As your family works through your child's cancer diagnosis and treatment, you may find yourself feeling overwhelmed by all you have to manage in terms of appointments, medicines and home care.
Here are a few tips to stay organized:
- Keep a business card index sheet with you at all times with cards from physicians, physical therapists, medical supply companies, pharmacies, labs, school personnel, etc.
- Put all contact names and numbers in your cell phone so they are always readily available.
- If you have a number of medications to keep track of, make a chart listing medication name, dosage, times to be given, and route, such as by mouth, g-tube, etc.
- Double check dosages to make sure you have recorded them correctly. Ask if you aren't sure. This can be done using a computer spreadsheet or graph paper. Either way, check off each dose as it's given and record any variation from the schedule. This is especially helpful if there is more that one caregiver.
- Watch for any side effects and make a note of when they occurred. Call with your concerns.
- Update your care page as you have time. Older kids can do this, or you might wish to have a joint effort.
- A daily journal or calendar is a good place to keep track of your child's treatment. Write down each treatment, side effects, medications, tests, surgeries, procedures, doctor appointments, and questions. It's helpful to have a record of each chemo or radiation treatment, including names of all medications used, dosage given, how administered, and special notes such as "infused over 4 hours"
- Keep supplies in labeled plastic storage drawers or containers. Small plastic cabinets with shelves can be purchased for this purpose, or use a dresser drawer with shoeboxes as organizers. Support supplies can accumulate, so it's helpful to develop a system to keep them organized and available when you need them.
- Categories such as "IV," "feeding," "topical," etc., can help you easily find what you need.
- If you keep most of the medical stuff out of sight, your home will feel more "normal".
- If you have toddlers or young children, you will need to take precautions to ensure medicine is stored safely.
Contributing sources: Parents of patients of Rocky Mountain Pediatric Hematology Oncology