~We Are Back From OncoMan And We Bring To You Our HOPE~

[Believe51]

As we are waiting in the room for the doctor a knock comes. At the time I did not know that it was 'hope' knocking, all we seen was a man and woman enter the room. Does my OncoMan realize that today is not the day to speak with others??

Of course he did! He would show up after an half hour but for now he knew that Ed and I needed to be treated today, I love our doctor to pieces. This man working on his fellowship and the sweet young lady was a student. I start off saying that I came in with a 'shimmer' of hope and was leaving with even more. He started his conversation saying that you either have hope or not.....and that there is 'always' hope. His mother has many of the issues that Ed has and he has done his own personal research for her. Both himself and our OncoMan thought he could help us, I am honored and touched by this. You could tell that OncoMan let him get the initial glory for his personal need to suppy us with hope. I could feel this gentleman's need to give back in tribute to his ill Mother, he was doing more than his part as a future OncoMan. Today he treated a couple, tomorrow he will be someones Oncologist and this gives me hope for the future all by itself.

I brought a partial list of things I wanted to discuss as options but reserved it until later. We sat and spoke in depth about what is happening to him and what would be options at any degree. When he mentioned these options he was naming them off like he was reading my list verbatim. Tears rolled effortlessly off my cheeks as I sat and listened with my eyes closed, my spine tingling. The room spun gently with complete euphoria and I kept saying, "This is not a dream....a race against time but it is not a dream!"

The doctor came in with confidence and a hopeful yet serious look on his face. He is a blessing in his own right and knew what today needed to be. When talking with everyone here today, we were all on the same page, same line and I know we all impressed one another. For the two hours we spoke can you imagine how much time invested into the research that took place?? Just you all seaching and pulling the guns took many, many hours.

Rambling but hope does that to me. While there the fellow called Dana Farber and spoke to seperate heros there he knows personally, good to have connections said the king...oh, back to the story..(lol) I knew that Dr Nancy Lin has made great strides with the brain. We will be seeing whoever suits him best medically at the time of further research. Dr Harold Burstein, Dr Eric Winer and Dr Nancy Lin will concur and take it from there. Our appointment will be next week some time.

Our OncoMan kept the list because our girl, LANI had results he had not read yet (go Lani!). Lani, you are unbelievable and such a wealth of information and support. You personally have saved us from much peril through this entire journey with your always caring efforts of support. My greatest respect and admiration.

We scheduled another Ixempra (#3) for June 26 just in case we need it, next week makes that decision. It is not yet proven that Ixempra does not pass the blood-brain barrier, for all we know this could be helping. We will know soon if this is the case. This may be an instance of adding an element if Ed so chooses, another option. If Ed's tumor markers do not rise and maybe have gone down, this is a wonderful choice I hope we can keep getting. The brain may get treated seperately, for now we are watching for edema and will treat if needed.

Thursday we see the Chief Radiologist Oncologist to speak of whole brain radiation for the second time (yikes) and adding synergy for a punch. This is an option as awful as it may sound and as much as it is not recommended.

Well there you have it again My Sweets, all in a neat little (hahaha) post. Today our souls were fueled with hope. There is more hope to come in the next week or so and the clock is ticking fast. We have serious decisions to make after all the options are explored.

I want to take another minute to thank you for all coming together to support and love us. The posts to these threads have been read over and over. You have helped to treat our souls and to replace our fears with hope. There still is the reality of the urgency and importance on making the decision that will work before more brain activity makes this impossible.

So I bring back home our hope, not just the Mighty Oak's hope, but hope for us all to claim.>>Believe51