly by a total of 35% between 1983 and 2014.
There is an average of 101 cancer deaths per year for children under the age of 15 in Australia. Relapse cancer has a much smaller chance of survival than that of first diagnosis.
Tumours of the central nervous system (mainly brain tumours) account for the largest number of cancer deaths for children in Australia (39%), followed by leukemias (22%) and neuroblastoma (13%).
Funding:
The Australian Government announced funding of $5.8 million to Cancer Australia in the 2017-2018 Budget to fight childhood cancer through increased research capacity to advance the diagnosis, treatment, management and analysis of childhood cancer, improve outcomes for low survival childhood cancer, and to improve data and awareness. This amount is only 3% of the full funding package dedicated to cancer research ($187 million). Private organisations, charities and research teams in the fight against paediatric cancers look for private funding and donations to continue their work.
Sources:
https://www.canceraustralia.gov.au/research-data/research/cancer-research-australia