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

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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

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