James's memory lives on in the work that is being done at University College Hospital in London (UCLH) by the charity set up in his name and hopefully, later this year and next year at other children's hospitals around the country.  

CHILD SUPERHEROS - MASKS AND TATOOS

The initial objective of the charity was to explore the creation and funding of superhero masks that could be used by children who have to wear a radiotherapy mask every day over the many weeks that they are treated with radiotherapy for cancers that affect the head and spine.  These plastic masks entirely cover their head, neck and face and can be quite scarey to look at. They are used to fix the head firmly in place on the treatment table during radiotherapy so that specific areas can be targetted for treatment day after day.  They are made from a flat sheet of webbed plastic that is heated to make it flexible and then laid over the child's face. It is then carefully moulded to the shape of each child's head and neck by a technician wearing a special glove over several hours until the plastic hardens.  

We are now at the exciting stage where masks are being used regularly by children undergoing radiotherapy at UCLH. Children can choose not only from a selection of superheros for their masks, but from a wide range of designs, such as animals (the tiger is particularly successful) or cartoon characters; they can even design their own mask.  Where children need to use a mould of their arms or legs they can also personalise these moulds with transfers in the form of tattoos.  Children are now so attached to their masks that they are taking them home with them at the end of treatment!

The process of getting to this stage was long and laborious since it had to involve departments and committees at the hospital that we did not even know existed, such as "Infection Control" and "Mould Production", as well as the radiotherapy doctors and nurses themselves and the plastic manufacturers. The staff of UCLH have been particularly amazing in finding a solution and in making this work and they are extremely excited about these masks, since it brings choice and fun to an otherwise long and arduous regime of treatment.  They are very keen to share the results with other radiotherapy departments throughout the country and globally and to make masks available to children at other centres.  The masks themselves are not costly and the charity should be able to fund them for quite a reasonable period of time in London and hopefully at other centres thanks to all of the fundraising efforts to date of our many friends and supporters. In late 2015 two members of the radiotherapy travelled to an international conference in South Africa to share the results of using these masks in London.  It is possible that the idea will go global thanks to us!

It was in 2013 that the first SpiderMan mask was made and used for radiotherapy by a very excited little lad.  It is fantastic to hear that the initiatives we are taking continue to make a real difference to the process of treatment.


PLAY SPECIALIST AT UCLH

We are part funding the salary of an additional play specialist in the radiotherapy department at UCLH over the next three years, one year having already been completed.  This is a significant financial contribution by the charity and we have the funds in place to meet the three year commitment.  The play specialists perform an invaluable role in that they are involved in the whole radiotherapy experience for the children through the several weeks that they have to have therapy.  They meet the children as soon as they check in at the reception desk and whisk them away from the main waiting room to a children's playroom.  They are there to help children and parents understand the process and they are there right from Day 1 of treatment, showing how the masks and moulds are made and explaining how radiotherapy treatment works and what the possible side effects could be.  The play specialists are invaluable as a familiar face on the day to day grind of radiotherapy making the whole process much less clinical and scarey. 

DVD

UCLH developed a DVD for teenage cancer patients that explains the process of radiotherapy.  These interactive DVDs are given to teenagers and their parents at the start of the radiotherapy process and explain the whole process in an easy to understand way that hopefully allays a lot of the fears of those embarking on what can be a very daunting process.  The hospital asked us to part fund a DVD for the younger age group, 4 to 12 years, to perform a similar function which is now in use.

 

FAMILY FUND

Children undergoing radiotherapy often have to travel long distances each day to the hospital, or if they live too far away, have to stay close to the hospital for the duration of the treatment. This can add enormously to the stress of an often difficult experience.  We have been looking at ways to make this additional burden easier for families that do not live within reasonable travelling distance of the hospital.  

We have set up a family fund to deal with ad hoc requests from families who are either finding staying in London difficult or travelling to and from London a chore.  The family fund can help in many different ways by, for example, funding a day out, funding travel costs for a sibling to come to London, arranging a pastime that the child is missing out on, pony rides, a dog walk, whatever it may be.  We can also provide games, ipads or DVD players for children who have long journey times each day to borrow.  There are no rules as to what the family fund can do.  It is there to respond to the needs of individual families and to hopefully do something, however small, to make a day, or days more bearable; it allows the staff at the hospital to not only listen to and be sympathetic to the needs of the family but to hopefully be able to do something about it.

 

THE FUTURE

 

UCLH are investing huge sums in a Proton Beam Therapy unit at the hospital which will eventually replace or supplement radiotherapy as a treatment for cancer.  Though the machine will not be in use for some years to come, we will need to look at how children will need to be supported under the new regime for treatment.  There will be huge demands on the unit, which will be the first in the country, and the support system for children will probably have to be expanded to deal with the increased numbers of patients, many of whom will be a long way from home.  We will work with UCLH to see how we can help with this process as it develops.