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Ross' Book:
Written just prior to Oct. 1, 1999 appearance at ACS Annual Meeting

The Making of I Had A Tumor, It Wasn't A Rumor
The Future of I Had A Tumor, It Wasn't A Rumor 

I had A Tumor, It Wasn’t A Rumor.

I had a tumor.  It wasn’t a rumor.
It grew in my belly and made me full of jelly.
The chemo made me ill,
but now I know how to swallow a pill.
Now I’m feeling great. In March I will be eight!"

Hello. My name is Ross Romenesko and I’m a cancer survivor. I wrote this poem when I was 7 years old. When I was 6, I was diagnosed with Burkitt’s Lymphoma. I just celebrated my 7^th year of remission. I’ve gone through stuff like chemotherapy, a seizure, a 106 degree temperature and two surgeries. Now I’m in 9^th grade, I’m getting straight A’s, playing on a competitive soccer team, playing the trombone, and loving life.

At first everyone thought that I only had a stomachache, but it kept getting worse. Finally the doctor redid a blood test, did a CAT scan and the next thing I knew I was in an ambulance being rushed to Madison. That night I had about 25 shots and they found out that I had hundreds of tumors all through my stomach and chest. It was bad. I was in ICU for 3 weeks, most of it I don’t remember.

I spent my 7^th birthday in the hospital. All of my family came down to Madison. I hadn’t even sat up or eaten anything for 3 weeks. It made me feel great to know how much they loved me. It helped me keep fighting.

I received many different kinds of chemotherapy. One of the side affects was that it damaged the nerves in my legs, which made me a lot slower. I even had to be in a wheelchair. My older brother, Ben, wheeled me around at the zoo in Madison. The chemo also made thousands of little cuts on my eyes. It made my hair fall out and my mouth got huge mouth sores. It kills many kinds of cells in your body, even the good ones, like white blood cells, red blood cells, antibodies and platelets so I had many blood transfusions. It also kills cancer cells. I had chemo every few weeks for 8 horrible months, and usually ended up in the hospital for at least another week. As horrible as it was, I loved my chemotherapy because I knew it would cure my cancer. It was part of having a positive attitude.

My friends didn’t care that I didn’t have hair. In fact one Halloween I dressed up as Michael Jordan because I had the perfect haircut!

Friends are an important part of surviving cancer. My friends and my parents’ friends helped us everyday. Some brought us food, others helped with daily chores. From hugs and prayers to words of encouragement, we couldn’t have made it through those long months without them.

It was hard to keep up in school, but I did it. There is a school in the hospital that has games, computers and great teachers like Jackie. After finishing a subject, she let me have 15 minutes of recess on the computer. My school in Appleton and the hospital school stayed in touch. The nurses came to my school and explained what cancer was. When the nurse asked my first grade class how they thought that I got cancer, one of my friends said "From smoking?" People have all kinds of misconceptions about cancer. I didn’t do anything wrong to get it.

The nurses also told my classmates about my Hickman. A Hickman is a special catheter that I had in my chest instead of an IV. I got all of my chemo, had blood tests and got all of my medicine through it. I had two different Hickmans. They took the first one out when I had a 106 degree temperature and no white blood cells for more than two weeks. They thought it might have been the source of the infection. That was pretty scary. I still have my second Hickman in a jar at home.

When I was in 2^nd grade, we had to choose a hero. Someone we would like to change places with for a day. Most of the other kids’ heroes were basketball stars like Shaq or quarterbacks like Brett Favre, but my hero is my oncologist, and good friend, Dr. Sondel. He always has time to talk to me, about things other than cancer. When I scored my first soccer goal after chemo, my mom called him just to tell him. He said it made his month!! He calls me his success story and that’s why he does what he does every day, with so much heart. That’s also why I want to be an oncologist some day.

My best friend from the hospital, who also had cancer is Michael. He had a brain tumor. We both had a good sense of humor, even in the toughest times. Sometimes when we didn’t feel good, we would watch movies together. Another time, Michael and I skipped school and played video games instead. I’m happy to say that Michael is in remission too.

Another friend of mine is Jason. He had Acute Lymphocytic Leukemia and had a bone marrow transplant. His room was right next to mine in the hospital. He taught me how to tease the nurses. He also showed me the ins and outs of hospital life. He just got married in October. I think of him as a big brother. Jason’s like a part of our family.

My friend Jolene had osteosarcoma. Her cancer came back many times and three years ago, after fighting with cancer for half of her life, she died at the age of 21. That makes me feel weird inside. These are just a few of the friends that I made in the hospital. There were many more. Some survived like me, but some didn’t.

In October of 1993, I had the chance to go to Florida with the American Dream Flight. The American Dream Flight is a special trip for children between the ages of 5 and 18 who are undergoing treatment for cancer or leukemia. We went to Universal Studios, Sea World and Disney World. I had the chance to meet kids from all over the Midwest who were cancer survivors, just like me. The greatest part of the trip was that because I was wearing my Dream Flight T-shirt, I got to go to the front of every line!! It was awesome.

In January of 1995, Make-A-Wish granted my wish to meet Shaquille O’Neal. They flew my family to Orlando to see the Magic play the Bucks. We went to a shoot around and the whole Magic teamed signed a hat for Ben and me. Then, we met with Shaq in the locker room. He signed a basketball and hat for each of us. Some people think I’m lucky because I got to meet Shaq and have autographs from Michael Jordan, Wayne Gretzky and Mike Holmgren. I just think I’m lucky because I’m alive.

In 1997, the American Cancer Society invited me to be the keynote speaker before the Sole Burner Walk/Run in Appleton, Wisconsin. It was scary to speak in front of 6,000 people but I was proud to tell my story and my happy ending as well as remind people of the importance of fund raising in the fight against cancer.

Because I was speaking, my parents and I decided to form the Ross Romenesko team, a family team in my honor. That year, 318 friends and relatives signed up for our team and we raised $7,772.00. The Ross Romenesko team has been the biggest Sole Burner team for the last 3 years. This year we had 302 participants and raised a record $13,239.00. Every year we have more and more cancer survivors on our team. A family team is a great way to support survivors and raise awareness about cancer.

After the Sole Burner, we have an open house in our back yard that we call the Celebration of Life. We spray painted the Ross Romenesko team logo in the middle of our yard. The party is lots of fun. We play basketball and soccer, eat subs and for the last two years, our friend’s band has played too. It’s our way of thanking everyone for their support and donations as well as reminding us to celebrate life everyday.

On Labor Day weekend of 1999, we went to the 2^nd Kids With Courage Reunion in Madison. Every five years the UW-Children’s Hospital unites childhood cancer survivors to share their stories, exchange ideas and information and emphasize that research can cure cancer. Cindy Crawford is a great supporter of this event because her brother, Jeff, died of leukemia when she was ten. When they asked me if I would like to be interviewed by Cindy on Good Morning America, it sounded like a great idea to me! …and my dad! During the interview she asked me what I had learned from having cancer and I said, "You have to live every minute of your life because it can be gone in an instant."

I made a square for the Pediatric Cancer Quilt that showed me and the kind of cancer that I had. Each square was made either in memory or honor of a child who had cancer. Each state then sewed together their squares and brought their panels to Washington D.C. for The March. Wisconsin had 6 panels so you can imagine how huge the quilt was with all 50 states. It made me sad to think that so many kids got cancer, like me.

The March took place last September at the nation’s capitol. The theme for The March was NO MORE CANCER. It means that any cancer is too much cancer. That’s why I’ve been so involved in fund raising. We need to let people know that if we put more time, energy and money into research we can cure cancer.

My family and I flew to Washington D.C. for the day to represent the American Cancer Society at the March. Some of the speakers we heard were Norman Schwartzkopf, Bob Dole, Al Gore, Jesse Jackson, Scott Hamilton and Cindy Crawford. I couldn’t believe it when Norman Schwartzkopf said that for every $10 the government spends, $1.50 goes to the Department of Defense but only 1cent goes to all medical research.

Cancer has changed my life. It’s taught me to respect my life and the lives of others. It’s taught me the importance of family and friends. It’s taught me that if you put your mind to almost anything it can happen. Whether it’s beating cancer, fund raising for cancer, or being in the ninth grade, a positive attitude makes a difference. Thank you.

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