As a mother of a 10 year old medulloblastoma patient, I learned some things the hard way. I hope some of this helps you or your family. They are not in order of importance! Obviously, I am not a professional article writer, just a parent who learned things along the way.
- Take your own toilet paper & kleenex to your hospital inpatient stays, this little tip makes your hospital stay so much more pleasant!
- ASAP=get a 3 ring binder to hold all business cards of doctors, pockets for test results, calender to keep appointments on, plain paper to write questions on
- get copies of ALL test results as soon as the results come in and retain them
- get copies of MRI results on cd and mail them to at least one other institution to have them re-read as a second opinion.
- check all medications before they are injected (you will have to know the correct dose and generic names of your medications)
- during your inpatient chemo stays, request a second day of hydration if possible at the hospital-really helps with nausea and keeps your kidneys moving the chemo through
- helpful medicines for us were zophran (nausea), emla creme (to numb), miles magic (sore throat from radiation) & colace (constipation)
- Let people help if they ask- give them jobs to do or suggestions to help. You can only stand so many stuffed toys and flowers! Its hard to accept help but friends need suggestions. Wonderful gifts we received were a electric blanket (my daughter was always cold during radiation treatments), phone card(the hospital pay phone was expensive!), restaurant gift certificates, lotion to rub her feet & a high quality digital thermometer (for keeping track of fevers on chemo)
- Bring photos, games, snacks, bedding comforter, pillow to keep at the hospital
- put a candy jar in your room with a "help yourself" sign. That brings more nurses and doctors in your room more often to "check in" on you!
- Be a proactive patient advocate: write down every time and dose you get. You'd be surprised how many mistakes you will catch- either medicines given too early, too late, or wrong doses. Its scary.
- Find a survivor ahead of you in treatments/ that had similiar circumstances to help keep you positive and give you advice.
- Avoid statistics, even as tempting as they are to ask. Even if the doctor gives you 1 chance in 100 to beat this disease, somebody has to be the one and it can be you.
- Put a bin with a lid on your front porch. Our daughter was not in the mood to visit, so friends could put cards, food, gifts in the bin without us having to visit when we were all tired or out on appointments.
- Have a website. This helps people keep up on your progress without you having to re-live and repeat information over and over.
- Get on your knees and pray for complete healing and strength to get through the day.