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Donna’s Cancer Story: How to Help
Yesterday’s post, the last of thirty-one installments of Donna’s Cancer Story, was titled, The End, but when I shared it on facebook, I wrote, “The End is not the ending.” The End was the end of Donna’s Cancer Story, but, clearly, not the end of Donna’s story, because here you are.
In the midst of her vigil, the owner of the studio where she practiced dance called to offer her love and support. We talked a few moments and I told her that when things calmed down, after Donna died, we wanted to do something to give back to the studio that had shown such love to us, like maybe a scholarship. Miss Katie loved the idea. There were two girls that recently had to drop out of their classes because of finances, so there was definitely a need. “Two girls?,” I asked. “Yes, sisters,” Katie answered. “Call them and tell them to come back to class,” I said.
We wrote a check with funds our friends had raised for us early on that went unused. It was crystal clear to us: if Donna could not dance, others should. And in the midst of such pain, I felt a moment of joy. Just like that. When Donna died, others donated to the fund, too.
The next month, we decided to purchase a dozen personal DVD players for oncology patients at Children’s Memorial. Donna’s had been such a saving grace during the long hours of treatment, but it was clear that not all families could afford them. More joy when we heard from hospital staff about what a difference they made to the kids who received them.
A few weeks later, a friend sent along a check for the fund and wrote, “Here is a donation for Donna’s good things.” Donna’s Good Things! Of course!
Another Cancer Mom and I talked on the phone sometimes about our sadness and our losses and how life moves on, impossibly. Our kinship had endured the loss of both our kids and to this day I still see her as my teacher, that we were drawn to one another because the Universe knew we needed it. We joked about the cliche of losing a kid to cancer: ya gotta start running 5Ks and ya gots to start a charity. Check and check!
Mary Tyler Dad and I got serious in the spring of 2010. A former roommate’s father, neighbors over in Survivors Glen, offered to incorporate Donna’s Good Things (DGT) as a 501(c)(3), pro bono. We worked to build a web site, but that process was slow as molasses. Our designer was fantastic and raring to go, but the content was my responsibility and each word hurt like hell to write. What should have taken weeks took months. The grief was too fresh and the transition of Donna from live girl to charity icon cut wounds in me.
During these months a friend in Ohio asked, “What can out-of-towners do?” Friends had held a couple of small fundraisers in Chicago that we publicized on Donna’s CaringBridge site, and our Ohio friend raised the very real question that with Donna’s support network being Internet based and global, we needed to think about that question.
It stumped me for weeks, and then, like a snap of the fingers, I had it: there would be Our Good Things and Your Good Things. In my notes I scribbled, “Imagine a little girl, who despite not being here, is still making things happen, good things, Donna’s Good Things. We want a movement, not a charity!”
Here is our official mission statement:
Donna’s Good Things aims to:
- Provide joyful opportunities for children facing adversity, be it economic, familial, social, or health related; and
- Encourage Your Good Things by providing an online community where folks can share in words and photos something they’ve done influenced by Donna’s inspiration.
Our Good Things + Your Good Things = A Lot of Good Things!
Our Good Things has thrived with continued donations. Since Donna died we have:
- funded sixteen dance scholarships at Performing Arts Limited;
- donated twenty personal DVD players to individual oncology patients at Children’s Memorial in Chicago;
- equipped each Child Life Therapist on the oncology in- and out-patient units at Children’s Memorial with iPads for children to have fun and learn about their diagnosis using specialized age appropriate apps (one of the iPads was sponsored by Benny’s World);
- hosted our annual Happy, Hopeful New Year’s Eve bash on 4 West, the inpatient oncology unit at Children’s, complete with music, dancing, sparkling cider for midnight toast, and massages for the Cancer Parents;
- sponsored monthly Wiggleworms concerts for younger patients at Children’s;
- received a grant of $1,000.00 from the DRW Foundation to purchase library books for an underfunded Chicago Public School (surprisingly, this has been really difficult, as none of the schools we have reached out to seem to want them!);
- participated in Team Dancing Donna in the annual Run for Gus 5K, contributing over $16K to the brain tumor program at Children’s Memorial, specifically Dr. Stew’s own research.
While Our Good Things has thrived and brought us a lot of joy, Your Good Things has not. I talked about this with a friend who does non-profit marketing and she acknowledged that getting people to do something was hard. Really hard. Like, almost impossibly hard. Sigh.
Midway through writing Donna’s Cancer Story, when people started asking, “How can I help?’, and commenting, “I want to do something for Donna,” the idea of Your Good Things came back to me. You, dear readers, are the seeds of Donna’s movement. You. Just look what you’ve done in these few days:
- Amber in Montana who wrote to tell me Donna was inspiring her to quit smoking;
- Annie, a local gal, who wants to use her monthly charity group to bring awareness to DGT;
- Tracy who will wear a ribbon to honor Donna in next week’s Chicago Marathon;
- Andrea who made a donation in Donna’s name to Every Child is Born a Genius;
- Kathy in California who is driving her friend’s mother to doctor appointments after losing her own mother in July;
- Heather in Michigan who saw the bedtime ritual with her kids as a blessing and not a chore the other night;
- Amy in Florida who has signed on to be a Chemo-Angel;
- Kim from the Junior League here in Chicago who want to partner with DGT in November for a project;
- DP from Texas who is now letting her daughters “guide” her as Donna did us;
- Jamie in Virginia, a manicurist, who did a special black and gold manicure and posted why on her blog to raise awareness about pediatric cancer;
- and on and on and on and on and on and on and on and on and on!
As the parent of a dead child, the mother of dear Donna, you have no idea how this makes me feel. Words fail me. Words never fail me, ask Mary Tyler Dad, but words fail me when I see the effect Donna has had on you. While I have been so focused on writing and mothering and working these past 31 days, your kind comments and gestures and offers to volunteer and donations have gone unacknowledged by me. They are overwhelming and astounding and the seeds for the movement that has eluded Donna’s Good Things thus far. Tomorrow I will start that lovely project.
So to answer the question, “What can I do to help?,” please know that by reading and keeping me company this month, and sharing Donna’s story, you already have. Talk about pediatric cancer. Look the parents of bald children in the eye, and smile at that child, knowing they are strong and vulnerable. And, selfishly, please keep Donna in your thoughts and actions. Do not forget her. Remember that a most amazing little girl was here and lived a wise and beautiful life. Choose hope. Live until you die. But specifically, and more concretely, here are some more things you can do to help:
- If you’ve already done Your Good Thing or are thinking about it, tell us about it! Go to the Donna’s Good Things’s website and post it, including a photo, if you have one. There is a new super-cool facebook and twitter share feature, so once it’s been reviewed and approved, you can show your friends and family what you’ve done. I’ll be sharing some on the DGT facebook page, too;
- Oh, and speaking of facebook, consider liking the DGT facebook page where we post a Good News Story of the Day. This is the place to get the most up to date news about Our Good Things, too. Think of this and the DGT website as our clearninghouse of good. If you need a little dose of good in your day, stop on by for a boost; if you’re having some trouble choosing hope, as I do some days, pop in and get inspired;
- Plan a Your Good Thing fundraiser with proceeds donated to DGT, like Miss Katie’s Donna’s Dance-a-thon, which raised $240 for us, or Talia’s 4th of July lemonade stand at the Evanston parade, which raised $65. DGT can supply you with an electronic kit, including our logo and photos of Donna, to promote it;
- Consider donating your charitable dollars to Donna’s Good Things — good things cost $. Your donation, regardless of size, will help continue the good things we are committed to, like dance scholarships, and books and music, and electronics for kids with cancer. Our Good Things will continue to focus on those things that brought Donna comfort and joy in her life;
- Purchase a $10 ‘CHOOSE HOPE’ magnet from Pixeldust & More, our friend Anne’s studio, who photographed Donna so beautifully. She has posted them for sale at her smugmug.com gallery and will donate all proceeds ($5/magnet!) to DGT, her good thing to honor Donna. Click on the photo you like, hit “Buy,” “This Photo,” then click the green tab that says “Merchandise” for the magnet;
- If you’ve read Donna’s Cancer Story, but haven’t shared it, please do so now. It will remain catalogued on Mary Tyler Mom’s site for the duration. What I hear from folks is that it moved you, some to hug your kids tighter, some to understand pediatric cancer better, some to enjoy life more. Pass that on, pass on Donna’s love and wisdom and joy so that more and more and more folks can benefit, as you have, from my brave girl.
Raising awareness about pediatric cancer was the ultimate goal of Donna’s Cancer Story. It was my belief that if folks could come to know Donna, they would come to know pediatric cancer and what a beast it is. I think it worked. Your unfailingly kind comments and hearing from other Cancer Parents from every neighborhood of Cancerville, tell me it worked. There are two charities we support that excel in their efforts to increase awareness and research funding for pediatric cancer. They are:
- CureSearch, which is a “national non-profit foundation whose mission is to fund and support children’s cancer research and provide information and resources to all those affected by children’s cancer.” CureSearch also manages the Children’s Oncology Group (COG), the largest cooperative research entity in the world, of which Dr. Stew and Children’s Memorial is a member hospital. 95% of every dollar raised goes to program expenses; 2% goes to fundraising expenses; and 3% goes to administrative costs.
- St. Baldrick’s is a “volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.” To date, St. Baldrick’s has awarded over $76 million in research grants to over 230 COG institutions. 78% of every dollar raised goes to research; 19% to fundraising expenses; and just 3% goes to administrative costs.
Tell ’em Donna sent you!
Okay, dear reader, from the bottom of my broken, damaged heart, I thank you. Mary Tyler Dad thanks you. 439,392 page views later, yes, I think it worked. It worked, because of you. I am endebted to you for bringing me into your home and cubicle and bathroom stall and soccer field and car and kitchen. If only I had bought stock in Kleenex, I’d be a rich lady.
Know that what you’ve done, willingly witness Donna’s life and death, took guts. You did it. You are amazing. Never forget that.
RIP, Donna Lubell Quirke Hornik, 20 July 2005 – 19 October 2009
We’ll meet you there, girl.
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Donna’s Cancer Story: The End
This is the thirty-first of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
There are no photos of Donna today, as there is no Donna today. Donna died on October 19, 2009. She was four years, two months, four weeks, and one day old.
The Bubble we had enjoyed permanently popped one afternoon when Donna woke from her nap. When she reached to take my hand, I noticed her left arm was trembling, shaking gently. A couple of days later her head started tilting to the left. A couple days after that her balance changed. Then her walking.
The signs were unmistakable. The terror and doom consumed more and more of my thoughts. The reality of what was happening to Donna was indisputable. She would die and it would be soon. Days? Weeks? No one knew.
Donna continued in pre-school during this time. I fretted so as I dropped her off in the morning. I asked her if she would feel more comfortable if I stayed with her, that I could help her if she needed it. “No, Mama. If I need help, I will ask a teacher.” Grit and grace in equal, lovely portions. I would wait anxiously for her at the end of the morning when the parents gathered to pick up their kids. Each day, her teacher reported Donna did beautifully, that she had not needed any help. She played outside, and climbed the stairs to the library, and showed no signs of distress. That was Donna. Strong as an ox, yet delicate as a flower. That was her beauty, her shine.
On a Thursday night, stalling as she did so well (“My Little Stallina” is what her Daddy called her), Donna gave her Dad and I a concert. She stood on a step stool and sang “I’m a Little Teapot,” “Twinkle, Twinkle Little Star,” and “Row Row Row Your Boat.” She sang each song three times. She was beautiful. And so happy.
The next morning Donna woke and was different: moody, clingy, listless. The next day, after a trip to the zoo and a nap, Donna woke with a headache. The hospice nurse came immediately and started morphine with good effect. Donna asked for macaroni and cheese, “the good kind, Mama,” and I ran to Noodles and Co. for her. God bless the stranger who sat next to me as I waited for the order. Donna ate well and promptly threw it all up, but felt great. She had a bath and played, played, played. She was loud and I worried her singing would wake up Mary Tyler Son in the room next door, but I didn’t care.
We had another trip to the zoo that week, Donna bundled and her cheeks covered in her Auntie’s deep pink lipstick. She rode the carousel and was happy. On the night before my birthday, Donna baked me a cake. She used the heart shaped pans. It was delicious. A couple days after that, Donna spoke her last words. “Mama, Mama, Mama,” she called out to me. Her tone was anguished. I held that girl tight and close for the last time.
Dear friends made a pumpkin memorial to Donna on our front lawn during her vigil. There were dozens and dozens of pumpkins with written messages of love and support for us and jack-o-lanterns that lit the night with their warm, comforting glow. Each night someone appeared to light them and after Donna died they took them away for us.
After a few more days of deep sleep, Donna died. She had been receiving morphine to manage her pain and she appeared comfortable. No grimacing, no furrowed brows. On the fourth night of Donna’s deep sleep, her Dad and I fell asleep at midnight. At 2 a.m., when the medication alarm went off, Mary Tyler Dad woke and Donna was gone. He gently touched me, my eyes opened to Donna next to me, and it was over.
In the end, Donna knew she would die. Unlike me, she had the courage to bring it up so we could acknowledge it. At the suggestion of a neuropsychologist at Children’s Memorial, we bought a book called, Lifetimes: A Beautiful Way to Explain Life and Death to Children by Bryan Mellonie and Robert R. Ingpen. God bless these two men. If I had to look at one more suggested book about burying a cat or a fly-a-way balloon to use as a tool with Donna about her death, I would have hurt someone.
We put the book into circulation, and Donna was fascinated with it. We all were. The illustrations are gorgeous and do not attempt to make death pretty with balloons and rainbows. Death is not pretty. It is real and can be beautiful, but it is not pretty. As with everything, Donna took the book in and understood it more deeply than we could have imagined.
One day, on the drive to her school, Donna asked me from the backseat who we knew that was dead. She told me she would miss me when she died and she worried she would be sad and lonely. Then she told me that bones didn’t walk. Bones had become a symbol of death for her because of dinosaurs. She was fascinated with them. She knew that my Mom, her Baba, was now bones. I agreed with her and told her that bones needed muscles and skin to walk. She calmly told me that bones did not talk either. I told her that I didn’t think bones needed words. I told her that many folks believed you come together with the people you love after you die. I told her I hoped I would be with Baba after I died. Driving, tears streaming down my face, I could not tell my daughter that I hoped I would see her again after she died. I couldn’t do it. Fail.
Five days later, at bedtime reading books, out of the blue Donna said to me, “Why am I worried I’m dying?” She said it twice in a row. “Why am I worried I’m dying?” We talked about her question and quietly, I agreed with her. I told Donna I thought she would die soon, too. Her tone of voice, both of our voices, were calmer than one would think in that kind of conversation. We talked about how sad her dying made us. We talked about heaven and that many, many people believed it was a place of reunion and peace. A few moments later, I asked Donna why she thought she was dying, did she feel differently?, or did she hear someone say those words to her? Donna told me she was hearing things her body was telling her. I was comforted by how relaxed she was in our conversation. She was not overly afraid, but honest and curious and open. I turned out the lights and we snuggled. Donna asked me what my favorite part of the day had been. “Our talk just now,” I said. “Me, too,” she said.
Fifteen days later, Donna died.
Row, row, row your boats, dear readers, gently down those streams, because merrily, merrily, merrily, folks, our lives are but a dream.
Mary Tyler Mom 