Tag: Cancer

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.”

 

Chemo on Valentines

She drives her car. I sit beside her. She walks into the building and immediately sits down on the bench in the entranceway. Out of breath. Woozy. She leads the way to the elevator and pushes the button for the 4th floor. A man with a bald head like hers and a cheeky smile wishes the two of us a Happy Valentine’s Day. I think she sees him here often. She leads the way to the reception desk. She leads the way the window-filled treatment room. She goes straight to the scale to be weighed. She engages in some banter with the nurses and a newbie here from the local hospital, here to practice accessing ports, because they don’t get enough of that in the hospital. The process of accessing her port is bloodier than I had expected. Her humor and calm are more than I had expected. I sit in what seems to be a side-car seat attached to her clinical recliner. And the two of us stare at this…

Onc./Heme Associates of Saginaw Valley

They run blood tests and a sheet comes back with numbers I don’t understand. The nurses talk to her about her hemoglobin. Some sort of problem. They inject something to ward off nausea. There are three little bags of pre-meds. Takes over an hour. Followed by two big bags of chemo, Taxol. Her last treatment in this round. We will be here for three or four hours. She doesn’t want the TV, or a snack, or a magazine or word puzzle. She doesn’t want the foot rest because she wants to swing her legs, dance around.

Other adults come and go, getting the shots they get during their off-weeks from treatment. She is the only one here to stay for chemo.

While we wait, she writes the nurses a check. Co-pays are due at the time of treatment.

“Usually the chairs are full. It is rather lonely today.” she says.

Even when cancer patients have friends and family around them during treatment, it can be a lonely place. I see it in their eyes. From Cairo to Michigan. There is a strength and sense of company that only they can find.

That only Hussein can find.

Picture courtesy of Hussein

Hussein at teen peer group at 57357 Children’s Cancer Hospital Egypt.

 

That only my mom can find.

Chemo on Valentines

And today is Valentine’s Day.

Happy Valentine’s Day to anyone around the world, of any age, keeping themselves company on this journey to rid themselves of cancer.

Celebrate love.

The Health and Hope Oasis

25 Egyptian teenagers with different cancers at different stages, 35 siblings, volunteers, nurses, oncologists, social workers, and one dance educator from Chicago spend 3 days in a remote complex on a fruit farm in Wadi Natrun, about 2 hours northwest of Cairo. This is a place where you can see the stars at night. 4 people per room. Each room making a new camp family. No cell phones allowed.

We board a quiet bus on a Thursday afternoon in Cairo and drive out of town. As we pass the great Pyramids of Giza, no one on the bus says a word about them. These great wonders are old news for the children who live here.

Pyramids of Giza. A view from the bus. On the road to hope and health.

We arrive at the Health and Hope Oasis to applause and a brilliant traditional meal (sort of a sauceless lasagne) followed by rice pudding.

This trip is the first of its kind for the Children’s Cancer Hospital Egypt 57357. The hospital is completely free for the patients, all of them, and so is this experience at the Oasis. The staff hope to hold camps as often as possible throughout the years, but there are too many cancer patients to reach. They’re not sure what will be possible without full-time camp program staff. The Oasis facility and farm, from what I understand, were built with help from the Presbyterian church and is run by an organization called Friends of Children With Cancer.

The Health and Hope Oasis, Egypt

Night one, as we are all sitting around waiting for the campfire to come to action, I lead the group in a lively, goofy kids’ game I learned from Bosnia. Later that evening I will have a long discussion with two of the patients about Bosnia, of which they have only heard of vaguely and of which they have many questions.

Sticks are found around the grounds and then Patricia, the head of the hospital foundation, approaches the campfire to roast her marshmallow. There is a hush. Then one of the patients asks me why Pat is doing that. I explain the concept of S’mores as the staff bring out biscuit cookies and Cadbury chocolate bars. The next couple hours are pure magic as one-by-one they each delight in their first S’more.

The rec room building is opened up around 10:00 pm. Along with air hockey, ping pong, board games and a sound system, it has a full size trampoline with safety net. Inside the building, mind you. Awesome. I was one of those gymnast kids who grew up with a trampoline in my backyard. So I jump right in and start teaching the teens some of the jumps and games from my childhood. After just a few minutes, I was politely instructed that I shouldn’t be bouncing on the trampoline with boys. Almost everything is allowed here at camp except for littering, cell phones, and co-ed trampolining.

Later, I go up to a young man who’s always sitting alone and he tells me he “loses all his happiness” when he’s on his chemo treatments. Another volunteer joins us to help with some of the translation and I show them a pic of my bald head from the St. Baldrick’s event. My new friend understands what I did, and why I did it, he pauses with a tear in his eye, says it was one of the most beautiful things he’s seen. Then he gives me a friendship bracelet off his own wrist. And I cry a little.

My New Friend and I

Camp activities include a personal development session with Quest, journaling (during which I share stories about Donna and Shea), art therapy, football, Friday prayers, jewelry making and social times at the canteen where they have fresh guava juice with milk and little cakes. I lead stretches every morning, creative dance sessions every afternoon, as well as guided breathing and movement exploration before bed for those still up at 2:00 am, which is most the campers. I learn new games from the staff, and  by the second day, I find them facilitating the games I shared. Love when exchanges work.

There is a session early on the second day where we are each given a blank piece of paper to tape to our back. We go around the room writing descriptors on each other’s papers. Most write in Arabic, but not on my sheet. At the end of the activity, we remove the paper and see what people have written. Mine says…

  • Open hearted for all
  • Good spirit & lovely presence
  • …ا ِحنا َ  ِحنا َ (Some beautiful, generous statement I am having trouble reading and remembering the translation of.)
  • Funny
  • Cute & Active
  • Active all the time
  • So pure
  • Energetic
  • I hope you like us as well as we like you.

These statements call for me to read them twice. I am incredibly humbled. Open hearted for all. These new Egyptian friends understood me in less than 24 hours. I hope they like me as well as I like them.

I spend some of the down time learning Arabic from the girls, practicing my numbers, making sure meds are in the right hands and watching how the docs check blood pressure. Other free time is spent coaching one of the staff’s son on cartwheels. He was crashing to the ground and frustrated. We didn’t speak each other’s language, but eventually he was landing all his cartwheels on his feet. Proudly.

Cartwheeling

There are two spontaneous Arabic dance parties on the second day, where I am the student. Belly dance is approved. But I guess there are some arm movements the girls taught me which the staff do not approve of. Still trying to figure that out.

 

And by Day Three, the campers show that their spirit is much stronger than the cancer inside them.

(If you look closely, you can see I’m wearing his friendship bracelet.)

Day Three

 

Dance and Cancer الرقص والسرطان

As alumni fellows of the UN Alliance of Civilizations International Fellowship program, me and my colleagues have recently made an official declaration that was delivered to the Heads of States and Governments during the 67th General Assembly of the United Nations.

I’m proud to have signed this declaration advocating dialogue of the #TrueMuslimWesternMajority, but understand my ongoing contribution to this dialogue will be less about religion and free speech, and more with dance and cancer.

I went to observe classes at the High Institute of Ballet in Cairo, where I will be co-teaching with grades 7, 8, 9 (ages 14-17) modern dance classes in addition to workshops on community arts with the undergraduates.

The faculty are contemporary dancers with well-established performing credits. Much more so than I. Their teaching methods are also very different than mine. One is laid back, sits back, calls out the warm ups and lets the students go home early. Yet, I understand this was the first class back after two months summer/Ramadan vacation. Another teacher is a man I am going to have to work harder to understand. He smokes during class in the hall, he is extremely hands-on forcing students into stretches and slapping kids alongside the head, and he indulges an elitist approach. But he is an exquisite dancer and cares a lot about his students. So I’ll start with those assets.

All the students are Egyptian, but a few are from Russia here because of the Institute’s deep history and continued connection to the Bolshoi. Most faculty slip between Arabic, Russian, French and English during their instruction. The head ballet master for the boys’ classes is extremely polished and I admire his teaching style. I asked how often he changed-up his barre exercises. He replied, “Oh, it’s not about time. It’s about progress. When I see the results in the students’ technique, either positive or negative, then I change as necessary.”

Yesterday, the two male modern dance teachers sort of challenged me to teach a few minutes. I had the students stand in a circle (rather than the standard lines) so that their would be more equality between the teachers’ pets and the slackers, between boys and girls; so that there would be more self-critique and peer support rather than dictatorial direction; and so that we could see each other’s faces when laughter broke out. Accidentally, my portion of the class went over 8 minutes. It was unclear if any of the students or faculty enjoyed it. Few emotional cues. One female student later requested to add me on Facebook, so there’s that.

In any case, these are dance trainees working every weekday from age 8-20 at this Academy in order to make it into the Cairo Opera Ballet or international companies. And yes, the school has grades with nearly twice as many boys as girls.

Grades 7 and 8 (Ages 14-16) at the High Institute of Ballet, Cairo

 

After class, I walked around and picked up the few scraps of paper, left-behind ballet slippers, and a used tea cup. I took the tea cup up to the main office and asked where I should put it. The Dean got a bit upset and asked why I was cleaning. “That’s not your job!” He then demanded to know which studio was dirty so that he could have a word with the janitorial staff. I felt awful and explained that I believe everyone should lend a hand, that I enjoy cleaning, that the studio wasn’t very dirty at all, and that it was all ok.

There is definitely a thing here in Egypt about everyone having a job. Yes there is an unbelievable high rate of employment, but almost everyone has “a job to do.” As I was walking home, looking around, it came to me that protest & graffiti tagging is some people’s role here, as is the policing & the painting it over.

Graffiti on Kasr Al Aini Street

Back to the dancing in Cairo.

Today was a very different experience… the first dancing session at Children’s Cancer Hospital 57357 and it went beautifully. As expected, there was a bit of a nervous start but then many children jumped in and started dancing. After we convinced them to turn off the TVs and Play Stations, we found lots of joy.

We boogied, we balanced, we stretched, we sat still, we leapt in the outpatient playroom with different groups of patients awaiting their treatment. The staff offered me the much larger lounge with extra space but that is a peaceful area with sofa chairs where kids are getting their chemo; would feel weird to dance and play in front of them.

Many of the parents took pictures the whole time from the playroom doorway and watched with smiles on their faces. After the session, a woman with full niqab and abaya came up to me and asked my name and where I was from. She held her 1-year old daughter in her ams. Too young to dance with us, the baby girl watched transfixed. She had a lovely, layered pink dress, bald head, gold earrings, cancerous tumor somewhere near her brain, and the biggest smile I’ve come across in quite awhile. Her mother thanked me much more than I deserved. There were plenty of thanks to go around.

The Communications team at the hospital plan to do a feature on the dancing sessions, so I will be sure to share that with you. I’m also excited that some of the older students and faculty at the Ballet Institute are interested in coming to the dance sessions at the hospital.

Beyond just the joy of the patients, what I love about being here is that these parents at 57357 get it. Dance is so important for kids to get to know their bodies, to relate to other children, and to explore the freedom the revolution gave them, no matter what cancerous beast may be inside.

In Egypt, everyone has a job to do. I think this is mine. Well, ours. Me and the kids. Our job is to dance.

Patients/Siblings/Dancers at Children’s Cancer Hospital Egypt 57357

***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.

An Orientation

Orientation 1: Welcome to Cairo

All day, I was attending the official Fulbright In-Country Orientation. The Fulbright program between Egypt and the United States was launched in 1949; it is the largest and oldest program in the Arab World.

Marc J, Sievers, Deputy Chief of Mission, U.S. Embassy Cairo told us that this year here has been the most difficult in his diplomatic career. He said that last week’s events felt manageable but also called on us to “clear up this fog of fear and hostility that ways us down on both sides.”

A Foreign Service Health Practitioner, gave us the numbers for the ambulances and hospitals then reminded to us to wash our hands for 45 seconds every time, paying special attention to our thumbs and finger tips. Research shows that the thumbs and finger tips are the most neglected. He also suggested that when we get Mummy Tummy aka The Pharaoh’s Revenge, to buy some Rehydrant packets from the pharmacy.

A Special Agent from the U.S. Department of State Bureau of Diplomatic Security recommended the buddy system, reminded us how volatile large crowds can be, and told us to follow our own level of comfort with this society.

We were told of opportunities to speak at an embassy event or with the Consulate in Alexandria, join the Egyptian Artists Circle of the Fulbright Alumni, attend cultural events. Most exciting, we were invited to a reception with Ambassador Patterson at the residence inside the U.S. Embassy. Date to be determined.

Then a former Fulbrighter told us about HarassMap and reminded us of the joys of living here.

We watched a video which has enough inspiration to overcome its cheese, Sout Al Horeya.

And the day concluded with a delicious traditional dinner at Al Azhar Park, one of the world’s top public spaces, built on a former garbage dump about 8 years ago as a charitable act of the Aga Khan.

AL Azhar Park

 

Orientation 2: Welcome to Chemo 

Last night, I got the news that someone very close to me has breast cancer. In both breasts. I cannot tell you who she is because she is not ready to tell the world just yet. But as she begins the 16 weeks of chemotherapy then double mastectomy then radiation, I thought I should spend some hours online getting orientated with the disease.

Every and every day  in America, an estimated 628 women and men are told they a cancerous mass in their breast. Two of my aunts, and many of my friends’ mothers have faced this certain beast. But I needed to more information. I’m going to be monitoring a cancer battle via Skype from Cairo.

I am also limiting my own level of worry as well as hers. The research for this type of cancer is well funded. The doctors are ready. So is she. The only concerns are that the chemo may effect any heart condition and, even though we know the cancer has not metastasized to the colon or lymph nodes, the word is still out about other areas.

An Orientation to Chemotherapy: The side effects of chemotherapy depend mainly on the drugs a woman receives. As with other types of treatment, side effects vary from person to person. In general, anticancer drugs affect rapidly dividing cells. These include blood cells, which fight infection, cause the blood to clot, and carry oxygen to all parts of the body. When blood cells are affected by anticancer drugs, patients are more likely to get infections and bruise or bleed easily, and may have less energy during treatment and for some time afterward. Cells in hair follicles and cells that line the digestive tract also divide rapidly. As a result of chemotherapy, patients may lose their hair and may have other side effects, such as loss of appetite, vomiting, diarrhea, or mouth sores. [National Cancer Institute]

Please send her some bouncy good positive hopeful prayerful vibes her way.

 

Orientation 3: Welcome to Miss D

Today on Huffington Post, Donna’s mother describes the part of the story where she walked into my dance classroom and into my life. If you haven’t been orientated to Donna’s story, I encourage to do so now. Even if you have read about her in past years, I encourage you to re-read, to get closer to her. An amazing gal. How lucky I was that her parents trusted me with 45 minutes of their daughter’s time every week. How lucky I was that she and I got each other. How lucky I was to have her as both a student and teacher. Sheesh. It is still amazing. Always.

September is Childhood Cancer Awareness Month. Please be aware. And please check out my post on this subject.

Donna Quirke Hornik and I at Performing Arts Limited studio in Chicago, IL. 2009.

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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