Alyvia has been having some 'episodes' lately where she'll just all the sudden loose her vision. She'll be fine one minute and then the next she can't see anything. At first it just happened once, but then it started happening more and one day it happened 5 or 6 times throughout the day...I was definitely bothered by this and so were the doctors, especially since Livie has been having more seizures lately. The doctor's biggest concern was whether or not the tumor was growing back or if there was scar tissue from where they removed the tumor that was causing these problems. My biggest fear is the tumor coming back. So when Livie started having these problems I was worried sick about it...
We headed down to Primary's and Livie had another MRI. She has to be put out with general anesthesia (GA) for an MRI instead of just regular sedation because for some reason the regular sedation makes her stop breathing...which isn't very fun! ha.
Livie did really well this time with the GA, this was her best time yet, I was so happy things went so well...and then I had to talk to the radiologist about what he saw on the MRI, I was
SOOO nervous.........
He said the MRI looked unchanged since her last one and that there was
NO sign of a tumor. She does have scar tissue by the cerebellum, but it is minimal. So in a nutshell, Livie passed!! The MRI looked good!
PHEW!!!! I am so happy and relieved that there's no tumor!!!!
Since Livie has been loosing her vision, though, we had other appts throughout the day and one of the appts was with an opthamologist. He tested Livies eyes and said they are......
GOOD!! He said they appear healthy and she see's as a normal child should!! Another
PHEW!! Especially since Livie did have cortical blindness when we came home from the hospital a year ago. She had her eyes tested then and they did not find any permanent damage (thank goodness!) but they were slow to respond and there was some misfiring caused from all the brain trauma she had...
So I was
REALLY happy and thankful this weekend when Livie passed her MRI and her eye tests. What a blessing (:
Because no one knows why Livie is having the episodes she's been having, her neurosurgeon said we'll have to follow up with a neurologist, but he said her brain scan looked good (
Yippie!)He can't explain why she looses her vision except that perhaps with all the brain trauma Livie suffered, sometimes her brain still misfires and causes these things to happen. The brain is so complex that who knows?? What I do know is that I'm
SO grateful Livie is doing as well as she is and that there is no sign of a tumor. I know the tumor could come back at any time, I hate having that nagging thought in the back of my mind, the what if's. But I guess none of us really know. Life is a precious gift that, sadly, can be taken from anyone at anytime. We have to live each day as it comes and I am definitely very thankful for each day I have with my Livie Bug!! What a wonderful start to 2009, hopefully this is a sign that this year is going to be a good, healthy year for us! (:
**I learn more and more about brain tumors everyday. When we first found out Livie had a tumor in her brain stem I hardly knew anything about brain tumors except that they were bad. I have since learned a lot more about them and thought it might be interesting posting some facts about them...
First, what does the brain stem do??-The brain stem is in charge of all the functions your body needs to stay alive, like breathing air, digesting food, and circulating blood.Part of the brain stem's job is to control your involuntary muscles - the ones that work automatically, without you even thinking about it. There are involuntary muscles in the heart and stomach, and it's the brain stem that tells your heart to pump more blood when you're biking or your stomach to start digesting your lunch. The brain stem also sorts through the millions of messages that the brain and the rest of the body send back and forth.
*Livie's tumor was located in the brain stem underneath the cerebellum, when the neurosurgeon operated on it, he said he had to lift up the cerebellum in order to get to her tumor.
**Brain Tumor Facts
About Brain Tumors
-A brain tumor is a cluster of abnormal cells growing in the brain (in Livie's case, the brain stem) caused by cells reproducing themselves in an uncontrolled manner.
-There are more than 120 different types of brain tumors; some are malignant (cancer), many are benign (non-cancerous).
-Brain tumors are difficult to diagnose; their symptoms often mimic other diseases.
-Brain tumors are the leading cause of solid tumor cancer death in children under the age of 20.
-Standard treatments include surgery, radiation and chemotherapy.
-Because of their location, most brain stem tumors are inoperable. **We are SO lucky that Livie's was able to be operated on.
-Most brain stem tumors are malignant (cancerous)
-The cause of brain tumors is unknown.
-Often, the damage done by brain tumors is due to their size. Because the skull is bone, it cannot expand to make room for even a small mass growing within it. As a result, the tumor presses on and displaces normal brain tissue. This pressure may damage or destroy delicate brain tissue. Many of the symptoms of a brain tumor are caused by this pressure. Sometimes, a tumor may cause blockage of fluid that flows around and through the brain. This blockage can also create increased pressure. **The very first time we saw Livie's neurosurgeon, he said that she had so much pressure from the tumor blocking her spinal fluid that he would have only given her 2 more weeks to live before she would have died from it.
-A benign growth may become malignant (cancerous). In some tumors, a lower-grade tumor may recur as a higher-grade tumor. **Livie's tumor was low grade.
-Tumor grade indicates the degree of malignancy
-Brain stem tumors make up 10-15% of tumors
-Operating on the brain stem is very risky because it controls so many functions
-More knowledge about brain tumors has been gained in the last ten years than in the past hundred years.
The adorable Charlie Cooper with his dad and one of our cool nurses from PCMC
....We finished!!
Okay, so we might not have come in first, or even 2nd or 3rd place, but we did it!!!
