Tag: Donna

A Brain Tumor At My Dance Recitle

Last week, 16 years after graduating, I went back to my old dance studio. The building is different and the technique has been turned up, but the environment was just the same. The culture, the 1986 trophies, my picture on the wall, the notice about competition fees and Cecchetti ballet exams, it all brought me home. This is how I grew up. I danced on the pre-Dance Moms competition circuit for most of my life. [You can watch humbling evidence by clicking here.]

This is where I fell in love with dance, with challenging my body, with entertaining a crowd. This is where I criticized myself in a mirror for over a decade. My teachers (Karolyn, Renee, Donna, Linden) pushing for me and my dance pals to take big physical risks and to dance with everything we had, from brain to pointed toes. This is where I eventually turned away from the mirror and the competitions, and toward artistry and altruism.

Bohaty’s School of Dance in Mid-Michigan. This is where I met some of the greatest and long-lasting friendships I have ever known. If you or your children dance, you probably know what I mean.

Yesterday I walked into the studio and hugged my former student Kelly, who is now a lead teacher. An impressive one at that. I participated in the stretches and exercises then sat on the side to observe. Kelly informed the students that there was a large card on the floor they all needed to sign after class, because one of their friends has a brain tumor. Tomorrow this tiny dancer, Lauren, would be facing another brain surgery.

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I accidentally dropped my pen. Struck by the words. Another dancer. Another brain tumor. Another relapse. Another surgery.

Childhood cancer striking another dance studio.

This is Lauren. She is 10.

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As you can see by her self-made photo, she hearts dance. She also kept getting headaches. The doctors found a lemon-sized tumor in her brain 19 months ago. They did brain surgery right away and her family was told there was only a 1% chance the tumor would return.

But it did.

And so this dancer is facing another brain surgery.

This news hit a particular spot in me. Donna was a student of mine. She danced every week, despite having a brain tumor. She had a relapse. She had another surgery, and another. She learned to walk and talk all over again, several times in her four years. Read her cancer story here. She was amazing. She continues to inspire me, friends and strangers around the world to do Good Things in her name. Maybe you’re one of them.

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Donna and I on her 4th birthday.

If you’ve been following my blog, you probably know my mother is fighting breast cancer and that my father and grandmother and aunts also battled cancers. My heart and support is with them. But when it comes to this cause, my dollars and energy go to the kids.

Like the color for breast cancer is pink, the color for childhood cancer is gold. There are no NFL players wearing gold socks; no gold buckets of chicken from KFC; no overpopulous of gold ribbon water bottles. Many national cancer organizations use children’s faces but little (half a penny for every dollar donated) goes towards treatment, research or trials for children’s cancers. I wrote about this desperate underfunding in a previous blog post.

  • worldwide, a child is diagnosed ever three minutes;
  • brain tumors have a 50/50 cure rate in the US, and some childhood cancers, like DIPG, are known to be fatal with no known treatment or cure;
  • 73% of kids who survive their cancer will have chronic health problems as a result of their treatment.

And if you know this issue, you know that kids are not just mini-adults. Their cancers require specialized treatment.

St. Baldrick’s is one organization doing the most for childhood cancer. On March 24 last year, during an event produced by Donna’s Good Things, I shaved my head for the cause. We raised over $79K and witnessed the oncologists and researchers receiving the actual funds. Dr. Lulla is using the grant money for a “A Longitudinal Study of Biomarkers in Pediatric Patients With Central Nervous System Tumors.” Other programs include research in how to maybe preserve fertility for these children, as well as a nurse or specialist to better explain the processes to the kids. St. Baldrick’s is the number one funder of research for childhood cancer outside the US, granting over $125 million since 2000 to labs and hospitals.

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The First Annual Donna’s Good Things – St. Baldrick’s Event 2012

Next month, Donna’s Good Things is again hosting a St. Baldrick’s event, with shavees ages 11 to 89. I will be back in Egypt and won’t be shaving this year. But I am inspired that a childhood friend of mine has decided that she would be gracious enough to step in. She has committed to driving hours to Chicago and shaving her pretty locks. An act of courage and love, believe me. You can donate to her campaign here. Right now. Click the green button and give $5 or whatever you can.

If Donna can no longer dance, maybe we can make it possible for Lauren.

And to Lauren, we say, “Keep your dancing shoes on, gal. Keep hoping.”

 

Cancer on Two Continents: A Dancing Day at 57357

When you are 4-years-old and there is some beast inside you that you don’t understand. When you are told you are sick and you don’t feel sick. When you are 13 and facing chemotherapy and puberty simultaneously. (Well, some version of puberty.) When you are 7 and your limbs don’t respond the way you want them to. The way they used to…when you used to be able to swim and run. When you don’t feel comfortable in your bones. When the adults around you offer you strange smiles. When the tumor on your little head is obvious for all to see, and your classmates stare at where your eyebrows used to be.

That’s when you boogie.

Dancing at 57357 (Photo by Mohamed Radwan)

I met a young dancer named Donna Quirke Hornik back in Chicago a few years ago. She stepped into my dance class at age 3 and changed my life. She danced every week even though her small body went through surgeries, transplants, chemo, radiation, and treatments I can barely imagine. She had an aggressive brain tumor. I saw how dancing gave her both a physical therapy and a sense of being hopeful and happy in her body. Because of her, I got involved with Children’s Memorial Hospital, now Lurie Children’s Hospital of Chicago. I joined the Young Associates Board and kept on teaching dance to current and former patients.

Donna taught me to say yes to all of life’s experiences. She taught me to feel fears and pain fully, then move on. She taught me that when there is misbehavior all around you, stay focused and wait it out. She taught me that when you fall, you have two choices: get yourself up or ask for help. She taught me to be articulate and positive in explaining what I need. She taught me that there is no excuse not to dance and laugh. She taught me that each day counts, so ask for the good macaroni ‘n cheese.

Donna passed away peacefully at home in October 2009, between her loving parents. When she left, they vowed to keep doing good things in her name and founded Donna’s Good Things. When I came to Egypt, I brought a little bit of Donna with me. Her courage, her humor, her energy and empathy. I signed on to volunteer at 57357 Children’s Cancer Hospital Egypt as a dance teaching artist, providing both dancing sessions for different groups of patients and dance therapy for the teen peer support group. All good things.

Childhood cancer is the same here in Cairo as it is in Chicago. It is the same beast. Although, lymphomas are more prevalent and rates of survival are generally much lower. Fundraising via social media is almost unheard of here. And there is mistrust of health care directors who people believe profited during the Mubarak regime. Religion, corruption, and politics are huge factors in both countries. But the child superheroes are the same. They are joyful and generous even under the most difficult of circumstances.

This past Thursday, I was honored to bring about an event that was pretty much my dream when I came here. To bring together the faculty and students of the Academy of the Arts’ High Institute of Ballet where I am teaching, and the world of 57357.

The primary school students of the ballet institute came to the hospital and performed three numbers: a lively folkloric routine, the Russian Trepak from The Nutcracker, and a pop jazz routine to Mambo No. 5. They performed three times total: once onstage in the auditorium for the out-patients, and then twice on different in-patient floors for the patients too sick to leave the ward. The staff at the hospital were kind enough to provide full support for the music and lighting. It was a real show. Rock concert quality.

High Institute of Ballet performing at 57357 (Photo by Mohamed Radwan)

After each performance, the staff gave out the Twinkies and treats they had brought for the kids, and I led the patients, parents and nurses in a participatory dancing session. This was similar to what I regularly do at the hospital, but this was the first time the faculty of the ballet institute had seen such work. I looked to my left and there were all they were by my side, on their feet, joining me, engaging with the patients. They were hooked. I think these faculty members will definitely continue this work and a strong partnership will develop. Inshallah.

At the end of the day, the faculty had to get the dance students back onto the bus, so I stayed on to lead the last dancing session on my own. There was a girl of about 12 years. She had a hair net, a slouched and weak posture, and was in a wheelchair pushed by her father. She sat on the far side of the audience on the in-patient lobby, clapping along to the healthy kids in their sparkly costumes dancing to Mambo No. 5. Then I started to dance with all the patients, many moving just one arm cause of the IVs. I walked over, grabbed the arms of her wheelchair, and pulled her onto the dancefloor. We span in circles, wheelchair and all, together with the other dancing patients. Unable to speak the same language except for the one in our bodies. Her father beaming from the side. Her face all smile and her arms outstretched to their full potential. That is what this is all about.

Dancing at 57357. (Photo by Mohamed Radwan)

Following the event, I received this message on Facebook from a friend working at the hospital, “57357 and its children are grateful to you : ) . You drew smiles and made a lot of people and children laugh. Can’t imagine that you will leave us one day 🙁 .. Love you.”

Don’t worry, my friend. With these kids, there will always be dancing.

 

* For more photos, please visit the Facebook album.

**This post is a follow-up to a previous post, Dance and Cancer.

***The views and information presented in my blog are my own and do not represent the U.S. Department of State or the Fulbright Scholar Program.

 

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.

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