Mondays aint so bad.

Today is K's first full day on the outside. It feels like she just got out of prison. We have already done some shopping, banking, pinball, librarying, etc... Last night was her first uninterrupted sleeping session in over a month. I can really tell the difference. Right now we are waiting for a "home health service nurse" to stop by. Kristi keeps the Hickman till well after the transplant. She was trained to maintain it at the hospital, but she's still getting someone to do it for her (at least for now). We had a seriously scary moment the other day. I came in from the patio with my sunglasses on, and tripped over her lines!! It gave both of us a start. Luckily it didn't tug on the Hickman. Though it could have potentially yanked it out! We we were freaking out a bit. The nurse said that it happens. Sometimes old people just pull them out. "Direct pressure" is all that's needed.

Oooo, goody. We are going shopping for cruzer bikes!

Remarkable

Sometimes the littlest things seem remarkable.

Kristi's home!

I have a nice picture of her, but her network is a notwork. There it is! Thanks XMission! She's home and already restless. We are done with the first phase, but there is a lot of work to do before she goes back for the transplant.

Anxiously Waiting

We are hopeful that Kristi will be able to go home today. We are waiting for rounds. She's still a little nauseous, and she has a sore leg (we walked a lot yesterday). Kristi's white blood cell count is now within normal range, 11.8*10³/uL. Notice that when she arrived, her WBC was nearly five times higher than normal. The recovery of her platelet number is all her, she hasn't received platelets in several days. The recovery of WBC was accelerated by the Neupogen injections (at several thousand dollars a pop). Her red blood cell count went up today thanks to two units of A- that she got last night (they wanted to be sure she was strong when she went home).

So rounds went well. They are going to do an ultrasound on her leg just to be sure. Although the clot is very superficial, they are checking it out anyway. After that, we are going to start the checkout procedure!

Kp just had her ultrasound. She has a small clot in a superficial vein. This shouldn't be a problem. It's really just a bruise. She'll get a follow up to be sure. She's working through the exit paperwork now.

Breaking News

We just had rounds. That's not the news... The doc says that Kristi is ready to go home tomorrow. Seriously, tomorrow. They are taking her off IV drips. She'll have a pill for a while instead. She hasn't had a fever in nearly two days and the cough is fading away. This all means that we are scrambling to get things ready for her homecoming.

A Newed Day

Sorry for the lack of posts yesterday. I got a nice sunburn at Solidarity day. It really knocked me out! I am sooo proud of everyone who showed up to support Kristi. This was an important symbolic gesture. It says to Kristi and everyone else who goes through this that they are not alone. These are shots by Liz. Here are some by Mike. Chanel 2 News was there for the event. They said that the segment will most likely run toward the end of May. In all, we shaved 13 heads yesterday: Dave, Austin, Roni, Thiago, Joel, Nate, Jeremy, Mcay, Geoff, Steve, Scott, David, and Mike. Sadly, none of the ladys ponied-up a pony tail. We'll give them a pass since we did have one lady get her head shaved.

There is a rumor around the 4^th floor that Kristi may get to go home as soon as Monday! Her white blood cell count went up by a factor of 3.3 since yesterday. Her platelet count has stabilized (didn't go down for once), and there is a slight improvement in her Hematocrit. The plan now is to ween her off the anti-biotics and get her ready for life on the outside.

The New's

Today's blood work is showing the first inklings of bone marrow recovery. Her white blood count has doubled since yesterday. Though, she's a few orders of magnitude away from normal. You can just see on the graph that the curve is bending upward now.


The fever curve shows quite a few fever spikes. On average, she has 1.5/day.

Don't Forget: Today is Solidarity Day. We are getting together at 2:00pm in front of MEB. CuppyCakes will be provided! If anyone is planning to remotely shave for Solidarity Day, be sure to get a before, middle, and after shot, and send them to us!

Kp's CT scan shows that she has gas. A CT scan is considered the "long way around" to finding that out. Needless to say, we are all quite "relieved" now.

The New Fever

Since Kristi had a "new" fever yesterday, she got yet another anti-thing added to the two anti-biotics that she currently gets. This one is anti-fungal. She reports that it has hallucinogenic side effects. Apparently reading Cosmo is more um... exciting now. Unfortunately, she has a stomach ache. The protocol for this, in her condition, is an MRI with contrast. She is currently waiting for her turn. I have asked her to get the data. Wouldn't it be neat! The image here is a mouse abdomen MRI taken in a 7-Tesla scanner at Duke university. ...Actually it sounds like she is getting a CT scan with contrast. No problem, we can render that too! Kristi is my little science project.

Reporting from `burque

There isn't much to report on K today. Yesterday, she got a much needed reprieve from fevers. They are back today, 103F at 3pm. She slept much of the afternoon. She did get her code compiled on a mac this morning. Congrats on that. It can be a real pain, especially when any of the code depends on stuff I wrote. Though teem compiles effortlessly ;) We are starting a new project on uncertainty. We are both huge statistics fans.

The new regimen

Kristi has already started the HGH. She is sooo Hollywood now. She reports some "bone pain" due to the hormones, but of course, they have drugs for that. She's also getting platelets again. These only seem to last two or three days.

Correction, she didn't get HGH, or even a hormone for that matter. She got a cytokine called Neupogen. This protien binds to Leukocyte blasts and stimulates division and differentiation.

Solidarity. Nuf Said

Thanks to Nathang for the poster!

Directions to Solidarity day. What's your hair worth? 2:00pm at the Merril Engineering Building front lawn. There are parking meters at the south end of the parking lot to the left of the destination (on the map). The "front lawn" is the strip of grass south of the parking lot and north of the big white-top building (MEB).


There are a few luxurious flowing hairs that I want to see out on the lawn this friday! Wigs for Kids will be so thankful for these fine manes.

Good News!

Kristi's bone marrow results are back. She passes the test! The core sample showed that she has less than 20% cellular density and less than 5% blasts (proto-leukocytes). This means the chemo did its job, and she gets out in 7-10 days. They will be kick starting her bone marrow with hormones soon. She will have several follow-up "consolidation" chemo treatments to insure remission. These should be "in-and-out" deals. Next stop: transplant training camp. Hurray!!!!

Solidarity Day is Coming Soon!

... to a barber near you. Kristi announced that she will be shaving her head today, as will I. We are moments away even. Lunch, then a hair cut. I'll have the play by play right here. Solidarity day will be this Friday. It's a spectacle and fund raiser. I am thinking the front lawn of MEB.

ARGH! No clippers, the 4^th floor's are broken. Who's got clippers?

We are currently negotiating a deal with Locks of Love... Right now it is a bidding war with Wigs for Kids. WFK is taking the lead, since Locks of Love's web site isn't responding. Yes, yes. WFK is way out in front. Just mail in the pony-tail. Saddly, Kristi's hair was too deeply layered to work :( Did I mention that she had a haircut the day before she got checked in here?


Well, there it is. We look like characters (movie stars) from a dystopian future.

Monday monday

It was a long, hot night for Kristi. She spent a good part of Sunday over 101 degrees. She's looking good now. The fevers really knock her out. To make up for hardly eating all day yesterday, she had a hearty breakfast today.

Fever Chills

Kristi's fever curve is starting to go crazy. She's had a fever three times in the last twenty-four hours. Fevers initiate a protocol that involves immediate blood cultures from two sites on her body (meaning needles), urine culture, new anti-biotics, and a quick dose of Tylenol. She only has vitals taken every four hours, even with a fever, so the curve is fairly course in my opinion. However, Kristi strongly disagrees that her temperature should be taken more often.

Right now Kristi's temperature is spiking roughly two to three times a day. The last spike (about an hour ago) was 102.4F.


Here's a shot of Kp sporting her "Chills Hat" (left), and her "Fever Blush" (right). Hand crocheted hat by Joel.