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

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.

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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