surgeries and interviews

We met with Dr. K, the surgeon, again today.

He stated how pleased he was at Brian’s condition and current status given where we were a little over a month ago prior to the shunt placement. He truly didn’t expect the shunt to provide Brian with as much relief as it did.

Next he stated that Brian’s MRI is definitely showing growth and it looks likely to be malignant tumor with increasing enhancement on the scan accompanying the growth. This is definitely concerning and does not bode well for Brian’s prognosis.

He stated that the prior surgery left an area of access, if you will, for entry into the tumor bed. A sort of a void then the tumor starts then there is healthy brain surrounding it. He stated he could get to some of the tumor relatively easily, but as he neared the edges, he would get to very sensitive and key areas such as Brian’s speech and motor functions, mainly his arm/hand. If he were to do a surgical resection, he would debulk the area he thought he could get with reasonable safety leaving a margin of tumor behind.

But not without risk. There is risk to Brian’s speech and motor functions even if he leaves a significant margin. About a 15% or so risk, if he were to give a number, to further damaging Brian’s abilities. The reason for this is that the brain has redundancy of functions. With each resection (removal of some brain) the redundancy is being eliminated. As is pretty apparent with Brian’s current condition, the redundancy of certain functions with Brian is eliminated at this point in time given his 3 prior resections.

So, the decision is this: Surgery or not to Surgery.

And it is the biggest decision we have had to make yet.

The case against surgery is that this does not treat the actual cancer. It just removes some of something that is very aggressive and growing despite our best efforts. The remaining cells will likely act as they are now - growing and progressing.

However, debulking the tumor would give us more time to be together until the tumor grows to a point where it compromises Brian’s life again.

However, debulking could cause Brian to have further problems than he has – his motor functions and his speech. Making it so that even if it did buy us more time, that time would lack in the quality we have now being able to communicate and have Brian mobile.

As we left it today, we are meeting with Brian’s oncologist tomorrow to discuss chemotherapy options. Any chemotherapy that we do would delay surgery due to the effects of chemo on the blood counts, etc. making surgery and its side effects more risky with bleeding and infection.

Dr. K did state that if we thought surgery was something we were considering at some point in time, then sooner than letter would be better for Brian. The tumor is large as it is. The larger it gets, the more risk involved. He stated that for many people the risk of surgery for a few additional months would not be worth it, but with a 5 and 7-year-old boy, a few months is a large portion of their lifetime.

We would not do any surgery until after the holidays regardless. Dr. K, being a father of 6, stated that we should enjoy our holidays and think about this for a while. We are meeting with him the first week of January.

From my standpoint, the thought of surgery petrifies me. While the idea of more time is terrific, I don’t think I have fully absorbed the idea of little time as it stands. Brian seems to be doing so well with the exception of his right hand becoming almost non-functional in the last week. His speech is not too bad and he is very alert and in a great mood.

Also, to me more time isn’t worth it if it is a poor quality of time. I just want what we have remaining to be wonderful.

And the thought of spending more hours in the hospital dealing with the university system makes me want to put my fingers in my ears and hum “Mary Had a Little Lamb” over and over again. It is selfish on my part, but the surgeries and time in the hospital are VERY hard on us as a family. I don’t know what the recovery would be, but I hate having to choose whether to spend the night in an ICU waiting room chair where I can be close to my husband who may need me, etc, or home with my boys who also need me. I hate that my boys don’t have Daddy at home and are tossed between friends and family members while their parents have to make difficult choices. Grant has been acting up as it is and I am afraid of what may be in store in the aftermath of another surgery. This is WAY harder on my kids than anyone who doesn’t spend every day with them could possibly understand. I know kids are resilient, but they are also fragile. My kids need stability and I feel like every time I turn around, we are about to turn their lives upside down AGAIN. It makes my head spin.

Also from my standpoint, I want to look past my own issues and hardships and do whatever it takes to be with Brian for as long as possible. We all know that if I ever felt like Brian made a choice not to have a surgery that could have given us more time because I was exhausted from handling the home front and discipline and stability, I wouldn’t be able to live with myself the same way.

Lastly, from my standpoint, I am tired of having to help make this choice. And I am grateful for having this choice. Does that make sense?

From Brian’s standpoint, he feels good and stronger right now and wants to do SOMETHING to be aggressive towards the tumor. He just doesn’t know what that SOMETHING is.

On another note, we were interviewed last week for a message at our church this weekend. The message is about Finding Peace. We will be there at 9:00 am (we live across the street), but there are services at 6:00 on Saturday and 9:00 and 11:00 on Sunday. They will show a video clip during the message sometime from our interview. I can’t wait to watch it because I need to remember what I said about how we find peace in the midst of our struggles.

KEEP BELIEVING