Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

The endless waiting

Everything seems to take forever in the hospital, so parents must learn the art of waiting patiently or they will go nuts. For example, the nurse might tell you not to go to the playroom because someone will be “right up” to take your child for an echocardiogram. “Right up” can easily mean 2 hours or more. Many parents find themselves getting nervous or angry while waiting for the doctors to appear during rounds each morning (when the attending physicians, residents, and interns move from room to room in a large group), then feeling let down when the visit lasts only a few moments. If you have questions to ask the doctors, write them down and tell the doctors when they come in that you would like a moment to discuss concerns or ask questions.

You don’t have to go too crazy. Make sure you watch the videos or eat the popcorn or flirt with the nurses or taunt the residents or leave notes for the cleaning lady or chat with the security guard or make coffee for all the parents or pretend you like puking or show the nurses how to hack into the hospital mainframe or paint your face with Butt Paste. Or, all of the above, if you like. Just do something.

It helps for both caregiver and child to come prepared for long waits each time they go to the hospital. Some well-supported institutions have iPads®, DVDs, videogames, toys, and games available, but you might need to bring your own entertainment such as favorite card games, board games, computer games, drawing materials, and books. Some children will take comfort from having a favorite blanket or pillow along with them for a day in the clinic or during a lengthy hospitalization. If your child is scheduled for surgery, you can bring a good book, a model airplane project, your holiday card list, or a jigsaw puzzle that several people can work on together.

Our emergency bag had two sides. The most important was mine, because our hospital provided nothing for parents. I would pack deodorant (plus an extra set of clothes), a book I had not read (I survived on romance novels that I bought at the used bookstore, four for a dollar), decent lighting, a soft sweatshirt top and bottom to wear at night, paper and pen for taking notes, and clean socks. You might laugh, but I can deal with a scared, irritable kid for a L-O-N-G time as long as I have clean, soft socks!

On the kids’ side was an art kit with Play-Doh®, crayons, pencils, markers, scissors, glue, finger paints, clay, and reams of paper. It also had plastic cutlery, and some cookie cutters for the Play-Doh®. I always brought the game Trouble®, since it’s self-contained and the dice are enclosed in the little bubble. The pieces fit nicely in a plastic sandwich bag (or medication bag). The lifesaver was video games. They provided hours of enjoyment. We also brought a Lego® table with blocks. Since Matthew is usually neutropenic, or in isolation for some mysterious complication, we bring our own games. Monopoly® and Battleship® are both long games that can take an entire morning to play.

We also made it a habit to always bring Matthew’s special blanket on any clinic or ER visits. I cannot imagine trying to have him in the hospital without it. He does not carry it around, but it is always there at bedtime.

I also kept a box of stuff for me to do in case of incarceration at Club Children’s. In particular, the box had pictures and photo albums. One nurse remarked how organized I was, but I pointed out that the album I was putting together was of Matthew’s first birthday. (He was almost 6 at the time.)

ParkingWorking with the staff

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