MRI results Dec 3, 2008

Brian had his first post operative MRI on Monday. Those results were read to us today.

First, though, I will report on Brian's overall health in the last month. On Nov. 4, his last MRI date, he could not lay down without having a series of seizure-like activities - dizziness and confusion - due to the increased spinal fluid in his ventricles. He also could not walk across a room without assistance. In addition, he was suffering from excruciating headaches. Since surgery, Brian has continued to improve in strength and neurological function. His walking became brisker and more stable than it was pre-surgery and improved gradually throughout the last month. In addition, his speech greatly improved. He tapered off the steroids so his appetite is back within healthy boundaries and his grumpiness has dissipated. He is not suffering from headaches much at all.

However, in the last week, Brian's body in general has been incredibly fatigued. He has low energy and his muscles and neck ache. His right hand since Monday has lost some function as his fingers barely move.

In talking with the doctor today, it appears the tumor has grown again. From 2.7 cm to 3.4 cm in one direction and from 3.2 cm to 3.5 cm in another direction - about a 15-20% growth. This is since the Nov. 4, MRI. The tumor is now pushing some of the healthy areas of the brain and that is most likely causing his right hand symptoms.

The overall fatigue and muscles ache symptoms are probably from one or a combination of things. From the surgery, it was discovered that Brian had low sodium in his system. His body is flushing sodium at a rate greater than it should. To alleviate this problem, he is supposed to increase sodium intake and reduce his water consumption. Both are difficult for Brian to accomplish. We have substituted Gatorade from water all together now. Low sodium can cause some muscle issues and neurological problems. In addition, around the surgery time, Brian was taking large doses of steroids. It could be that we tapered off the steroids too fast causing his body to be cortisol deficient. The steroids have to be tapered slowly in order for the glands to start producing cortisol on their own again since the steroids supplement the body with it and the glands stop producing it when one is on high doses of steroids. So, it is also suggested that Brian go back on a low dose of steroids and taper even more gradually over the next month.

As far as next steps for the tumor progression, here is where we stand. Dr. G (oncologist) is going to speak with Dr. K (surgeon) about his thoughts regarding surgery, etc. As you probably remember, Brian is pretty against any further surgical resection, so unless they think there has been some amazing change or something minor can be performed, surgery is pretty much out. That is a discussion between the two docs first, though. We are meeting with the surgeon on Dec. 9, 2008. The tumor board will discuss Brians case on Monday, Dec. 8 to determine from a radiological, surgical, radiation and oncological standpoint what they think should be prescribed. In all likelihood, the consensus will be further chemo if Brian is willing.

Brian is willing. He tells me he still has some more fight in him. He feels strong enough to handle further treatment. This is not the news we wanted to hear, but have come to be somewhat prepared for.

The next chemo will likely be VP-16 with Avastin or Carboplatin with Avastin. The VP-16 is a pill taken for 21 days at home. The Avastin is given IV every other week. The Carboplatin is given once a month IV. Both are tolerated pretty well, with the VP-16 being a bit harsher with respect to nausea. The Carboplatin mostly affects the blood counts, particularly platelets.

So, that is where we stand today. We will have a decision within the week for our treatment plan.

Our biggest prayer right now is for health for Brian and clarity in our decisions.

My biggest prayer, selfishly, is for a blessed Holiday month. I don't want anything to mar this time for my boys and for our family. There is a possibility this may be our last Christmas together and I just want it to be as perfect as it can be with lasting, good memories for our family. I pray Brian does not deteriorate and is not sick during these next several weeks in order to make travel easier, as well.

KEEP BELIEVING