We established ‘Daniel’s Light’ with the specific aim of supporting the ‘Adult Leukaemia Unit’, not least because of the personnel who work on the ward. The consultants and doctors, the nurses and all the auxiliary staff are absolutely tremendous. Nothing is too much trouble, and, tho’ hard pressed at times with other seriously ill patients their supporting hand is never far away. Joyce and I have never seen such an outstanding example of ‘team work’. Night and day, day after day, their love, tenderness and care are always there in abundance. They never, ever give up! Within minutes of admission they had begun to weave their special web of love and care around us all. That web was so warm and powerful that one could almost touch it.
They are very, very brave people, and each individual has a special quality that could never be identified by any job description. And by ‘special’ we do mean truly special – to knowingly face such an uphill struggle every day of their working lives demands very special people. Each of us is honoured to have known them.
The nurse to patient ratio is approximately 1:3, not bad for this day and age, but, it is a pointer to how strict and accurate the care regime in A.L.U. needs to be.
Joyce was determined to raise money for the A.L.U., so she held an ‘Afternoon Tea’ at Furness Vale Social Club when Danny was having a respite from hospital. It did remarkably well, and Danny thought it was fun for everyone as well as being useful in terms of funds raised. We thrashed around with names for our proposed fund, and as soon as Joyce suggested ‘Daniel’s Light’ we all knew we had a winner. So – ‘Daniel’s Light’ was born and was soon to take a first step. Our first event was soon followed by a ‘Coffee Morning’ in Whaley Bridge, which gathered another two hundred pounds, and, in a small way ‘Daniel’s Light’ was on its way!
Joyce and I wondered how we could make it easier and/or better for patients during their stays in hospital enduring the different stages of their treatments. Being with Daniel for so long, and on a regular basis had given us an insight to the situation from a patient’s point of view and also their carers. As mentioned earlier, extra, personal amenities have already been provided and maintained. So, what could Joyce and I, as ‘Daniel’s Light’ do that might make a difference? We decided to look at the situation from a different angle. There were things that we wanted and things we didn’t. If people in their generosity were donating monies or giving up their time, then we required and demanded the maximum value from each contribution. We have seen the wastage from the ‘bureaucratic branch’. It didn’t take us long to decide that we wanted to put the fund at the sharp end, remember, A.L.U. is separately funded.
With this in mind we set about finding out how to best accomplish our objective. The doctors and nurses were the obvious people to ask. Daniel’s consultant, Professor Howard Scarffe identified the need for a special binocular microscope. It could be used to examine the individual cells in the blood and to identify the rogue cells. It cost £2000 and has been in regular use since June ’96.
There are other instruments such as computerised pumps, which are so accurate that they can deliver a fraction of a millilitre of medication over a period of an hour, day after day. With the opening of the new extension there was a dearth of these pumps, and begging/borrowing is not a satisfactory solution for a very professional system. We were approached and asked if we could supply one or two. We noticed that the cost per unit (£3600) decreased considerably as more were bought, and, as we knew that there would be eight patients we ordered six with accompanying dedicated stainless steel drip stands, and also four pocket sized worm driver pumps for use with outpatients or maintenance drugs.
There is a machine called a cell separator. It is about the size of a washing machine, and is really like a small centrifuge. It spins off only white cells, which can then be inspected, and if good, can be stored and given back to the patient after treatment, negating the need for a bone marrow transplant.
There are many other instruments needed both for research and in the treatment programme.
Christie Hospital Appeals Department kindly allowed ‘Daniel’s Light’ to run under their Registered Charity Number – 1049751. This brings tax benefits to the fund. We continue to be very specific with our donations. All our purchases are aimed at, and for the benefit of the Adult Leukaemia Unit. Using information from the doctors and nurses we are able to decide what goes where, and that frivolous purchases are avoided.