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Why Matt is Walking4BrainCancer

September 17, 2021

In 2018, Matt Simpson and his 15-year-old daughter Paige ran the City2Surf for Cure Brain Cancer Foundation. Matt had a school friend who lost his daughter to brain cancer so he thought of it as a worthy cause but not overtly personal – Matt had no idea that his own daughter Paige would be diagnosed with an inoperable and incurable brain stem glioma just two years later.

 

“Mid-way through 2020, my daughter Paige started to complain that her face felt numb occasionally. We didn’t think much of it, but it continued to get more frequent, eventually resulting in partial paralysis of the right side of her face.”

 

On the 17th of October 2020, Paige was diagnosed with a brain stem glioma.

 

“I remember that day vividly. Paige was staying with her mother; I was at home alone. As most people would, I googled Paige’s condition. I knew very little about brain cancer. The information I found on the internet was not good.  I sat on the lounge and cried for several hours.  My google search told me that a brain stem glioma was a death sentence for Paige. Sure, I hoped that I might be wrong, I hoped that I was being overdramatic and negative, I hoped that the information I had read didn’t apply to Paige, but deep down I knew that Paige was in a very serious, life-threatening situation.”

 

Paige started radiotherapy and chemotherapy a month before Christmas. Every day for 6 weeks (except Christmas Day) Paige and her family visited Genesis Care at The Wesley Hospital.  Alongside radiation, Paige’s treatment plan included chemotherapy and steroids.

 

“She had a written schedule stuck to the fridge and she did her best to follow it.  The steroids gave her a ravenous appetite and caused her to gain weight rapidly. They also caused her face to swell. In a matter of months, Paige’s entire appearance changed. But this didn’t slow her down.  She still attended school, worked at her part time job and most importantly (to Paige) she could still go out with her friends.”

 

In early February 2021, an MRI found that the radiotherapy and chemotherapy hadn’t shrunk the tumour, and Paige was given Avastin infusions every three weeks.

 

“It gave us hope. Before her diagnosis, Paige hated needles, but with the many blood tests and regular Avastin infusions, Paige became a pro.  She knew how to prepare herself so that her veins were readily accessible.  She never complained, she never questioned why, she just got on with being treated.  She was a great example to me of resilience and positivity. Paige spoke regularly about the future, what career she would like to pursue when she could move out and live with her friends and what she looked forward to doing once this “thing” was sorted.”

 

In May, a routine MRI gave the family good and bad news.

 

“Paige’s tumour had almost halved in size. This was such a positive and looking back, it probably overshadowed a detail that we didn’t fully comprehend.  The doctors also explained that Paige’s tumour had started to shed cells that had dispersed throughout her brain and spinal fluid. The is a condition known as Leptomeningeal disease and is a very serious condition. I don’t think any of us fully understood just how dire this diagnosis was.”

 

During June 2021, Paige’s pain worsened. She started to experience terrible headaches and spent days in The Wesley Hospital Emergency rooms.

 

“She hated being in hospital and I’m sure the doctors were soon sick of her begging them to allow her to go home. But the headaches continued. The doctors prescribed larger and larger dosages of steroids to try and stop the inflammation of Paige’s brain, but they weren’t winning the battle and Paige’s health was going downhill rapidly.  We always felt that Paige would be strong enough to be around for a few years at the very worst, but during July, I came to the realisation that this might not be the case. We just couldn’t find a way for Paige to be comfortable.  She was weak and dizzy and spent nights vomiting.”

 

On the final day of the Olympics, Matt and Paige spent a lazy Saturday in front of the TV.

 

“Her pain meds were doing a decent job and she told me that she felt fine.  We talked and laughed and marvelled at the athletes performing tricks in the Olympic skateboarding competition.  We ordered Uber eats and she cuddled with our dachshund Henry.”

 

By midnight it was a different story.

 

“Paige was awake and in terrible pain. We tried everything we could to help her. She didn’t want to go to the hospital because she thought they’d keep her there for a few days and because we were in the middle of a COVID lockdown, she would have to be in hospital by herself without visitors. By 3am, we couldn’t do any more to help her, so we made the decision to go back to the Wesley. I dropped her at the Emergency area and was told by hospital staff that I couldn’t stay. Paige told me to go home and get some sleep, she said she would text me when she knew what was going on. At 5am she messaged me saying that she was waiting for the Fentanyl to work and that I shouldn’t worry.”

 

At 8am Matt received a call from the hospital asking him to come up.

 

“I knew visitors weren’t allowed due to COVID, so I was immediately very concerned.  When I arrived at the hospital, Paige had been taken to the ward. The doctors told me that Paige only had days to live, it took me a while to comprehend what they were saying.  She was heavily sedated, and I asked them to ensure that she would not suffer.”

 

“Those next 4 days were a blur.  Paige stayed heavily sedated.  The COVID lockdown ended, and Paige had many visitors come to see her.  As a family, we were with her around the clock.  The doctors came and clarified Paige’s situation and prepared us for what was to happen. Even sedated, Paige had moments of lucidity. Her sense of humour and personality shone through. She would give me the thumbs up whenever I walked into the room, she would ask why we were all staring at her while she was asleep, and she’d tell us to go home.”

 

On Thursday the 12th of August at 5.30am, 3 years to the day since Paige had run the City2Surf for Cure Brain Cancer Foundation, she passed away in her sleep.

 

“These 10 months since Paige was diagnosed, were the most difficult of my life.  But my experience was nothing compared to what Paige went through.  I often wondered how Paige felt about her situation.  We never spoke about her dying, she never complained or asked, “why me?”. She just got on with life.  Paige didn’t want the cancer to define who she was and stop her from living a normal life. I will always be inspired by her resilience and positive outlook in the most terrible of times.”

 

When asked why Matt wanted to be involved in Walk4BrainCancer, he said:

 

“I am motivated to share Paige’s story because I want her to be remembered, for others to know how she fought and didn’t let her condition stop her from having fun and living life. I also want people to know what a terrible, terrible disease brain cancer is and how it robs young people of their lives.”

 

“There is a huge void in our lives because Paige is gone, and while we cherish our memories, I wouldn’t like anyone to experience what Paige and our family went through in the last 10 months.  Please consider donating to the Cure Brain Cancer Foundation.  This organisation is working hard to ensure that there may one day be a cure or at least treatment that can extend the lives of victims of brain cancer.”

 

In memory of Paige.

 

To support Matt, sponsor his walk here: https://my.walk4braincancer.com.au/virtual-2021/matt-simpson

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