Update Redundancy

Okay, so i typed the previous blog and thought that i lost it, but didn't realize blogspot autosaves, so i found it, and thus, posted it, but only after i wrote this one, and since i don't feel like just deleting, I give thee... reiterations.

Bottom line, the second transplant worked. My white count was a 5.7 today(4-11 normal), my hemoglobin seems to be rising on its own (will have to wait a bit to tell for sure) and my platelets are still down, but are usually the las thing to rebound, so i'm pretty stoked right now. There is talk of me even getting out of the hospital before the weekend. Will believe it when i see it. I keep saying this to people but its still so hard to believe that i haven't been outside of this this room (other than being wheeled to xray or ct) since june 23rd. I can't even describe how much of a mind trip that is. I have to admit that ever since they told me that i might be discharged sometime this week, time has seemed to stop. I had a pretty interesting night last night with them taking me off of some of the medications i'm on, as well as my pca (patient controlled analgesic) which i could push ever 20 minutes if i had any pain issues. evidently, i used that thing more than i thought i had because now that my body is able to fix some of the things going on, the symptoms are definitely "brighter" than before. Hopefully some of these ailments will go away soon. Still have at least two more months of outpatient therapy to endure here in Houston, but I'll take it. Steph is coming back up tomorrow in hopes that I'll be released this week. We have an apt. set up not too far from the hospital and I'm looking forward to a regular bed. Will keep you posted weekly... maybe. Oh, by the way, thanks mom, for posting a video of my kids eating ice cream and my son, Jack, asking if he could take his ice cream to the doctor to share with daddy to make him better. My heart didn't disintegrate or anything. Love you. Take care.

"Pain don't hur't" Patrick Swayze, Roadhouse

Sorry for the quote. Those kind of written lines just had to be said back in the 80's. My other favorite is "I ain't got time to bleed." Jessie Ventura, Predator. Love it. Well, in the 00's, at least for me, I always have time to bleed, and pain hurts. Very much many. Since the beginning of July i have had this addition thing on my I.V. pole called a PCA (patient controlled analgesia), which is basically a button that i can push whenever I feel like i need pain medication. then a little bit of hyrdomorphine would come out of it and go through my line and i could feel it take affect in about 45 seconds. I could push this button every 20 minutes if i wished. Not going to lie. Some days i treated that thing like an XBox controller. Most days i really didn't have to push it that much.

Well, I found out yesterday, I guess, that my transplant is starting to work, and that the stem-cells are starting to graft to my bones and make their own white cells, which are up to 4.5( lower end of being considered normal) so everyone is super pumped and making plans to put me on oral meds and taking me off of i.v. meds and stuff. They would like to get me out of here and into local housing as soon as Thursday. We'll see. Anyway, setting a date for me isn't one of the greatest of things because it seems as though the plan usually falls through. so for now, please know that i am maybe getting out this week, maybe next week. right now i'm sitting here in a little bit of agony because they took away my pca! maybe i used that thing more that i though, but after 12 hours without it, i realized that i was defintely hurting, and defnitely not being smart about it. finally asked for some pain meds and was immediately better.

WHITE BLOOD CELL DONORS... THANK YOU!

I just wanted to take a second and thank everyone for donating AND everyone that tried or offered to donate their white blood cells for me. I have been in and out of the hospital for the last 18 months and the countless blood draws and biopsies and central lines and other procedures have made me pretty acclimated to this type of crap, so i'm sorry that i have lost a bit of my empathy towards something like a white cell transfusion. I also have basically had no sort of daily responsibility put upon me for the last few months other than "be a patient", so for you guys to actually take the time and jump through the hoops and sacrifice your free time to do this is huge.

I have kept a list of donors and the irony of the situation is that just about everyone of my relatives and close friends that came to visit for the primary purpose of donating was refused by the clinic for one reason or another. Again, thank you for time and I'm so sorry that it didn't work out. I was initially told by the clinic that only about 20% of people that end up screening are denied donor status, but for the 8 people that drove in from Arkansas and Tennessee and Mississippi, there were 8 different reasons given for why they were unable to donate! Adversely, I have had 9 white blood cell transfusions so far, and except for one of those donors, the rest are native houstonians that I had/have never even met in person.

I want to apologize for the whole manner in which this process was thrown together. This was an unforeseen step in this whole process that was basically thrust upon steph to take care of with little instruction, and until she actually went to donate, she was in the blind as much as the next person. As far as future donations are concerned, that's always a little difficult to hash out as well, as i just had the doctors come by today and instructed me to "keep things tentative" with any future donors that i might have lined up(which, if you have been involved in this process at all, you know is a practice in futility). So again, I'm so sorry that the information seems wishy washy at times, but please know that you genuinely restore my faith in the "doers" out there that care and love enough to make an effort or attempt, rather than fall in love with the notion of something or think that it would be a good idea to help out but then take no action because of time or inconvenience. I am the guiltiest of all when it comes to this. Thank you so much, and take care.

DID IT WORK?

Hello, all. Still playing the waiting game over here. Technically, we are 10 days into Transplant 2.0, and the doctors advised not to expect any white cell production by at least Day 14, so it's just a wait-and-see situation here. I have been getting white cells transfusions, at first every day after the transplant and then having to back off a little because we are reaching the point where the doctors want to be able to tell if i am producing them on my own or not. In essence, it's kind of a big week, mentally. Last week I had all of these little things ailing me and I'm hoping it was more or less my body's way of cleaning house to get ready for all things new. This week my physical condition is much better, I just hope that one of those days will turn up a white cell reading. There are also the chances of false readings so I might not have a definite answer for all of this for a while, so please know that I will try to keep all of you informed as best as I can. I've learned that everyday reporting only leads to confusion, due to mild contradictions in information, so I'm just going to stick to the periodical updates in an attempt to weed out all the unnecessary information so that we all know what's going on. That said, take care!

He's not going to start this Day 2 stuff again is he?

Yeah, I'm sure I ran that into the ground the first time, so I'll just try to go with an informative update every now and again. Technically, though, I am 2 days out from my second transplant on Wednesday. Everything went well on Wednesday concerning the transplant. It didn't consist of much, other than filtering cells from a bag through a tube into my body. I guess the big difference this time is that since the first transplant didn't work at all (after my white cells were killed off by the chemo, they never came back on their own) I have been getting daily white blood cell transfusions to help fight off infection while the donor cells sneak on in and try to assimilate to my body. This is great because it's like I have a line of defense this time, but a little confusing, in that any white cells that show up on my lab results right now are probably not mine, so it's hard to tell when or if the cells graft. The doctors say that it will take about two weeks time, in which they will back off of the transfusions and see if I start producing stuff of my own. Yesterday was great. Almost felt like i could run. Today my temp is up a bit, and i'm a bit bedsore from being knocked out and transfused all day Wednesday. Everyday is up and down a bit, but they are taking good care of me here and are pretty quick to address any issues or ailments that pop up. Alright, I hope to have nothing but progress to report from here on out, so take care. Also, God bless you and thank you to those people that have taken time out of their lives to donate white blood cells to me so i can have that more of a fighting chance. NK, EP, PB,(all Houstonians that have no idea who I am but decided to help me out anyway) and my loving wife, Stephanie. Thank you so much.

WHITE BLOOD CELL DONATION PROCEDURE

I'm reposting a somewhat updated instruction to this process. Again, this takes a couple of days to get sorted out, so the planning has to be a little more intricate. I'm getting my transplant tomorrow, but have recently had a few fevers and infections that could be lingering, and i desperately need white blood cell infusions to fend these things off in order to give my new donor cells time to engraft to my bones, so if you are in the Houston area and are at all interested in giving me a good shot at this, it would be greatly appreciated!

This is pretty much a comprised list of how this works based off of my wife’s experience so far. I’ve been asked a ton of questions about whether or not a person can donate if they have recently been out of the country or have had surgery, and I can honestly say that the best way to find out that information and save a trip is to just call the clinic because they will definitely be able to tell you yes or no. The number is 713.792.7777

Everything that I do know should be included below.

Before the pre-screening appointment, the donor should:

Refrain from taking antibiotics 72 hours in advance.

Refrain from taking aspirin, ibuprofen, green tea products, or any other supplements that can act as blood thinners 48 hours in advance. It might also be a good idea not to drink caffeine that morning).

STEP 1) Please call 713.792.7777 to set up a pre-screen and qualification appointment at the clinic at 2555 Holly Hall St, just east of Almeda off of 610 near the Medical Center (open 7 days a week). They might take walk-ins but this will save you time, so please call first. You will need to reference the patient’s name and medical record number (Robert Toon, MR# 772497). You should then be contacted within 24 hours of your screening to let you know whether or not you qualified.

STEP 2) If you qualify, you will need to return to the clinic to receive an additional West Nile screen and a prescription for a Neupogen shot. Neupogen stimulates white cell growth in your blood and rarely produce any side effects in the amount that will be given to you. This is a shot that you will take home and administer yourself, or have someone else give to you. It is a very small shot with a very small quantity of medicine, so please do not let this be the wall that stops you from donating! If you have any questions or concerns about Neupogen, please call the clinic and I’m sure they will be able to answer your questions.

STEP 3) Once you receive your shot from the clinic, your qualification status as a donor is good for 30 days. The shot is meant to be taken 12 hours before you donate. White cells have a shelf life of about 1 day, so please contact me at this point (please call or text Rob Toon at 501.554.3532) so that I can add you to the donor list and schedule you for a day when a transfusion is necessary. My wife, Stephanie, gave twice last week, once at 10am and once at 8am (they try to get it early so they can get it to the patient ASAP) and both times took about 2.5 hours. They do give you a dvd player with a movie to watch while you wait, so hey, bonus! It is also possible to donate more than once after about 48-72 hours, so if goes alright the first time and you might be willing to do it again the next week, it would be a tremendous help at this point.

Days... the revamp.

I don't know if had originally explained that the day's numbers were supposed to represent the number of days out from my transplant. For example, Day 0 (July 1st)was the day that i was supposed to have had my stem-cell transplant. However I was admitted on June 23rd so that i could receive chemotherapy before my transplant, so it has been hard not to regard that day as my "day 0", especially since the first transplant was a bust, and i've been here so long by now, basically waiting to start this whole process over again next Tuesday. To me, today should actually be Day 47 because it's how long I've been in the hospital. Thought it would be less confusing, but I was wrong, so we're moving on. I will be reposting instructions about donating white cells, as they have changed, and are due to change again. I'll also be giving other updates as well, with the understanding that nothing is set in stone around here, even when they say it is, so if it seems like some of my information is contradictory, that's only because it is. Okay, white cell donation instructions to follow shortly. Take care.

DONATION INSTRUCTIONS

Okay, this is my meager attempt to try and explain the whole donation process. It's a little involved, and overall looks to be about a 3 day process, but if you could spare the time and inconvenience i would greatly appreciate it! And you know exactly who you are donating to so if you know me you can hold it over my head if you ever need to and say "Hey, remember when i saved your life?" And if you don't know me, then you're probably better for it, but i would still greatly appreciate your donation!

Before taking prescreen or donating, individuals must:

Refrain from taking antibiotics 72 hours in advance.

Refrain from taking aspirin, ibuprofen, green tea products, or any other supplements that can act as blood thinners 48 hours in advance.

You can call 713.792.7777 to set up a pre-screen and qualification appointment at either the Mays Clinic (1220 Holcombe, Entrance #5, 2^nd Floor near Elevator S, closed on weekends) or at Holly Hall (2555 Holly Hall, just east of Almeda, open 7 days a week). You will need to reference the patient’s name and medical record number ( Robert Toon, MR# 772497). You should then be contacted within 24 hours of your screening to let you know whether or not you qualified.

If you qualify, please call or text the family coordinator (Stephanie Toon, 501-554-3837) so she can schedule a time for an additional west nile virus a pre-screen medication pick up (Holly Hall). You will a receive a shot of Neupogen that you will take home and administered at 8:00pm the night before you donate. This will stimulate your white cell growth. It’s a very small needle and a very small amount of fluid. The following morning you will go to Holly Hall at 8:00am to make your donation. This process will take approximately 2-3 hours.

I know this process is a little involved and I appreciate your effort. At this point, I have no way of fighting off infections while I’m waiting for my next transplant and any edge you can give me is a huge plus. Thank you.

Rob Toon

Day 30

I apologize for the break in communication. It has been somewhat of a hectic week around here with a different set of circumstances about every other day so reporting on it would have just let to a lot of confusion anyway. Now you get the less confusing, summed up version.

I kind of hit the proverbial wall this week. Around Monday or Tuesday I received some less than comforting news from the doctors concerning my health and treatment, which can really make time slow down to a crawl and get you thinking about all the negative scenarios. The news was that they had yet to hear anything concerning my original donor agreeing to donate again. MD Anderson is not able to contact my donor directly because they found him through the marrow foundation and have to follow certain protocol in order to communicate with the donor. Its like a big game of telephone. My doctors needed to know something asap because apparently we are more pressed for time than they had originally let on, mainly due to the fact that my white count has been zero for an extremely long time, and they felt that some action needed to be taken and soon. They even asked for my dad's contact info so they could work him up to see if he might be a match, which is logical, but still sort of long shot. Don't get me wrong, my dad is probably the fittest, dare i say it, 63 year old man i know and his cells have kicked a lot of ass in their day, but the odds of matching just aren't that high.

So here we are, discussing long shot plan B and waiting on a phone call, and on top of that my doctors now say that i need to have a white cell transfusion soon because i'm in severe risk of additional infections and i need to get rid of the infection in my blood that i already have before they can proceed with anything, so now i get to solicit to the houston area for white blood cells so i don't die from infection within the next few weeks. getting information like this within a two day period (when you think everything is already set and in order) kind of shut me down, so i've done a lot of sleeping over the last couple of days.

Well, today I found out that my original donor agreed to donate again, and that my next transplant is set up for the 11th. Words cannot describe they joy this brings me. I've never been one to celebrate prematurely, but given the recent circumstances, I've never been more positive about the overall outcome of this. I still have to get rid of this blood infection, though, so it is crucial that i start with these white cell transfusions asap. I'll be posting a "how to" list concerning donating white cells so if you know someone in the houston area that may be interested then please refer them to this website. All donations must be made locally, and there is a prescreening and a couple of other things involved, so be sure and read the list first. Okay, more to follow. Take care.

Day 24

Well, what can i say? The only consistency i've had throughout the last year and a half of this is that the docs say one thing, and then something else happens, lol. the docs found out from my biopsy that i have another sort of viral infection that may have been the reason (in addition to not having enough donor cells) for the original transplant not working. so now they are going to treat that and make sure its gone before giving me another transplant. i was told that process could take up to two weeks, which isn't too bad because it would have taken time to prep and harvest the next batch of stem cells from my donor. the main stink in all of this is that it has really thrown us off of our timeline for staying here, and although we are very blessed to have options, its still a little frustrating when your plans are constantly being altered. obviously, i miss my wife and kids and arkansas, but it hasn't been too hard on me to roll with the punches so far. unfortunately, steph is the super organized orchestrater and things usually end up falling on her shoulders to take care of, so i'm really hating it for her right now more than anything. bottom line is that by my count, it seems as though we are currently 4 or 5 weeks behind our original return schedule, which was october 8th. looks like i will be here until at least mid-november. man, that sounds so far away, but it honestly feels like i've only been here for a week or so instead of almost 5 , so at least time is flying by. i'll continue to update on this site, just probably not as frequently until transplant time comes around again. please know that i am feeling very well. i'm keeping busy, plenty of stuff to do, not wasting away or anything. okay, will keep in touch. take care!

Day 23

Everything ok. just getting in some z's. will play catch up tomorrow. take care.

Day 21

Okay, so to recap and elaborate a bit on my last post... after i put it up, the next day my primary doc here (as opposed to the rounding docs i usually see) came for a visit and explained that he thinks that the issue was, in fact, quantity. he doesn't think they harvested enough stem cells to reach a breakpoint level where they could have a chance of engrafting. i had a bone marrow biopsy number 19 or 20 yesterday(one of the least painful yet) just so they could take a look and get an idea of what is or isn't being produced, or if they could find any more cancerous cell growth they they would expect. should hear something on that in a couple of days. based on those results, they will request another harvest of stem cells from the donor, who has already agreed (way to go, donor) to give again. the first pack of stem cells looked like a big ziplock back of tomato soup, so hopefully we can get a couple of helpings of that stuff this time.

On the lighter side, i've had a streak of very easy-going nurses over the last few days and that always makes things better. too bad that streak had to end today. woke up with some pain in my eyes like they were sensitive to light or something. mentioned it to the nurse, who freaked out when she saw the blood that had collected in my eyes because she had never taken care of me before today (the blood in the eye thing developed several weeks ago, nothing new) so she called for an opthamologist to visit the room just in case. fine by me, wouldn't want to take a chance with my vision anyway. so i get up and grab the laptop, as per usual, so i can catch up with my daily crap that i keep myself busy with... make a list of crap i want to watch from tvguide.com, fb, ft, twitter. all this unimportant stuff that is very much important to me now since it is my main means of socializing. internet is down. not cool. had a movie to watch, but figured i'd save it for later and catch up on some sleep. eyes were hurting and they were about to knock me out for transfusions anyway. wake up five or so hours later. eye pain gone, internet working, good deal. that's when transport shows up to wheel me down to the eye doc. crap. i get dressed up, gloved, glowned, masked up, and begin the death trip down to the eye doctor (death trip because the woman pushing me in my mandatory wheelchair is making me lean forward and hold tony stark (my i.v. pole) instead of locking it onto the wheelchair where it goes. as soon as i am dropped off i'm told that the doctor had to visit a patient in their room for some emergency, so i proceed to sit for an hour, sweating like the fat boy that i am in all my awesome looking germ prevention gear. after that hour passes, they start doing all these eye exam tests. why? i was here six weeks ago for this, and more importantly, there was something specifically wrong with my eyes this morning, and now its gone. i think we're okay here. next thing you know, my eyes are dilated. so much for using the laptop for the next few hours. doc finally comes back, everyone realizes that they're idiots and i'm a genius and send me back to my room where the nurse's assistant is waiting to give me some baditude because no one told her that i was off the floor when she came to take some routine vitals. really? really? so i did what any mature person would do when faced with someone else's trivial crap. i gave her the dead arm when she tried to take my blood pressure. i'm pretty sure she had broken out in a sweat by the time she wrestled that cuff around my arm. thanks alot, ma'am. see you in four hours for round two. take care.

Day 19

Sorry for missing a day or so. I like to enjoy the weekends, too, even though every day is exactly the same. So still 0 white count. Today the doctor did mention that although there was no need to be too concerned unless we get up to 28 without anything, but in an effort to be proactive, they are going to do another bone marrow biopsy(#18? maybe?) tomorrow and check things out, and if necessary, they're going to contact my donor and try to harvest more stem cells. it was explained to me the sometimes it can simply be a matter of quantity, and i'm not the smallest guy around. that's the main reason why cord blood is usually not used for adult transplants... not enough. so i'll admit that i was a little caught off guard by the news. my efforts to stay optimistic usually involve a good deal of denial, and so if i'm not producing any white cells right now, i'm pretty much dependent on this hospital to keep me alive with no ability to fight infection. this freaked me out a little, but then the doc came back and explained that there's no reason to fret just yet, that my protoplasm levels and overall health was one of the main factors at play here, and that they were doing just fine. this may involve a longer stay, which isn't the greatest news, but is perfectly alright with me at this point. so i'm sure all the worry warts will worry, and you that pray will pray, but don't lose your head and i won't lose mine and we'll all be alright here, alright? ok more info to follow later. take care.

Day 17

More platelets then sleep. Watched a couple of soccer games today so that was a nice break from csi and law and order...which i'm watching now. White count still holding strong at nothing. Shocker, huh? Mom and Brit came over tonight and humored me for a few hours while i gave them an earful of nurse rants. haven't been outside in almost four weeks but i hear there was a nice break in the hot weather so i'm glad everybody got some nice weekend weather. i've developed a habit of keeping it pretty cold in here and then bundling up to get warm. the nurses keep trying to turn off the thermostat. don't they understand that i like the unnecessary process of warming up instead of cooling off? Brit just recently accepted a position as a nurse here at MD Anderson, so when the evening man nurse showed up to change the bandage that covers the port that is sticthed into my shoulder, she took advantage and did some observing. this apparently threw man nurse off a little bit because he proceded to sissify me by cleaning the crap out of my shoulder with a little too much elbow grease. nothing says humiliation like inflicting pain with a cotton swab. thanks, man nurse. that was the apex of my day. boring is good.

alright, take care.

Day 16

Technically its been day17 for about 3 hours now, but i this is going to be short so whatever. got platelets and blood today, and those always make me feel a little better. white count is at zero still. checked with doc just to confirm that nothing crazy is going on and she set me at ease, saying engraftment usually happens within 14-28 days, and that i'm on the early side right now. see what happens when some of you folks start freaking me out? anyway, throat pain is just short of a distant memory. doc said to me the yesterday that it looked like i was retaining some fluid. i didn't necessarily agree until i started hitting the head every five minutes this morning. got plenty of sleep last night and even a nap this morning but here i am swooning in front of the laptop again. think i just took a nap with eyes open looking at the screen, so that's a good sign to hang it up. gonna concentrate on keeping it as "boring" as possible, as the rounding doc puts it. okay take care.

Day 15

Everything is running right along today. No change in anything today. Gonna catch up on some winks. Take care.

Day 14

Oh man, today was great. Lots of rest and almost no new predicaments. Only thing new going on is that at some point yesterday when my platelets were really low, i must have sneezed or coughed at some point, which caused some scleral hemorrhaging (the white of my eyes bled). so about half of both whites of my eyes are blood red, but it hasn't affected my vision at all. this actually happened to me last year, only it was in my retina, so that time i experienced some focal loss of sight. that said, its painless, and will go away on its own. the cool part is that catholics have praying to me outside my door all day. j/k. my throat is much better, although i was a little to ambitious in choosing my supper tonight; still need to stick to soft foods for now.

my counts for today were low across the board, so i needed blood and platelets again. the docs have boosted my platelet level up to try and prevent any further bleeding from the eyes or any other miracles i may perform. white count is still somewhere below 0. fyi, i'm not sure what amount these numbers are indicative of or if they're percentages or what, but the normal level for a white count is anywhere from 4-11. normal ratio for hemaglobin is 14-18,(anything below that is considered anemic, which can be indicative of many things so don't freak out if you ever hear that your hemaglobin is low... but definitely ask why, lol) and normal platelet count is 140-440. when i was got a call that something was wrong with me, i entered the hospital with a white count of 1.7, hemaglobin at 4, and platelets at 0. i didn't know what any of this meant at the time, but it sure made the doctors and nurses whisper whenever they heard those numbers, so i took it that my levels had seen better days. right now they are trying give my white cells a boost with the neupogen shots i had mentioned earlier so that my body can start fighting off germs again. with hemaglobin, they try to keep me at 8 or above, and they just bumped my low platelet level up to 30. i finished getting chemo two days before i had the transplant and it killed off as many fast growing cells as it could (hair follicles, mouth tissue, epidermis, etc.) in a short time and is supposed to be gone by the time they introduce the donor cells, so when my body finally recovers and the donor cells take the place of the old cells (sort of) then i should start producing all of this stuff again, and will no longer need transfusions as much. it could take as much as a year for my counts to actually get back to normal. so, i know that was an extremely rudimentary explanation, but i hope that gives a little insight into these numbers i keep spewing out daily. i know there are at least two doctors and a nurse reading this so please don't call me out for the idiot that i am, but feel free to correct or add anything pertinent to the subject. okay, take care, and sorry about all typos and grammatical errors. yes, i am actually that lazy.

Day 13

Okay, caught up on a little sleep from the last couple of nights, even though it was all during the day. Pretty sure if i turn the laptop and tv off for five minutes that i'd konk out pretty quick tonight, too. Went to bed at a reasonable hour last night but was wide awake pretty soon dealing with some massive decongestion and a throat that was about 80% swollen shut. i have to admit that as slovenly sloppy as i can come off at times, i absolutely hate the whole spitting process. pretty much up there on my short list of gross outs. eventually, the pain meds made me nauseated and since my gag reflex was pretty high already... it was a long night that played out into a long morning. eventually the pain subsided and my throat got a little better and i was able to get some sleep, which is always a huge relief to me. as long as the pain doesn't keep me from sleeping, i consider in manageable, and i've only had a few nights where it hasn't been manageable, and for that i'm extremely thankful.

for those select few of you that are paying attention to nothing but my white count as a good/bad meter, today it came back as a big beautiful zero! while it would be nice for this number to start rising, i'd like to point out that I'M OKAY RIGHT NOW! please don't forget that not only is it very common for these counts to have not picked up yet, but that there are many other things that factor into my well being. i haven't lost focus of that, and i would ask for you not to lose focus as well. i'm not nitpicking as much as i am just asking for your support. the only thing that stresses me out is when other people start to stress out, so let's all just relax and let this thing play out. at that point if there is any bitching and moaning to be done, then i promise i'll join right in! thank you guys for caring. thanks to britnee and mom dropping by today and putting up with me! take care.

Day 12

Nothing new under the sun. Need sleep. Goodnight.

Day 11

White count still a big fat goose egg! Nobody seems to be concerned with this yet so i'm not going to waste my time worrying either. In fact, had to have two units of blood today, so the docs must hit me up with some pretty strong chemo. this is a good thing, because it just means that its that much more likely that they were able to kill off all of the cancer cells. still won't know for a while, but hoping to see at least some white cell activity within the next three days. mom stopped by to hang out for a couple of hours today. went to bed at midnight last night, got up at 7, then was knocked out again for blood, didn't get up again until 1pm. good sleep time. my back is no longer rejecting this funky mattress. feeling pretty dang good. only downside now is my mouth and throat, which feel like they will combust from the friction of swallowing. the pain is definitely manageable except for when eating. have lost 16 pounds since being admitted, which is by no means a bad thing. okay, that's pretty much it! take care.

Day 10

Nothing new to report. white count still at 0. needed platelets today, and together will by existing throat issues, i had a slight reaction and my throat closed up a little more than usual, so that was interesting for a bit, but a quick shot of hydrocortisone made it go away, so not sweat there. that's about it. mouth and throat are feeling better now. pt guy came to visit and said that i was above average on getting around and stuff, so no sweating that. still just waiting for counts to show signs of life. netflix and farmtown for tonight. take care.

Day 9

Needed a unit of blood today, so since i didn't sleep much last night, after getting premeds this morning i cranked out about a 5 hour nap. That means i'll be up all night again, but that's a good thing since its the weekend and they show a ton of movies at night on regular programming. i know, i know... how many times can a person watch "Speed" anyway? I'll watch anything. Really into the OG versions of movies on TCM right now. Pretty sure that any blockbuster over the last five years had steve mcqueen, michael caine, or charlton heston doing it first.

So we're on day 9 post-transplant and things couldn't be more uneventful, which is a good thing. still waiting for my donor cells to engraft onto into the porous parts of my bone where my marrow was expunged by my latest round of high dose chemotherapy. again, we will know when the engraftment occurs when i start producing a steady count of white and red blood cells and platelets. as i had mentioned, i'm taking these daily shots of neupogen, which catalyzes my white blood cell growth, so over the next few days my counts might start spiking, but it wouldn't be a true indication of my actual count, so i still have, at the very least, two more weeks of in-patient care before i am released to me and steph's new local residence. it's alright though. i seem to have hit my stride and the days are actually starting to clip along a pretty fast rate. hardest part at this point is just missing my boys and girls, but i keep getting pics and videos, and that has helped.

thanks for everyone for all your thoughts and prayers. i only have one request, and this goes for anyone you may know that may be going through a tough situation. While worrying is never really a positive thing, i realize that it is a natural thing to do. i have kids, and i do my fair share of pointless worrying all the time. i do not, however, tell them that i worry about them all the time. there are plenty of ways i have planned of screwing them up in the head. this is not one of them. so please, no more "we hope you're doing well! we're all so worried about you!" comments. try "we're thinking of you" or some cheesy "our hearts go out to you" comments, but a good rule of thumb is to leave the worrying to yourselves. for most of you uber-worriers its a given anyway, so no more "we're going to miss you!" lol. take care.

Day 8

Sorry for no update yesterday. Just means nothing much happened. I started a regimen of Neupogen shots yesterday, which are these subcutaneous shots that i receive either in the arm or abdomen that will speed up my white cell growth, which is still bottomed out at 0, which is nothing unusual. hemoglobin is doing some weird stuff in that it has risen to 8.6 over the last couple of days. unfortunately this isn't indicative of the cells grafting, just that this number will fluctuate over the next few days. i needed platelets yesterday (was at 11) but there is a shortage of them here right now, so i didn't end up getting any yesterday, which was actually nice because it wasn't considered a top priority to give ME platelets, which means there are a bunch of people here that are way sicker than me. nice perception of things, i know, but they're at 6 today, so i'm getting premeds as we speak, fighting sleep trying to type. my back pain is also much better, and i was taken off of the pca thingy that constantly pumps pain meds, which was also nice, but i was starting to feeling nauseated around the clock. i still have the button for pain and that's a relief because i have a sore on the bottom of my tongue that is pretty unpleasant right now. mom just flew in, so we're in for a fun bus line tutorial since she is carless for the moment. okay, take care.

Day 6

Today is the two week mark for my current hospital stay. No transfusions of any sort today, for once. I wasn't knocked out with anything... which made the day really long! I'll definitely need platelets and blood tomorrow, but for now i'll enjoy skipping my morning and afternoon naps. Still have the back pain, but it seems to be doing a little better. Today was comprised of a lot of Sportcenter, SVU, and anything else that daytime programming chose to play to death. Rainfest 09' here in Houston today. One nurse told me this is the first time it had rained in her yard since April 27th. Someone go check out this lady's yard, as it apparently is not applicable to normal weather conditions. Had my first Houstonian male nurse today. Nothing particularly different from any of the other male nurses i've been exposed to thus far; equally annoying with an overbearring need to project his own homegrown assessment for my back pain. Yeah, we get it. You're not gay. Now stop calling me "dude". Okay, take care.

Day 5

Nothing much to report. My back pain has taken center stage for the moment, and so instead of being bothered by my constant requests for more pain medication, they have decided to give me this fun little machine that delves out pain medication constantly. It also comes with a button that i can push every 20 minutes for additional medicine, which i have yet to use, but want so badly to pushi it just because it looks fun. Ironically, as soon as they installed the machine, they gave me hyrdrocortisone as premeds for another transfusion. As i had mentioned, this totally relieves my back pain, but they are hesitant to use it for that, as steroids break down muscle tissue, and i don't have a lot to spare these days... gonna check to see if they have something that breaks down fatty tissue and ask them to use liberally. Steph went home today, much to my delight. Not because i didn't want her here, but because i'd rather her be with the kids as much as possible. I've got reinforcements watching over me though, not to mention a whole staff of professionals trained to try and fix me, so i think i'll be alright. haven't even tapped into the video games and guitar yet. still running through netflix selections, just trying to pace myself. okay, take care.

Day 4

Sorry about no update on day 3. Not much to report on when you sleep through 20 hours of it. My counts are still pretty bottomed out so i'm having to have transfusions about every other day, so even though i slept through the night and then some, around 11am they gave me more knock out meds to fight any reactions i might have to blood or platelets and before i know it, its 11:39pm. Breakfast can't get here fast enough. The upside to having transfusions is all the hyrdocortisone they give me, which really helps with this perpetual back pain i've been having thanks to the awesome beds here. Other than a little nausea due to the pain meds, everything is going pretty well. no more crazy rashes or other weird reactions in the last couple of days. Just waiting to see if the donor cells graft. Will know when my counts start coming up again. Just heard about Steve McNair. Very sad. Okay, take care.

Day 2

Okay, so I'm only a few minutes into this day, but i can tell you know that its going to be even more of a snoozer than usual. Slept all day thanks to being knocked out from benadryl, so i'm going to do a little bit of walking to appease the nurses, then some farmtown (cracktown), count some cieling tiles. no crazy side effects thus far. main problem is this hospital bed mattress with an automated air bladder to prevent bed sores. feels like lying on a bubble. TdF coming up soon; something to look forward to. Take care.

Day 1

The quality of nurse sets the tone for the day. At 6am this morning i received a big helping of "i brought my homelife to work" from the new nurse. Loving that. I was in an out of sleep yesterdat afternoon, so i was up throughout that night and did most of my sleeping in the late a.m. today, and i'm still fighting off sleep from benadryl. fyi, they give me a lot of benadryl because i've been needing a lot of blood and platetelets right now and i tend to have some sort of reaction when this occurs. will try to get up and do som laps around the unit later since i've been in bed all day again. everything else is totally normal. haven't grown a tail or developed superhuman powers yet. all in good time. take care.

Day 0

Transplant day! I've heard a lot of people refer to this as their new birthday. These people need to get over their forced jargon-driven optimism. Don't get me wrong, I'm pumped, just a little deflated from yesterday. I've been on a particular drug for the last three days that is designed to kill off my T cells so that my body doesn't try and reject the new donor cells. The first night of this was a doozy. Lots of vomiting, lots of pain... the death rattle of my T cells. The next day was significantly better, since there was no one left to put up a fight. Just when i thought that was over, i had some delayed reactions yesterday. Namely, a head to toe rash. The good side was that it was mostly just itchy. The bad side was that it set the souls of my feet ablaze. So i spent the majority of my day laid up, covered in steroid creams, trying not to itch. 100 % better today, feet still a little tender. sneezed this morning and pulled something in my back, so i'm on the happy juice right now. fyi, the transplant involves no procedure or anything. its just like a blood transfusion. i have a port in my shoulder with three different lines in it and that's how they give me everything, so they will just inject the donor cells through it over a few hours. okay, will update when i know more.

Day Minus One

Sorry. Getting a late start on this so I'll just jump into it. I'm a husband and father of four from Central Arkansas. I was diagnosed with Leukemia (AML) in April of 2008, and after having undergone several chemotherapy treatments with successful yet shortlived success, am now in need of a stem-cell transplant in order have a chance at a little more of life. Fortunately, with the help of MD Anderson Cancer Center in Houston, TX and the National Marrow Registry, I was able to find a closely matched unrelated donor. I'll get into stem cells and donors and transplant stuff later.

I've been in Houston for the last week preparing for my transplant, which will happen on July 1st. My doctors say that if all goes well, my stay in Houston will be somewhere around 100 days. They say the clock starts on the day of my transplant. I'll be on inpatient status for about 30 days, after which i will be discharged, but will have to come back to the hospital for daily labs and check-ups for about another 2 months.

So, here we are, me and my wife, Steph, temporary residents of Houston, TX. We moved here about two weeks ago to get settled in and hopefully Steph will be able to go home to see our kiddos. Luckily, we have family here watching out for us as well as family back home picking up the slack. There are several other people that have helped us through this so far that would like to be kept in the know as well, so i'm going to attempt to keep a daily update of what's going over here. I can honestly say that the week that i have spent in the hospital has certainly been a challenging experience already, so please excuse me if i come off as "me" at times.