A little background

For those who haven't heard our story, our daughter Isabella Joy has been diagnosed with Neuroblastoma, and she has Opsoclonus-Myoclonus Syndrome with Ataxia. The symptoms of OMS are caused by the Neuroblastoma tumor, which is a type of cancer. OMS causes her to have uncontrollable eye movements ("dancing eyes") and Ataxia is the term for her incoordination and loss of balance. To summarize it, Izzy has a peanut-sized tumor in her lower abdomen/pelvic area. The tumor may have been there for months, a year or since birth, there is no way to know. Recently, her body has discovered the tumor as being a foreign object, and has launched an attack with antibodies. The antibodies are also attacking the part of her brain that controls her eyes and her ability to walk.

Izzy has been a perfect baby, always healthy and very happy. On December 15th, Izzy's 2nd birthday, her big sister Kaleigh noticed at dinner that Izzy's eyes looked different. She noticed a few slight "jiggling" movements. We didn't even notice it at first, and just wrote it off as no big deal. Then 2 days later, on December 17th, Izzy went to family Christmas party with my parents, while Tom and I finished up our Christmas shopping together. My dad noticed that Izzy had a little stagger in her walk a few times. We thought she must have an inner ear infection that was affecting her equilibrium. Ironically, she had a 2 year check up with her pediatrician that following Tuesday, December 20th. Her staggering seemed to be a bit worse, and he definitely noticed the Nystagmus (dancing eyes). He immediately referred us to a pediatric opthomotrist and scheduled an MRI. We met with the eye specialist the next morning, who determined that her optic nerves were not swollen, which would have indicated a brain tumor. The MRI was scheduled for Friday morning, Dec. 23, and we left the eye dr's office with instructions that if her symptoms seemed to change significantly before Friday that we should take her to ER. We were officailly "freaked out" and spent the rest of the evening in tears. The next morning we woke up to get ready for work, and Izzy was having a difficult time walking. She was literally falling down and bumping into things. So we made the call to take her to ER, where she was admitted. After two grueling days of tests (multiple IV attempts, an MRI, CT Scan, Lumbar Puncture) we were informed on Christmas eve that they found a small tumor in Izzy's lower abdomen/pelvic area.

Friends, I thought I have experienced heartbreak in my life. There is nothing that can compare to this heartbreak...there are no words.

At this point we are working with the team at Helen Devos Children's Hospital to determine the details of her situation. Every case is different, so they have cautioned us not to "google" stories about other children with Neuroblastoma or OMS, as it can lead to false hope or false dread. We are waiting for details on her test results. We are trusting in God.

If you are interested in learning about Isabella's condition, this website does a good job of explaining some of the details and treatments. http://omsusa.org/pranzatelli-Brochure1.htm

I have said this before and will continue to say it, we can FEEL your prayers. We are being lifted up in a way that is supernatural. Please continue to pray for our baby girl, and pray that God will touch lives through this in ways that are permanently life altering. God is at work, He is with us through this. Izzy has a story to tell when she grows up about how Jesus held her hand through this battle.

Thank you for being a part of our story and for remembering Isabella Joy in your prayers.

Karen, Tom and big sisters Charley (27), Kaleigh (19), Hailey Faith (5) and little sister Emma Grace (2 months)