The Bag of Everything
This is the list of everything that went with me to clinic days, it was my first grab for any appointment and I knew that if I had to make a dash to the hospital for any reason, I had the basics.
- Hand sanitizer
- Wet wipes
- Numbing cream and band-aids
- Pens – for taking notes and drawing faces on nitrile glove balloon people
- The binder of everything
- Swiss army knife (primarily for the scissors which were helpful for breaking into craft kits, cutting off medical ids, getting rid of pesky clothing tags, etc)
- Press and seal – use in place of tachyderm for numbing cream, wrapping up leftover play-doh, covering food, and making drums out of paper cups
- Condiments- soy sauce and salt for steroid week, packets of ketchup and mustard, a little bottle of hot sauce, coffee creamer packets, all to make hospital food bearable
- Change of clothes for the kid and a sweater because hospitals are always freezing
- Multi-port charger
- Fruit snacks and small candies – for bribery
- Craft kits and play-doh
- Empty water bottles
The Binder of Everything
When we were first diagnosed our medical team gave me a three-ring binder and a ton of paperwork, and three tab dividers. I stopped the poor nurse in her tracks as she was about to start explaining and asked for 6 more tabs and 15 minutes to get organized. I highly recommend you do the same, this journey requires herculean data tracking tasks, doctors and nurses will expect you to know the answers to the most absurd questions off the top of your head (can you recall if your child had a bowel movement Tuesday?) and frankly, you will be given so much information, keeping track of it all in one place will just be one less thing to worry about. Here is how I organized my binder of everything.
Business Card Holder:
Clear plastic business card holder – for all the specific contact info of team members
The medical team – our hospital gave me a one-page photo sheet of the entire pediatric oncology team which was helpful
The printed calendars were inserted with the newest on top to keep track of important dates
Test results – also chronological with newest on top for quick glances backward for comparison
Legal paperwork – consent forms, protocols
Medicines one-page fact sheets I was given on each type of medication
Side effect fact sheets
Social worker information, support, parking, vouchers for meals
This is a list of things you can do to support a family going through pediatric cancer. Please remember that cancer treatment isn’t quick and often the overwhelming offers of support that come with the shock of diagnosis fade, but the need doesn’t.
This is probably the most often expressed unmet need for families. Many parents quit or scale back on jobs in order to provide care and that often means becoming not just the primary caregiver of a sick child but still needing to attend to the needs of the other children. Providing a few hours of childcare can free up a mom to get the grocery shopping done in peace or let dad have a few hours to catch up on the vacuuming before the next storm hits.
Immunocompromised kids have to have a clean and sanitary environment but figuring out a time to do that is incredibly difficult. If you can afford or fundraise for a weekly deep clean that’s quite possibly the greatest gift you can give because it gives caregivers back both time and peace of mind. If you can come by and wash windows once a month or open your home up to the kids to play to give someone else a time to clean, it’s a huge help.
Sites like “Take them a meal” can really make it easy to organize ongoing support for families and make sure they know when meals are coming, but also take advantage of BOGO gift card sales on the holidays, make a double portion of something freezable one night, or organize a baking day (my kids live on muffins and I can microwave one a morning and breakfast is handled), having some flexibility for steroid week when your child is eating you out of house and home is invaluable.
Bringing home a child with a compromised immune system is a lot like bringing home a newborn. Suddenly the parent has to evaluate the home with a whole new set of eyes, looking for danger. Is there mold in the basement? Mildew in the carpet? Are the air filters clean? Is the water safe? Helping a family identify hazards and remediate them is peace of mind and safety for that child
I’ve yet to meet a kid that doesn’t love receiving mail. There’s something just magical about something addressed directly to them. A simple letter or card is a big deal, just make sure to include siblings in the fun!
It’s tough being the sibling of a seriously ill child. Most kids handle it beautifully, however, feeling overshadowed is never nice. While parents are wrapped up and overwhelmed, doing something special for a sibling not only helps them feel important but takes one more thing off the plate of the family, plus you have an opportunity to bond and get closer to an awesome kid.