It has been a day. Let me give a little history as some of you know more than others...
Myself, Olivia and Liam all have a genetic mutation called LiFraumeni Syndrome. We just learned this information over the past several months. In a nutshell, this means we are more prone to tumors anywhere in our bodies, which explains why I had 2 totally unrelated cancers. We overall live a fairly healthy lifestyle, but it is now even more important since our bodies can't fight off abnormal things the way healthy bodies can. And with this knowledge, we are able to get screening, such as MRIs yearly and other scans and tests to try to catch anything that might start to grow.
The kids are being followed at the Children's Hospital of Philadelphia. And I am being followed at Penn in Philadelphia.
One of the first tests for Olivia was an abdominal ultrasound where they found a 3.5cm mass on her spleen that looks to be benign. We don't have any more info on that as of now.
Over the weekend, she told us she was seeing two of everything, and her eyes started to cross or turn inward. I knew something was wrong. I hoped it was a vision issue, but unfortunately today confirmed otherwise. She was scheduled for a Brain MRI because of the crossing of the eyes as well as an Abdominal MRI to take a closer look at her spleen, but unfortunately because she got sick this morning, she was unable to be sedated for the MRIs. They were, however, able to do a CT scan of the brain since that only took a few minutes. She did great! The bad news is that she has a brain tumor. All we know as of tonight is that it is on the left temporal part of her brain and is pushing toward the center line of her brain, which is affecting her eyes.
Tomorrow (Wednesday) she will get the Brain MRI to get a much more detailed look at this tumor...possibly will also get the whole body MRI, but that is up in the air. The focus right now is the brain.
Thursday, she is scheduled for surgery to remove the brain tumor. Again, we don't have any more info on the tumor itself. I don't know how big it is and don't yet know if it's malignant or benign. As soon as we have info and can absorb it, we will update this so that you are informed as well.
I am going to use this website to update information about Olivia so that everyone is getting the same info and so that we're not making a ton of calls, etc. I'm pretty sure that if you sign in, there should be an option to receive an email anytime a new "Journal" is posted.
Paul and I are so grateful for the outpouring of love, support, and the desire to help. THANK YOU. Right now all we need are prayers. Prayers for complete healing for Olivia. And prayers that nothing is wrong with Liam...his screening hasn't even begun yet.
Again, look for updates in the "journal" section. And sign up to receive email notifications if you'd like. We love you all.
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