Make A Child Smile

Angel's Story
written by mom Stephoney

Angel was born in South Williamson, Kentucky on March 5th, 2002. We were told she was a healthy baby girl. She was a very loving and happy baby.

In 2003, we noticed a lump on her side and that's when the doctor felt her side and we knew something was wrong. We were told to take her to Children's Urgent Care for an ultrasound because the doctor had felt what she called "a mass" on Angel's right side.

My husband Billy and I were so worried as all the different doctors piled into our one little exam room. The words they told us turned my life as I had known it, upside down. We were told that she did have a mass or tumor. They also told us that more than likely it was cancer. I dropped to the floor, trying to erase all that the doctors said from my memory.

I ran out of the exam room not knowing where I was going, or what to do next. We were told to take Angel to Children's Hospital in Columbus Ohio. We went home to get things together to make the trip. On our way home, I remember thinking about when she was born, my husband and I left the morning she was born as a couple, and came home as a family. Now we may do the opposite, leave as a family, come home as a couple. I could not comprehend losing her.

We made the ride to the hospital which seemed like it took hours, all the thoughts rushing in and out of our heads. To be honest, we thought it was a death sentence, you think of cancer, you think death.

Angel was admitted that night and had many tests and was diagnosed with a rare form of cancer called Clear Cell Sarcoma. Two days later (June 12, 2003) she was in surgery to remove the large tumor from her kidney, liver and diaphragm. The surgery was a complete failure; Angel had lost so much blood that she suffered multiple strokes. She was in the PICU for around 17 days, 14 of them she was on a ventilator unable to breath on her own. We were told to make her happy because the odds were not in our favor.

Every night I would drop to my knees in prayer! The surgeon told us that if they had not done the surgery, that they never would have noticed her bleeding internally.

She suffered many complications because of the strokes. She was paralyzed on her right side for months, and unable to swallow anything so we vein fed her for weeks.

Being the fighter she is, she began walking and talking again, she learned it as fast as we could teach it. I finally, after hours of prayers, got myself together the best I could and knew deep down if I had the faith, God had the cure. Angel went on to receive months of chemotherapy and radiation.

Finally in October 2003, she had the second surgery to remove the kidney, which was a complete success. She finished her chemotherapy in January 2004 and has been on remission ever since. She sees her oncologist on a regular basis to keep check on her.

Now Angel has issues with Epilepsy (because of the strokes), speech and attention. They are testing her for ADHD as she finds it hard to be still and pay attention.

After the strokes, we had noticed that re-teaching her to speak was very hard. So we were asked to take her to a neurologist to see if they could find anything.

The outcome was that Angel was experiencing seizures (hundreds maybe a day) keeping her from connecting sounds together. The doctor compared it to watching a TV and having someone constantly changing the channel and trying to keep up with what was on it.

After her diagnosis, we put her on medications which helped some with her speech. She can say things now, she just has a lot of problems communicating with people who don't know her. She can be hard to understand at times (stutters). She started having very bad seizures around 2006 where she goes into them and cannot come out on her own. She has been to the hospital twice in the last 2 months for actively seizing for way over the five minutes the doctors expected. She actively seized for 38 minutes the last time and then slept for a whole day. It took several hours for her to speak or know anyone. We now have emergency medications to give her at home, but we have to call 911 so they can monitor her breathing. It is very scary for her to wake up not knowing where she is.

We still go to the oncologist to monitor her heart because of the chemo, and get bone scans and ultrasounds. They also keep check on her one kidney and make sure it is doing its job, and not too stressed. The cancer she had is in remission, but not considered cured for 6 years after remission (January 2010). There is still a chance of recurrence, but we know she is cured in our hearts.

She started speech therapy. She likes it, but does get stressed when asked to repeat herself. She is behind developmentally, she can't sing her ABC's, draw shapes or write her name. Things that her doctor said she should be able to do. I feel she will learn these things, maybe a little later than others, but we will get there.