Infantile Fibromatosis
Mary Evelyn Butler was born on June 16, 2007 and is fourteen months old now. She is a good-natured, happy baby. She has brought us so much joy. When she was eight months old we noticed a large growth forming under the skin on her back. Mary Evelyn endured a series of tests before the doctors finally diagnosed her as having Infantile Fibromatosis. It is a benign tumor that has infected the latissimus dorsi muscle on her back. It is growing and the doctors want to stop the progression and ultimately shrink it. The tumor can be life threatening if it is not stopped. Because the tumor is very involved in the muscle tissue, it would be impossible to remove it without removing the whole muscle. Therefore, Mary Evelyn will have to undergo chemotherapy. We will be taking her to Children's Hospital once a week for the next six months and then once every other week for six months after that for treatments. Monday, February 18, she had surgery to have a port placed for treatments and received her first treatment. It was not an easy day, to say the least! After leaving the hospital following the procedures, Mary Evelyn got sick. We ended up back at the hospital where her IV was restarted and the anti-nausea medicine was administered. The doctors plan to give her that medication prior to treatments from now on. At this point we aren't sure how the tumor will respond to the chemo. We are hoping the tumor will shrink and disappear (best case scenario). An MRI scheduled for May will tell us more about how things are going. Mary Evelyn's immune system will be down due to the chemo, so we'll need to keep her out of daycare. We greatly appreciate your concern and prayers for our family during this difficult journey. Since the MRI in May there was no change in the tumor and we discussed taking out the whole muscle. We sent the slides of the biopsy to Chicago and they think we can watch the tumor and it may not grow. As of now we are off the Chemo, the port will come out in October and her next MRI will be Oct. 27th. As long as the tumor doesn't grow we will leave it alone. If it grows at all at anytime we will immediately take out the entire muscle. We believe that God is in complete control of this situation and because of all the prayers the tumor is not growing. We will continue to pray for similar results with each MRI. Children's Hospital has taken very good care of Mary Evelyn and they have been very upfront and honest every step of the way. I believe the doctors and the staff are the BEST. They are compassionate and kind. They were always willing to go out of their way to help us. Kelly, the oncology phone nurse has been so helpful and nice. We could not have made it through all this without her. She has gone above and beyond for our little girl. Thank you, Kelly. We are so grateful to have a place that takes such good care of our children. God bless you Children's.
