Lucy – Alveolar Rhabdomyosarcoma (Part 4 – Lucy Remembered)

Today, is part 4, the final part of Lucy’s story, as told to us, by her mum, Michelle. If you have been following this story over the past few days, then you will have read an in-depth account of a mother’s love, commitment and heartache for her brave daughter, Lucy. Sadly, not all child cancer stories end in the way that we would hope.

I’m sure this story has affected a great many people; not only from parents, or carers, of children with cancer, but many others too. Sadly, it is a story that will be repeated today, and tomorrow, and the next day. If you are affected by this story, or any of the stories or posts that we publish, please do seek professional support.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way.

Best wishes to you all.

Ziggy Zoo and Betty Too
Xx

Lucy passed away peacefully with her family next to her, at our local hospice, on the 15th August 2014. She was so small, like a tiny little doll in the hospital bed. So frail, it had taken everything from her in those awful four years since diagnosis. She was free though, and in my muddled old brain, she could now do whatever she wanted to. We’ve had ribbons printed in her favourite yellow, and people have taken them on their holidays. So far, there are ribbons in 40 different countries. ‘The Judith Chalmers of the spirit world’, I joked the other day. It was just something, anything, to keep her memory alive.

Life hasn’t been the same since she had to go. It’s hard, trying to find a new normal. We are a broken family, but somehow we keep going. My other three children are so damaged, and so sad. This has totally ruined their childhoods; their lives all changed. It breaks my heart. They have dreadful sibling guilt, and although we encourage them to do everything they want in life, it is so hard for them. Slowly, they are finding their feet again, and we couldn’t be prouder. My poor hubby has also lost his lovely mum to cancer since Lucy died, and his dad was diagnosed only four months later. I don’t think it’s hit him yet. He’s very protective, very caring, and on his bad days, I hope I am the very same for him.

I’ve suffered ill health ever since, with various different problems, mainly down to anxiety. Some people don’t know, some don’t understand, but the world frightens me now. I feel I’m still on amber alert, waiting for the next disaster. I want to feel happy, but too frightened to dare to. Or is that guilt too? I’ve gone from a, ‘tenacious force to be reckoned with’, as one doctor called me, to being frightened to go out alone. My gp has been very supportive, and I’m getting help for the mental scars left behind. It frustrates and infuriates me being so weak. Being strong for too long, over four years, has taken its toll I suppose. I didn’t deal with it during Lucy’s illness. It hit me afterwards, and I don’t discuss it with many. I’m quite private really on the awful days. I, maybe, should ring a friend up and shout for help, but I haven’t. It’s not just your child you watch facing and going through this nightmare. I’ve lost count of the teenagers I’ve watched lose their hair, their limbs and their lives too. It messes your head up, a lot. My husband, family and good friends have been amazing, very patient, and just get it.

Lucy will be missed forever. There’s no moving on, and some days, I don’t really know how to live the rest of my life with this pain. This grief is just love, I’ve accepted that. I felt very rushed, and a failure at first that I wasn’t ‘back to normal’. Now, I have come to understand such grief is part of, and remains with me. It’s part of us, part of our family. Lucy is still such an inspiration to us. We miss her humour, her kindness and her laughter. Everything. One in a million, loved to the moon and back, I used to say to her. I try my best not to dwell on the sadness, the illness, or the things cancer has taken, but to try to focus on how blessed we were to have such a wonderful girl for 20 years. It’s not easy though, but I hope she knows how much she’s loved and how proud we all are.

Our beautiful girl, Lucy.

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Lucy – Alveolar Rhabdomyosarcoma (Part 3 – Relapse)

Today, we share part 3 (of 4) of Lucy’s story, as told to us, by her Mum, Michelle.

Unfortunately, despite the chemotherapy and radiotherapy treatment to treat the ‘alveolar rhabdomyosarcoma’, Lucy, started showing significant signs of relapse.

We had 13 months of normality, but then Lucy started to lose weight rapidly. She didn’t have an appetite, she was tired, and had 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.

Her bloods were fine, and a chest x-ray was also fine. That Sunday, I carried her down the stairs, and after days of saying she would go to A & E, on Sunday, when she was ready, she allowed me to phone an ambulance. The next few days were a blur, but Lucy and me already knew. It was back, hundreds of tumours in both lungs. Lucy had a lung drain fitted; it seemed like gallons of cancerous fluid came out, and we flew by air ambulance to the ‘Christie’ for more treatment. We were told that Lucy’s cancer was incurable, and we had to face the fact that she would die. My little girl was going to die.

After a few months of chemo, Lucy bounced back again, and although very weak, she got on with living as best she could. The cancer though, got cleverer each time it returned, and much stronger. Every time she relapsed, she wanted more chemo; she wanted to live her life as long as possible, and be with those she loved so much. There were endless blood transfusions, platelets, infections, cellulitis, sepsis. We nearly lost her to sepsis twice. I’ve never seen anybody become so ill, so quickly. It was absolutely terrifying. To the world, Lucy put on a brave face, always smiling and happy. She was, of course, so brave, but also so good at wearing that mask too. She never discussed with her friends what was really happening. She just wanted to be Lucy, but there were lots of long nights when it was just me and Lu, hugging and crying, because she was so so frightened and didn’t want to die. She never once said, ‘why me?’ We discussed every topic, every subject. Lucy knew she was so loved, and that is something that I am so glad about. Her favourite place was home, and when asked during a hip aspiration to go to her happy place in her head, she said, ‘oh it’s in my garden, with a pink wine, but don’t tell my doctor that!’ Nowhere tropical, nowhere fancy…just home. ‘No place like home’, she always said, as our flight landed.

The final and 4th relapse was absolutely terrifying to watch. The cancer moved from her chest wall to her neck, spreading to her jaw and her gums. Again, more chemo. More radiotherapy to her neck. It was just horrendous, this horrible, insidious disease, and all that it brought with it. But, all the barbaric treatments too. My heart was shattered into a million tiny pieces. I remember one night she was screaming in pain and said she had had enough; she just wanted to go. People see the tv ads, with happy bald kids smiling. Believe me, it’s not like that. These outdated, much under-funded treatments are killing our kids, and if they do survive, they are left with life long health problems. It’s never truly over.

Lucy passed away peacefully with her family next to her, at our local hospice, on the 15th August 2014…

I’m sure this story has affected a great many people; not only from parents, or carers, of children with cancer, but many others too. Sadly, it is a story that will be repeated today, and tomorrow, and the next day. If you are affected by this story, or any of the stories or posts that we publish, please do seek professional support.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way, and we have part 4, the final part of Lucy’s story, in Michelle’s words, to share later.

Best wishes to you all.

Ziggy Zoo and Betty Too
Xx

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
Xx

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
Xx