Wednesday, February 3, 2010


Feb. 3, 2010


Just got home from the hospital, and um...what a difference a day makes.

Mark's current update:
He's off the respirator, off of all pain and amnesia meds, off of dialysis, off of heart and blood pressure meds, and he's speaking again, WITH his own voice. He has no memory of the last three weeks. Oh and? His white blood cell count is in the low 30's and keeps moving downward. Quite possibly my happiest day of 2010...yet...!!! He's kicking cancers ass y'all!!!!!

Best moment of today: walking into his room, seeing the big smile on his face, and then walking to his bed and hearing him say in his own voice..."I love you Leslie...I've been waiting all day long to say that!!"

I had no idea they were taking him off of the respirator today, no idea they were stopping ALL of his goofball meds today...I would have been there had I known...but DAMN what a great surprise.

The occupational therapists even had him up and out of the bed today, practicing sitting and standing and exercising his legs.

I am overwhelmed with total happiness and love, and I am at a loss for words right for now, I'm going to leave it as it is...

Good night to you all. As Dino says to me every night we leave the hospital, "tomorrow is another sunrise"...

Tomorrow then.


Good Stuff, Good Stuff, Good Stuff!!!

February 3, 2010

***(1 month ago today, at 3am, Mark and I were driving to the Emergency Room at Illinois Masonic Hospital thinking he had a torn muscle in his back. I can't believe how much has happened in such a tiny span of time)***

While a lot has happened since Sunday, things are still moving slowly, though what's fantastic is that they continue to move in a positive direction.

Mark has been so very aware and communicating and interacting with everyone. He's still on Versed (the goofball medication that makes you see things and forget pretty much everything), so while he's communicating, it's getting increasingly more frustrating since he has little retention. As his body gets better, and his lungs become even stronger, he WANTS to communicate more, but they've had him on a pretty steady stream of the goofballs so it's been making things a little difficult. I had a chat with his doctor about why he's still on the Versed, (which btw has nothing to do with pain killing and ONLY makes you forget stuff and makes it so you're not "combative" with hospital staff). Sigh. His restraints have been off of his wrists for a couple of days now, and he hasn't tried to pull anything out again. From my perspective, he's okay, and isn't fighting anymore and I mentioned this to the doc, to see if we could start trying to ween him off a little. Since our conversation he's been titrated down from 5mgs to 3mgs, to (just now I received a text from Dino, who is at the hospital with Mark now), nothing. The Versed has been turned off!!! This is AWESOME news!! Everyone cross your fingers that as he becomes more aware and the Versed fog starts to clear, that he doesn't start fighting with the staff again. I'm pretty positive he won't.

SO...we figured out why his heart rate was spiking so incredibly high and then falling so incredibly low so often. Mark had fluid around his heart, which is common with his type of cancer. Yesterday around 3pm or so, cardiology took him in for a pericardiocentesis, which is a procedure where they stick a needle into the membrane around his heart that has the fluid in it, and they remove it. They removed about half of a liter of fluid, which they've sent to be tested to see how many cancer cells are present in it. When he got back to the room, his vitals were so steady and fantastic!! Mid to upper 90's for his pulse ox, and around 100-105 for his heart rate. He's totally off of the blood pressure medication they had him on and he's been maintaining a healthy range ever since. They've taken him off of the constant dialysis and put him on treatment dialysis, where they administer it for three hours and then he's off of it for three hours, thus helping to basically kickstart his kidneys into doing their job again.

His vent settings are pretty awesome!! He's still bouncing between a 9 and a 10 peep, but they've moved him down to now 50% oxygen...(HAPPY DANCE!!!), he's got to be at a 5 peep and 40% or less oxygen for them to consider taking him off of the vent. He's on his way.

Last night he was sitting up in bed when I got there and was smiling and joking around. He's of of "droplet protection" and you don't need to gown up and glove up anymore to be in his room; this also means that his door can stay open. All night long last night, when nurses would walk by his room, they'd pass by with big happy smiles and raised eyebrows instead of sad faces and pitying stares. It was great! One nurse saw me in the hallway and said "Leslie, he's looking great!! I'm so happy for you guys! He'll be out of here in no time, I bet they move him to a regular room soon!" Simple words, but it made my night.

We've been trying to work with Mark on him writing down for us what he wants and what he's saying. It hasn't really been working well because of the Versed. He knows he wants to tell us something, but can't speak it, so when we put the dry erase board in his hands with the marker, he gets this look of intense concentration and is trying so damn hard to write something to us, but not a lot comes out yet. Jimmy did get him to write his name though, and that pretty much kicked ass. (See photo below).

The best news??? HIS WHITE CELL COUNT IS FINALLY MOVING IN THE DIRECTION WE WANT IT TO!!! Dr. Odenike, (his superhero oncologist), and her Fellow, Dr. Ericka (can't remember her last name), decided to stop giving him his Campath in his stomach and have been giving it in only his shoulder, and this appears to be the trick!! His white count was spiking really high for a bit last week, but then all of a sudden we started to see a huge drop, which is AWESOME!!! (See the chart below).

So everyone, keep your fingers crossed, and prayers coming, and positive vibes sending for this upswing in Mark's condition. I'm so excited I can't even explain. I feel like I want to run out into a field and do spins. :)

Here are some photos I put together for all of you. The first is Mark's white count chart I threw together, second is a photo and bio for Dr. Odenike, third is a triptych comparison of his chest films...last is the whiteboard that he wrote his name on.