Just over a month before Harry Summut’s 9th birthday, his parents were told the devastating news that Harry was diagnosed with High-Risk Neuroblastoma. Harry’s mum, Julia, tells us their story. 

After receiving the diagnosis, we were told Harry’s body was riddled with cancer - head to toes. He was an 8-year-old boy, full of life but in the weeks leading up to his diagnosis he was complaining of stomach pains. He didn't want to run around on the field and play soccer anymore. His body felt weird when jumping on a trampoline. Everything ached. 

The day after we took Harry to complete some blood tests our local GP called and told us that we needed to take Harry straight to hospital. The two weeks that followed were like an out of body experience. Hell. We never expected our child to be diagnosed with cancer.

Neuroblastoma is commonly diagnosed in toddlers under the age of 5 years old. Harry's age at diagnosis was, and still is, against him. Julia, Harry's mum

Harry already had a few development delays. Learning how to speak and write never came easy for him. However, this is the biggest challenge we have all had to face. Harry has hardly attended school since his diagnosis. It’s been all about riding the waves of treatment, juggling side effects and learning to switch off when things get unbearable.

We were told his treatment plan would take 18 to 24 months to complete. Consisting of chemotherapy, surgery to remove the tumour, two tandem bone marrow transplants, radiotherapy, and immunotherapy. With every treatment more side-effects would be advised. 

There is a very long list of long-term side effects that comes from this type of treatment plan. With each treatment Harry's body has endured immediate side effects like nausea, loss of appetite, mucositis, skin discomfit, nerve pain, muscular pain, and many, many more.

The treatments have all been hard on Harry’s body. Going through his tandem bone marrow transplant Harry needed to stay in a hospital room for 5 to 8 weeks at a time.

It was hard for us as adults to do so, let alone a child. We didn't know how Harry would manage, but he did it. Our 9-year-old boy found gaming online with his cousin a safe space for him to try and switch off from the horror of being so sick and unable to get out of bed. Julia, Harry's mum

Our family’s lives feel like they have been put on hold. We’ve tried to juggle financial stresses with also being there for Harry and his younger brother. As soon as we understood Harry’s diagnosis and treatment plan, we had to go down to one income. Even with his dad holding onto his job, he also needed to be there by Harry’s side. We have needed to learn how to ask for support in so many ways.

Harry is nearing the end of his front-line treatment plan, and will travel to America mid-December 2023 to access the DFMO trial. We will be back just in time for Christmas with family. Unfortunately Harry's dad and brother are unable to go with us due to finances, but hopefully they will make it next trip in 3 months time.

When we get home, we hope Harry will be able to have a happy summer being back in the pool and just enjoy being a now 10-year-old.

We have no idea what the future holds for our Harry (as neuroblastoma  is a stubborn cancer) but hope this journey he's on brings purpose. Whatever that may be, as the possibility of relapse is always in the back of our minds. Julia, Harry's mum

Bringing awareness to neuroblastoma and childhood cancer is so important as cancer treatments need to radically improve. Research has been so limited within childhood cancer. Treatment for cancer is brutal on children.

This year Harry’s big cousins participated in the Sydney’s Run2Cure. In April 2024, we hope to be there as well with Team Harry, so we can support Run2Cure and help raise money and awareness towards this devastating childhood cancer. 

 

Help children like Harry 

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma.

We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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