“IT’S NEVER JUST A LITTLE BEAD!”

Today’s post is a long one and it’s personal but I know how much it helps me to see a glimpse into someone else’s world and unfortunately this is the world of childhood cancer. Mark your calendars for August 20th to help other brave little fighters and their families like mine.

It’s never just a little bead!

Let me start by saying that radiation unfortunately was not at CHOP and it was abundantly clear before we even set foot in the building that it was going to be a very very different atmosphere. Also due to this hospital’s COVID policies only 1 parent was allowed

April 2021: Avery had just completed 10 Fridays in a row of chemotherapy and it showed. This was her lowest point. She was covered in a rash that kept her from sleeping, so consequently none of us slept. She was feeling sick, down a bunch of weight, and didn’t want to eat. She just didn’t have anything left in her to start radiation.

This mama bear had fought for weeks to allow Avery the opportunity to receive her radiation without sedation, highly unusual as a 4-year-old, but I knew she could do it. I knew the trauma accessing her already bruised port 5 days in a row would cause so I fought for her.

The big day came and we had practiced a lot but without sleep she was a mess. She cried so hard on the table that they couldn’t line her up and it was the first time so far that I wasn’t able to be in the room with her. The nurses weren’t even willing to try again and kept talking about us putting them behind schedule. I broke. I ran to the elevator, switched places with dad in the lobby, and went outside.

I found a bench and I prayed. I openly sobbed, garnering plenty of stares from passersby. I said the rosary as my mind raced and tears flowed. Then I got a text that the treatment was started, then another that she was done.

We went back to the hotel and she took a very, very long nap, then she ate a full dinner and things began to look up. As the week went on she continued to receive her treatments awake, sleep well and eat well, and by the last day she was running in the local park. This is what I think of when I look at this part of her string of beads.

• Rainbow Lantern bead – Act of Courage for trying a second time on the first day of radiation with Daddy
• Ballet Shoes bead – Family Accomplishment for radiation without sedation, because by the end she danced into the treatment room
• Sunflower bead – For bouncing back from the lowest point, because sunflowers always grow toward the light

Please understand that though it seems small … it’s never just a little bead to us!

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NOTE FROM BEADS OF COURAGE:

In 2021, Avery was diagnosed with Stage 4 cancer and received Beads of Courage during her treatment. After experiencing firsthand the benefits of the flagship Beads of Courage program, Avery and her mom launched “Cookies for Courage.” Their goal is to raise funds to help children move off the waiting list for our Beads in the Mail program, which provides Beads of Courage by mail for children who don’t have access to our programs at their hospital or clinic.

The Second Annual Cookies for Courage event is taking place this weekend, August 18-20, in Avery’s hometown of Dunmore, Pennsylvania. Visit the Cookies for Courage Facebook page for more information. Donations to Cookies for Courage may be sent via Venmo to user name: Stephanie-Shivock. You may also sponsor a child for Beads in the Mail via our Wingman Program.