United for Aaron
AARON Tanner had always been an active, cheeky child.
His boundless energy and sense of humour reflected in his easy ability to make friends. He was never the quiet child, ever the social butterfly, and gravitated towards adventure and fun.
But the Toora boy spent his recent 11th birthday in a hospital bed, a shadow of his former self, in size and spirit.
Chemotherapy for a brain tumour has taken its toll. As a parent, watching your child suffer is heart breaking. Remembering how he was before cancer is a distant memory.
It all began with headaches. Nothing extraordinary, just headaches. Slowly, they became more frequent.
We tried various things to tick possible causes off the list: lack of hydration, lack of sleep, eye problems, too much sugar and food allergies/intolerances.
Nothing stopped the headaches and they became more regular. In the weeks leading up to diagnosis, Aaron’s headaches began making him vomit.
At a doctor’s appointment it was suggested we take him to Box Hill Hospital for a ‘casual’ MRI.
The scan seemed to take a long time. Before it was complete they asked us to sign an agreement for Aaron to have a contrast dye injection, which would provide a clearer image of his brain.
Signing those forms was when the alarm bells started in the distance.
We sat across from a doctor in a room set up for mammograms. Diagrams of breasts lined the walls.
The doctor held a box of tissues and made an attempt at humour with a joke about breasts, before delivering the news that shattered our world: “We’ve found a growth…in the back of your son’s brain….”
There is nothing that can prepare you for that moment. Standing on the precipice knowing your life will never be the same again. And you fall. Into a world of clinical terminology, endless waiting and the smell of hospitals.
With an envelope containing Aaron’s scans in my hand, we were sent directly to the emergency department of Monash Hospital in Clayton.
It isn’t easy trying to reassure a 10 year old that he will be okay, while inside your heart is being torn apart.
Aaron’s long hair was shaved in preparation for surgery, which was to take place on the Monday, just three days after the MRI.
Seeing Aaron in a hospital bed for the first time since his birth, hairless and scared, it was then we were hit with the reality of the situation.
At the time we didn’t have an actual diagnosis. A sample of the tumour was needed for examination to get an accurate diagnosis.
However, we were told that because of where the tumour was located in the brain, it was stopping the brain fluid from draining and being reabsorbed as per normal brain function, and this is what caused Aaron’s headaches.
For nine painfully long hours they had our boy in theatre. Finally, we were allowed into ICU where Aaron was recovering following the surgery.
He was alive but it was horrendous. His skull was swollen and bandaged. There was a tube draining fluid from his brain. His fragile, little body was attached to wires and tubes and machines. He was barely recognisable.
After that we simply had to take a day at a time. Aaron was in a lot of pain. His entire body had to adjust.
He suffered from double vision. He had to basically learn to move again, learn to walk again. Every movement for him was painful and slow.
He had more than 20 staples holding his skull in place, and a tube allowing the excess brain fluid to drain until his body could tolerate and re-absorb it.
Eventually, we were given a diagnosis: Medulloblastoma, a fast-growing, high-grade brain tumour that grows in the cerebellum or lower back part of the brain.
These tumours can also spread to the spinal column. Another MRI revealed a small lump in Aaron’s spinal column; the tumour had spread.
The oncology team at Monash informed us of a clinical trial which was conducted at Saint Jude’s Hospital in America and facilitated through The Royal Children’s Hospital (RCH).
The trial was specifically for children with high risk Medulloblastoma and considered to be the most advanced study for this disease. After meeting with the specialist oncologists at RCH, we agreed to sign Aaron up for the trial.
There are so many people with good intentions promoting natural cures for cancer. We’ve come across quite a few. But, when it’s your child, you don’t gamble.
You take what the expert oncology team recommends and you do it. It’s easy to have faith in natural remedies, but, when you’re told that without immediate and precise treatment your child might die, there’s no room for second thoughts.
Daily radiation of Aaron’s brain and spine commenced at Peter MacCallum Cancer Centre and continued for six weeks.
The prescribed steroids affected Aaron’s appetite. He had food cravings and often very little or no appetite. He suffered from ongoing nausea, headaches, lethargy and mood swings. His now short hair began falling out in clumps, until he was almost completely bald, except for a small patch on the top of his skull.
We were able to go home for four weeks, which coincided with Christmas. While at home Aaron was easily exhausted, our outings were minimal and our normally bustling household was in a state of quiet apprehension.
Cancer is horrible and when it’s a child with cancer it is all the more confronting. As with every childhood disease, it seems there is no justice, fairness or reason.
Cancer does not discriminate. There are so many brave, young battlers that haven’t yet had the luxury of life, and already they are fighting a fight even the toughest of grown men would struggle with.
Now, at RCH, we live in a bubble. It is another world; the world of chemotherapy, wheelchairs, IV poles and bald heads.
Nobody stares, because in the ward all the children are the same. Here, a child is simply a child and not defined by illness.
Often, we’ll be told how strong we are as parents. Realistically though, there is no option. You just keep going, moving forward, taking each day at a time. You appreciate the smaller things. You appreciate each and every day.
The Royal Children’s Hospital is fantastic and in particular the oncology ward. There is an overall sense of unity amongst families; unique bonds are formed with other parents. Together, families celebrate achievements such as announced remissions, an improvement in appetite, an increase in neutrophils.
You celebrate when another family proclaims they are taking their child home and hope that eventually it will be your turn.
Children are amazingly resilient and even when every day is seemingly a struggle, there is always laughter somewhere.
The nursing staff are undeniably dedicated and attentive. The crazy folks from the Starlight Room make their rounds and entertain along with the Clown Doctors and other volunteers who give their time just to make a child smile.
We were hesitant to make Aaron’s story public and to also go ahead with fundraising via GoFundMe: http://www.gofundme.com/Helping-Awesome-Aaron.
However, it is only because of everyone who has been so amazingly caring and generous that we have been able to stay close by Aaron’s side, available to him 24 hours a day and stay together as a family and adjacent to the Royal Children’s Hospital.
We are so humbled and grateful to everybody who has assisted us in any way.
It is only because of the help that we have received that our family of six, yes four boys aged two to 16 (Seth, 16, Isaac, 12 and Eli, two) has been able to remain together while Aaron undergoes treatment.
My husband Craig has taken time off work without pay and we have temporarily relocated our family to be near to the hospital so we can be there for Aaron all day and all night.
The adjustment has been difficult but the support we have received is so much more than we could ever have imagined.
From the very moment Aaron was diagnosed, we have been supported and encouraged by our community.
From the depths of our hearts we wish to thank each and every person who has shown us kindness. We are truly forever grateful.
All together: Aaron Tanner (centre) has been surrounded by the love and support of his family during treatment for brain cancer in the Royal Children’s Hospital. From left, brothers Seth, Isaac and Eli, with father Craig and mother Hannah.
Short URL: /?p=21541
Posted by Tayla Kershaw on Jun 6 2017. Filed under Featured. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry
