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

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

Jack – Rhabdomyosarcoma

Jack was diagnosed with Alveolar Rhabdomyosarcoma in July 2015.

Jack - Rhabdomyosarcoma
Jack

He underwent 11 cycles of Chemo (IVADO) and 26 sessions of radiotherapy. This initial treatment saw tumours disappear.

However, Alveolar Rhabdomyosarcoma (also known as ARMS) is very aggressive. Sadly, the cancer returned very quickly, and Jack lost his brave fight in July 2016, aged 19.

Here are his own  words….

‘My name is Jack, I’m 19 years old. I became ill last year whilst taking my A Levels. After initial problems with diagnosis, I was confirmed as having a type of soft tissue sarcoma (rhabdomyosarcoma). Initial treatments were gruelling but positive. However, soon after treatments ended, the sarcomas came back, hard. The doctors now tell me that they can’t cure me.

Sarcomas are relatively rare but are often the main cancers to affect teenagers like me. Many of my friends who are fellow patients also have this same illness. I am determined to help research into sarcomas and am already taking part in one research project, but we need more funding. Research will help us better understand the causes and identify improved treatments, saving young lives in the future.

I’m a private person and it’s been a big decision for me to share this publicly, but it’s the right thing to do. So please, please help.


Please make a donation, share my appeal with as many people as you can, especially any businesses who can help.

With your generosity, I might be able to make a difference. Help me to help others.


Thank you
Jack’

A much loved and loving young man, a bright devoted and caring son and a loyal friend with so much to live for and so many dreams. Only weeks away from starting at university when the disease took that away from him. Jack felt passionately that research into RMS was essential in order to save other young people in his situation.

His website has raised over £87K to date (October 2017).

Our thoughts are with his family and we are grateful to them for allowing us to share Jack’s story to help us raise awareness.

Ziggy Zoo and Betty Too

Xx

Henry – Superhero Sibling

It’s not easy being a child with cancer, and we give them a lot of attention. It’s the natural thing to do. We want to make them feel better. We mustn’t forget that often these children have siblings, and it can be a very hard life for them too. Their parents may have to rush off to hospital at short notice many times (children on treatment can suffer many side effects requiring emergency admissions), family plans get thwarted and it’s a worrying time for everyone.

While parents can sometimes take leave from work, siblings have to carry on as if everything is normal especially where the routine of school is concerned etc and that is a huge weight on small shoulders.

With this in mind we want to reach out to these Superhero Siblings and tell them that they are amazing too, that the part they are playing and their role in the family is important and they have not been sidelined.

Today we introduce Henry. He was happy to answer some questions for us, and for us to share them with you all. The answers are his own words.

Can you tell us how old you were when you were told about Hugo’s illness?

I was 6 (and a half!)

We know you work hard at school, what is your favourite subject?

Maths is my favourite, but I also like Science and PE.

When you are not at school, what is your favourite thing to do?

I like being with my family and also building lego.

If Cancer was a person, what would you tell them?

I would tell them to go away and leave our life.  You are mean to people who you give cancer to, you should be nicer.

Is there anything else you would like to tell us to help explain to other people what it is like to be Henry?

It is quite hard being Henry because Hugo has cancer and he gets more attention most of the time.  It is quite hard, but it is also fun playing with Hugo when he is well.  It’s a bit annoying being the big brother because Hugo keeps messing up things and I’m not always able to understand him and he’s not always able to understand me. It’s also nice because I get to go out more because we don’t want Hugo getting germs and we go for nice days out.

Thank you Henry for being our guest!

Siblings need a voice too
Superhero Sibling Henry

You can find out more about Henry and his brother Hugo on their Facebook page, please leave Henry a comment and let him know that he is awesome.

If you know of another sibling who deserves a shout out then you can contact us and we will give them a feature here too.

Many thanks for reading.

Ziggy Zoo and Betty Too

Xx

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

Welcome

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!