Claudia's Story

For those of you that don't know Claudia's Story, here it is...from the beginning.

On September 3, 2004 our lives changed forever. Our 10 month old daughter, Claudia was diagnosed with a brain tumor. Through the advice of many specialists across the country, a team of pediatric surgeons performed a craniotomy and removed the tumor on the day she turned 11 months old. This procedure involved cutting her head from ear to ear and removing a piece of skull from her forehead to get to the tumor. This very intricate surgery, that was scheduled to last four hours lasted nine and didn't go as we had hoped. It revealed that the tumor was much more invasive than originally thought. The tumor had invaded the entire optic nerve, sinus area and even the carotid artery. In removing this artery to her brain, she lost over half of her blood and almost died on the operating table that day. But God decided He wasn't finished with her little life yet. The following month of recovery in the PICU also presented numerous challenges and setbacks including a full day of unexplainable seizures, heart and breathing problems, continued blood loss that required additional transfusions, etc. Yet, with each heart breaking obstacle that satan threw in our paths, God always seemed to fire back with a miracle! Because of the removed artery, doctors told us she would almost positively have a stroke - resulting in the paralysis of half of her body...she never had a single stroke! Doctors also told us she would never open her eye (which is blind) without future surgeries...today it is nearly 2/3's open!
Unfortunately, the story does not end here. We found out in April '05 (follow-up MRI) that the tumor had grown back. Unfortunately, it is growing back in the center of her brain in an area that is inoperable. We were devastated. After sending a piece of the tumor to Johns Hopkins for further evaluation and a month of many doctors/specialists across the country discussing the best course of treatment, on June 2nd, Claudia had a port-a-cath surgically inserted into her chest and began an aggressive chemotherapy treatment plan. Normally, radiation is used on this type of tumor (desmoplastic infantile astrocytoma), but because she is so young, the effects of radiation would be too harsh on her immature and still growing body, so chemo is being used to try and stop the growth of the tumor until she is older and her body is more developed to take this strenuous treatment. The chemo will last 1 ½ years and entails us driving to Indianapolis (St. Vincent Hospital – a 5 hr. round trip drive) every Thursday. Depsite all the horrible side effects of chemo, Claudia is actually taking the chemo very well...much better than doctors had expected.
However, again, an MRI showed in February '06 that the tumor may, in fact, be growing again. This would mean the chemotherapy is not working and leave us with no other option than radiation...the worst and last option. Radiation could have devastating long term, side effects on her brain, skull and pituitary gland. An MRI on March 21st will show whether it is truly growing. Until then, we undergo another round of chemo and are intensely praying this is not the case.

(AVAILABLE FORYOU:We put together a CD - after the surgery, before finding out the tumor had grown back - explaining many of the emotions we felt and specifically telling of how God sustained us through that painful leg of the journey. ALSO...Silveus Insurance Group, Inc. (local insurance agency) so graciously have donated/made available green bracelets (like the Lance Armstong "LIVESTRONG" ones) that say "Praying for Claudia" If you would like one of these CD's and/or bracelets, we would love to send it to you...e-mail your mailing information to sarahekessler@yahoo.com)