Monday, 4/05/04
(Day 11)
Red=10.5
White=50
Platelets=16
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Today I had my Monday morning Chest X-Ray, so they took me downstairs. The wait to get the X-Ray only took about 20 minutes, and then I had to wait about an hour for transportation to come and pick me up. I had been light headed all day, so they told me that I was dehydrated and gave me a lot of IV Fluids. I had my standard two bags of Platelets to boost up my platelets. That's about it; I watched some TV and went to bed. Still hoping for the good news of the bone marrow working. Today was day 10, and they said it should be 7-10 days, but last time it took a little longer than they said too, so I'm not too worried just yet. That will start if we don't get anything going in a few days.
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Sunday, 4/04/04
(Day 10)
Red=10.3
White=40
Platelets=22
For those of you who keep track of my blood counts, here are the ones you missed:
Saturday, 4/03/04:
(Day 9)
Red: 10.7
White: 40
Platelets: 22
Friday, 4/02/04:
(Day 8)
Red: 8.8
White: 50
Platelets:14
Thursday 4/01/04:
(Day 7)
Red: 9.5
White: 70
Platlets: 14
Wednesday 2/31/04:
(Day 6)
Red:10.1
White:10
Platlets:16
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Hello all, sorry I haven't been giving my promised every-day update, but
Thursday and Friday I just could not wake up. And then whenever I would start to go on the computer, the nurse would give me either Benadrril, which makes me sleeper, or I would have t go somewhere for a test, which takes at least an h our. For those of you who keep track of my blood counts, I listed the last few on the left column.
While we are on blood counts, a quick lesson for any newcomers, or those who don't quite know why I would post them daily. First off, the "Transplant. is nothing more than a 20 to 30 minute transfusion. It goes in just as if I needed blood instead of marrow. Once my WHITE cells reach 1000 and continue growing, it is considered that my transplant "Grafted".
It takes at least 7 to 10 days before we start to see great jumps in the white count, and they may go up and down many times before catching. The RED blood cells and the PLATELETS are also not being produced by me yet, so I end up getting blood and/or platelet transfusions every day to keep those numbers where they are supposed to be.
Back to today. I'm starting to get a little stronger, but I'm shaky while walking. Getting out of the bed and just sitting in a chair helps a little, and walking helps a lot, but the more I lye here, in bed, the less I want to do. It is very early morning, so I'm going to try to make it a good day by walking a lot and getting out of bed more.
They think that they found out what was causing my morning feavers. I guess I was having an allergic reaction to one of the anti-fungal medications that they were giving me every night. So they changed that to another medicine. Needless to say, my first dose of this medicin makes me see little blotches of color all over the place. The Drs. say that that is a normal side-effect and it should go away in a couple of days.
My CT scan the other day came out ok. It showed a little scar tissue at the bottom of my lungs. This is from how large my stomach has gotten, that everything has just pushed upward and hit the bottom of my lungs. They say not to worry though, there is a breathing exercise they want me to do in here, and once I get out, every day walking will fix any problems to the lungs.
Note:The Dr said that this is going to be my rough week, so don't be too alarmed if I don't update the site every day, just check the guestbook and I'm sure Brienda will have an update.
P.S. Thanks to everyone who sent me an email or a greating card, and thanks to all of those who are praying for me.
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Tuesday, 3/30/04
(Day 5)
Red=10.1
White=10
Platelets=16
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Today at 4:00 am I had a "high" fever. I'm not quite sure how high it was, and I actually slept right through it. I don't even remember them coming in and taking my temp. Well, anyhow, this ended up buying me a CT scan of my chest because they still can't find out where the fevers are coming from. My main Dr. says that it's normal to have these types of fevers, and I even had them during the first transplant.None the less, the CT came back looking normal.
My white count went down to 10 today, but it's going to fluxuate. The Dr. says give it until this weekend at the earliest before it stabilizes. So don't worry about the lowering white count today.
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Monday, 3/29/04
(Day 4)
Red=9.8
White=20
Platelets=14
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Today I'm Fealing somewhat better. We found the right pain pill regimin so that I don't have any more pain. I woke up early and wasn't sore, so I wilked up and down the hallway for a few minutes. My white count is going up and down,
but the Drs. say that is normal. It will still be a few days before we know if this transplant worked.
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Sunday, 3/28/04
(Day 3)
Red=8.9
White=30
Platelets=17
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Today my two aunts came down to visit. They come down every Sunday to visit. They also take my mom out to eat and go shopping for food and stuff. This is good, because it breaks her out of the daily routeen and stress that we go through every day. They take about 3 hours and come back with all the food I requested.
I woke up with a nother mild feever today, but no one seams to care. The fever always ends up breaking as the day goes on. I feal like somebody beat me up. All my bones and joints hurt and I can hardley walk. They are giving me oxycodone and it has been working. The only problem is that I wait too long to ask for them,and the pain is back before the new pill kickes in.
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Saturday, 3/27/04
(Day 2)
Red=9.5
White=50
Platelets=18
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Today I woke up with a mild fever again, but it went away after a little while. The Drs. changed my antibiotics around to try to make them stop. As you can see, I pretty much finished the new site, so I put it up late tonight. I hope you like it. It makes it much easier to update. I may skip a day or two every now and again if I feel bad, but I'll try to give you daily updates. Once my White Blood Count gets to 1000 I get to get out of the hospital! The Drs. say that it should take 7 to 10 days, so let's start counting. Of course, once I get out of the hospital, I've got to stay here in Cleveland for a total of 100 days from Thursday, the transplant day.
Go Stem Cells, Make That White Blood!
Chris.
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Friday, 3/26/04
(Day 1)
Red=10.4
White=20
Platelets=23
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Today I woke up with a Fever of 102.4. I won’t know right away if I have some sort of an infection, but they did blood cultures to check. As t day progresses, the fever did break. The nurse said that the fever may not be an infection, but a little reaction to the marrow. They have me on a wide spectrum of antibiotics just in case. I’m also starting to get a lot of bone pain, so I was doped up most of the day. They are giving me Oxicoton instead of Morphine, so I don’t go wacky again. This new pain pill just makes me sleepy for awhile, so I dozed off for a while, and then woke up for a while. Lastly, I finished a large hunk of the new site tonight, so hopefully it will be up tomorrow.
Till Next Time,
Chris.
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Thursday, 3/25/04
(Day 0)
Red=8.7
White=60
Platelets=25
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I have just been informed that the cells for my second transplant have arrived! They have to do some things with the cells before I can get them, so my second transplant is going to be at 10:00 this morning. It’s time to get healthy again!
UPDATE: I Just had my second transplant and there was about twice the amount that they gave me the first time, and they have extra that they are freezing just in case it starts to drop out again, they can give it a boost.
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Wednesday, 3/24/04
(Day –1)
Red=9.5
White=20
Platelets=30
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Not much happening today regarding my health, still doing well. Tomorrow is the big day, ABOUT TIME! I have a rough draft of the new website completed, click here to view it.
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Tuesday, 3/23/04
(Day –2)
Red=9.5
White=80
Platelets=26
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Today I’m still feeling well and hanging in there. This update is to inform everyone that The News Herald Newspaper is doing a story about me in this Sundays paper. It will be on the front page of the Lifestyles section. If you can’t get the paper, you can go to their website and view it on Sunday. Their web address is www.thenewsherald.com
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Monday, 3/22/04
(Day –3)
Red=10.9
White=20
Platelets=22
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Here’s a quick update for you. Today I had my Monday morning Chest X-Ray, so they took me downstairs for about an hour and a half. Because this backed everything up a bit, as soon as I got back to my room, 4 doctors came in, one after another, so the morning was pretty hectic. Because I haven’t been going to sleep until really late, I took a nap, and the next thing I knew it was 2:00. So today went by quite quickly. I finally started to lay the groundwork for the new web site, so it’s going to be a little while until the facelift. And that’s about all that has happened today, nothing exciting. Still just hanging in here waiting for Thursday.
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Sunday, 3/21/04
(Day –4)
Red=8.2
White=30
Platelets=15
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You guys are going to love this one! I am just sitting here getting ready to go to bed and stumbled across a document in my computer that I typed out when I was flipping out on Morphine. Once I read it, I had to do a quick update to share it with you guys. I titled the document “Weird Dreams” and listed two of the dreams that I had during the days the Morphine took over and I do not know what happened. So here they are, as written when I was out of it.
---Dream 1---
2/9/04
I had a dream that I was going on a vacation to Vegas with my family (my mother, my 2 aunts, 2 uncles, 2 cousins, and me). We were in the airport looking for our Delta flight and decided to split up. I ended up getting completely lost, and I worker had to physically take me to the plane. The worker ended taking me through some sort of an airplane graveyard. We had to duck under, through, and over m multiple plane parts. Well about halfway up the path, my Hickman Catheter (the hose in my chest) started to bleed profusely. I stopped where I was and yelled down that I needed a clamp to stop the bleeding, but no one had anything that would work. A nurse popped out of nowhere, but did nothing to help. Now that I had lost a large amount of blood, I decided to just rip the Hickman out and put pressure over the hole. After all that, we got onto the flight, went to Vegas and came back home with no more worry about the Hickman. The last thing I remember is saying thatI’ll never be flying Delta again!
I think this dream might just be telling me that once this is done, I’ll get to have a big party and never have to worry about hoses coming out of my chest again
---Dream 2---
2/10/04
Last night I dreamt that I had a weird device in my mouth that was locking my jaw so that I could hardly move it. (I think that I dreamt this because my jaw was hurting at the time.) Anyways, there was a party going on at one of my neighbor’s house (whom we would never usually visit) that I went to and for some reason they had the key to unlock my jaw peace. They took off my jaw peace and attached hooks that protruded outside of my mouth. I then was hung upside-down from a tree hanging over three plates upon which every guest to the party had placed all of their jewelry. Then, I was told to use the hooks hanging out of my mouth and collect whatever jewelry I could, and I could keep what ever I had.
Well I hope that brought a smile to some faces, it sure did mine. I have to go now, so I update you more later.
Chris.
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Saturday, 3/20/04
(Day –4)
(Day -5)
Red=9.4
White=20
Platelets=29
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Sorry about no update yesterday, I’ve been keeping busy and ran out of time to update the site. I’ll start off today with the news that the transplant got pushed back yet one day. It’s going to be sometime in the morning on Thursday the 25th. Something happened with the donor and they are going to take two days to collect the cells from him instead of one. I figure that what is happening is that the donor isn’t making quite as many stem cells as they thought, so they are giving him one more day of medication and collecting over two days so that we have plenty of cells for me. The way that they are doing it this time, I think that if they get a large amount of cells, they are going to freeze them incase I need a boost of cells down the road.
Enough about that. I’ve been feeling very well, almost as well as when I first got here. Yesterday I rearranged the room and it gives me more room (I’ll put up a picture soon). I started a puzzle the other day too. Also I’m starting to do the remodel of the web site, so I’ve been staying very busy.
I’m not sure how many of you just skip the top of the page and jump to the updates, so I’m moving this comment here:
I’m going to try to change around the web site to make it easier for me to update so I’d like to ask for some feedback on what you like and dislike about the site now. Just send me a simple E-Mail. I’d like to have the new site up and running by Monday. Thanks
Finally, I would like say: I don’t know why, but not many people have been calling me. I don’t know if it’s because you don’t want to disturb me, or what, but I’d like to let everyone know that if you ever want to talk, or even just check up on me, I don’t mind a phone call now and again, I would even appreciate it. Just please call before 7:00pm.. I haven’t been calling people because I just don’t think about it. (I’m stuck in a little of a daily routine.) If you do want to call, I have a 1-800 number to call so it’s free for you. The phone number is 1-800-223-2273 ext.. 47308. If this number is busy, it’s probably because I’m online. If you get a busy signal, feel free to call my cell phone. That number is 1-313-320-0767 (Don’t worry about my phone bill, I have plenty of free minutes and no roaming charges, so the phone call is still free for me.)
That’s it for me today, time for dinner.
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Thursday, 3/18/04
(Day –5)
(Day -6)
Red=11.2
White=30
Platelets=20
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UPDATE: I just got news that the bone marrow isn’t going to get here until 9 or 10 am on Wednesday the 24th instead of Tuesday. This is no big deal, I figured that they wouldn’t get here until early morning anyway, but I wanted to let everyone know.
Hello again, today’s update is actually going to be a long account of what ended up happening to me yesterday, which was quite an adventure for me. I ended up getting a nice little field trip and it turned into a good day after the rough night I had. I’m just going to let you know that I’m feeling much better, and I’m getting a lot of my strength back. I’m still having a little trouble getting back to sleep after 4 am, but it’s a good time to work on the web site, and I seem to feel better during the day if I just stay up instead of going back to sleep. Well, I’m just going to get into the story now, no new medical information, I had my eyes looked at as stated in the story, and there was no problems with them, and I’m just hanging in there waiting for the marrow on Tuesday.
---Warning, Long Story Coming Up---
After being awake since 3 am, I ended up falling asleep for about a half hour before the Dr. ended up coming in to see me. Everything was going fine with my health, so it was quick, so I decided to take a couple of walks down the hallway and I felt really well (usually I end up just laying around my room till noon or so). My vision had been a little blurry every now and again, so around 11:30 the Dr. decided to send me to the Eye Dr. to make sure that they weren’t infected, so I got to go on a field trip to the “I” building, and oh, what a trip! It all started with transport coming to get me around 12:00 noon (just before I was able to eat my lunch tray). The wheelchair ride took about 25 minutes, and then I arrived. They stuck me behind a big pillar where I couldn’t see much, so I sat there reading my medical chart for about an hour listening to everyone complaining how bad they had it, having to wait for so long. Then they called me in for the normal vision test and it all began. About half way through the testing of my first eye, the letters began getting foggy. I kept going back and forth on my choices of two lenses, and everything just kept getting foggier. Finally, the Dr. gave up and went to the other eye. She started testing that eye and the same thing happened, foggier and foggier. Finally I looked at the lens and realized that because I had my mask on, water from my breath condensed on the glass of the equipment, causing the foggy vision. Needless to say, It ended up taking us an hour to complete a twenty minute exam. After all of that, they stuck me in another corner in the lobby to wait for transport to get me back to the room. I sat there looking around for a while enjoying some new scenery and then started reading my chart some more. I ended up reading my chart from cover to cover, and then transport ended up getting there an hour and a half later. On the ride back, a second transporter without a patent starting walking next to us and somehow ended up telling us the step-by-step directions on how to check and fix a bad gasket of an oil pan of a car (and he didn’t even know for sure, all of this information was coming from his “friend” who is going to do it for him on his day off). Finally I got back to my room and it was 5:30 (4 hours later). That ended up throwing everything off schedule. I missed lunch, and am just now (5 am on Thursday) getting the last IV that I was supposed to finish yesterday
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Wednesday, 3/17/04
(Day –7)
Red=9
White=30
Platelets=15
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I‘ve been having trouble sleeping tonight, so I thought I’d just blab on the web site for a little. I’ve been tossing and turning since about 2 this morning, but don’t want to ask for something to help me sleep. Day 0 is starting to get close again and I’m almost more scared then relieved. It’s getting harder every day. I can hardly walk down the hall with out running out of breath, and I’m even having trouble getting dressed by myself. It’s even getting hard to lift up my laptop and sliding it to my side, and to top it off, my vision is starting to go and it’s hard to see down the hall and make out faces. I need to pull through this, but man it’s rough.
Sorry about that, but it helped to get it off my chest.
Other than that, I’m still just hanging in there, eating like a horse from all of the steroids that they have been giving me, the steroids have also messed up my sugar, so I’m on a Diabetic Diet so I’m supposed to watch what I eat, and to top it off, my stomach seams to be growing by the second. Food has been on my mind constantly and every other hour I end up getting crazy hunger pains in my chest and I want some off-the-wall food that I don’t have and even if I do get it, it doesn’t taste right. Well, I think that’s about it for tonight. Once again, sorry about the rambling, but it helps just to let lose every now and again.
Till next time,
Chris
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Monday, 3/15/04
(Day –9)
Red=10.8
White=30
Platelets=26
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Sorry about this last delay on an update, but there really wasn’t much to update on. We are just hanging on for Tuesday the 23 for more bone marrow. They are starting to lessen the steroids that they are given me, because they are making my blood sugar go through the roof. I also had an infection (I don’t know if I mentioned it in the past few updates.) This infection was just a little one that they found in a blood culture of my Hickman Catheter. It seams to be under control, and they are still treating it with antibiotics. I have been feeling better then I was the last update, and just taking it day by day.
I’ve got to go for now, so I’ll talk to you later.
Chris
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Thursday, 3/11/04
(Day –13)
Red=9
White=60
Platelets=7
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Sorry it took so long for the update, there just wasn’t much to say, and I was sick of talking about the bad things. I wanted to have some good news to report for once. And here is that good news… Today we found out that the donor HAS agreed to donate again, and they have given us a date of March 23rd to receive more cells. That brings us back down to day –12. Other than that, I have been feeling all beat up because of the steroids that they have been giving me. They say that tonight will be the last of those, so hopefully I’ll start feeling better in the next couple of days.
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Wednesday, 3/10/04
(Day –12)
Red=9.9
White=10
Platelets=8
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Today I just slept most of the day. My mom and I put together a 300 piece puzzle in my room between yesterday and today to kill some time. That was fun and kept us busy. The steroids they started me on the other day are making me a little weak, so I just slept the day away.
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Tuesday, 3/9/04
(Day –13)
Red=10.4
White=30
Platelets=3
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Well, they started the ball rolling on contacting the donor, but it will take a couple of days before we know what is happening with the donor. My heart is back to normal. Now I’m going to be on a couple heart medications on top of all the others for this heart thing, but I think that they are going to end the heart medication once I get through the whole transplant process.
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Monday, 3/08/04
(Day –14)
Red=11.2
White=80
Platelets=16
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Well, I had an interesting night last night. Yesterday my heart starting beating all around crazy like, so they ended having to send me to the ICU just for heart monitoring while they gave me an IV to set that straight. All went well with that, and I’m back in my room. Unfortunately the final test we were waiting on came back saying that there was hardly any bone marrow working, so I officially need to have a second transplant. They say that it will take at least a couple of weeks before I get the new bone marrow from the donor, so we just have to wait here until they arrive. Then I have to start my 100 day countdown again. That’s all for now. Chris
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Sunday, 3/07/04
(Day –15)
Red=9.1
White=90
Platelets=9
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So far today both the Physician’s Assistant and Nurse have came in to see me and let me know that I probably lost my graft, which will mean a second transplant (from the same donor). They are still telling me to wait until we get the test results tomorrow from the last test, that there may be something else to do, but it’s not looking good. They have told me that they have seen many patients graft the second time around and it work wonderfully, so this isn’t the end of the world, just another bump in the road. They say it will take two to three weeks before getting the second sample, but they do the second sample a little different so that when it gets inside me, it grows a little faster and is more mature. I guess this may cause a few more problems down the road, but we’ll have to deal with them as they come.
Now I’m starting to get scared. I know that I have to hang in there and fight, but everything starts out doing well, and then something happens and it set us back. I’m running out of options. If the second transplant (from the first donor) doesn’t work, they will go to one of my other donors and try to get them to donate, then go from there. If nothing catches on and grafts, than I’m just out of luck. My backup harvest (when they took my marrow to replace incase nothing else worked) was laced with Leukemia, so that would not be used, so I would just be stuck with no immune system and would have a few months max to live.
I could really use some support right now, whether it be an email, card in the mail, phone call, or visit, because as I mentioned above things are getting rough with nothing seaming to work right. Click here for Address and directions if you decide to come down or send something.
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Saturday, 3/06/04
(Day 32)
Red=9.9
White=220
Platelets=9
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White Count Still Dropping. They still aren’t sure what’s making the white count drop. They stated me on some high dose steroids to try to help, but so far there has been no improvement. Will have to see what happens to the white count on Sunday, and we are still waiting for a test to come back on Monday. It is starting to look like I’ll be needing a second transplant though. So I’ll end up stuck down here for about another month in the hospital, and get to restart my 100 day countdown to come back home.
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Friday, 3/05/04
(Day 31)
Red=10.2
White=570
Platelets=11
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BAD NEWS: For some reason my white count dropped in half last night, so I don’t get to get out today. The Dr. isn’t quite sure what made this happen, so they are doing a bunch of tests. .They say it could be one of like four or five things pulling it down. It could be anything from a virus that they can treat, to my immune system fighting it back, to a loss of the graft (which would require another transplant). The good news though is that one of the tests came back today and showed that there is still NO LEUKEMIA and that there is still donor bone marrow where it is supposed to be. So hopefully this is just a little setback. I’ll let you guys know when I know more, and thanks for all the prayers and good wishes.
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Thursday, 3/04/04
(Day 30)
Red=10.1
White=1060
Platelets=17
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Now it’s looking like for sure I’ll be able to get out tomorrow (Friday). As long an the counts don’t go down. They are giving me my last IV Medications, and are going to unhook me from the IV in an hour (3:40), and I don’t think that they would unhook me unless they were really planning to let me go. The Dr. said that my cough is nothing to worry about right now, my mouth is still looking good.
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Wednesday, 3/03/04
(Day 29)
Red=9.8
White=870
Platelets=15
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Well, no going home today. My White Blood Cells dropped again, and they want them to be steady over 1000 before I get out. They think the count could be going down from a blood virus, so they are checking for that. Now when I’m writing this, I have a little cough going, so that may be it also. Hopefully they will be able to just give me something for it and send me home Friday, but I think they’ll end up keeping me another week or so.
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