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!