Every Last One
12-14-2006
Jaymun's stats (heart/respiration/oxygen) have settled down into a good range. Also his kidney function - still good.
Even though he is still very bloated - and on a low level of morphine - he is able to continue breathing and his heart rate is good.
His fluid intake / output balanced out - he still needs to lose a lot of fluid but at least it stopped rising.
His skin looks much better (still puffy - but better). Circulation is improving - his cap test came down from 4 to below three. His hands and feet are toasty warm again instead of cold. These are all small improvements, but they are in the right direction. Praise God!
Now for the big one - his liver. There are two different devastating processes attempting to destroy his liver. CMV and VOD.
Veno Occlusive Disease is a horrible condition that is marked by ascites (abdominal swelling due to fluids leaking from the surface of the liver)
and leads to cirrhosis (severe scarring of the liver), and death.
CMV hepatitis is a viral infection. The CMV count would normally skyrocket daily by powers of 10. For example: 28,000 280,000 2,800,000 etc.
Every day more devastation - the liver cells releasing their enzymes into the blood as the liver surrenders, like that of a chronic alcoholic.
So... This is what we all have been praying about.
The doctors decided to harvest some white blood cells from Jennifer to get CMV antibodies. There is quite a bit of risk with this for Jaymun (rejection)
but you can't live without a liver and this was potentially a last ditch effort to stop the CMV.
However... Jaymun's CMV numbers did NOT go through the roof. Every day this week the tests have come back. Rather than skyrocketing, they are staying low. 32,000... 38,000... 28,000... 45,000...
And his liver enzymes are coming down, and his coagulation is improving. So - they have frozen Jennifer's cells because for right now - they do not need to use them!
And here's a number for you - his ANC is 1600! Normally his new immune system would barely have started to come back in. But with Jaymun, it is blossoming daily 180, 500, 790, 1600...
That means if he was not feeling so sick, his immune system is actually strong enough to take him out of isolation for walks!
So, the remaining real threat is VOD - veno occlusive disease. This is a severe complication - the third or fourth leading cause of death posttransplant in pediatric BMT patients.
However... Jaymun's primary BMT doc just rushed back from a conference where a new experimental drug was presented for VOD. This drug is NOT YET approved for use in the US - it is used in Europe with much success.
We signed a paper yesterday so she could pull some strings, push the regulators, and hopefully get this drug in about five days. This was good news.
But the drug only really helps prevent NEW damage - not heal existing damage. So another of Jaymun's doctors hunted down a doctor from out west who has successfuly treated VOD.
This doctor recommended using a combination of Vitamin E and Green Tea - he said this has worked well for his patients.
Today we started the Vitamin E. If Jaymun's throat and chest clear up - we can feed green tea from an eyedropper.
My jaw dropped to the floor when about 20 minutes after the doc left, some parents of a patient upstairs dropped in to say hi. They brought us a care package that included some things from Starbucks.
You guessed it. Six packages of Green Tea!!! I told Jennifer that proves it. Jaymun and I are gonna go to Starbucks together when this is all done! (Sorry Roger!)
And then I came downstairs this afternoon and Jaymun's doctors were both standing by his room grinning. They got the new drug TODAY already - instead of four days from now.
So now I have shivers running up and down my spine. We have no idea the power unleashed when God works. Watch out - these kinds of surprises are normal for God.
But you know, before you get too complacent, think about this. All last night I watched Jaymun's stats slowly improve. And I remembered a story from the Old Testament. It was about Moses standing on a hill praying for his people as they were fighting a battle
against a treacherous tribe of bandits. Moses was holding his arms up in the air while he prayed. And they were driving the bandits back. But then Moses got tired. And he lowered his arms. Then the bandits made a comeback.
So Moses raised his arms again and began to pray. Sure enough - the bandits fell back. He couldn't afford to let his arms drop when the fight was that crucial.
Now... For me, the beautiful picture here is not Moses on a hill with arms raised.
It is his two friends standing with him on the hill...
...each holding up one of his arms,
...so Moses could pray through - until God helped drive away EVERY LAST BANDIT.
Today I say that God rules and the "liver bandits" are on the run.
So keep praying.
