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.

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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

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Hannah – Acute Lymphoblastic Leukaemia

Today we are sharing Hannah’s story by her Mum, Allison.

Hannah was diagnosed with Acute Lymphoblastic Leukaemia at 11 months old, on 23rd March 2016. She was in and out of hospital during the 9 months of intensive chemotherapy, she is now 9 months into maintenance treatment, thankfully she’s coping quite well and we’re hoping this can continue until end of treatment.

Was it quite easy to get a diagnosis or were there delays?

It was 13 days, between going to the doctors and getting a diagnosis. Her symptoms were bumps on her head and bruising all over, they did thorough scans, blood tests and a biopsy. This was an urgent matter, to rule us out as the cause. Her blood results didn’t show anything sinister, but the biopsy did.

That was very quick. It is not always the case though is it? It sounds like such an awful time for you. It is good that Hannah was dealt with so quickly though!

No, I’ve heard some parents have had to go back and forth with doctors for five months or more, although it hurt they thought it could be us (they thankfully put it low on the list of reasons, but had to check), I’m glad it meant they took her symptoms seriously.

I am thankful that although [the lumps] look really bad, they didn’t seem to cause her any pain. When they had to touch them to examine her, she didn’t flinch at all.

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We are very grateful to Allison for telling us all about Hannah and letting us share her story to help raise awareness. We send her and her family our very best wishes, and hope that Hannah continues to progress well with her treatment.

If you would like to add a message for the family then you may do so below, or use our contact form, and we will pass it on.

If you have a childhood cancer story to share then please do get in touch via the form below and we will add you to our pages.

Thank you for reading,

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