As a parent or caregiver, no one knows your child better than you. You have an important role in helping the healthcare team manage your child’s care. Always pay close attention to any changes in your child’s condition, and tell your healthcare team immediately if you notice any changes or are concerned.
Use a Calendar
Each cycle of antibody therapy is a little different. Following a treatment calendar can help you keep track of the busy schedule. Understanding the order of events in each cycle can help you to plan ahead before clinic appointments and hospital admissions. It may also help you to anticipate when you may need to take time off work and schedule childcare for siblings.
Keep a Journal
It may be helpful to record notes about medications and other information to help you better understand the regimen and your child’s progress during each cycle. Please go to Unituxin.com where you can download and print a caregiver journal that can be used for notes.
Don’t Forget to
Isotretinoin (also called retinoic acid or RA) is an important medicine in this treatment regimen. Your healthcare provider will tell you what days this medicine needs to be given at home. It is important to be sure that your child has an adequate supply of the medicine prior to leaving the hospital or your clinic appointment. Tell your healthcare provider immediately if your child misses any doses. Ask your healthcare provider or pharmacist if you have any questions about your child’s medicine.
Take Care of
It is not uncommon for siblings to have a difficult time understanding why their brother or sister is sick. Siblings can often feel forgotten and may need additional attention and support because the child with cancer requires so much focus. For more information on helping siblings cope, you can visit the SuperSibs page of the Alex’s Lemonade Stand website at https://www.alexslemonade.org/campaign/supersibs-sibling-support-childhood-cancer-families.
Ask for Help
Caring for a child with cancer can affect you physically as well as emotionally. It is important to reach out to friends and family for support during this time. Be specific about what you need. Sometimes help with chores can be just as valuable as a listening ear.