When Jack was diagnosed with Leukemia, I looked for tips on how to prepare our household for the journey ahead. I didn’t find much in the way of practical tips, so I’ve made my own list in the hopes that it can help others. If you have something to add, please feel free to leave your suggestions in the comments!
Items to Make Life a Little Easier
Get a CaringBridge (or similar) website, so that you only have to go to one place to tell all your friends and family what is going on. It will save you a lot of grief!
Buy hand sanitizer in bulk and place it strategically around the house, particularly near food items. Also store it in the car, your purse, and the kid’s backpack. Throw in some Clorox wipes, too.
Pills can be administered by using various liquid substances (and you may find yourself trying them all): pudding, yogurt, applesauce, peanut butter, nutella, whipped cream, jello, jam, chocolate syrup. You can also try FlavorX. Crushing the pills into any of these substances or making them into candy is an option, too.
Buy some disposable cups, plates, eating utensils for when you are just too tired to properly sanitize dishes.
A pill organizer is a godsend. I prefer a pill organizer that has slots for multiple times per day. It’s best to organize the pills into the little compartments a week at a time–you can then easily see what refills you might need ahead of time and get the refill request in ahead of time.
Get some books to help your family (especially kids) understand what is going on. Often these books are free from foundations like the ACCO or your social worker can recommend some titles. Some of our favorites are The Famous Hat, Little Tree, and Taking Cancer to School.
Keep two thermometers on hand. That way you can cross-check temperature readings if something looks weird or you’re feeling extra paranoid.
If you are doing dressing changes (with a Broviac catheter, for instance), order adhesive remover to make it easier. (Some hospitals may provide this; ours did not.)
An adjustable, compartmentalized organizer box is fantastic for keeping medical supplies such as Heparin, specimen tubes, and dressing supplies in.
Practical Advice for Caregivers
Don’t argue or joke with a kid on steroids–it’s just not worth the drama.
Buy foods that have individually packaged servings to avoid throwing away leftovers. When you have an immune-supressed child, you won’t want to feed him/her anything that is even remotely questionable.
Keep a variety of foods in the house–you never know what the chemo-affected appetite will call for. The kid may suddenly become sensitive to sweet stuff and prefer salty stuff, for instance.
Teach the kid how to let his friends know about being careful around any dangling medical apparati. We let everyone who plays with Jack SEE his Broviac catheter so that they don’t forget it’s there and accidentally pull at it.
Attend events for families dealing with cancer. The support is amazing, and you can gain so much perspective from others’ experiences.
Stock up on cozy things, such as soft clothing, pajamas, lovies, and blankets. When a body aches or a child needs comfort, soft things are the BEST. Jack’s favorite pajamas are long-sleeved flannel and button up the chest; this way he can be warm and cozy while he’s getting a dressing change for his chest catheter.
Embrace convenience–meal delivery services, drive-thrus, prepackaged meals, protein shakes.
Assign a friend to screen medical information in books or on the internet. They can then relay the important information to you MINUS the horror stories.
Avoid and Relieve Burnout
- Get out of the house/hospital/etc. Don’t worry about what people might say/think/etc about it! Take any kind of relief you can get during this super stressful time. This can mean a vacation, a stiff drink, physical activity; what relieves you may vary from what relieves someone else.
- Don’t be afraid to ask for and accept help. You need it–otherwise you WILL get burned out. Cancer is a long journey.
- Help includes financial: Accept money offered. If you don’t end up needing it, you can give it back later. There are ALWAYS surprise expenses that insurance or foundations won’t cover.
- Take a nap. It’s easier to handle things if you’ve had rest.
- Consider getting a prescription sleep aid and an anti-anxiety medication for yourself before problems arise. It’s likely that your sleep will be interrupted at some point, and panic attacks often hit at the least convenient times.
You can’t be too cautious or careful. If you feel like you need to take your kid in to see the doctor, DO IT. Better safe than sorry!
Remember: Hang in there and take it one hour, minute, second at a time. Somehow, you’ll get through this.