We got a “Joy Jar” last week during Asher’s chemo appointment. Inside the big plastic jar was a rattle, hat, socks, puppets, stuffed bear, and a couple other things. It was a nice treat during a tough appointment. Smiles are hard to come by these days, and this made us all smile.
This is a fun program that we do through the Child Life Specialist’s in either the hospital or clinic. For ever transfusion, hospital stay, poke, bandage change, etc. Asher gets a bead. The goal is to give the kids a fun way to remember their journey and to get a kind of reward or achievement badge for all the crap they have to go through with having a serious illness.
Asher is much too young to appreciate his beads, but maybe one day he will have fun looking back at what he went through through these beautiful beads.
This isn’t an organization per-say but a profession. These are amazing people who, at least when we have come in contact with them, work in the infusion clinic where Asher gets his chemo and the pediatric ward of the hospital. There job is to help the kids get through their medical junk the best way possible.
After Asher’s initial diagnosis, one of my husband and I’s big concerns, was how to explain it all to our 3-year-old. When we were admitted to the hospital for Asher’s surgery and first chemo, a Child Life Specialist sat down with us and helped us figure out how to explain it on Addie’s level, and then a day later, when Addie came to visit, the Specialist was there standing in the background to support us while we told her. I cannot explain in words what this support meant to me. I have watched them play games with kids while they get their chemo, successfully explain medical procedures to little little ones, and just be angels.
Today, as the baby is admitted for the second time in the hospital, they brought us a backpack for the 3-year-old to have her “hospital toys” in. So she would have something special when she comes and visits her baby brother.
They have lists of needs for these kids, so just call your local hospital or pediatric oncology center, and ask to talk to them to find out what they need to keep being amazing for these kids.
When we were trying to explain the baby’s cancer to our 3-year-old, one of the big things we had to explain was the central line or tube coming out of the baby’s chest. The Child Life Specialist had an answer for that: chemo duck! It’s a stuffed duck, with it’s own central line. This way, 1) the tube seems a little more normal and less scary, and 2) you can show her how to properly handle it without risking an over excited child from ripping a tube out of my baby’s heart.
It’s a very cool thing.
The costs of cancer are not limited to health care. The amount of time you spend driving and eating out is ridiculous. American Cancer Society has stepped up and helped us out with some gas cards to help during the weekly driving back and forth from the hospital for last minute appointments, chemo treatments, and dropping off his labs.
They also sent us a handy dandy organizer to help keep track of all of Asher’s labs, appointments, and health care paperwork.