Dialog Box

Helping Harry Sammut

Helping Harry Sammut

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Just over a month before our son’s 9th birthday, we were told the devastating news that Harry was diagnosed with High-Risk Neuroblastoma. His 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 notified 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 of diagnosis was and still is against him.

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 diagnosis and during treatment. It’s been all about riding the waves of treatment, juggling side effects and learning to switch off when things got 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 injured a great deal of 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 tendon BMT 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 go 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.

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 realised Harry’s diagnosis and treatment plan, we had to go down to one income. Even with his dad holding onto his job, his also needed to be there by Harry’s side. We have needed to learn how to ask for support in so many ways.

Harry has now completed frontline treatment for Neuroblastoma November last year. During the leadup to Harry completing treatment we found an overseas trial for the drug DFMO. This drug has demonstrated some promising results for children diagnosed with Neuroblastoma and has just been approved by the FDA and renamed Iwilfin. Unfortunately, there’re no trials for this drug (that has had positive results) within Australia. Now, the process for children like Harry to receive this drug within Australia may take a long time if, even possible.

The cost for our family to make the decision to take our sick child out of Australia to do a trial like this is expensive on top of all the other financial stresses that the eighteen months of treatment has brought. 

We have no idea what the future holds for our Harry (as Neuroblastoma diagnosis is a stubborn cancer) but hope this journey he’s on brings purpose. Whatever that maybe, as the possibility of relapse is always in the back of our minds. Especially as we are now going into further debt with Harry having to travel to America for the DFMO trial.

Bringing awareness to Neuroblastoma and childhood cancer is so important. There needs to be so much more improvement to the treatment of childhood cancers. Research has been so limited. Treatment for cancer is brutal.

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