Taliyah – Rhabdomyosarcoma

Today, we hear from Maryrose, mum to Taliyah. She tells us of her daughter’s initial rhabdomyosarcoma symptoms, how she has fought the disease, and how she now likes to help others too. Taliyah, is now 10 years old and lives in the USA.

Taliyah, was just 7 years old when diagnosed, and her first symptom was a ‘stuffed-up’ nose, with loud breathing, snoring and sleep apnea.

Taliyah, was diagnosed with Rhabdomyosarcoma just one week after her 7th birthday. Her first symptom was a “stuffed up nose”, which was causing loud mouth breathing and snoring. When we noticed that she was also experiencing sleep apnea, I took her to ‘urgent care’. We were told that it was the worst case of enlarged adenoids that her doctor had ever seen. She was scheduled for surgery a few days later; the day before her birthday. Eight long days later, we were given her cancer diagnosis.

She endured 46 weeks of chemotherapy, 5 1/2 weeks of radiation, 5 surgeries, and over 60 transfusions. She earned over 1100 Beads of Courage during 11 months, being dubbed the ‘Warrior Princess’. Despite the horrible treatments, Taliyah, kept a positive attitude and loved trying to cheer up others around her. One of our projects was sprucing up the ‘Broviac clips’ the hospital gave out [in the UK, we generally hear Hickman line or CVC, rather than ‘Broviac’. But, these are the clips associated with these lines, which although slightly different, have the same purpose].

Since being off treatment, she has organized a toy drive each Christmas for the children’s hospital, she volunteers with a local cancer support group, ‘Pink Heals’, as a Junior Guardian, and she helps raise money and awareness for pediatric cancer research. Taliyah, also loves church; especially when she gets to volunteer with younger kids, cheerleading, singing and creating things.

Taliyah’s ‘toy drive’ for the children’s hospital.

We are very grateful to Maryrose for allowing us to share her daughter, Taliyah’s, story with us, and we send all our love and best wishes to Taliyah and her family.

Ziggy Zoo and Betty Too.
xx

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.

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

Nicole – Cancer Parent

It is not always easy to explain how it feels to be a parent or carer of a child with cancer. This article, by Nicole, is taken with her permission, from Facebook, and tells of the anguish of trying to stay positive for your child, while your insides are just churning with anxiety.

Here I sit reflecting the past 5 years, this is something I do leading up to any surgery, procedure or results. My mind cannot focus on anything else, I think about the original diagnosis, the denial and the reality – reality is not how I expected my life to be. Cancer not only robbed my daughter’s childhood, even if she manages to fight every cancer cell in her body my life will always be centered around the sh** that tried to kill my daughter. It has destroyed me, robbed the innocence of motherhood… My daughters own body has raged a war against herself and I am powerless to stop it. There is nothing worse than that…. is there? And whilst she sits there so positive and I pretend everything is ok and everything is normal – inside I am fighting a battle no parent should ever have to…. how awful is that I have thought about the song that she will be remembered by, how bad is it that I lie and tell her everything is going to be alright when I don’t actually know if it is…. please don’t tell me I’m strong because I am so weak. I don’t want you to walk in my shoes – I never want you to feel the pain I’m feeling, I never want you to look in your child’s eyes and be filled with the fear and worry I feel. All I want is kinder treatments, research and a cure that can give our children 100% chance to become an adult. I want people to pause, just for a second and try, try to imagine it was happening to them… because the 9th October 2012 I was just like you..

Thank you for allowing us to share your feelings Nicole.

Our best wishes to you and your family,

Ziggy Zoo and Betty Too

Xx

Finley – Wilms’

Finley was diagnosed with Wilms’ Tumour (Kidney Cancer) on Friday 13th February 2015, when he was just eight months old.

His Mum, Donna told us about his early symptoms…

[Finley was] ….unsettled, agitated, vomiting, and when he cut his finger, the bleeding took longer to stop than it should have done; he just didn’t want to lay on his back. He ended up in hospital, overnight, at 4 months old, as he was crying in pain continuously. But, he was only diagnosed with reflux. He was under a consultant for a few more months for reflux, but they weren’t listening to me, even when I mentioned I thought there was a problem in his abdominal area. Finally, during a trip to A & E (due to Finley vomiting and not keeping anything down), a young doctor discovered the mass. We had an ultrasound, and then, discovered the tumour.

His treatment included chemotherapy and surgery…

Finley needed four weeks of chemo prior to surgery, then surgery to remove his left kidney and the tumour.  Then, as he was stage one, but high risk, he had 29 weeks of intensive chemotherapy, including Vincristine, Actinomycin D and Doxorubicin.

Finley is now almost two years in remission, but has some side effects from the chemotherapy and only having one kidney…

  • Finley has heart echocardiograms, because there is a small chance the Doxorubicin could have damaged his heart.
  • Possible infertility.
  • Nerve pain and other problems.
  • Can’t take ibuprofen, and has to be careful to remain hydrated due to only having one kidney.

He is doing well at the moment, but tires easily, and has stomach pains. If he catches a virus, it hits him hard.

Finley has regular scans every 3 months.

Donna added that their consultant said that often Wilms’ is symptomless, apart from the mass, but this wasn’t the case for Finley.

Thank you Donna for allowing us to share Finley’s story. We wish him and your family all the very best.

If you would like to share your experiences of childhood cancer, then please do contact us via our Facebook page, Twitter, Instagram, or use the form below:

Thanks for reading.

Ziggy Zoo and Betty Too

Xx

Tristin – Synovial Sarcoma

Mandy tells us about her son Tristin, and his amazing attitude towards his illness and recovery.

Our son Tristin, was a happy, healthy boy, who loved playing football. When Tristin was 12, he started complaining of a pain above his right knee. We took Tristin to the doctors, but it was always dismissed as growing pains. The pain in Tristin’s leg got worse, and was affecting him playing football with his friends, so my husband asked to see a different doctor.

Tristin was sent for an MRI scan, and we were then told Tristin had a cyst which could be removed if it was bothering him. Tristin had surgery in February 2017 to remove the cyst; everything went well and he was home the same day.

About 10 days after, I got a call from the hospital. They said to me that the surgeon wasn’t sure what he had removed from Tristin’s leg and they needed him back for tests, but told us not to worry. We took Tristin back for further tests in March 2017, and we were told the devastating news that our son had Synovial Sarcoma, and that it wasn’t a cyst that was removed, but in fact a tumour.

We were in complete shock; our world was turned upside down.

After much consulting, between our Doctors, and Doctors in Birmingham hospital, we were told the news that our son had only 2 options: a full leg amputation, or a Rotationplasty, which we had never heard of before. Our brave son chose Rotationplasty, as he felt this option would give him more function.

Tristin, then 14, underwent Rotationplasty surgery in June 2017, becoming the first to have it performed in Northern Ireland.

Our journey has been so tough and heartbreaking, but Tristin has been amazing. His attitude is so positive, and he is so determined to not let this hold him back. He keeps us going;

Tristin always says, “I will run and play football again someday”

There is no guarantee that Tristin’s cancer won’t return, so we take each day as it comes, and hope and pray that it doesn’t.

Thank you very much for allowing us to share Tristin’s story. We wish him and his family our very best.

Ziggy Zoo and Betty Too

Xx

Our ‘Childhood Cancer Awareness Radio’ Aims

Our aims with this blog, Facebook, Twitter, Instagram, and ultimately radio, is simply:

1. To raise awareness of childhood cancer:- Awareness = Early Diagnosis = Saved Lives.

2. To give children and young people with cancer, the chance to run their own radio shows.

3. To provide entertaining and informative radio shows, with the best chat, comedy and music variety.

4. To direct donations to childhood cancer charities, for research into childhood cancer, and for support to those with cancer.

We are not here to compete with childhood cancer charities. Of course, we do need to cover our radio operating costs, but that is the only funding we need.

Let’s work together on this. We all want the same thing.

Radio can work. But, we need your support. Please share us, into your groups, on to your page, everywhere, and get some likes for us. That way, we really all can stand up to childhood cancer.

Thank you.

Our Steven – an update

Steven

It’s almost two and half years since Steven had many hours of complicated surgery to remove the Osteosarcoma from his jaw.

It’s almost two years since he had hours of complicated surgery to repair damage caused by an infection.

Both surgeries have left him with many visible scars from where the donor tissue was taken from each time, where he had drains in and from the tracheostomy, as well as at the actual site of the surgery.

photo-21
Some of our son’s scars from head and neck surgery for Osteosarcoma

Then there are the scars inside his mouth where his new jaw was wrapped in a ‘flap’ of donor tissue. The outside of his leg became the inside of his mouth!

Steven has very few teeth left, and the ones he does have are decaying fast due to damage from radiotherapy, chemotherapy and because Steven struggles to clean them as he cannot open his mouth wide enough.

The main reasons why Steven struggles with his mouth opening are

  • Previous cancer treatment left him with limited mouth opening
  • The surgery he had to remove the cancer from his jaw has altered the mechanics of his mouth
  • The tumour had spread from his jaw into the surrounding muscle and so that muscle was also removed during surgery

The good news is that his surgical team now feel that he is strong enough to undergo more surgery to try to correct his mouth opening, and also to fill out his cheek where the muscle is missing, and they have mentioned trying to improve the appearance of his facial scar.

Steven has been given two options and he has sensibly chosen to start with the ‘easier’ of the two. The alternative is many more hours of surgery and another tracheostomy. The procedure he has decided to start with involves taking fat from his belly and putting it in his cheek.

He also needs to have dental implants to replace all the teeth which were removed with his jaw.

At present we do not know of the timings of any of this new treatment, but we do know there was a lot of information to take in and think about. We are writing this update just a few days after visiting clinic and we are still feeling the shock.

It is also very hard for us as parents, to think that the second cancer, and all the surgery needed, is a side effect of the first cancer. If you have not read the first part of Steven’s story before, you can read it here. This is one of the main reasons we campaign for better awareness. The gruelling treatment may save lives but for some children that is the beginning of a lifetime of side effects and disabilities. So, please understand that when you see that a cancer child’s hair has grown back it doesn’t always mean they’re OK now!

As always, please feel free to comment on this post or to message us privately if you would like to share your experiences of childhood cancer.

Thanks for reading,

Ziggy Zoo and Betty Too

Xx