Wheelchair of Freedom


Freedom is my new wheelchair (and please keep your bottom to yourself!)

Osteosarcoma frequently results in the amputation of a limb. This wasn’t the case for Henry, whose leg had a titanium implant from hip to shin. The only real bone left was half of his tibia, fibula and his foot. It was amazing that he could move at all, taking three operations for this to be possible!

Once the initial biopsy had been taken, the leg was in plaster or thick dressings. Henry was in a lot of pain, so much so that he was bedridden 99% of the time. He couldn’t even bear anyone sitting on the bed next to him. Many bottoms turning to sit next to Henry were put firmly in their place, and that meant standing! Even nurses leaning on the bed were given short shrift!

We were given a wheelchair to transport him to and from the hospital. The first had four small wheels. Nightmare! Not only was it initially sent to the wrong hospital but there was no chance of pushing it up or down kerbs, especially when it contained a tall 12-year-old. We used this with a supporting splint for his leg from December through to May when our Occupational Therapist replaced it by a different model.

This was much more like it! Big back wheels made undulating surfaces far easier to traverse and resulted in less discomfort and bumping for Henry. The day it arrived, he realised that he could push himself, rather than relying on me or Gary. Being able to reach the back wheels with his hands from his seat was SO exciting; he could control his own direction and movement. He was freer than he’d been for months!

Our first visit to hospital in the new chair was an eye opener. I’d not really appreciated how debilitating Henry’s disease had become or how little freedom he’d had for months.  He’d relied on us for everything: a drink, a tissue, his Nintendo, a book, a game, and moving him to and from our sofa and his bed. He couldn’t wash without me bringing him a bowl, sponge and towel and using the loo was ‘interesting’. Poor kid. Watching him wheel himself around, rather than being pushed, with a HUGE grin on his face (much like the one he’d worn when using a scooter on a supermarket’s smooth floors!), it hit home how much he’d lost. I remember an older couple smiling sadly as they watched a boy with no hair laughing as his panicked Mum whilst he reeled towards a hospital wall, only to veer away shouting, “I know what I’m doing, Mum!”

To him, briefly, that time was freedom and joy. 

Left: Henry’s first (and very impractical!) wheelchair
Right: The much improved model!

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