“In recognition of Childhood Cancer Awareness Month, we send love and prayers to all the children living through such an illness, as well as parents who must watch their children suffer.” ~ Team CHANGE
Do you know someone who has a child living with cancer? Seems this is a great issue within not only the United States but many other countries as well. I'd like to bring to your attention that for some families there are issues that are associated with having a child with cancer which goes beyond the disease itself. There are many children whose families have low or no income. The lack of financial stability makes it difficult for the child to receive consistent treatment for their illness and causes unnecessary stresses for the family and the sick child. Why am I addressing this topic you ask? Well, anyone who knows anything about Tomaro’s C.H.A.N.G.E. knows that we are interested in all issues concerning youth. We are interested in bringing awareness to the people who can possibly make a difference. Sadly, cancer kills more children than AIDS, asthma, diabetes, cystic fibrosis, and congenital anomalies put together! Families with financial troubles who have sick children all over this world need support outside of the hospital or doctor’s office. By sharing information, we hope to bring awareness and get folks to recognize their strengths and abilities within their communities to make a difference in the life of a sick child. Throughout the United States and beyond, children are limited in the treatment they can receive, the availability of medication, access to transportation, and psychological assistance (therapists, etc.). And, these are just a few of the issues that we know of as outsiders looking in; this does not include what the families quietly suffer behind closed doors. Knowing one family in particular, we were able to see the ins and outs of what these families go through, what the child goes through, and how the outside world could never begin to understand.
Some of the issues to consider include:
Previous data indicate that in developing countries only 20% of children survive versus 75-80% in the United States – hospitals may not have access to life-saving medicines, technology, or knowledge; and if they do, the medicine and treatment are almost always too expensive.
Many families do not have transportation to get their sick children to and from the doctor for treatment and/or emergencies. If they do have transportation, the travel costs may exceed their budget still making it difficult to make it to their treatment and other appointments.
Lodging and meals may be an issue for families needing to spend time away from home during the child’s treatment.
If there are other children involved (siblings) this may be an added expense whether for food/lodging or childcare expenses.
There may be a need for special foods and nutritional supplements or special equipment or clothing for the sick child.
Families may have an issue with communication; phone calls, faxing, copying, etc.).
Parents may have to take a leave of absence from work or may even lose their jobs to properly care for their sick child; thus, causing a major financial hardship.
Family's feeling of humiliation in seeking assistance from institutions and others within the community.
The frustration of dealing with individuals who are not 'sensitive' and considerate of the difficulties these families suffer.
With all these stressors, now we must include the psychological stress for both the sick child, the parents of the child, and we cannot forget the sick child’s siblings.
Parents have greater symptoms of:
Headaches, heart palpitations, nausea; this is even the case with parents whose child has completed treatment
Poor sleep quality and greater social stress (negative social interactions)
Approximately 20% more likely to report high symptoms of stress but low levels of perceived stress
Depression and blame
Siblings with cancer might:
Feel enormous bouts of sadness, fear, and confusion
Feel responsible for their sibling’s illness with angry thoughts or wishes
Feel lonely, sometimes jealous of the attention the sick child receives
Resent the changes that had to occur in their lives due to the illness, and then feel guilty about those feelings
Have issues in school due to loss of memory and/or concentration
Deny or hide these feelings so they do not add to the parents’ distress
Children with cancer may (depending on age and maturity level):
Be afraid and/or upset after diagnosis as well as during medical procedures
Refuse to cooperate, throw tantrums, be clingy to parents, and/or become aggressive or sad/depressed
Disruptive in school
Seek more social and emotional support from others
Fear or angry over the loss of independence
Joke around about their illness to ‘cover’ or distract from what they are really feeling
Rebel against parents, doctors, and treatments
Show intense emotional responses
Some data suggest that approximately 13,500 children are diagnosed with cancer each year just in the United States. Currently, about 35,000 are in treatment, and somewhere around 25% of children diagnosed with cancer die. Knowing what was just shared, think about this…. based on previous data, there were approximately 16.1 million poor children in the United States, with more than seven million living in extreme poverty. Keeping that number in mind, of those children, several have either been diagnosed or will be diagnosed with cancer; the possibility of them and their families experiencing many of the previously discussed issues is great. And please, do not get me wrong; many of what has been mentioned previously are issues that all families experience. Regardless of financial status, cancer is cancer and hurts all families just the same! Sadly, poor families are simply unable to get adequate assistance; based on actual interviews we have found that children from low-income families do not receive the same resources and services as those who do not come from low-income families. Any family with sick children suffers a great deal; adding poverty to the list of issues only enhances their struggles. So, I ask, what is the solution? From experience, I can tell you that it is not easy to watch a family go through such a difficult time. It is not easy to get to know a child, to grow to love him knowing that there is nothing you can do to ease his physical and psychological pain. It is not easy to look into the eyes of a mother and tell her that everything will be okay when you really don’t know what the outcome will be. It is that much more difficult when the family’s resources, both financial and social, are practically nonexistent. There is not an instruction guide that dictates to us how to work with, live with and love and care for a sick child, or on how to comfort their family; however, there are things that we can do. Take some pointers from Mr. Richard Nares (below). Do some research, check out the local organizations in your area, find a way to get involved, and do what you can to make a difference in the life of a sick child!
It takes a village...
Tomaro Monique