Mary Evelyn
Mary Evelyn
Stage IV Neuroblastoma, off treatment!
Fayetteville
http://caringbridge.org/visit/maryevelynking
Our Story
In the spring of 2005, we started noticing that our two year old daughter, Mary Evelyn, was sick much of the time. She had repeated bladder infections that didn't respond to the anti-biotic. She was still playful and happy, but started to complain of pain in her legs. She would get stuck in a squatting position and would call for her mommy to help her get up. Then, she started limping. She would whimper in her sleep because her "leggies hurt". She had a low fever off and on again. She had many trips to the doctor and each time, she was diagnosed with just a bladder infection. She seemed to improve briefly with different antibiotics, but soon she could hardly walk. When we got her up one morning, she wailed, "Take care of me, mommy." This time, she was sent to the emergency room at Children's Healthcare of Atlanta, Egelston, where she was diagnosed that evening with Stage IV neuroblastoma. The cancer had spread to bones, bone marrow, lymph nodes and there was a large mass in her abdomen which had tendrils growing from it up around her spine and aorta. She had cancer from the top of her head all the way down her body in sporadic places. She had a 30% chance of survival. Mary Evelyn started her first round of chemo three days after the diagnosis. She had a total of six rounds of chemo which were enough to remove the cancer from her stem cells and shrink the tumor so that the surgical team was able to remove it. It had shrunk to the size of a pear. They removed about 95% of it in a nine hour operation. Then, she had two stem cell transplants. Each transplant started with a high dose of chemo for several days. Then she was injected with her own stem cells and her little body slowly built itself back up. During this time she had lots of jobs such as: taking laps everyday, mouth care, respiratory therapy, lotion to protect her damaged skin, wearing a mask and during the first one she also had oatmeal baths every six hours. The BMTwas a gueling, lonely process, but so far it gives the best chance of survival. One day, I found her looking in a mirror and singing to herself. She had no hair, no eyebrows or lashes, peeling, discolored skin and was very thin yet she was singing about what a pretty princess she is. She has a beautiful attitude. When she had recovered enough from the transplants, she had seventeen days of radiation and then six months of taking acutane. She is now off treatment and we are hopefull that she will lead a full, long life. It will be another three years of clear scans before we can begin to consider her as "out of the woods", so this is not an easy battle by any means, nor is it over. She is a happy, loving little girl who believes that God is healing her and always tells me she is getting better. Thoughout all this time, we tried to keep her life as normal as possible. Whenever possible, she went to preschool, had playdates, attended church, went shopping and loved to be with family and friends. For now, she is feelling much better and has a pretty normal life. She is in kindergarten. She loves princesses, especially Belle from Beauty and the Beast. She loves gymnastics and is looking forward to soccer this spring.She is thankful for the kind things people do for her.She is full of life and we are so thankful for the prayers and the medical treatments that are saving her life. She has also become a little advocate for cancer research, in her own way. She has heard her parents speak at various fundraisers and always has something of her own to say. She even donated her piggy bank to a local neuroblastoma researcher!Funding experimental treatments is so important, because not only is the cure rate lower for neuroblastoma than for many other cancers, but the treatments are painful and have many damaging side-effects. Sadly, this is a cancer that is agressive and many children relapse. The treatment also puts them at risk for other cancers in the future. Our donations will help researchers find better treatments that won't have the devastating side effects and low cure rates of the current treatments.
Thank you
Thank you for blesssing these children by giving up your lunch and donating the money to fund this important research! Someday there will be a cure for children like Mary Evelyn and our donations will help that day to come sooner and save the lives of these brave children.