There are some amazing, big charities out there doing some incredible pioneering work, then there are the smaller ones, the unsung heroes. The ones who tend to be overlooked but do something so worthwhile and so meaningful for a child going through such a traumatic experience at such a young age that they need to be recognised. I am sure there are many other similar charities out there but there are two which are now very close to my heart.
The day that Eleanor was admitted to the ward at the Royal Marsden for her portacath surgery we were given a yellow fluffy duck dressed in blue hospital scrubs in a plastic bag. We were told his name was Chemo Duck and that he came with a matching head scarf for Eleanor. At that point we never realised just how important Chemo Duck would become to Eleanor and how invaluable he would be to her during her treatment.
Chemo Duck comes complete with a portacath (or hickman line depending on the type of line the child has) which means the child forms an almost immediate bond with it. Our chemo Duck has a funny, kind of bewildered expression too which always makes me smile!
Chemo Duck also comes with his very own ‘wiggle’ which attaches with velcro to his port, the lovely nurses at the hospital gave us a syringe which we attach to his ‘wiggle’ so Eleanor can give him his medicine just the way that she has hers. Every time Eleanor has any medicine be it though her port or tablets/liquid, Chemo Duck has some too. Every time we go to hospital for chemotherapy or a blood test, Chemo Duck has the same treatment. Listening to Eleanor talk to him and tell him what is happening is truly inspiring. She talks him through the whole process which without her knowing herself, is helping her understand everything that is happening to her.
She tells him things won’t hurt, or that things might not taste nice but are really important. We play along, we do Chemo ducks voice and sometimes make him play up just like Eleanor does to see how she copes with it, mean parents aren’t we! She would make an excellent nurse, at 4 years old she already has an incredible bedside manner!
The following day whilst Eleanor was recovering from her operation, one of the play specialists came to talk to us about the Beads of Courage programme. It’s a reward programme, like a star chart for behaviour or potty training. Thankfully as well as being coloured, the beads are often tactile so Eleanor can feel them. Each bead colour signifies a different experience throughout her treatment. For example, a white bead is given each time she has Chemotherapy, black beads are for blood tests or any time her port is accessed and yellow beads are for an overnight stay in hospital/admission. There are lots more, I won’t bore you with them all! There are also special beads to signify overcoming medical challenges or hair loss.
They are therapeutic to both Eleanor and to us. We almost look forward to collecting the beads when we are at the hospital as much as she does! Eleanor is so proud of her beads, she loves showing them to people and will sit with me and go through them whenever she meets someone who hasn’t seen them before. She is most proud of her ‘Princess’ bead. This one was given as a special reward when she finally got over her fear of the blood pressure machine (or the squeezy puff as she calls it), for a while she wouldn’t let anyone come near her with it, as soon as she heard the noise of the velcro she would scream. It took Tim many hours of persuasion to overcome that hurdle. Big cheers for Tim there and his perseverance because it was looking like a losing battle at one point!
My favourite bead is the ‘Hope’ bead. It is one of a kind, given to Eleanor when she was officially registered blind. It signifies – for me anyway – not giving up. There is always a small chance that some of Eleanor’s sight may return as the treatment progresses. However small that chance may be, 5, 10 or perhaps only 15 percent, I am clinging to that and running with it, because even 5 percent is better than nothing at all.
Never give up hope. It is the only thing stronger than fear.
So there you go. Two simple yet incredibly rewarding ideas that make such a horrible experience that little bit brighter!
Such a wonderful and insightful blog, my heart goes out to Eleanor, so sad, but joyful both at the same time. Thank you for opening my eyes.