~We Are Back From Radiologist Regarding Second WBR Or Radiation Options~

[Believe51]

We went into this appointment with hope today but were not expecting to leave with 'second WBR' as an option. It is important to go to every appointment with hope and to take something home with you. As a whole we have considered all appointments let us leave with something even if it means we leave without an option. We have walked away from each session feeling full and content and that goes for some of the worst meetings we have had to face.

We met with the RadSquad today and the evaluation was to monitor symptoms, discuss the brain and to dismiss a second WBR. Depending on the person and their situation it still is an option for some, please note. We could have kept this for the last, last, last option but we have entirely let it go.

The mets are seeded everywhere and are all bigger than a grain of salt. This is an uncomfortable place to be but we were not surprised about the size or the amounts of infestation. Good thing is that he still remains symptom free and there is no edema yet, but will be expected to follow and it will consume the brain if not responsive. They are extremely dense and not the case with all brain met situations.

The team stepped aside for the most important part of this appointment, our RadMan. His conversation encouraged us to concentrate on a chemotherapy agent to help. Ed's initial WBR was given with an extra punch that pushed the limits. He said that he could give him a second WBR and.....he knows he could do no good for him.....but he does know that he could most certainly do bad for him.....he would steal all the things that make 'Ed' the person he is and that it would rob his complete essence. He does not recommend this as an option in Ed's case. Notice I said Ed's case, WBR in the manner in which we needed to initially attack with, left this as a sure 'no repeat'. It is still a dangerous endeavor but can still be an option for some and all radiation has its dangers of sorts.

We have taken tumor markers and detailed blood work on Tuesday (OncoMan) and their results will answer a few questions. One being to check to see if the Ixempra is working for Ed systemically and I cannot wait to see those TM's. Another is to continue to monitor the blood during this treatment and how the organs are continuing to function. It is not yet known if Ixempra passes the BBB so these mets could have potentially become bigger without it, start to die, or even become dormant. Since we do not know I will not concentrate on this but I will keep it as a potential source of hope.

I have a sick little boy on my hands and there are times great sadness which overwhelms my being. Somehow, someway, hope lives inside me....inside him. We push away the possibilities of what this reality could bring. I have no room, no time for this and surely no place to put that now. Cancer has already stolen from us and we have lived much differently than ever imagined, but it will never take our hope. It is all we have and I shall guard it like lioness.

With that all being said I leave saying this to you....Hope lives, courage carries and faith allows me to always believe. Let us all stay strong.>>Believe51