Monday, August 29, 2011

Neuro Oncology Appointment

Majesty, Majesty, this is our story......

Those words keep going through my head as we sang them in church yesterday. This is our story, this is the story God choose for us.

We had our appointment with Dr. Gross this morning. He is our neuro oncologist at MD Anderson. He was amazing. A wonderful, intelligent and up beat guy. He was very positive about David's tumor and gave us all the information about the tumor and what kind it is. And used a bunch of words that I really did not understand. So, you can refer back to David's post about the exact make up of his tumor.

So what's next? Now that we have resected 99 percent of the tumor? That we don't know. More waiting and MORE PRAYERS! There is still one more piece of information we need to find out from pathology that we have not gotten back. This is the one piece that determines our treatment. We need to find out the make up of the IP19Q. We need to find out if it is co-deleted or non deleted. This is what that means.

If it is co-deleted! That is good! That is wonderful! Pray to God for it to be co-deleted. If it is co-deleted that means that treatment would be either observation, radiation or chemo. Dr. Gross said if it was co-deleted he would suggested we do just chemo. Chemo would involve a pill that David takes Monday - Friday for 5 days each month. The Chemo would prevent the tumor from growing and hopefully shrink what is left. Then we would follow up with MRI's every 2-3 months. With this option he is confident David could go back to work as soon as he feels up to it.

If it is non deleted, not so good. This means that we have two options. Radiation for 6 to 8 weeks. Or to be a part of a clinical trial that involves radiation and chemo. The clinical trial would all need to be done at MD Anderson. Which would involve David's parents having a new bunk mate and David not being able to go back to work as soon as he would like:) Also, with radiation there can SOMETIMES be cognitive effects that you do not see for 5 or more years. But, that is a SOMETIMES. He said with David's intelligence and age he may not experience any of this.

We also asked the Doctor about long term survival. He said it could be 7 to 12 years. But, then again he can't say. He said he has a patient that had a stage four tumor and has been alive 19 years and is living a normal life hard a work. And then has a patient that had stage 2 and didn't live nearly as long. He was very positive about David and him beating this. I told the Doctor that I know this is not curable but managable. He looked at me and said I don't know what you are talking about. The advances we have already made and are making are going to make this treatable in no time. He was awesome. He basically told us he is our quarterback and he is going to put us where we need to go.

I also asked about diet. He said we can always try flax seed, tofu and green tea and Olive Oil. He said there is not fact that diet helps or prevents tumor growth. But, from people's personal experiences it has. Now, we just need to get David to fall for that!

I really hope that this answers every one's questions and not only ask for continued prayers but to Thank God for all the blessings he has already given us in this journey. We sometimes pray so much for our needs that we forget to thank him for the many blessings he has given us.

A lot of people have commented on our strength and faith and it is through this wilderness we are in that our faith has strengthened. I hope we have glorified God through all of this as that is our purpose on this earth. I do not know how any one could experience something like this without faith. God is the only solid and true thing we have and we hold on to that.

We love you all. We are heading home. We don't need to proceed with any appointments until we get our final pathology back. Hopefully by friday. Also, praise God for Dr. Gross and his impact in our life and for his knowledge.

Lots of Love!
Dana and David