View Full Version : NIH called
Mon Jun 11, 2012, 07:07 PM
:( Well, we got a call today from NIH in Bethesda and it was NOT the call we wanted to get. After going up there last week for evaluation and BMB, they called today and said Al's blast numbers are back up to between 10 and 15 and he is not eligible for the Eltromobag trial. So after picking ourselves up - AGAIN - we are searching for another trial. We are looking into Moffitt as they offer the same drug with different criteria. But of course it will all depend on (1) how our insurance is going to work (right now we're waiting on a "out of network authorization" from our primary oncologist here in Georgia; (2) what treatment if any the Moffitt doctors recommend if and when we are able to go there; (3) what our other options are and we are still working on that.
Can you tell I'm a bit out of it? Sorry, just have to have a small pity party. We were so hopeful that he would be able to get into the trial at NIH.
Hopefully, since one door has closed, another one will open. I'm trying so hard to keep the faith. Our plans are not always God's plans. :)
Would appreciate any thoughts, suggestions, and as always, prayers.
Mon Jun 11, 2012, 09:17 PM
I have no thoughts or suggestions as I have not explored this path, but I do offer my prayers. I have found much solace and energy by turning things over to God, when I can't find the answers myself. Don't get stuck right here today: tomorrow or next day or next week, you may have options and answers not yet revealed.
PS Pity parties are allowed, by all, on occasion.
Mon Jun 11, 2012, 10:51 PM
Thanks, Donna, I needed that. My sister posted a saying on Facebook the other day:
There isn't enough room in your mind for both worry and faith.
You must decide which one will live there.
I definitely need to work on that!
God bless you,
Tue Jun 12, 2012, 09:16 AM
I'm sure you know how much I wanted things to work out for you and Al at NIH. I am so sorry that it didn't. At least you tried as I know you don't want to leave any stone unturned.
I am a huge believer in things working out as they should - even if we can't see it at first. I know that keeping the faith isn't easy when life doesn't go as we think it should. To me one of the most comforting passages is Proverbs 3.5..."Trust in the Lord with all thine heart; and lean not unto thine own understanding." But as I said - it isn't always easy.
I love what your sister posted on Facebook - I copied it to keep handy.
We are all here to support you both as you and Al go forward from here. Please keep us posted.
God Bless you both!
Tue Jun 12, 2012, 04:55 PM
Thank you so very much for the comforting words both here and in your email. You and your husband are such an inspiration for all of us. We made an appointment for Wednesday with our regular oncologist here in Atlanta to try to get things moving in another direction, whether it be Moffitt in Tampa or something else. I know when one door closes, another opens; even though it's hard for us to see that right now.
I'll post tomorrow after we talk with our oncologist and let you know what we are going to try next. Now that we have to be concerned about insurance, and approvals, and all that other stuff that we didn't have to consider at NIH, it will probably take a little longer.
When things calm down, I'll sit down and email you our experience in Bethesda. As far as NIH, it was top notch and I don't regret our trip up there. It was definitely a learning experience.
Hope y'all have had a good trip.
Thanks again for helping me keep the faith.
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