Lucy – Alveolar Rhabdomyosarcoma (Part 1 – Initial Diagnosis)

Today, we are sharing the first part of a 4-part story. This is Lucy’s story, as told to us, by her mum, Michelle.

Many parents, or carers, of children with cancer, will recognise their own stories within this account, from a mum, who was not only battling with her own overwhelming emotions, but also trying to ‘stay strong’ for her daughter; a term that you’ll see Michelle begins to dislike greatly. It’s honest. It’s hard-hitting. It’s incredibly heart-breaking, yet heartening too.

My daughter, Lucy, was 16 when she told me she thought she had a little pile. It was just a little lump. The next day, at the docs, we were told she had a perineal abscess. There were no other symptoms at that point, so we weren’t overly concerned, although I had that horrible, stomach turning panic, that all parents have when their kids aren’t well. After a couple of weeks, and various different antibiotics, I took her to A & E, as she couldn’t sit down; this lump was growing so rapidly, and her lymph nodes were swollen in her groin. I knew something was very wrong. After an initial diagnosis of ‘Non-Hodgkins’, the biopsy told us it was in fact, Alveolar Rhabdomyosarcoma, stage 4. We flew from the Isle of Man to the ‘Christie’ in Manchester, where a lot of investigations, bloods, scans, hip aspirations, etc, took place, and a Hickman line was fitted. Rhabdomyosarcoma! How do you even pronounce it, never mind spell it? How will we manage living away from home? We won’t know anyone, or be able to cope with all this new and scary medical stuff. Amazing friends of mine, whose children all had serious, or life limiting conditions, told me not to worry about that, you’ll be surprised what you learn, and the staff will all become your friends. My god, they were right!

I remember the flight to Manchester so vividly. Lucy, had to sit on a cushion as she was so sore. We sat holding hands, like a pair of frightened rabbits. I felt sick. I so wanted it to be me, not my child. How can this happen to such a healthy young girl? What did I do as a mum to cause this? My brain was spinning, trying to stay positive and strong….I now hate those words, ‘stay strong’. How can you be strong when your world falls apart and your child might die before you? No, I told myself that wasn’t going to happen. People survive all the time. Lucy would too, she was determined. We were determined…

Michelle has said, in just those two paragraphs, what many cancer parents can identify with; how general concern becomes a diagnosis with a name we cannot even begin to pronounce at first; how unfamiliar the hospital surroundings are to begin with; and how even though we are frightened, we gather all our strength, and tell ourselves, it will be ok.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way, and we have part 2 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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