February 6th

Another day is in the books, and just like the others it was full of highs and lows. Kathryn was able to get at least a couple hours in at work today while missing only a couple hours for a doctors appointment with a neurosurgeon. Brent on the other hand got to enjoy the day with his amazing daughter other than the time spent at the appointment. We did some enjoyment this evening when we got to see the Papillion Times and Bellevue Leader articles for Emma. A special thank you goes out to Adam Klinker and the Omaha World Herald staff for taking the time to get to know our precious Emma.

We thoroughly enjoyed meeting Dr. Bowdino today as he went through the MRI from yesterday and what he thought the next course of action should be. He went through the information and told us that the because of the large tumor that was removed from the right hemisphere spinal fluid has replaced this area and more and it is unable to drain appropriately. This is causing the jump in head size as the portion of the skull that was removed is being pushed away from the remainder of the skull. We also noticed today that her soft spot is beginning to show signs of puffing out as well. The doctor effectively explained to us that the fluid has also worked its way between the brain and the skull. Because of this the fluid is pushing the portion of the brain in the right hemisphere into the middle of the brain. This combined with the pressure of the fluid in the middle could cause damage to what remains if it is left untreated.

He also explained that the treatment that he felt necessary is to insert a shunt into her brain that would remove the fluid from the outer portion of the brain in order to get the brain back out the outer portions of the skull. This would also lower the pressure and allow the skull to go back to normal. After the brain moves back to the correct position the doctors would go back in and move the shunt into the middle portion of the brain to lower the pressure there. The shunt would then remain there for the rest of Emma’s life. He also took the time to explain that the shunt is a tube like structure that has little holes in the end in the brain and also has holes in the end that goes down to the stomach region. These holes allow spinal fluid to move rather easily from the brain down to an area that will be absorbed into organs and eventually disposed of naturally. The rate of fluid that is moved is determined by a valve in the neck area that can change the rate of flow by using a magnet based on the pressure located in the brain. The valve in the neck also is a place that the doctors can use to check for infection by inserting a needle and drawing fluid out.

All of this is useful for getting the brain into the healthiest situation. The issue that comes along with this is the fact that the shunt can also create its own issues. We were told that a regular surgery without inserting a foreign object has a .5% rate of infection and a surgery that places a foreign object into the body has a rate around 2-4%. Obviously infection is bad anywhere but an infection in the fluid of the brain causes meningitis which we obviously need to avoid. Shunt surgeries around the world have a 10% failure rate in the first month and a 25% failure rate in the first year. These failures can be caused by the body plugging the tubbing with protein or infections even after the surgery. Other possible concerns would be the tubing breaking from wear and tear in the neck area or issues that come from growth of the body throughout the years.

Needless to say when we left the doctor we were unsure what to do but felt that if Dr. Goumnerova had the same opinion it would probably have to be something we needed to do. We had overnighted the MRI to Boston so that she could get a good look at what was going on. Around 2:00 this afternoon Dr. G called and said that she was definitely concerned about the high level of pressure and felt that the plan we had heard is the exact same thing that she would do in this situation. After hearing this we decided to call the doctors in Omaha and set up a surgery to insert the shunt.

Of course knowing our past month it isn’t going to be that easy though. We are also going to try to have a port placed in Emma at the same time to allow us to get two surgeries done while only having to put her under once. We also need to have a spinal MRI done but the doctor said that he wouldn’t want her to be under that long unless necessary. We may do the MRI before the surgery but who knows at this time.

Yesterday we also got the opportunity to meet our oncologist Dr. Abromowitch and she went through what we can expect through the process of chemotherapy. She was an outstanding lady that answered every question that we asked. A couple of the important notes that we found out were that the chemotherapy will take around six hours each time we go in and that she won’t have good and bad days or weeks. We were informed that usually with little kids the only bad days they have are the days that they actually get the chemo. We were also told that the young kids handle chemo better than anyone else. So we will keep our fingers crossed. On a side note, chemo will not be able to start until ten days after the surgery for the shunt.

As long as the email alerts go as well as planned we will probably start posting only on EmmaStrong.com soon. This will allow us to not have to copy and paste messages and would give us a consistent website to go to.

Tonights prayer request goes to anyone involved in the incident at Bellevue East today especially Tina Sonntag, Nicole Burns, Administrators, and the students present. These students need to know that life is way to valuable. God bless everyone involved, we are thinking about you.