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.

Gato!

Kristi's kitty, code named Maddy, needs a temporary home. Kristi can't afford to be exposed to cat-scratch fever, or toxoplasma parasites, which have been shown to alter human birth gender (not that it matters much now). Maddy is 10 years old. She likes to sleep and potty in the box. She needs a nice, mellow home till sometime this fall, when I can take her. She doesn't like other pets. Like her mother, she is an only child. You can plainly see that she's cute, but what you can't tell is that she is very low maintenance. I give her some love once a day and she's well happy. As far as we know, she won't give you cat scratch fever or toxoplasma. We are just trying to minimize risk for K.


Here she is posing from both sides of her favorite windowsill sleepy time spot.

Latest Numbers

Here's the latest blood work. The platelet transfusions are quite obvious.


Her average temperature is trending upward. I've gotten a little excited about the few 37.9's in the last day or so. The orange line is a fourth order regression. Recall, that 37 celsius is normal, 38 degrees is a fever, 38.8 is 102 fahrenheit.

My Plan

We know now that Kp needs a transplant, for sure. We also know that it is a big deal. I believe her chances will only be improved by making sure she is in TOP shape for it by "training" in the time between her release from here and the transplant (several months). If someone wants a chance to offer a unique donation, here's what I think we need:

1. A nutritionist to optimize her diet.
2. A personal trainer to bring her into peak physical condition.
3. A life coach to keep her focused on the goal and moving forward.

My aim is work with her closely over the next few months to make sure she reaches the goals of "perfect" health. However, I am really not trained in any of the previously mentioned professions. So I want to assemble the Kristi Super Health Team. Basically, I want to have her ready to run the Iron Man before she goes in.

Ton Ton

Kristi's BFF, Tonya, just dropped out of the sky. How exciting! They are sisters from different misters. Ton lives in Seattle. She's a social worker by day, Super Grrl by night.

Bone Marrow Biopsy

Kp just had her "day 14" bone marrow biopsy. This is her second one so far. She has another in five days. Right now they are looking to see if the chemo worked. The next one will help verify that. Later there will be more biopsies to check for remission. The process took about an hour. Her doctor (seen to the right) did the procedure. There were two separate extractions. The first extracted liquid bone marrow, the second took a core sample. The core sample is important at this point; it will allow the pathologist to measure the cellular density. They gave her a shot of morphine to deal with the pain. She felt nothing after the lidocaine. However, now she's very sleepy.

I asked Dr. Aaron to hold the needle and look menacing. I think he did a great job.

HLA Histocompatibility

HLA Class I Antigens				HLA Class II Antigens
A	B	Bw	Cw	DRB1	DRB3,4,5	DQB1	DPB1
02	1517			0701BPTM
69	5001			1601

Code Translation: BPTM=0701/0703/0705/0707/0709/0710N

Kristi's HLA typing was done using "molecular methods", meaning the typing considered the geneteic profile rather than a coarser anti-body reaction test. HLA classes A,B, and DRB1 have 250, 500, and 300 allels respectively. That's 37 Million possible combinations, the bone marrow registery has around 6 Million doners registered.

The Heavy

Kristi met with her Bone Marrow Transplant Teem. I wasn't available, it was during my class. Fortunately, we had it recorded. The SCI mic is terrific. I'll summarize the details here, but the recording is packed with information, though it's 30 minutes long. Clearly the team-lead has done this before. It's a well polished presentation. First there are numbers, statistics. They were provided by the team-lead, but I haven't found a reference for them (yet). Without a transplant, the docs put her survival chances very low. With a transplant, her survival rate jumps to 50-60%. Transplants are delicate procedures. Once she enters the hospital, she will have five days of intense chemo and full-body radiation therapy. The aim is to completely eliminate any of her own marrow. Transplant day is called "Day 0", and the stem cells are delivered intravenously. For several weeks after, she will be completely defenseless, while the stem cells take hold and replenish her marrow. There will be a period after she is discharged that she will need 24-7 care, likely to be about a month. The period of about three months to a year after the transplant will involve anti-rejection treatment. The probability of rejection is fairly significant, around 30%. There are contingencies for everything. If a donor isn't located (she currently only has 4 potential matches worldwide), (double) umbilical cord stem cells are the next option. They won't have the strong potential for rejection, but they also won't provide much of the essential rejection of cancerous myelocytes. From there, the options are even more limited.

April Snow brings May ???

This is the view from Kristi's room today. Isn't it spring? I was bringing my skateboards back to SLC, but I might have to grab my snowboard too. Kristi's morning update:

"Schedule for today: more platelets.
I'm going to eat some breakfast, and then try to get on my bike and shower in before I get stuck to the pole.

Younis is in town, Aaron and he might come visiting today, and then Liz and I are doing movie night tonight!"

The Live Report at 10

Kristi had a nice day... sort of. She made it all day without anti-nausea medication. Amazing, I know. The representative person left behind an information brochure on bone marrow transplants. I'll report on that when I see it. It's information overload at this point. For six months after the transplant she'll need constant support. For instance, she won't be able to clean her house. I'll probably end up with sweet kitten, Madonna, Maddy, Mad Dog. Thankfully, her parent's are retired and able to take care of her. Of course, I'll be backing her up too. And of course, there are fascinating financial complexities. Also a topic for future posts. It was rough not being there for her with all of this heavy news. Only one more day to go.

Stormy Weather

Kristi says that it's all sideways rain in Salt Lake today. Therefore, she sleeps. She met with a representative of the Transplant Team today. We now have a scheduled meeting for Friday with the whole team.

Stormy weather deserves a stormy picture. Here's another seattle pic with Tonya.

Kp's first blog entry!

"So, let me report to you my day so far:

Woke up and ate a tomatoe, sausage, mushroom, and cheese omelet with hashbrowns, applesauce, a bowl of rice crispies and 2 orange juices. Oh, and I drank the Ensure cause it was chocolate. I then laid around until rounds, which was the same ol same old. My white blood count is still hovering around the same place, but Aaron said that's about where they expect it to be. Next. I got on my bike for a 1/2 hour, and got a little sweaty. It was fun, but trainers are always much more boring than the real thing. Then I showered, and got my Hickman dressing changed along with all of the caps of my Hickman. Then we all went outside and sat in the sun for a couple of hours. I've started to read the statistics book, but Miriah, Austin, Roni and Chelsea all came by in intervals distracting me from the fascinating first chapter of the stats book. Austin brought by a "survivorship notebook" from Lance Armstrong's Live Strong Foundation, it's really huge and has places to write down pretty much what you've already been doing. I think there are some other survivor type resources, but I haven't spent a lot of time with it yet.

Oo, one funny thing, when I got back from outside, I went to use the bathroom, and there were 2 hats in the toilet! Like no way down, if you know what I mean, I had to call the nurse, but Alex (the early morning Doctor resident) came in to check on me and I asked him about it and all he could say was that he didn't order it. I then had the nurse come in, and she told me they were trying to take samples, except that all that's come back negative so they really didn't need a sample. My problem? I just wanted to pee and didn't know what to do with the toilet paper. Well that question got the 2nd hat removed, and so for now it looks like I don't have to save my duty too. Yeah!

Now, I think I might have a quick snack of Checks Mix, and then get ITK compiled on this machine.

Hope that's a good update!"

...Actually, I think she meant for me to summarize. But why? It's classic Kp.

Ride!

Kristi's hamster wheel. Notice the tremendous wake generated behind her.











Is that Michael Jackson's mug-shot?

Is it the 4^th floor Ninja?

No! It is Platypus Woman.

Tuesday. Again?

Well, I am sitting in the Phoenix airport. Thank cthulu for municipal wireless. I left the hospital at 5am this morning. No need for an alarm, Kristi's morning ritual worked well enough. She gets vitals, blood drawn, and antibiotics at that horrible hour. They need to do the blood work early so that the results are available when the docs do their rounds. It was hard to leave her, but I only know one way to pay the bills. I will be back on Thursday. We never saw the Transplant Team yesterday. If they show up while I am gone, Kristi promised to put me on the speaker phone. From what we know already, it sounds like a very serious ordeal.

This image is from a recent trip to Seattle. I thought it would be nice to see what Kristi looks like in the outside world. Sigh, she sure looks happy.

Cell Biology.

The Howard Hughs Medical Institute has some sweet animations of the Leukocytes and their inner works. This animation won awards at Siggraph. The "Super Speed" version is the highest resolution. The "speed" refers to your Internet connection.

Looking forward...

Here's a recap of what's going on with Kristi.

1. She's in the Huntsman Cancer Hospital. (her address is at the bottom of that link)
2. She has Acute Myeloid Leukemia. (but we don't know why)
3. She just finished a round of chemotherapy.
4. Today is day 10 of treatment, but she's actually been here for 14.
5. On Treatment-day 14 (Friday), she will have another bone marrow biopsy. They are looking for less than five percent "blasts" and less than 20% cellular density.
6. If the biopsy isn't "good", they will do another round of chemotherapy, a 5 day run.
7. She has complex cytogenetics.
8. We know that she will (most likely) need a bone marrow transplant.
9. She's (finally) working again. On research even.
10. Her physical therapy will now involve her very own bike!
11. She should be able to leave the 4^th floor on day 28.

Here's the bike setup.

Perkey

After all the sleep yesterday, Kristi is feeling great this morning. She's skipping the Ativan after breakfast, we have our fingers crossed. We've had music on all morning, it's nice. The bone marrow transplant teem is coming up to visit today. I have no idea what to expect, but I imagine it will be informative. Also, her histocompatibility profile is back, I should be able to post that later.

Kristi asked me to note that she gets terrible cell phone reception in this room. She checks her messages very rarely. Text messaging works well though! ... so do blog comments ;)

To your right, Kristi models the latest in Victoria Secret sleepware, courtesy of Anastasia.

Sunday.

Today went well, but it's hard to get into trouble when you sleep all day. She's barfed a few times in the last few days. Every meal comes with an Ativan now. It keeps the food down, but makes you sleepy too. Well, she didn't sleep all day. She did another half-hour on the bike-thingy. Sadly, the octopus is still a companion. Kristi needs constant antibiotics to stay healthy. Every four hours she gets an hour long drip. Most of the day is unchained though.

I met a patient in the hall today. He's from Blackfoot Idaho, about 20 minutes away from where I grew up. He has AML too and had a interesting story. He's back here after a two year remission. He had chemo only the first time, so this means that he's in line for a transplant now. We will probably see him again when Kp goes in. He found out that he had AML when he saw the dentist. He was having tooth pain. When they pulled a molar, his gums swelled up bad. They suggested a blood test... He knew he was having a relapse when he bit into a steak and felt that same pain again. He says he got it from his work as a roofer dealing with some heavy industrial solvents like Benzene. He is currently in lawsuits with several roofing companies.

In other news, Kristi's toy garden continues to grow....

Vitals.

Kristi's blood work is looking good. She's still loosing weight, now at the weight she was when she was admitted. Although it seems to work, she doesn't recommend the leukemia diet to anyone, for any reason.


Her fever curve is great so far. She hasn't had a fever since the first day.


Just for fun, I did a correction of the blood work numbers to take into account the change in bodymass due to fluids. The idea is that additional fluids will dilute the quantities and percentages measured in the CBC. The dotted curves show the corrected numbers. This fixes the increasing hematocrit numbers in the raw CBC. With the correction, they are flat or slightly decreasing since the last transfusion.


I am creating these plots in Excel. Yawn, could be fancyier about it, but I am sort of lazy.

Unprecedented

This is Kristi unattached! It's been 12 days since she was unencumbered. She's on the party line with Miriah, Liz, and Roni. They let it run to the very last drop, but now it's gone. The octopus looks lonely all the way across the room. He is not missed.

Below is the final moments attached to the chemo. Mom, Dad, and the Octopus in the sun.

Werk it

The physical trainer guy stopped by today. He talked Kristi into venturing across the hall. The physical therapy room is pretty clinical. The only thing of interest to Kp was the bike-like thing. It's OK, but no real substitute for what she loves, the bike. Her mom and dad are now in the process of selecting a trainer stand. We'll haul her bike in, if she can't go out.

We are down to T-minus two hours till the chemo is done. Seems like forever away...

Kristi likes...

Cartoons, huge bowls of cereal, and puppies. Over breakfast she strong armed me into agreeing to a puppy. I really want a Jack Russel Terrier, she wants a herder like the Australian Cattle Dog. We'll probably just end up at the pound anyway. Kristi also likes Ativan. In general, this drug is used for panic attacks and anxiety. I have heard of it... In Oncology, it is used to manage nausea. They believe that it helps calm the part of the brain stem that anticipates the nausea. The nurse said that it's 90% mental. At this moment, Kp is getting her first transfusion of platelets. A very interesting blood product, she's getting A+ platelets. It is very rare for recipients to have reactions to platelets, so even though she's A-, the positive Rh shouldn't affect her. The platelets look like unfiltered apple cider.

Pajamamama.

Here Kristi models her new DKNY pajamas. It's sleepy time! Sleepwear is important when you have the rare opportunity to spend time lounging. The garmet should be a light cotton, breathable yet sturdy. Comfortable enough to sleep in, fashionable enough to wear to breakfast, this beauty sports a feminine peanch color (peach+pink=peanch) with an Asian flower arrangement. The button-up front allows convenient access to bionic-squid-like appendages. Perfect for the impromptu spring-time vacation.

Well.

Well? Well. We are all anxious to see the chemo done. Should be tomorrow around 4:00pm (Saturday). I know it doesn't matter much, but it feels like an important landmark in her treatment. I am going to get her something extra special tomorrow. Today has been good, except for the part where she barfed, that was gross. It was inevitable. She passed on the anti-nausia pill after lunch, and bam, blahhhh. She had some Sprite and chips, and everything was fine again.

This is Chester the chest to your right. He was hanging out in the hall today. At first I thought he might be a patient education tool. However, if you click on the image you will see his back side. Looks like he might be for training purposes too. Anyway, he is clearly the Hickman IV guy. I am not sure what I have learned from him, but there is just something about clinical models that brightens up your day.

Round 7

Today is Kristi's final day of chemo. At some point in the near future, she will be permitted to run around without the octopus!! She's doing excellent today. Her hematocrit actually went up, she's at 30.9 right now. The reason for this isn't because she's making any new red blood cells. Rather, she's finally shedding some of the extra fluid that she's been packing around. She's now down to 143lbs. She has fluctuated around 30lbs in the last week and a half. She also packed in a big breakfast, including eggs, hash browns, and cereal. Although the last chemo drip goes up today, she still has a week of increasing effects. She reports that her skin is feeling rough. Last night she had a bit of a bloody nose. Although I freaked out, it stopped right away. Outwardly, chemo affects the epithelial cells, such as skin, hair, and mucus membranes.

The White Coats flew through here today. She's a lower priority for all of the staff because she's doing very well and no trouble to take care of. However, we had two lectures on neutropenia, and the neutropenic diet. She's actually been neutropenic the whole time she's been here, since very few of her white blood cells were any use.

Oh yes, many thanks to Mike Steffen, who was the first to deliver a mixed CD "as requested". That deserves a "solidarity toy", which I will deliver the very next chance I get.