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.

James – Alveolar Rhabdomyosarcoma (ARMS)

Today, we share the story of James, by his mum, Christine. James has been diagnosed with Alveolar Rhabdomyosarcoma, at just 6 years old. They live in New York, USA.

As you will read from Christine, in the USA, as here in the UK, children are continuing to get misdiagnosed initially. And then, when diagnosed, the cancer has, sometimes, already spread to other parts of their bodies. If you have not heard ‘PAX3’ being mentioned before, it is a gene that plays a critical role in the formation of tissues and organs during embryonic development, and is important for maintaining the normal function of certain cells after birth. The ‘HER2’ (human epidermal growth factor receptor 2) gene codes for a receptor on the surface of some cancer cells. Overactivity of the ‘HER2’ gene was identified as a pharmaceutical target for cancer drug development in the 1980s. Although not specific to breast cancer, you may have heard it referred to in this context before.

Our thanks go to Christine for allowing us to share this story, and we send James, Christine, and their whole family, our best wishes in this ongoing battle with this evil disease.

Ziggy & Betty xx

James was diagnosed with Alveolar Rhabdomyosarcoma (stage 4), on July 31, 2017. He was just 6 years old. Initially, he was misdiagnosed by a local hospital. As soon as we got the biopsy results, I called ‘Memorial Sloan Kettering Cancer Center’, because I wanted him to be treated there (we live in New York). They wouldn’t see him without slides and a finalized pathology report. While waiting for the finalized pathology report from the local hospital, he lost the ability to walk. We had our first visit to ‘Sloan’ on August 4, where we were told the grim news.

The first sign my son had was groin pain and then a lump. I thought it was a hernia. It wasn’t. By the time he had that first symptom, it had metastasized and was widespread through his lymph nodes, in his bones, 80% in bone marrow, abdomen and possibly his lung. It had started in his calf. He is positive for the PAX3 fusion gene. Because it is in two channels, lymph nodes and bone marrow, we were told it is one of the most difficult cases to treat. There has only ever been one long term survivor of what James has, and that survivor is considered a miracle. There is no cure! When asked what we could do, we were told to pray. We are treating the disease to make him better and to buy some time, and in the meantime, hoping for a miracle or a medical breakthrough. We can never be sure of the amount of time James has left, but we have been told, the average life expectancy is 3 years, and the maximum is 5-6 years.

We had our first post treatment scans recently. His PET Scan & CT scan showed no evidence of disease. We are waiting on the bone marrow and biopsy results. We were reminded by our oncologist, Dr. Wexler (who is considered “the” rhabdo expert), at our PET Scan results, that the challenge was not getting him to be clear, but keeping him that way. He is expected to relapse.

Here in America, the lack of federal funding that goes to childhood cancer is the biggest tragedy as far as these children are concerned. Childhood cancer is the number one cause of disease related death for children in America, meanwhile, they only get 4% of federal funding for cancer research. Our children are literally dying from this and no one cares.

Since sending this initial story to us, Christine, has now provided us with an update from the bone marrow and biopsy results.

We got the results of James’s initial post treatment scans. While the PET Scan and CT Scan were clear, the MRI showed “residual disease”, and the bone marrow biopsy and aspirate results were “disappointing”. The cancer is still in his bone marrow. They are re-doing all scans in another 3 weeks to see if the marrow clears. We are scheduled to start radiation in addition to the chemo he’s on in January. If his bone marrow isn’t clear, I don’t know what we’ll do. They mentioned an immunotherapy in Texas, but he needed to test positive for the ‘HER2’ gene. He didn’t, so it isn’t an option for us. I’m terrified that this treatment plan may be failing him already. We go today to get him tattooed for radiation and have the mold made that he’ll be placed in for his daily radiation treatments.

Hold this rock – diagnosis and treatment

Today, we post part 1 of a 2-part blog from Marie, who helped set up Ziggy Zoo Radio. It’s another perspective on being a mum to a child with cancer.

This week, we are posting stories about the parents or carers of children with cancer, and letting them tell us, in their own words, the incredible feelings of despair, heartache and helplessness they feel when their child has cancer.

Part 1: Hold This Rock (Diagnosis & Treatment)

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.

Steven – Rhabdomyosarcoma AND Osteosarcoma

Our son was first diagnosed with Rhabdomysarcoma in 2006. He was six years old. Up to that point he had been a healthy child and so the doctors initially thought he had tonsillitis. Rhabdomyosarcoma is very aggressive soft tissue cancer and was allowed to grow in his sinus cavity, unchecked, for many months. Eventually his symptoms of nasal discharge and breathing problems became so severe that he had a CT scan at our local hospital. The scan showed the “mass” attached to his soft palate. He then went to Great Ormond Street Hospital for further tests and a biopsy, and that confirmed Alveolar Rhabdomyosarcoma. Following that diagnosis he started treatment immediately, and after 12 months of chemotherapy and six weeks radiotherapy he was in remission.

Steven during radiotherapy

In 2014 however, he had a painful lump develop on his cheek. He was still having regular checks at Great Ormond Street and being monitored for late side effects. In view of his past history, there was no delay in organising a scan. The doctors had already warned us that it was likely he had another tumour. He had a biopsy and was diagnosed with Osteosarcoma (bone cancer). Steven needed more chemotherapy and many hours of surgery before he went into remission again.

The Osteosarcoma was caused by the radiotherapy he had for the first tumour.

This is just a brief outline of our son’s story. We shall look at it in more detail later.

If you would tell us about your child’s cancer, or you are a childhood cancer survivor, please get in touch and we would be very happy to give you a feature on our blog and later on the radio channel.

Best wishes

Ziggy Zoo and Betty Too

We want to be your voice, and give children with cancer a voice

Thank You from ZZR

Thank you to everyone who has shown an interest in Ziggy Zoo Radio so far. We are so grateful to you all because it means that we are doing something that lots of people support, and that makes us very happy. We want to be your voice, and give children with cancer a voice.

If you have contacted us to say that you would like us to share your child’s story, journey or experience (we all call it different things), then we will be sending you a short questionnaire in the next few days.

Please keep sharing our facebook page and our blog with your friends and family and ask them to share too. Did you know, we are also on Twitter? We need to get the message out there to the wider community, not just oncology families!

Best wishes

Ziggy Zoo and Betty Too


Hello… and welcome to Ziggy Zoo Radio.

A new Internet radio station, launching in Spring 2018, to raise awareness of childhood cancer, and to provide chat, comedy, current affairs, and the best music variety programming to the wider community.

But, you don’t need to wait until Spring 2018 to get involved. We need your help and support now. Get in touch to find out the many ways in which you can help and get involved.

Together, we will raise awareness of childhood cancer and we will save lives!