Resource-Guide-revised-12-17.doc

Resource-Guide-revised-12-17.doc - 1 Pediatric Cancer...

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1 Pediatric Cancer Resource Guide For Families updated 11/3/2017 1
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2 GENERAL INFORMATION As you contact resources on behalf of families, you may become aware of updates or changes such as a different contact person, telephone number, or website. You may also discover that a resource is no longer available. Please notify the Managing Director of any changes so that this information can be shared with all Caseworkers, and this manual can be revised accordingly. BEFORE CONTACTING A RESOURCE Please be mindful of your working relationship with hospital social workers as you advocate for your families. Remember that it is ECF policy to regard the hospital person as the primary case manager, and they are often the referral source for our families. You should check with them before contacting other agencies for assistance, in order to prevent duplication of services and you should remain in contact with them regarding your work with families, providing the family has signed a release. Over the years, this policy has evolved because we've learned that it is in the best interest of our families to do so. Working together, the ECF Caseworker and the hospital staff are able to provide a comprehensive package of support to those we serve. Of course, this does not apply if the child is no longer in active treatment or the hospital social worker is not involved. TABLE OF CONTENTS About Cancer page 3 Resources page 9 Hospital Social Workers page 22 Hospital Based Programs page 25 Wish Organizations page 26 Camps and Recreational Resources page 27 Air Travel Resources page 28 Pharmaceutical Resources page 29 Public/Other Assistance page 30 2
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3 ABOUT CANCER Cancer is actually a group of diseases, each with its own name, its own treatment and its own chances of control or cure. It occurs when a particular cell of group of cells begins to multiply and grow uncontrollably crowding out the normal cells. Cancer may take the form of leukemia, which develops from the white blood cells or solid tumors found in any part of the body. Despite considerable and continuing research, no one knows why children get cancer. Some common misconceptions about cancer are addressed below. 1.) As far as scientists have been able to determine, nothing you or your child did or didn’t do caused the disease. Cancer in children is still a largely unexplained disease and there is no evidence that you could have prevented it. 2.) Few cases of childhood cancer are due to genetic (inherited) factors. 3.) In almost all cases of childhood cancer, its appearance in one child does not mean that a brother or sister is more likely to develop it. 4.) Cancer is not contagious. It cannot be spread from person to person like a cold or from an animal to a person 5.) No food or food additive has been implicated as a cause of any childhood cancer.
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