Sophia R. - Quilt Finished in 2009
Born: October 17, 2000
Illness: Adrenocortical Carcinoma, Melanoma August 2008 and Li Fraumeni Syndrome

Sophia R.'s Story
Written by Sophia's mom Tara in October 2008

My daughter was born on October 17, 2000 weighing 10 lb. 3 oz. by c-section.  Sophia was a good baby never had much troble getting her to sleep or eat.  She was a really happy baby.  I noticed around 8 months a hair in her pupic area and wondered what was going on but I was not really worried because it fell out by the next day.

They keep coming back and going away so I decided to take her to the doctor and they sent us to Riley's children's hospital in Indianapolis, Indiana and before we left that day they told me and my husband that she had a tumor on her adrenal gland and it was the size of a grapfruit.  The next week she had her first surgery to remove it, but during the surgery they broke open the tumor and spilled tumor cells back into her. Four week later they found spots in a lot of different places.  Her kidneys, liver, lymph nodes. Then she had her second surgery to remove the spots.

We decided to start chemo so 3 weeks after her surgery we went back to start her chemo and they did scan's and found a tumor had already came back the size of a orange.  She was on chemo for 6 months and the tumor srunk down to the size of a quarter and they did her 3rd surgery to remove it. Then she did 2 more months of chemo. And shortly after that she had another surgery to remove her port and she was doing really good.

We went back for check ups and everything was looking good for 4 years. Then beginning of the year she was telling me she had a spot on her head that was bothering her.  I looked at it and it looked like a pimple and I thought it would go away but then she wouldn't quit messing with it so I thought that's why it wasn't going away.  I asked her doctor what she thought and she didn't think it was anything to worry about but maybe I could get her in to the skin doctor.  I called to make appointment and it took 5 months before I could get her in. So finally the day came for her to go and they did a biopsy on it and went home they called 2 weeks later and said they couldn't find out what it was and they wanted her to get it removed.

After I talked to my husband we had more questions so I called the doctor back over and over again and he never would call me back and I'm not sure why today.  So I called up St. Jude and asked them to see Sophia because with her first cancer we took her to them because her cancer was so rare and they had a doctor who was doing research on her cancer and I wanted her to be apart of it.  Anyway I talked to them again and they said no problem and gave her appointment and we went down and they did some scans and took her to surgery and removed the spot on the back of her head and took out the main lymph node in her neck.

We were there for a week and they said to go home and if needed, after they got the test back, they would fly us back down. The next Friday I got the call and it was Melanoma and we needed to go back.  On Sunday we flew back and did more scans and she had another surgery to remove all the lymph nodes in the right side of her neck and put a port in.  We had to stay for 5 weeks and she started her chemo and went to school.

The first 2 days of chemo was pretty bad with cold chills and high fevers, but it got better.  With her cancer they asked if we wanted to get her tested for a gene that makes her more likly to get cancer so we did and it came back she has Li-Fraumeni syndome.  It means she is at higher risk for sarcomas, breast cancer, brain tumors, leukemia and adrenocortical carinoma.  We are going to talk to the doctor and going to start her on a plan to keep an eye on all of these things.  We are home now and we are doing her chemo with shots for a total of 48 weeks.