Life at Home

Being in the hospital is a stressful time for any family. But for very sick children, a hospital stay is another chapter in their ongoing care. Parents and child arrive with accumulated stresses from home.

Ongoing Pressures

Below you will find two excerpts from an Internet mail group for parents caring for children with brain tumors. These are extremely powerful depictions of the ongoing pressures a family can face. One mother felt the need to vent her frustrations from daily life (Freaking Out). Another mother rushed to console her, and then detailed some of her own frustrations (Freaking Out - Response).

Meds at Home

For the very ill, home is not always a refuge from medical treatment. In addition to the pressures of dealing with a sick child, parents must deal with the responsibility of administering medicine. During the last three months of Faith’s life, we were required to provide constant medical attention and to administer a complicated schedule of medications. To keep track of her meds, we made up a checklist every week. These checklists became the way we measured the progress of time. This is the checklist from Faith’s last week.

For other caregivers, the pressure of dealing with medications involves their side effects. Every parent holds two visions of their child: the child that is, and the child that was (pre-diagnosis). Treatments that take the child closer to what was are good. Medicines that take the child farther away from that point of reference are "bad". Prescriptions that decrease a child’s quality of life are also "bad", especially so for a terminally ill patient. The following submission concerns the use of decadron on young Liam Tamayo.