Beanie, or Zac, aged 2 was diagnosed with Fusion Negative rhabdomyosarcoma in November 2019, his disease was very aggressive and spread to his brain during front line chemotherapy, tragically Beanie passed away in April 2020. His care was led by Birmingham Children’s Hospital.
Beanie was a bright and happy 2-year-old who was the centre of his parent’s world, excelling at all of his milestones as he developed into a confident and caring toddler. Around the time of his second birthday, Beanie had become unwell with a swollen tummy and became easily upset, his diagnosis came following several trips to see the doctor and eventually a hospital admission.
The disease presentation was not typical of Rhabdomyosarcoma and it was initially thought to be Neuroblastoma. Following further investigatory scans, multiple tumors were found throughout his torso and it was confirmed to be Rhabdomyosarcoma.
Heartbreakingly the disease, along with its aggressive presentation, gave a bleak outlook, with a statistic of just 10% survival rate, leaving his family stunned.
At the end of November 2019, Beanie began an incredibly intensive treatment protocol. The chemotherapy these children have to endure is brutal and Beanie had a severe reaction resulting in monitoring by the ICU. This resulted in a change in his chemotherapy regime. After several weeks in hospital, he made it home for what was to be his last Christmas.
In March 2020, after several rounds of chemo, Beanie was beginning to vomit more than the expected side effects and following another scan was found to have disease progression to the brain and spine. Sadly, this meant that his journey was coming to an end and there was nothing more that could be done.
Beanie’s family decided to take him home and spend what time they had left together making the memories they could during lockdown, watching the sunrise, painting, reading, setting off fireworks, sitting under the stars, getting visits from a fire engine and playing.
Beanie died peacefully in his mother’s arms on April 22nd 2020, leaving his family and those who knew him heartbroken.
Horrific, the first few weeks were incredibly hard and before Christmas, there were a number of times it was looking like Beanie might not make it through the first round. Following changes to his protocol and with the chemotherapy taking effect the tumors reacted incredibly well. Beanie began talking again and wanted to play which was a major milestone from where he had been. The following weeks saw a massive improvement and Beanie was able to stay at home, go on days out and see his friends but he was never far from needing a blood transfusion, platelets, a new feeding tube or admission for temperature spikes. Beanie was such a strong spirit and throughout his treatment he was always joking around, trying to keep the doctors and nurses playing in his room and trying to make everyone laugh even in the most traumatic times. He was incredible.
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It was terrifying to be thrown into a battle with an enemy we know little about, it’s unpredictable and the treatments can be cruel and often don’t give much hope for success.
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