Mason's Sarcoma Story

Beginning treatment before an official diagnosis

Mason’s diagnosis was a lengthy process, taking over eight weeks from the initial biopsy. Despite not having a confirmed diagnosis, he began chemotherapy due to the rapid growth of the lump. Doctors warned us that the growth was highly aggressive and fast dividing, which was alarming to hear as parents. However, they explained that aggressive growths often respond well to chemotherapy. Surgery was initially not an option because the lump was more extensive than visible, as revealed by MRI, PET, and CT scans. The lump accounted for only about 15% of the tumour and it was spreading in his pelvis/abdomen area, core, and pushing against his lower back and organs.

Chemotherapy

Following Mason’s installation of the Hickman line, he was set to undergo chemotherapy. This was a difficult milestone for him and the family, as it marked the beginning of physical changes and side effects associated with the treatment. Despite his young age and relatively good health before, the urgency to combat the aggressive cancer pushed his treatment to proceed. Mason received a mix of doxorubicin and ifosfamide through IV infusion, along with Mesna to protect his bladder. The initial dose hit him hard, making him physically sick, pale, and disoriented. However, subsequent rounds were somewhat more manageable.

The hope is that Mason won’t remember

Being hooked up to machines for four days straight was challenging for a toddler who wanted to explore. We had to be cautious about preventing him from pulling or twisting his lines. The constant beeping of the infusion pumps due to pressure fluctuations became frustrating but necessary for safety. In attempts to distract and entertain him, we relied on limited space and played movies on an iPad, especially the Bee movie on Netflix, which he loved. During the moment of initiating the first bag of chemotherapy, doubts and concerns arose, but we were reassured the necessity of confronting the cancer aggressively. Despite the hardships, we focused on the hope that Mason wouldn’t remember these challenging times.

Radiotherapy

During Mason’s chemotherapy, we learned that he might also need radiotherapy. This news left us feeling unsure, wondering how it differed from the treatment he had been enduring, and why he needed something extra. Mason would receive Proton beam therapy, a modern advancement over traditional X-ray radiotherapy, which is often favoured for young children. The treatment involved attending an intensive six-week cycle in Manchester, where he would receive 31 sessions. The precision of the proton beam allowed it to impact the tumor without damaging the surrounding areas. In contrast, traditional radiotherapy could potentially harm the surrounding tissues and stunt growth in the targeted area, causing imbalances as the rest of the body grows normally but the treated region lags behind.

Using distraction techniques

Two weeks before his Proton treatment, Mason had a pre-assessment visit to the Manchester Proton center. Scans were done, and he was fitted with a custom mold for precise proton beam treatments. Then, upon our return, each morning for six weeks, he received proton sessions, requiring general anaesthesia. The process took about five hours each time, longer for babies like Mason who had to be nil by mouth during anaesthesia. The Proton center was exceptional, with a playroom where Mason enjoyed running around and playing with toys. During treatment, Mason faced skin irritation and disruption to his digestive system. Distraction techniques helped ease his discomfort and towards the end of treatment, his appetite improved, and he seemed to sense the end was near, showing enthusiasm and cheerfulness during his last week.

The benefit of being so young

When Mason’s hospital visits became more frequent, and he was diagnosed, we realised there was no escape from the challenging journey ahead. We embraced a positive mindset to cope with the uncertainty. Mason’s young age had some advantages during his treatment: he didn’t fear hospital visits, he couldn’t express pain or discomfort verbally, and he enjoyed attention from doctors and nurses. Being unaware of his condition spared him worry or anxiety. He continued his naps, didn’t miss school, and didn’t mind the physical side effects of chemo. As parents, we found comfort in these aspects and learned to focus on the positive “nuggets” to keep moving forward despite the difficult circumstances.

Sharing Mason’s story

Six months of chemotherapy, radiotherapy and surgery has helped Mason survive cancer. It was a long old, stressful journey which we chose to document along the way. Starting by describing how we found his lump, being unsatisfied with initial GP visit, gaining a very valuable second opinion, through to our first visits to a children’s cancer ward for testing and his Hickman line installation. We’ve written about our experience going through chemotherapy with Mason during the 2020 Global pandemic which saw very tight regulations and quarantining of patients on the ward. We tracked his ups and downs with neutropenia and his life changing operation to remove the tumour before starting 31 rounds of Proton radiotherapy. If Mason’s story helps just one other person going through the same thing, then it’s been worth sharing.

James, Mason’s Dad, August 2023

Emma and James, Mason’s parents, keep a blog on his journey.  Follow Mason’s Story

Update: January 2024

Mason has started fully time nursery and is making friends. He has been out on his Balance bike a lot and looking forward to a big boy bike for his birthday at the end of January. The week before Christmas he had another routine MRI scan. It was a bit of a wrestle for his 51st general anaesthetic and doesn’t get easier as he grows older. The scan was confirmed clear which was great news but also revealed he had a collapsed lung – which is being investigated further. He is living his best life and his big sister Paige is being a great role model.

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