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.