A little speech about volunteering with children with cancer

Today is my last meeting at Children’s Memorial/Lurie Hospital. I have been asked to prepare a little speech.

Today I am not here to tell Donna’s story. She was a girl who lived a bright but cruelly short life. And she changed my life to its core. I could never do her story justice, and her parents tell it best. Her story continues now as good things are being done in her name. Today, I am only here to explain why I give my time, energy and dollars to the Young Associates Board at Lurie Children’s Hospital of Chicago.

First of all, cancer brings out the best in people. It is an evil disease. Sickening and dark.

Donna and I in 2009.

But those who face it are superheroes. In and around cancer, you find the most amazing people (even though they say they had no choice but to be amazing). Also, in and around cancer, you learn the most profound lessons. You become better. No doubt. It might sound selfish, but this work does wonder for my own development.

Yet, I don’t volunteer with organizations supporting research/programs for adult cancers. My father faced cancer, my grandmother died from colon cancer, and both of my mother’s sisters battled breast cancer. Yes, cancer can suck it. But I volunteer to support those facing childhood cancers because I know it is an area so desperately underfunded and so very different than adult cancers. I know the American Cancer Society is the “sponsor of birthdays” and uses kids’ images in their ads while only giving $0.01 (penny) from every dollar they raise on childhood cancer research. I also know that the Susan G. Komen Foundation has spent millions to sue small organizations that use “for the cure.” I know that the National Cancer Institute (NCI) which is our public tax dollars at work decreased funding every year 2003-2008. The current funding is $26.4 million (or 4% of the NCI budget). By comparison, public funding for AIDS research is near $254 million; funding for breast cancer is near $584 million. We simply don’t have the numbers.

But pediatric brain tumors are the deadliest type of childhood cancer. And killed my dance student, my friend Donna when she was 4 ¼ years old.

A list of those outstanding organizations directing at least $0.80 of every dollar to childhood cancer include St. Baldrick’s, Alex’s Lemonade Stands, The Rally Foundation, Bear Necessities, and the Young Associates Board. I volunteer here because Dr. Stew, Dr. Jason, the nurses and the whole team go above and beyond the work they do saving lives; they also save the quality of lives. Once I learned from Dr. Stew that finding cures and lifesaving were just two of the goals, I saw my place in this work much deeper. Many of the kids you will meet on the oncology ward may die or may struggle. It’s true. But I think that is no reason to look away.

Yes, you will meet parents who grieve for their child, but know they did everything they could and gave their kid a beautiful life. Bereaving families are as much a part of this cancer community as those currently fighting and those who survived. We’re all together in this. When you meet survivors of childhood cancer please understand they face side effects for the rest of their days, including permanent organ damage, infertility, dental decay from having to imbed oral chemo in the sweetest of treats, delayed development (walking, talking, learning, social), swelling, nerve damage, and second cancers. Many will struggle in college. Many will always have the fear that cancer will come back.

So as you go into this year with the families on the 17th and 18th floors of Lurie Children’s Hospital of Chicago, please…

  • Offer joy.
  • Bear witness.
  • Share stories and legacies, including those from 4W of Children’s Memorial, as the move to the new hospital is both thrilling and painful.
  • Remember that working and volunteering in the world of childhood cancer may be like constantly having PMS. Emotions will sway you. That’s ok. Donna taught me to experience pain and fear fully, then move on.
  • Find balance. Maybe you can only give 10% of your energy to the YAB throughout the year, maybe you can give 100% but only for three or four months at a time.
  • Sometimes these patients grow up way too fast and are mature beyond their years, to an extreme level. Go with it. Follow their lead, just as their parents do. Also sometimes they are 18 years old and just want a puppy and time to watch Finding Nemo. Don’t assume you know what they want. Ask them. But also surprise them. You don’t have to work for Make-A-Wish to make wishes come true. A baseball game, a superhero cape, a dance class, an electronic gadget can mean the world to someone.
  • September is Childhood Cancer Awareness Month. The color is gold. Do something.

And as you walk about the race site and museum during the 10th Annual Run for Gus this Thursday…

  • Look people in the eye.
  • Rather than offering advice, just ask questions. For example, if you see someone with a Team Tyler t-shirt, simply pleasantly open with, “Tell me about Tyler.”
  • Smile genuinely and proudly at Rosie, Connor, Jake, Beckett and all the superheroes you have the honor of meeting.

Those who currently battle, those who grieve, and those who survive all share battle scars and bold joy you are unlikely to see anywhere else. I would like you to now watch this video from last year’s Run for Gus and see if you can spot the joy. http://youtu.be/UUd_VRwEFDM It’s amazing to see.

Thanks for allowing me to be a part of the YAB these past 3 ½ years. I am a better person for it.

Read Donna’s Cancer Story as told by her momma.


  1. Liz

    Found your blog via Sheila’s link on Akin, but it was this post that brought me to tears. You are one amazing, compassionate, thoughtful, generous, beautiful, sexy woman. I hope you turn Cairo upside down. I’m choosing hope for you, my friend.

  2. Elaf

    u r such a great women and u r doing a great things to help,keep doing this and i hope when i become older i can help them just as u do………..

  3. Molly

    Shawn – You’re amazing, an inspiration and someone we could all learn a lot from. Thank you for sharing this… just wonderful and such important tips and reminders. Thank you.

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