For and about Cancer Survivors in Second Life, and for anyone who has been touched by cancer

Tuesday, September 30, 2008

Never give in, never, Never, NEVER

Suzetta Moonites kicked off the new "Fighting Spirit" series of meetings organized by SL's Cancer Survivors Group in Hope Haven on Sunday September 28 by describing her personal experience of childhood leukemia. How she fought it then. And about how she is still fighting, by advocating for improved follow-up of children who were treated with radiation.

Suzetta speaking to a full house in Hope Haven on the American Cancer Society island. She is standing next to a statue aptly named "The Survivor"

Her story began when she was 8 years old. Her teacher (Mrs. T) noticed that she was unable to make it upstairs without being severely out of breath. She told Suzette's parents what she had noticed. The day after that, she went to see her pediatrician. During his examination Dr. P noticed that that her lymph nodes were swollen in the groin, under the arms and behind the ears. She was in the hospital in New York the next day - after a few more routine tests the doctors there confirmed a diagnosis of childhood leukemia. Her doctor explained that there are three types of leukemia - the very bad, the middle kind that goes away but sometimes comes back - and the good kind. She had the 'good' kind.

She had chemo for four years and was also placed in a nationwide childhood cancer study. They formed two groups based on the trial that included those who would have the radiation and those that would not. Suzette was placed in the group that was given the radiation.

Suzette believes she was spared the worst side effects of the chemo because although her doctors and family explained what was happening, they didn't tell her she could get sick. So, she didn't!

"I remember mom telling me that I had too much soda and thats why my tummy hurt. I can still see her rubbing my stomach saying let's go to our special beach place and dance. I never knew it was from the chemo ... that year I learned that Love and Laughter were the best medicine." Her doctor asked her because of her "spirit" to talk with other children in the hospital. So they could see how she looked and "my theory that I had cancer but cancer doesn't have me". After four years she was declared cancer free!

But that wasn't the end. When she was 25 her doctors found a meningioma (brain tumor) which was found to be wrapped around her brain stem. That was when her specialist Dr S told her that this was found to happen to 1% of childhood leukemia patients. It was a traumatic discovery. However, she was more shocked by the fact that her doctor knew and didn't warn her what to look for. She changed doctors and had surgery three weeks later.

"Was I mad - yes but not at the cancer, and not at the tumor. I was angry that I wasn't told what could happen. I was angry that when I complained for the past years of headaches I wasn't warned."

The surgery went pretty well. But later on she had a recurrence.

"I find as an adult you want more information about what's happening to you. I can tell you that the first surgery went really well because I didn't have time to find out. The second one although I wore a smile, I was scared because I went to the library ... As an adult sometimes knowledge can scare you to death. However, my family and friends told me to fight and not give up because I never have before."

The surgery and radiation went well although the tumor couldn't be removed completely. She didn't let anything keep her down, even knowing that she was going to have to live with this in her head. She now lives a "watch and see kinda game".

She was still angry about not being warned. So she decided to get the word out, writing to the newspapers to let people know what could happen, the signs to look for. She wanted to share her theory for recovery with others and raise awareness and funds to help as well. She contacted the American Cancer Society and they told her about an event for the community called Relay for Life. She started a small group of 11 people and they travelled to participate and that event raised $25,000. This year will be her 12th year with Relay for Life. Her hometown is the host of the event, last year they raised over $120,000 and saw 2 other Relay events split off from us that raised well over $100,000 each.

Suzetta says she was especially inspired by a Relay video that she first saw where a teenage girl said that it isn't just about recovery or the battle with cancer ... "it's also for your spirit to know that no matter what, we should "Never Give In..... never, Never, NEVER!"