Treatment for Ted

If you know us personally then you will already know by now that our baby boy, Ted, has cancer. He has a cancer about as rare as they come, in a place about as rare as they come and incredibly difficult to treat. It’s in his sinus and has spread to his skull base. Because the type of cancer Ted has is unknown, this means that there are no proven treatments or prognosis for him. It also means that radiotherapy may not be successful as there is no evidence that the tumour would respond (some cancers aren’t radio-sensitive) and there is a huge amount of risk to the surrounding healthy tissues like his eye & brain. There is also a risk that once radiotherapy has been done, surgery afterwards wouldn’t be possible

Despite the tumour reacting brilliantly to chemotherapy and shrinking significantly, chemo alone will not keep the cancer at bay for much longer. The team treating Ted in Nottingham have referred his case to both Birmingham Children’s & Great Ormond Street Hospital’s but the consensus in the UK is that surgery will not be possible, which means that we have no choice but to look elsewhere for treatment. Our oncologist has referred Ted to a hospital in the Netherlands that has a pioneering programme to treat head and neck cancers in children but funding has been refused by the NHS. We’re also in discussion with a children’s hospital in the US that specialises in minimally invasive surgery of the skull base in children.

Because of the nature of facial surgery it’s very likely that the surgery required will be extensive and will require a lot of reconstructive procedures as Ted grows. This is going to come with significant costs, which is the reason I have set this page up. I’ve set the target at £250,000 but will update this once we have a treatment plan in place.

We really need to be in a position to just go as soon as we get the go ahead for treatment, which is why we’re asking for your help now. Ted’s first round of chemo is scheduled to finish in 5 weeks so that is all the time we’ve got.

We’ve really struggled to share open, honest insights into Ted’s cancer treatment so far. We’re all completely devastated and we’re just not ready, but we know that if we’re going to ask for people’s help then sharing a few pictures of his smiley little face every so often probably won’t be enough. All we ask is that you bear with us as it’s tough and we are only able to share the ‘happy’ photos right now.

Thank you for reading this far and thank you so much for all of your support ❤️