I’ve been asked a lot over the last 16 months for advice on what is helpful when someone’s child has been diagnosed with cancer. I’ve some up with a list of things that were helpful and just good to know for us in the beginning. These may not work for everyone but, I do know that just knowing something…ANYTHING in the beginning is helpful.
1. Books-honestly I didn’t have the time or brain energy to sit and read a book…This is odd for me because I am a total bookworm but, my brain just couldn’t. I did do a little 5 minute devotional book my friend got me but any reading I did was kind of mindless reading like the Hunger Games or a fiction mystery. I think a short daily devotional like Gracelaced would be perfect. People brought us a ton of magazines and I never opened any of them. I did do the adult coloring books a lot. Stuff that doesn’t require a lot of brain power was good for me.
2. Amazon gift cards are good. Parents can get anything she needs delivered to the hospital or at home without having to go out in public. Cafeteria or gift shop gift cards are amazing. There’s also a Kroger, CVS, and Starbucks right up the road from Children’s in Dallas so those gift cards are great….if it’s a different hospital…find out what’s close and go from there.
3. Again, Children’s specific but…get a $20 weekly parking card. WAY cheaper than paying daily and you can share the card with visitors and family.
4. Emergent C is your new best friend.
5. For chemo diaper and skin rash, Phytoplex Z Guard diaper cream-it has an orange lid on Amazon…also Aquafor for mouth sores and dry/chapped skin.
6. Get a Vogmask online. They’re cloth and have a vent in them so their faces don’t sweat. You can clean them easily and they come in a small size with a strap to keep it on. We ordered two so we could always have a clean one.
7. Stuffed animals are a no no because SO many hand touch them. So tell anyone wanting to visit or send things that blankets and stuffed animals just aren’t a good idea. Thanks but no thanks.
8. Get an extension cord because the outlets are in weird spots and get Glade plug ins for the hospital room to make it smell less like a hospital
9. The air on the oncology floor is double Hepa-filtered so Chapstick and lotion are your friend.
10. Pjs that either button up or zip up the front are great for chest port access.
11. Ask for a social worker ASAP and get set up with financial aid, any and all grants/scholarships/ aid you can apply for, and if needed he social worker can set up a room at Ronald McDonald House.
12. Get notebook to write everything down in. A binder is good too (BE BRAVE BINDER SHOUTOUT). I asked for an info sheet on every drug she got and I got a copy of her blood work numbers everyday. I also wrote important stuff on a calendar so I knew when she got her last dose of each chemo, X-rays, etc
13. If/when you go home-pack an ER bag and just keep it in the car with anything you need for a night in the ER/an unexpected admittance from the ER.
14. If/when the child starts to get restless legs, pain, or can’t sleep-ask for massage therapy!!
15. Quarters are good too because there’s vending machines and the detergent in the laundry room is 25 cents.
16. Accept help. And to think of practical things people can do to help-mow the yard, feed the dog, clean the house, bring dinner, give gift cards, etc.
I’m sure there’s a ton more but, these things were invaluable for me to know in the beginning.