Thursday, December 12, 2013

Melasuckanoma

Well one minute you are hanging Christmas lights, and the next minute you are in the ICU at MD Anderson.  This unfortunately is all part of the melanoma journey.  So, what happened?  HOW ARE WE HERE????? It all started on Tuesday morning.  Bennie kind of coyly asked me when I thought they would schedule his next brain MRI.  So of course I ask a bazillion questions, because I immediately know something is up.  After 30 minutes of grilling him he finally tells me he had a bad headache on Monday, and it hurt when he woke up and anytime he would put pressure on his head.  I tell him we need to get it checked out ASAP but of course he tells me its probably sinus issues.  Fast forward a couple days, and he was working late.  He called me around 8pm on Thursday night and said he probably needed to go to the Dr. because he couldn't read, type words, had a headache, and felt really disconnected.  I finished putting the kids to bed, and my parents came over so I could take Bennie to the ER.  Bennie and I were hoping it was a fluke sinus infection (even though we both knew) so we took him to the ST Lukes ER by our house.  They immediately did a CT Scan and found a 2.5 cm brain tumor that was causing a lot of edema around the brain with hemorrhaging as well.   MD Anderson was on diversion status (which means they wont except patients who are at another hospital)  so they wanted to take Bennie by ambulance to another St Lukes that has a neurology department.  We knew we had to get to MD Anderson.  I called the on call Dr. and asked if we could escape and just drive down there.  He said that would be best (but don't tell anyone I told you to do that in case he dies on the way).  So we signed against medical advice and Bennie's brother, Barney, and I hauled butt down to MD Anderson to get him to the ER.  We got him there is 30 minutes, and he was quickly seen by a ton of Dr.'s thoughout the night.  It was determined his brain was too swollen to immediately do surgery.  They put him in ICU for two days and pumped him with steroids to try and reduce the swelling.  It WAS THE LONGEST WEEKEND OF MY LIFE.  He was constantly monitored for signs that he would need emergency surgery, but he held on until his surgery time on Monday.  Monday WAS THE LONGEST DAY OF MY LIFE..... AND SCARIEST.   Bennie went into surgery, and they said it would be about 4 hours.  About two hours in a lady came to put us in a room because she said the DR. wanted to talk to us.  The entire family about died.  We had no clue why she would be talking to us midway, and we all came unglued.  The Dr. came in finally and said the surgery went great, but it the brain was still very swollen.  She said there is a rather large possibility Bennie would have Gertsmann's Syndrome because of the swelling and damage.  Some people don't get it, but she said to expect that.  Gertmann's Syndrome is basically mixing up right and left, unable to solve arithmetic, analytical problems would be difficult, and sensory and spatial issues.  Bennie did great through surgery.  We saw him in recovery soon after, and he looked good.  I was so happy to see him.....and he knew who I was!!! Neurologists continued to do tests on him to test how he was recovering, and he is progressing good.  He still has some trouble with processing thoughts, reading, and typing but we are confident as the swelling continues to subside he will improve.  He got to leave the hospital yesterday, just two days after having brain surgery! AMAZING!!  SOOOOOO.......we are at MD Anderson right now getting a PT scan and will that will determine if has tumors elsewhere in his body.  It will also determine his treatment moving forward.  We will be meeting with his Dr. next week, as well as a radiation oncologist.  Because his brain tumor hemorrhaged there is a large probability it will return or spread across brain.  He will be doing whole brain radiation or a focalized radiation to try and stop that from happening.  It is going to be a rough couple of months getting through all of this, but once again could be worse.  WE are blessed he only had one brain tumor, and we are blessed it happened this week and not Christmas.  The kids were so excited to have Bennie home, and we are praying there are no complications that he has to come back here between now and Christmas.  We want Emmi and Colby to be able to have a nice Christmas with their Daddy!  Please pray he will recover smoothly and we can come up with the best plan of action with the Dr.s.