Chris Tomlin – How Great Is Our God

Today, I was afraid, but I felt the prayers of what I believe has to be thousands of people by now, all thanks to family, friends, the internet, and how fast word spreads across prayer groups and social networks.  I had many appointments at the Clinic, including one to see my hepatologist, another to see the interventional radiologist who performed the chemoembolization to destroy the 3cm tumor on my liver.  Some touted the miserable procedure as fool-proof, but my hepatologist today told me that most people need it done every two months until transplantation.  (If the tumor grows past 5cm, UNOS will deny you a transplant.)  He said to be prepared for the radiologist to want to do the procedure again, for the tumor to still be there in one form or another.  At any size, they will want to make sure it stays small or gone.

Well look at these images.  One was taken during the chemoembolization of the tumor on my liver.  The second is what a MRI revealed my liver to look like this morning.  It doesn’t take a genius to see the difference.

Once the doctor showed me what the other organs in the scan were and I could identify the two images of my liver, tears came to my eyes. Look at my scans below – My liver a month ago, and my liver this morning.  I had 2 separate types of scans so that’s why they aren’t identical, but I circled and labeled my liver in both pictures in white so you could see what/where it is. I tried to label the other organs as best as I could remember.  The first liver’s big, cloudy spot is a ton of vasculature over a tumor.  The second liver is tumor-free, clean.

TumorNo tumor

The radiologist said he was perhaps too aggressive with his treatment, but after hearing from my hepatologist who specializes in liver tumors that the first treatment doesn’t ever handle it all, I am thanking a higher Power for handling this situation for me.  Yes, I still need a transplant for many other reasons, but praise God the tumor is completely gone, and I will not need to go through chemoembolization again.

And now for a worship favorite…

The splendor of a King,
clothed in majesty
Let all the earth rejoice,
all the earth rejoice
He wraps himself in light,
and darkness tries to hide
it trembles at his voice,
trembles at his voice

How great is our God,
sing with me
How great is our God,
and all will see
How great
How great is our God

And age to age He stands
and time is in His Hands
Beginning and the End,
Beginning and the End
The Godhead, three in one
Father, Spirit, Son
the Lion and the Lamb,
the Lion and the Lamb

How great is our God,
sing with me
How great is our God,
and all will see
How great,
How great is our God

Name above all names
Worthy of all praise
My heart will sing
how great is our God
Name above all names
you are worthy of all praise
and my heart will sing
how great is our God

How great is our God,
Sing with me
How great is our God,
and all will see
How great,
How great is our God

How truly great is our God.  He still does the miraculous and answers when His people pray.  Thank you for all of the love, cards, comments, emails, and mostly your prayers on my behalf.  Our Lord heard each and every one.

We are blessed to serve the One who holds our lives in His hands.
Amanda

Oh, and a quick shot of my bestie, Jen, when she came to visit me during the chemoembolization.  (I was pretty out of it on my pain pump – she’ll tell ya!) I had another visitor, too, and my sweet mom stayed the night with me.

Me & Jen

In over our heads

Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful.  Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out.  My doctor and I have a close relationship, and she fought back tears as my mom broke down.  I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.

Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists.  In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules.  And then I’m done.  Or so they say.

Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI)  The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP.  As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before.  I’ll feel good, have energy, and be able to really live.  Being sick since age 5, I just won’t have any idea what it’s like.  I like the idea of it though!

In between telling our close friends and family, the next few days were just rough.  

Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.

5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult 
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG  (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm:  Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN) 

Friday was a little better…

The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!

I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.

Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.

I’m a little thankful I’m too tired to care much about this.  Otherwise I think I might be a mess.   Plus God is carrying us right now, I can feel it.  Plus this isn’t quite reality yet.

Love to you all.