Road Trip

We are thrilled about the good news from the surgery and the preliminary tests on the tumor, but we aren't out of the woods quite yet. The other part of Izzy's medical condition is OMS (Opsoclonus-Myoclonus Syndrome), which was triggered by the tumor, and it is so rare that not many neurologists know exactly how to treat it. There is a specialist in Springfield Illinois, Dr. Pranzatelli, and our neurologist here has recommended that we see him ASAP for a consultation and further testing. So we are packing our suitcases (again...I just unpacked them!) and going on a road trip leaving tomorrow to see Dr. Pranzatelli. Izzy is going to have another lumbar puncture because they need more spinal fluid to determine how severe her OMS is. The treatment plan that is the normal protocol for OMS is only to manage her symptoms, OMS can be life long and has no definite cure. It can cause severe learning disabilities and behavior problems. There are 4 different medications that she may need, and they have whopping side effects. They are also immune suppressants, which means that Izzy will be very susceptible to catching sicknesses and won't be able to go to regular activities and fun events with other kids. Although she is doing better now because of the medications, it is common to relapse a few weeks after the IVIG treatment that she had over Christmas weekend. Please continue your prayers for Izzy that she will be cured of OMS completely without medication. We know our God has already answered so many of our prayers, we are boldly asking for another miracle!

We will have more results from the pathology tests on the tumor by Wednesday which will confirm if it is malignant or benign. We are so happy about the news that there were no cancer cells in the preliminary "freeze test", but then a friend cautioned us that this happened to them (negative results in freeze test) and then cancer cells were found with the more extensive testing, so it burst our bubble a little bit. We know that God is in control, but it's still nerve-wracking and exhausting during this period of waiting.

Sigh. I am feeling a little bit like our life has been like a "Lifetime" movie these past few weeks...and I never cared much for Lifetime movies. But I know there will be a happy ending, because God is the script-writer.

"Faithful God,  I am here today, praying to you now, because you've kept your word. Today is a gift because of your almighty and ever-present power that holds all things together. Thank you that I don't have to live anxiously but can live confidently, trusting in your providing hands to keep us in your love. Amen."

(from the book "Seeking God's Face"; special thanks to Pastor Jon and Sam for the gift of this book)

We still need your prayers, please continue to remember Isabella every day when you spend time with our Heavenly Father.

With thanks,

Karen & Tom