Lucy – Alveolar Rhabdomyosarcoma (Part 2 – The Early Treatment)

Today, we share part 2 (of 4) of Lucy’s story, as told to us, by her Mum, Michelle.

The diagnosis of ‘alveolar rhabdomyosarcoma’ has been made, and Lucy, with her mum, have travelled to Manchester, in preparation for her treatment.

Lucy’s cancer had already spread to her bones; the bottom of her spine, her pelvic bones and five lymph nodes. Stage 4. Stage 4! There’s no stage after that. Her oncologist didn’t seem overly concerned…

‘it’s all going to be hit by chemo. Staging is for the doctors to work out how much treatment is needed. You either have cancer or you don’t. Staging is for the experts, but people do like to weigh up the odds of survival with that teeny bit of knowledge. Forget that bit, we are going to get on with it. Others can get through this Lucy, I don’t see why you can’t’.

So we did. We got on with treatments, ticking off the treatment plan, now sellotaped to the kitchen wall. Eight months of chemo to start, consisting of five days of continuous chemo, even through the night. Every three weeks, for eight months, she had to endure chemo. She was so sick at first; the mouth ulcers, the sore bones, chemo cravings (chips at 3am, but I was just glad she was eating), and the hair loss. In total, I shaved Lucy’s hair off three times. A mother should never have to do that, but cancer makes sure lots of things that shouldn’t happen, do happen. Her wig, she named, Mabel.

Lucy then had to have an ileostomy for radiotherapy; she was so brave, but we separated that op away from the treatment. Lucy joked, that of all places, it had to be near her bum! The op was a necessary evil, like the chemo, but to save the risk of infection from the radiotherapy. Six weeks of radiotherapy to five different areas. I’ve never seen burns like it. Internal burns too, which needed numerous operations later because of the scar tissue left behind. After the initial eight months of IVADO chemo and radio, followed a year of maintenance chemo. A daily dose at home, in tablet form, with a weekly bag of iv chemo done at our local hospital. Somehow, in those 18 months or so of chemo, Lucy never had any infections. Life returned to a new normality. Lucy went back to college and had driving lessons. She turned 18, and it was so nice to worry about the normal stuff, like her getting drunk, and splashing hair dye on the bathroom wallpaper…we loved it. Little things people take for granted, I never will again.

We had 13 months of normality, but then Lucy started to lose weight rapidly. She didn’t have an appetite, she was tired, and she developed a weird crackle when breathing out. She thought it sounded like popping candy. I knew. She knew. But, we went around in circles, never mentioning the dreaded relapse word…

Michelle has described what Lucy went through during her cancer treatment. I’m sure many parents will have similar experiences from their own child’s cancer treatment. Many parents ask to know what ‘stage’ the cancer is at, but some, such as us, didn’t need to know, or didn’t want to know until much later on.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way, and we have part 3 of Lucy’s story, in Michelle’s words, to share later.

Best wishes to you all.

Ziggy Zoo and Betty Too

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