It is Friday again. Joe has now been in the hospital for almost five weeks. Each day, Joe feels just a little bit better. But Joe is still pretty much transfusion dependent. The doctors lowered Joe's platelet trigger from 50 to 30 since he doesn't seem to be having any more problems with bleeding. Still, today Joe will be receiving his 36th platelet transfusion since the day he was admitted. Platelet transfusions always means lots of Benadryl, which means lots of drowsiness.
On Tuesday we learned that after FIVE CMV negative results, Joe was once again CMV positive. We were hopeful that the CMV would go back to being negative soon. Joe was getting Gancyclovir and a half dose of Foscarnet for much of the time he was negative. Then the Gancyclovir was taken away, and Joe was kept on the half dose of Foscarnet for maintenance. Now, The Gancyclovir has been started once again. That may have done the trick. Just in case Monday's draw was a fluke, another draw was taken on Tuesday. It came back negative. Staying Negative!!!!!!
Yesterday Joe had another CT scan of his chest. Joe or one of his many radiology pals should be explaining it, not me. But as I understand it, the scan looked a little bit better this time. It's still not very pretty though. The debate this week was whether or not to perform a VATS (video-assisted thorocoscopic surgery) procedure on Joe. We were all praying that this would not be necessary because it is invasive, and obviously not very fun at all! The concern was that the procedure might do more harm than good. The doctors who would be performing the surgery were mostly all leaning towards not doing it, since Joe is showing clinical improvement each day. After yesterday, the consensus remains to wait. Joe also spoke with one of the doctors in Cleveland. That doctor said that if possible, it would be best to wait so that Joe would be well enough to make his appointment on Friday and get the ball rolling over in Cleveland. An additional concern in regards to the VATS is that the area that would be biopsied seems to have shifted to an area that is not ideal. So if some type of biopsy is needed, VATS probably wouldn't be the procedure of choice anymore.
Joe is no longer requiring extra oxygen. So no more nasal cannula or pet oxygen tank, even while sleeping (for four nights now!). That is a praise.
This week, Joe and I have had the pleasure of meeting several families on our floor. It is a funny feeling. It has been so wonderful to meet others and to be able to encourage one another. Then we wish that the meetings weren't under such circumstances. And then we realize that if we all hadn't ended up on the 7th Floor of West Penn, we probably never would have met, or become friends. It has been really wonderful to see how going through something so difficult makes people and families so strong. It is additional encouragement for each new day. We meet people who have been battling longer than Joe and feel inspired by their determination to continue fighting. We meet people who are just beginning their battles, and we are amazed by how far we have come in the past year. Our prayer each day is that we can continue to encourage others as we have been encouraged.
I feel like I'm being so long-winded today. I just want to end with lyrics to a song. My friend Caryn passed them along to us. Joe and I were excited to discover that we actually own the song. It is our current theme song...
Casting Crowns: Praise You in this Storm
I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining
As the thunder rolls
I barely hear
You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away
Chorus: I'll praise You in this storm
And I will lift my hands
For you are who you are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise you in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
Chorus
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
Repeat
Chorus
~~~~~~~
Thank you April & Paul for the card. We appreciate your continuous support!
Thank you Auntie & Uncle Liang for the really yummy cake. It is one of our favorite kinds!
Thank you Pastor Jim for your visit. I know that Joe really cherished that time with you.
Thank you Mike & Julia for the card and photo. Your support means so much to us.
Thank you Gordon & Julie for stopping by and bringing food. It is always great to see your smiling faces.
2 comments:
I can say AMEN to that song...songs that were sung before this all began have taken on a brand new melody. I believe they are even sweeter to God now though. Oh the labs...if they are too low the docs say it is a mistake, if they are too high and we ask if it a mistake, they say no. I held my breath when I read about the positive CMV, and let it whoosh out for the negative:) :) :) Tonigh I was doing Livi's laundry with three other moms of leukemia kids...it is so good to be able to know they know what you are going through. The 13 yr old in the room next to livi's always wants him mom to check to see if livi is okay when he hears her cry. These children are forever having their lives changed and outlooks changed. I wonder what they will grow up to be like? And won't Joe be the most compassionate doctor when this is all through? Keeping the faith with you both.
heya, so i was reminded of joe's plight when we covered habakkuk last week. rough translation - really really bad stuff was happening and hab was like "where are you God?!" God replies, "um, if you thought this was bad, it's actually going to get 100x worse!" hab says "but why?! why are you letting this happen?!" God says "Don't worry, my timing is right. There's a reason for this and I am God." Basically, if things were to end now, it would be a tragedy. Now is like ch. 4 and it's discouraging, cuz we can't see ch. 100. But God already knows what ch 100 holds, has a plan (to grow and to prosper) you and Joe, and it promises to be a good one. So I just wanted to encourage you both to hang in there, to know that this craziness (prolonged suffering) will eventually one day make sense and that good things will come of it. God has a plan for Joe. Even though it includes this current insanity, chapter 100 will be pretty dang sweet. Hang in there! -JML
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