Lobke’s Story

Hello! My name is Lobke and for the past 17 years it has been my job to prepare for and support children, young people and their families through their radiotherapy treatment here at the Children’s Hospital in Leeds, England.

Radiotherapy treatment can be challenging for anyone at any age. Especially the radiotherapy mask many of our patients require to keep them in a still position for treatment, can prove to be a real struggle for some. Some of our patients described the mask as claustrophobic and frightening. As a team we are always looking at ways how we can make this experience a bit easier and the best it can be.

Quite some time we came across a photo on the internet, shared by a hospital in America. The photo showed a radiotherapy mask painted as Spiderman. It completely transformed the look of the cold, clinical mask into a much friendlier looking mask. We all absolutely loved the idea and knew this could make a real difference to our patients. We all agreed that this was something we wanted to offer too!

We discussed this with the wider team who were all enthusiastic and keen to get involved. The effect of the water based acrylic paint on the mask material was tested for safety and when the report showed it did not affect the radiation dose we were given the go ahead!

Our first mask was painted in 2016 for a 4 year old patient who asked for a Spider man radiotherapy mask. I will never forget his excitement over having his mask made, knowing it would soon become his Spiderman mask. He even came dressed as Spiderman to his mould room appointment and did so for most of his radiotherapy treatments after. It was the first time I had actually seen a child get excited over having their radiotherapy mask made. It was then that I realised this was so much more than a little bit of paint. By allowing patients to choose the design of their radiotherapy mask we give them back some control. We have been told by a young adult patient that having “a say”, even over something as simple as a design, meant a great deal to him. He told us he had no say in his treatment, where, how long for etc, but this time he did. Because of this personalisation he said that his mask no longer felt like a cold clinical device, but it felt like HIS. Even now, years after treatment, he still has it proudly displayed on a shelf in his bedroom. This is something we hear often. While before painting the radiotherapy masks were often left with us after treatment or stored in the attic, never to be seen again- now after decorating, patients mostly choose to take their painted mask home. We have been told by parents their child still plays with it, has taken it into school to show teachers and friends or even had it framed on a wall at home.

Previously when we introduced the radiotherapy mask during a first visit, we were often met with comments like; “I don’t want one of those” Now, we are able to show a variety of painted masks which opens up discussion on what the patient would like. By talking about something they are passionate about whether that is their pet dog, favourite band or favourite superhero, the whole tone of the conversation changes and anxiety seems to shift to the background.

We find that with our very young patients there is often some kind of role play involved where they take on traits of the character they have chosen for their mask. We had a little girl who chose Rainbow Dash because she was the bravest My Little Pony. A young boy chose Batman for his mask and told us he actually felt like Batman wearing his mask. It can be quite powerful.

An 11 year old girl who lost all her hair due to chemotherapy treatment, asked me to paint her hair on her mask. She was very clear on how she wanted it to look. Making sure I got the colour right and even painted on some highlights. She was delighted with the result and I hope it gave her some confidence during her radiotherapy treatment.

We offer all our patients up to the age of 25 years of age to have their mask painted, even our patients having a general anaesthetic. That might seem surprising as the patient is asleep during treatment and unaware of the mask they have to wear, but we have found it to be a great comfort to parents -knowing that their child is wearing a mask with something painted that means something to them. In the past I have copied their favourite teddy bears or painted their favourite cartoon character which makes the mask look a little “friendlier” and feel more personalised to them.

Painting the radiotherapy masks is only a small thing to offer but it really can have a big impact. It tells the child or young person that they matter. That someone has listened to what matters to them and tried to make their treatment experience a little better. You don’t have to paint a radiotherapy mask to give patients that same feeling. It is often the “little things” like having their favourite cd playing in the treatment room, asking their plans for the weekend- then checking in with them on Monday or remembering to offer their favourite drink.

The little things are never little and how you made them feel will stay with them long after treatment. ♥