The Beginning

Because of the love and concern of so many friends and family, I have started this blog as a way to keep everybody up to date on Eliana's journey with NF-1 and Optic Nerve Glioma as well as the everyday life of the Sherwoods. I first and foremost want to express my gratitude to each and every one of you. I have been humbled beyond words in the past month. Words will never begin to express the depth of my appreciation. Love You Back More.

Eliana came home from Guatemala at almost 10 months old in August 2008. She was diagnosed with Neurofibromatosis (NF-1). NF-1 is a genetic disorder that is just as common as Cystic Fybrosis. But many, including me, have never heard of it. Many children live very normal and healthy lives with NF-1 and others have some difficulties. Up until December 18, 2009, Eliana has been doing great. As a matter of fact, as of today, she is doing great. You would never know that my baby has a brain tumor. About ten percent of NF-1 patients develop Optic Nerve Glioma. One percent of that ten percent have to receive treatment. The reason for that is either the tumor is growing and/or the eyesight is changing. Eliana's tumors (bilateral optic nerve gliomas) are not growing, ***Thank the good Lord***, but the eye doctors have seen a slight change in her eyesight. The oncologist at Cincinnati Children's Hospital agree that it is significant enough to begin treatment. Treatment is basically one year of chemotherapy once a week. Other tests will continue throughout her treatment plan.

If you would like some more information about NF-1, there is a wonderful organization called Children's Tumor Foundation. I invite you to click on the link to read more about NF-1. I will continue to share more with you as we learn more about Eliana's treatment.

Some of you may wonder why we chose Cincinnati over Louisville for our daughter's care. Cincinnati Children's Hospital is a leading hospital in the treatment of NF-1 and the oncologist sees a lot of Optic Nerve Glioma patients because of the NF-1 clinic there. I have all the faith in the world in this hospital, doctors and nurses. They have done nothing less than roll out the red carpet for Eliana and our family. Thank you to my friend, Holly, for encouraging us to seek the medical professionals that we are entrusting to care for Eliana.

Out of the last 11 days, we have spent 8 in the hospital. The doctors have said that we have had a rough beginning and they believe things will get easier. Eliana received her port and her first round of chemo and she did fantastic. The chemo, itself, was pretty much uneventful. A problem occurred when Eliana began a fever and an upper respiratory infection that necessitated some inpatient days in the hospital for tests, antibiotics and monitoring. With patients receiving chemotherapy and a port, children must be monitored very closely for underlying problems and a fever over 100.4 will automatically mean Eliana needs to be seen at the hospital. The wonderful news is Eliana is feeling much better and she is so happy to be at home playing with her toys and her big brother, Roberto. We are hopeful, depending on her blood work (that we have drawn at home with in home health care nurse each Tuesday) that she will be able to get her second round of chemo this week on our Thursday clinic day. We had to skip last week because of her virus.

Eliana is extremely strong and bounces back very quickly despite all the pricks and ouchies. I can honestly say that Mommy does not bounce back quite as quickly. This has been a very emotional journey for me that is just beginning but my faith is very strong and it is growing every day.

Please continue to send prayers up so that blessings come down on Eliana.

We Prayed For This Child And The Lord Has Granted Us What We Asked Of Him ~ Samuel 1:27

Love You Back More,

Mary Beth

P.S. Many thanks to Sarah for motivating, teaching and encouraging me to create this blog. I love you, Sarah.