Hoping for a sweet ride like this one!
I was researching treatment options for chronic Graft-vs-Host disease which followed my bone marrow transplant and ran across a study being conducted at the National Institute of Health in Bethesda, MD. It's a historical study, but because GVHD affects all areas of the body inside and out, there is a team of specialists in every field who I will meet with over four days and receive all kinds of tests...CT scan, MRI, echocardiogram, pulmonary, dermatology, biopsies, oral, gynecological, etc. They meet together as a team when we're finished and decide the best treatment options for me, write a report and send it to me at home for my doctors.
It's a great opportunity to get everything looked at in one shot and get the cutting edge options that are available to try. The great news is that the flight out there is free for me as it will be on a corporate angel flight which is a network of Fortune 500 companies who've donated their extra seats when they happen to be flying from your area to where you want to go if you're a patient going to an NIH-sponsored treatment center. I think NIH counts! :)
I couldn't plan the trip because it is just what comes up in the system right before you are supposed to go. I can't tell them what day I want to go or pick the city of choice. But, the great thing is God is in control and cares about these details for me. As it turns out, I will be flying out of Long Beach this Friday, the 6th. It seems earlier than I'd plan because my appointments don't start until Tuesday, the 10th. However, it happens to be flying into Richmond, VA, home of my best friend from high school, Kelly Koch Jones. That right there is Providence, my friends! We're going to have a wonderful weekend together before I go up to Bethesda on Monday.
I don't have a return flight home yet, but that will surely come up just right and just in time. I am all for adventure and this whole trip sure fits the bill! I'm going to relish in it for a week even though I'm going to miss my family terribly. I was hoping to bring Mike and the boys since I have a seat for a companion to go with me, but the corporate jet rules are no children under 21 unless they're a patient. And with all their grandparents gone on their own vacations, and therefore no childcare, Mike is staying home with them. That's alright...we'll go again in the future when they're older and we can do it as a family and see more, but free would have been nice too!
As it turns out I'll be staying in a hotel near NIH so I don't have to rent a car (hopefully). NIH reimburses up to $50 a night for hotel and $8/day in food. That's will feed the rats of NIMH, but not me and only rats would stay in a $50/night hotel! The only hotels in that area that are available are $200 a night so please pray for provision for this as we are not in the green yet.
I'll take photos of the trip and try to update you on what it was like to be Queen for the day...riding VIP on a corporate jet -- don't I feel like all THAT!? Can you tell I am a little excited?
This is my theme song for the trip: Oh Virginia by Blessid Union of Souls - so great!
I'll be meditating on this verse as I fly from the west to the east coast even though I know that the Psalmist is referring to a much wider span! High in the air, I will feel His love envelope me as I imagine how small I am compared to God and His love as I'm whisked across the sky...may you be caught up by Him wherever you are!
Psalm 103:11-12
For as high as the heavens are above the earth,
so great is his love for those who fear him;
as far as the east is from the west,
so far has he removed our transgressions from us.
so great is his love for those who fear him;
as far as the east is from the west,
so far has he removed our transgressions from us.
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