Make A Child Smile

RyLee's Story
written by mom Rebecca

RyLee’s story begins in a miracle fashion. The doctors said we would never have kids, but again the Lord changed their minds. RyLee was born on October 23, 2001, 9 pounds 2 ounces a very healthy child.

RyLee began walking when she was just 9 months old and started talking very early too, actually she did everything ahead of schedule. She is a very loving child. RyLee also has a sister named Zoyee. God was just showing off. I think God was just letting us know that man does not know everything.

RyLee was normal in all things... loud, hyper and independent. She loved to do little girl things and my, how prissy she is. She absolutely loves to go to Libby Lu's and get a makeover better than anything. She also gives everyone that is brave enough, a makeover also.

The only times she went to the doctor was for an ear infection because she did have a few of those, or for a check up. RyLee was hardly ever sick. In August 2006, we had a well check and everything was great, 20/20 vision, a healthy child. In October she started having headaches and couldn't see as well as before. We went to the doctor and he thought it might be a tumor, but didn't really think so, so it might just be her vision causing the headaches because her vision was now 20/50.

So we went to the eye doctor and he could see no tumor, but her vision had gotten worse. We also had a sinus infection and the doctor put us on antibiotics for 14 days. After that, we still had an infection so maybe it was her allergies. We went to an allergist and there were no allergies. So our Pediatrician ordered a CT scan on November 1st, 2006 and a spot was found. RyLee had an MRI on November 3rd and yes, there was definitely a tumor. She was then placed in the care of Dr. Gratias at TC Thompson Children’s Hospital.

November 6th, 2006 was a very scary day when we walked into the office and here are all these sick kids and RyLee did not look like them. She then started having more tests. A spinal tap was done to try to find out what kind of tumor it was but nothing showed up. So she had to have brain surgery on November 21st, 2006. We chose to go to Vanderbilt for this. This was by far the scariest time of our lives, but God had already went before us by sending us to Vanderbilt. We had a surgeon that was one of the Top 3 doctors in the U.S. He did a wonderful job.

After surgery, was very rough. RyLee did not look like our child, she did not act like our child. But we watched God restore RyLee day by day. We got the call that what they found was Langerhans Cell Histiocytosis and that it was malignant. So now we knew what we were dealing with.

Langerhans Cell Histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell. These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH patients, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.

So we finally had a starting point to start treating, but first we had to see if it was anywhere else in her body. They believed it would be in other places. So we had a lot more tests to go through. RyLee had 4 MRIs, two spinal taps, bone scans over all of her body, x-rays of every bone, bone marrow biopsy, bone aspiration, and a CT scan of her head and all of her body. But the rest of her body was clear... again, God is worthy of all the praise!!!

RyLee started chemo on December 26th, 2006 and she has done well with everything. She has now finished Phase 1 of chemo which is 6 weeks and have started Phase 2 of chemo. Praise God, she has not been sick once!! RyLee had another MRI and it showed that the tumor had shrunk by 50% so now she takes chemo once every 3 weeks with steroids for 5 days. It looks like her therapy will end the first week of July/07, as long as the tumor is gone. God is awesome!

RyLee has started softball season and she loves it. Between softball and NASCAR, she is staying very busy. She says she is also ready to go and watch the Atlanta Braves and the Tennessee Lady Volunteers. She is interested in so many things. We are also getting ready to register for Kindergarten.

RyLee also got to make a wish with the Make-A-Wish Foundation and she wants to go to Disney World and have tea with Cinderella. She said that she wants the tea to be warm, so we have been practicing with her and the whole family. RyLee is a very strong and blessed little girl. Thank You God!