Childhood acute myeloid leukemia (AML) is a type of cancer in which the bone marrow makes a large number of abnormal blood cells.
Infants have been reported to have a 5-year survival of about 50%, although with increased treatment-associated toxicity when treated with standard AML regimens. [U.S. Department of Health and Human Services].
Chances are that you’d find these men at the end of that hallway by that large window. It’s always open – but they don’t seem to mind. They just don’t like being bored. They indulge – in reading, gossip, playing cards and sharing one or two laughs.
These people, however, were not here by choice. They have traveled far from home, having to quit their day jobs, and sell valuable assets just to see their loved ones under medical care. They are the family of childhood cancer sufferers at a hospital. They sit by that window at the end of a hallway day and night – cautiously contemplating some good news on their patients’ prognosis.
This indeed makes for a very ‘blue’ picture, but the fair side of the story is that these parents socialize and share their burden of stress, uncertainty and sorrow with one another. An impromptu support system – or a “caregiver’s club” – if you’d call it. Empathetic strangers sharing the same plight who can acknowledge one another’s plight and offer counsel and support.
“The social impact of cancer and pain can be ameliorated by social…The desire for additional help from family and friends has been identified as an indicator of caregiver burden…” [Surbone A, Baider L, Weitzman TS, et al.: Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Support Care Cancer 18 (2): 255-63, 2010].
This child has to battle blood cancer with chemo, but that’s probably not the salient part of his story. This is rather a story about the boy and his toy….
Ankon (let’s call him by that name) had just come a long way with his family from home for treatment in Dhaka. A toy car caught his eye at a bus stop and he couldn’t not let it go. He cried and screamed until they bought him the car.
When we first approached Ankon, we were quite amused by his obsession with that toy. Imagine watching an awkwardly positioned boy trying to play with his toy car with one arm, while the other is inconveniently strapped to an IV drip… What’s more bothersome – as his family explained – is that the boy plays with his car all the time!
In fact, Ankon may have needed this toy more than his family initially thought he would – it was helping him cope with his difficult transition.
This brings us to the salient part of his story: the toy. Coping with cancer needs more than just an IV drip. It requires a support system, and even the little things could give a lot more mileage to a fighter than we would initially think….