The Story of Spencer and Ruby

How did you spend last Christmas?

For most families with a two year old, it’s a magical time. The little ones are just starting to understand, feeling the excitement of Christmas lights and parties, anticipating Santa’s arrival and a day filled with family, presents and fun.

Two year-old Spencer spent last Christmas recovering from brain surgery. He and his family had just relocated to Perth from Bunbury, living in Ronald MacDonald house, still in shock from his cancer diagnosis. They were staring down the barrel of months of radiation and chemotherapy in the fight to save Spencer’s life.

Bright, cheeky Spencer became unwell in late November. Several visits to the GP and three trips to the emergency department couldn’t uncover what was wrong. His symptoms were put down to teething, his ears and a virus.

On the 2nd December an MRI showed a mass on his brain. They were flown to PMH, where another MRI confirmed a brain tumour. Doctors explained they would need to operate. There was a raft of potential side effects, and they did not know if they would be able to remove it all. The family was shattered.

On the 4th December Spencer had surgery. It took all day, but it went better than expected – a near total resection. He was in intensive care for 24 hours and then spent a week on the ward, before confirmation that the tumour was a grade three anaplastic ependymoma. On the 11th December, the family moved into Ronald MacDonald house.

On the 4th January he had a port inserted and commenced seven weeks of radiotherapy. After 33 sessions, each under general anaesthetic, he was exhausted. He had a four-week break at home and then commenced an aggressive chemotherapy regime.

His mum Dionee tries to explain what it was like.

“I cried for the first three days. I couldn’t eat, couldn’t do anything.”

When Spencer first came out of ICU, he couldn’t smile, couldn’t lift his head up. All he could do was watch, and see how everyone around him was responding. Spencer has always been a very caring, attentive little boy and despite what he was going through he was still very attuned to those around him. As he started to recover, Dionee noticed that when she laughed, Spencer would smile in bed. When she cried, Spencer would ask why, and she would tell him she kicked her toe.

That was when she she decided she wouldn’t cry in front of him anymore.

“That’s it. No more sooking. You can cry in the shower, but that’s it.”

Still, every time she kicks her toe now Spencer worries.

It was three weeks before Spencer could walk again, and he still gets wobbly when he’s tired. He’s been through countless tests, platelet and blood infusions, and he has hearing loss from the radiation and chemotherapy. This seems particularly unfair as he loves music so much, and it would help to calm him before his treatment.

During his radiotherapy, they would play his favourite song -Jingle Bells from Michael Buble’s Christmas album – as he would drift off to sleep.

Through everything, Spencer continues to smile.

“He just lives in the moment, with so much energy and love. He may be small but he has a huge presence, and an even bigger smile. We have to believe everything is going to be ok. He is supposed to be here! He is our amazing little hero.”

His side-kick and best friend is his older sister Ruby (six). They adore each other, and it was very difficult for them to be apart during Spencer’s treatment. Ever since he was born it upset Ruby to see him cry, so their time together at the hospital was limited to when he wasn’t too distressed.

I was keen to capture their closeness in the artwork, as well as Spencer’s love of trucks (and Ruby’s of turtles)! Garbage trucks, fire trucks, monster trucks – he’s obsessed with anything remotely truck-like. When I first met him at Ronald MacDonald house, he excitedly pointed out the garbage truck to me as it drove past. And when Dionee pulled out her laptop he couldn’t wait to watch his “truck show!”

Superpowers appear to run in the family. How else could you explain cancer diagnosis and treatment to a two (now three) year-old and his sister?

“We explained to them both that Spencer had a brain tumour in his head and he needed a very big operation to get it out so he could get better. Then he had to have yucky medicine to stop it coming back. This medicine would make him sick and his hair fall out. We try to be honest without scaring them. They are so young.”

Scott and Dionee and passionate about raising awareness for childhood cancer.

“Cancer in children is not rare. We never imagined this could happen to our family – our baby – but it did. We have met so many families fighting their own very real, very traumatic battles. There are too many little heroes on ward 3B, fighting courageously for their lives. The staff at PMH are amazing. But we NEED a cure. And for that, we need funding.
We hope that sharing our stories will raise awareness, to inspire more people to become involved. Together, we can achieve so much more.“

On the 22nd June 2016, Spencer had a clear MRI. Two weeks later his port was removed and the family returned home to Bunbury. His hair is growing back, and he is putting on weight and growing stronger.

“We feel blessed to have two very special, beautiful children. But we also live in fear of the next scan. We are trying so hard to cope with that, always hoping for the best outcome for our baby boy.”

Spencer has his next scan this week. Our every hope and wish is that it will be clear, so that they can spend this Christmas and many, many more together – listening to Michael Buble and just enjoying each other.

You can purchase prints of Spencer and Ruby’s artwork here.

| Hannah Moss | Moss Copy Creative Communications
| | @hannamossity |

Artwork by
| Janet Pan | Little Sketchy
| | @littlesketchyaus |

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